% alzhub.org library filter % Source: https://alzhub.org/research?atag=planning % 500 entries, in the order the page lists them. Built from alzhub.org's own records. % 0 entries have no readable author in the source record and carry no author field. @article{walsh2021-34582034, author = {Walsh, S. C. and Murphy, E. and Devane, D. and Sampson, E. L. and Connolly, S. and Carney, P. and O'Shea, E.}, title = {{Palliative care interventions in advanced dementia}}, journal = {The Cochrane database of systematic reviews}, year = {2021}, doi = {10.1002/14651858.cd011513.pub3}, pmid = {34582034}, url = {https://doi.org/10.1002/14651858.cd011513.pub3} } @article{mitchell2018-29868778, author = {Mitchell, S. L. and Shaffer, M. L. and Cohen, S. and Hanson, L. C. and Habtemariam, D. and Volandes, A. E.}, title = {{An Advance Care Planning Video Decision Support Tool for Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial}}, journal = {JAMA internal medicine}, year = {2018}, doi = {10.1001/jamainternmed.2018.1506}, pmid = {29868778}, url = {https://doi.org/10.1001/jamainternmed.2018.1506} } @article{reuben2025-39878968, author = {Reuben, D. B. and Gill, T. M. and Stevens, A. and Williamson, J. and Volpi, E. and Lichtenstein, M. and Jennings, L. A. and others}, title = {{Health System, Community-Based, or Usual Dementia Care for Persons With Dementia and Caregivers: The D-CARE Randomized Clinical Trial}}, journal = {JAMA}, year = {2025}, doi = {10.1001/jama.2024.25056}, pmid = {39878968}, url = {https://doi.org/10.1001/jama.2024.25056} } @article{volandes2009-19477893, author = {Volandes, A. E. and Paasche-Orlow, M. K. and Barry, M. J. and Gillick, M. R. and Minaker, K. L. and Chang, Y. and Cook, E. F. and Abbo, E. D. and others}, title = {{Video decision support tool for advance care planning in dementia: randomised controlled trial}}, journal = {BMJ (Clinical research ed.)}, year = {2009}, doi = {10.1136/bmj.b2159}, pmid = {19477893}, url = {https://doi.org/10.1136/bmj.b2159} } @article{murphy2016-27911489, author = {Murphy, E. and Froggatt, K. and Connolly, S. and O'Shea, E. and Sampson, E. L. and Casey, D. and Devane, D.}, title = {{Palliative care interventions in advanced dementia}}, journal = {The Cochrane database of systematic reviews}, year = {2016}, doi = {10.1002/14651858.cd011513.pub2}, pmid = {27911489}, url = {https://doi.org/10.1002/14651858.cd011513.pub2} } @article{tilburgs2020-31759901, author = {Tilburgs, B. and Koopmans, R. and Vernooij-Dassen, M. and Adang, E. and Schers, H. and Teerenstra, S. and van de Pol, M. and Smits, C. and others}, title = {{Educating Dutch General Practitioners in Dementia Advance Care Planning: A Cluster Randomized Controlled Trial}}, journal = {Journal of the American Medical Directors Association}, year = {2020}, doi = {10.1016/j.jamda.2019.09.010}, pmid = {31759901}, url = {https://doi.org/10.1016/j.jamda.2019.09.010} } @article{adelman2014-24618967, author = {Adelman, R. D. and Tmanova, L. L. and Delgado, D. and Dion, S. and Lachs, M. S.}, title = {{Caregiver burden: a clinical review}}, journal = {JAMA}, year = {2014}, doi = {10.1001/jama.2014.304}, pmid = {24618967}, url = {https://doi.org/10.1001/jama.2014.304} } @article{hanson2017-27893884, author = {Hanson, L. C. and Zimmerman, S. and Song, M. K. and Lin, F. C. and Rosemond, C. and Carey, T. S. and Mitchell, S. L.}, title = {{Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial}}, journal = {JAMA internal medicine}, year = {2017}, doi = {10.1001/jamainternmed.2016.7031}, pmid = {27893884}, url = {https://doi.org/10.1001/jamainternmed.2016.7031} } @article{mitchell2017-28797857, author = {Mitchell, S. L. and Palmer, J. A. and Volandes, A. E. and Hanson, L. C. and Habtemariam, D. and Shaffer, M. L.}, title = {{Level of Care Preferences Among Nursing Home Residents With Advanced Dementia}}, journal = {Journal of pain and symptom management}, year = {2017}, doi = {10.1016/j.jpainsymman.2017.04.020}, pmid = {28797857}, url = {https://doi.org/10.1016/j.jpainsymman.2017.04.020} } @article{cohen2019-30273717, author = {Cohen, S. M. and Volandes, A. E. and Shaffer, M. L. and Hanson, L. C. and Habtemariam, D. and Mitchell, S. L.}, title = {{Concordance Between Proxy Level of Care Preference and Advance Directives Among Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial}}, journal = {Journal of pain and symptom management}, year = {2019}, doi = {10.1016/j.jpainsymman.2018.09.018}, pmid = {30273717}, url = {https://doi.org/10.1016/j.jpainsymman.2018.09.018} } @article{sachs2025-39878993, author = {Sachs, G. A. and Johnson, N. M. and Gao, S. and Torke, A. M. and Hickman, S. E. and Pemberton, A. and Vrobel, A. and Pan, M. and West, J. and Kroenke, K.}, title = {{Palliative Care Program for Community-Dwelling Individuals With Dementia and Caregivers: The IN-PEACE Randomized Clinical Trial}}, journal = {JAMA}, year = {2025}, doi = {10.1001/jama.2024.25845}, pmid = {39878993}, url = {https://doi.org/10.1001/jama.2024.25845} } @article{possin2019-31566651, author = {Possin, K. L. and Merrilees, J. J. and Dulaney, S. and Bonasera, S. J. and Chiong, W. and Lee, K. and Hooper, S. M. and Allen, I. E. and others}, title = {{Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial}}, journal = {JAMA internal medicine}, year = {2019}, doi = {10.1001/jamainternmed.2019.4101}, pmid = {31566651}, url = {https://doi.org/10.1001/jamainternmed.2019.4101} } @article{graff2006-17114212, author = {Graff, M. J. and Vernooij-Dassen, M. J. and Thijssen, M. and Dekker, J. and Hoefnagels, W. H. and Rikkert, M. G.}, title = {{Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial}}, journal = {BMJ (Clinical research ed.)}, year = {2006}, doi = {10.1136/bmj.39001.688843.be}, pmid = {17114212}, url = {https://doi.org/10.1136/bmj.39001.688843.be} } @article{bonner2021-32308012, author = {Bonner, G. J. and Freels, S. and Ferrans, C. and Steffen, A. and Suarez, M. L. and Dancy, B. L. and Watkins, Y. J. and Collinge, W. and others}, title = {{Advance Care Planning for African American Caregivers of Relatives With Dementias: Cluster Randomized Controlled Trial}}, journal = {The American journal of hospice \& palliative care}, year = {2021}, doi = {10.1177/1049909120916127}, pmid = {32308012}, url = {https://doi.org/10.1177/1049909120916127} } @article{woods2018-29493789, author = {Woods, B. and O'Philbin, L. and Farrell, E. M. and Spector, A. E. and Orrell, M.}, title = {{Reminiscence therapy for dementia}}, journal = {The Cochrane database of systematic reviews}, year = {2018}, doi = {10.1002/14651858.cd001120.pub3}, pmid = {29493789}, url = {https://doi.org/10.1002/14651858.cd001120.pub3} } @article{thyrian2017-28746708, author = {Thyrian, JR. and Hertel, J. and Wucherer, D. and Eichler, T. and Michalowsky, B. and Dreier-Wolfgramm, A. and Zwingmann, I. and Kilimann, I. and others}, title = {{Effectiveness and Safety of Dementia Care Management in Primary Care: A Randomized Clinical Trial}}, journal = {JAMA psychiatry}, year = {2017}, doi = {10.1001/jamapsychiatry.2017.2124}, pmid = {28746708}, url = {https://doi.org/10.1001/jamapsychiatry.2017.2124} } @article{agar2017-28786995, author = {Agar, M. and Luckett, T. and Luscombe, G. and Phillips, J. and Beattie, E. and Pond, D. and Mitchell, G. and Davidson, P. M. and others}, title = {{Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial}}, journal = {PloS one}, year = {2017}, doi = {10.1371/journal.pone.0181020}, pmid = {28786995}, url = {https://doi.org/10.1371/journal.pone.0181020} } @article{mo2021-33655535, author = {Mo, L. and Geng, Y. and Chang, Y. K. and Philip, J. and Collins, A. and Hui, D.}, title = {{Referral criteria to specialist palliative care for patients with dementia: A systematic review}}, journal = {Journal of the American Geriatrics Society}, year = {2021}, doi = {10.1111/jgs.17070}, pmid = {33655535}, url = {https://doi.org/10.1111/jgs.17070} } @article{sampson2008-18620567, author = {Sampson, E. L. and Thuné-Boyle, I. and Kukkastenvehmas, R. and Jones, L. and Tookman, A. and King, M. and Blanchard, M. R.}, title = {{Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention}}, journal = {BMC palliative care}, year = {2008}, doi = {10.1186/1472-684x-7-8}, pmid = {18620567}, url = {https://doi.org/10.1186/1472-684x-7-8} } @article{costello2019-30421691, author = {Costello, H. and Walsh, S. and Cooper, C. and Livingston, G.}, title = {{A systematic review and meta-analysis of the prevalence and associations of stress and burnout among staff in long-term care facilities for people with dementia}}, journal = {International psychogeriatrics}, year = {2019}, doi = {10.1017/s1041610218001606}, pmid = {30421691}, url = {https://doi.org/10.1017/s1041610218001606} } @article{mittelman2006-b972b154, author = {Mittelman, M. S. and Haley, W. E. and Clay, O. J. and Roth, D. L.}, title = {{Improving Caregiver Well-Being Delays Nursing Home Placement of Patients With Alzheimer Disease}}, journal = {Neurology}, year = {2006}, pmid = {17101889} } @article{vandersteen2025-40049590, author = {van der Steen, J. T. and van der Wouden, J. C. and Methley, A. M. and Smaling, H. J. A. and Vink, A. C. and Bruinsma, M. S.}, title = {{Music-based therapeutic interventions for people with dementia (Cochrane review update)}}, journal = {Cochrane Database of Systematic Reviews}, year = {2025}, doi = {10.1002/14651858.CD003477.pub5}, pmid = {40049590}, url = {https://doi.org/10.1002/14651858.CD003477.pub5} } @article{bruck2025-39778977, author = {Brück, C. C. and Mooldijk, S. S. and Kuiper, L. M. and Sambou, M. L. and Licher, S. and Mattace-Raso, F. and Wolters, F. J.}, title = {{Time to nursing home admission and death in people with dementia: systematic review and meta-analysis}}, journal = {BMJ}, year = {2025}, doi = {10.1136/bmj-2024-080636}, pmid = {39778977}, url = {https://doi.org/10.1136/bmj-2024-080636} } @article{mittelman2006-17101889, author = {Mittelman, M. S. and Haley, W. E. and Clay, O. J. and Roth, D. L.}, title = {{Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease}}, journal = {Neurology}, year = {2006}, doi = {10.1212/01.wnl.0000242727.81172.91}, pmid = {17101889}, url = {https://doi.org/10.1212/01.wnl.0000242727.81172.91} } @article{xiong2020-32310969, author = {Xiong, C. and Biscardi, M. and Astell, A. and Nalder, E. and Cameron, J. I. and Mihailidis, A. and Colantonio, A.}, title = {{Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review}}, journal = {PloS one}, year = {2020}, doi = {10.1371/journal.pone.0231848}, pmid = {32310969}, url = {https://doi.org/10.1371/journal.pone.0231848} } @article{rapaport2024-39366393, author = {Rapaport, P. and Amador, S. and Adeleke, M. O. and Barber, J. A. and Banerjee, S. and Charlesworth, G. and others}, title = {{Clinical effectiveness of DREAMS START (Dementia Related Manual for Sleep; Strategies for Relatives) versus usual care for people with dementia and their carers: a single-masked, phase 3, parallel-arm, superiority randomised controlled trial}}, journal = {The Lancet Healthy Longevity}, year = {2024}, doi = {10.1016/j.lanhl.2024.08.004}, pmid = {39366393}, url = {https://doi.org/10.1016/j.lanhl.2024.08.004} } @article{gitlin2010-20810376, author = {Gitlin, L. N. and Winter, L. and Dennis, M. P. and Hodgson, N. and Hauck, W. W.}, title = {{A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: the COPE randomized trial}}, journal = {JAMA}, year = {2010}, doi = {10.1001/jama.2010.1253}, pmid = {20810376}, url = {https://doi.org/10.1001/jama.2010.1253} } @article{chenoweth2009-19282246, author = {Chenoweth, L. and King, M. T. and Jeon, Y. H. and Brodaty, H. and Stein-Parbury, J. and Norman, R. and Haas, M. and Luscombe, G.}, title = {{Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial}}, journal = {The Lancet. Neurology}, year = {2009}, doi = {10.1016/s1474-4422(09)70045-6}, pmid = {19282246}, url = {https://doi.org/10.1016/s1474-4422(09)70045-6} } @article{galik2014-24092822, author = {Galik, E. and Resnick, B. and Hammersla, M. and Brightwater, J.}, title = {{Optimizing function and physical activity among nursing home residents with dementia: testing the impact of function-focused care}}, journal = {The Gerontologist}, year = {2014}, doi = {10.1093/geront/gnt108}, pmid = {24092822}, url = {https://doi.org/10.1093/geront/gnt108} } @article{dixon2018-28827062, author = {Dixon, J. and Karagiannidou, M. and Knapp, M.}, title = {{The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion}}, journal = {Journal of pain and symptom management}, year = {2018}, doi = {10.1016/j.jpainsymman.2017.04.009}, pmid = {28827062}, url = {https://doi.org/10.1016/j.jpainsymman.2017.04.009} } @article{brazil2018-28786323, author = {Brazil, K. and Carter, G. and Cardwell, C. and Clarke, M. and Hudson, P. and Froggatt, K. and McLaughlin, D. and Passmore, P. and others}, title = {{Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial}}, journal = {Palliative medicine}, year = {2018}, doi = {10.1177/0269216317722413}, pmid = {28786323}, url = {https://doi.org/10.1177/0269216317722413} } @article{hanson2019-30342242, author = {Hanson, L. C. and Kistler, C. E. and Lavin, K. and Gabriel, S. L. and Ernecoff, N. C. and Lin, F. C. and Sachs, G. A. and Mitchell, S. L.}, title = {{Triggered Palliative Care for Late-Stage Dementia: A Pilot Randomized Trial}}, journal = {Journal of pain and symptom management}, year = {2019}, doi = {10.1016/j.jpainsymman.2018.10.494}, pmid = {30342242}, url = {https://doi.org/10.1016/j.jpainsymman.2018.10.494} } @article{deardorff2022-36156062, author = {Deardorff, W. J. and Barnes, D. E. and Jeon, S. Y. and Boscardin, W. J. and Langa, K. M. and Covinsky, K. E. and Mitchell, S. L. and Whitlock, E. L. and others}, title = {{Development and External Validation of a Mortality Prediction Model for Community-Dwelling Older Adults With Dementia}}, journal = {JAMA internal medicine}, year = {2022}, doi = {10.1001/jamainternmed.2022.4326}, pmid = {36156062}, url = {https://doi.org/10.1001/jamainternmed.2022.4326} } @article{kelly2019-31177997, author = {Kelly, A. J. and Luckett, T. and Clayton, J. M. and Gabb, L. and Kochovska, S. and Agar, M.}, title = {{Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis}}, journal = {Palliative \& supportive care}, year = {2019}, doi = {10.1017/s1478951519000257}, pmid = {31177997}, url = {https://doi.org/10.1017/s1478951519000257} } @article{hanson2016-27271683, author = {Hanson, L. C. and Song, M. K. and Zimmerman, S. and Gilliam, R. and Rosemond, C. and Chisholm, L. and Lin, F. C.}, title = {{Fidelity to a behavioral intervention to improve goals of care decisions for nursing home residents with advanced dementia}}, journal = {Clinical trials (London, England)}, year = {2016}, doi = {10.1177/1740774516650863}, pmid = {27271683}, url = {https://doi.org/10.1177/1740774516650863} } @article{study2006-46801c00, author = {{REACH II Investigators}}, title = {{Enhancing the Quality of Life of Dementia Caregivers From Different Ethnic or Racial Groups: A Randomized, Controlled Trial}}, journal = {Annals of Internal Medicine}, year = {2006}, doi = {10.7326/0003-4819-145-10-200611210-00005}, pmid = {17116917}, url = {https://doi.org/10.7326/0003-4819-145-10-200611210-00005} } @article{michalowsky2024-38967926, author = {Michalowsky, B. and Blotenberg, I. and Platen, M. and Teipel, S. and Kilimann, I. and Portacolone, E. and Bohlken, J. and Rädke, A. and Buchholz, M. and Scharf, A. and Muehlichen, F. and Xie, F. and others}, title = {{Clinical Outcomes and Cost-Effectiveness of Collaborative Dementia Care: A Secondary Analysis of a Cluster Randomized Clinical Trial}}, journal = {JAMA Network Open}, year = {2024}, doi = {10.1001/jamanetworkopen.2024.19282}, pmid = {38967926}, url = {https://doi.org/10.1001/jamanetworkopen.2024.19282} } @article{kelley2015-26502320, author = {Kelley, A. S. and McGarry, K. and Gorges, R. and Skinner, J. S.}, title = {{The burden of health care costs for patients with dementia in the last 5 years of life}}, journal = {Annals of internal medicine}, year = {2015}, doi = {10.7326/m15-0381}, pmid = {26502320}, url = {https://doi.org/10.7326/m15-0381} } @article{martyr2018-29734962, author = {Martyr, A. and Nelis, S. M. and Quinn, C. and Wu, Y. T. and Lamont, R. A. and Henderson, C. and Clarke, R. and Hindle, J. V. and others}, title = {{Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia}}, journal = {Psychological medicine}, year = {2018}, doi = {10.1017/s0033291718000405}, pmid = {29734962}, url = {https://doi.org/10.1017/s0033291718000405} } @article{bunn2012-23118618, author = {Bunn, F. and Goodman, C. and Sworn, K. and Rait, G. and Brayne, C. and Robinson, L. and McNeilly, E. and Iliffe, S.}, title = {{Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies}}, journal = {PLoS medicine}, year = {2012}, doi = {10.1371/journal.pmed.1001331}, pmid = {23118618}, url = {https://doi.org/10.1371/journal.pmed.1001331} } @article{cristancholacroix2015-25967983, author = {Cristancho-Lacroix, V. and Wrobel, J. and Cantegreil-Kallen, I. and Dub, T. and Rouquette, A. and Rigaud, A. S.}, title = {{A web-based psychoeducational program for informal caregivers of patients with Alzheimer's disease: a pilot randomized controlled trial}}, journal = {Journal of medical Internet research}, year = {2015}, doi = {10.2196/jmir.3717}, pmid = {25967983}, url = {https://doi.org/10.2196/jmir.3717} } @article{dias2008-18523642, author = {Dias, A. and Dewey, M. E. and D'Souza, J. and Dhume, R. and Motghare, D. D. and Shaji, K. S. and Menon, R. and Prince, M. and others}, title = {{The effectiveness of a home care program for supporting caregivers of persons with dementia in developing countries: a randomised controlled trial from Goa, India}}, journal = {PloS one}, year = {2008}, doi = {10.1371/journal.pone.0002333}, pmid = {18523642}, url = {https://doi.org/10.1371/journal.pone.0002333} } @article{mohr2021-34542075, author = {Mohr, W. and Rädke, A. and Afi, A. and Edvardsson, D. and Mühlichen, F. and Platen, M. and Roes, M. and Michalowsky, B. and others}, title = {{Key Intervention Categories to Provide Person-Centered Dementia Care: A Systematic Review of Person-Centered Interventions}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2021}, doi = {10.3233/jad-210647}, pmid = {34542075}, url = {https://doi.org/10.3233/jad-210647} } @article{wang2019-31298717, author = {Wang, L. and Sha, L. and Lakin, JR. and Bynum, J. and Bates, D. W. and Hong, P. and Zhou, L.}, title = {{Development and Validation of a Deep Learning Algorithm for Mortality Prediction in Selecting Patients With Dementia for Earlier Palliative Care Interventions}}, journal = {JAMA network open}, year = {2019}, doi = {10.1001/jamanetworkopen.2019.6972}, pmid = {31298717}, url = {https://doi.org/10.1001/jamanetworkopen.2019.6972} } @article{mitchell2004-15187055, author = {Mitchell, S. L. and Kiely, D. K. and Hamel, M. B. and Park, P. S. and Morris, J. N. and Fries, B. E.}, title = {{Estimating prognosis for nursing home residents with advanced dementia}}, journal = {JAMA}, year = {2004}, doi = {10.1001/jama.291.22.2734}, pmid = {15187055}, url = {https://doi.org/10.1001/jama.291.22.2734} } @article{sampson2011-21228087, author = {Sampson, E. L. and Jones, L. and Thuné-Boyle, I. C. and Kukkastenvehmas, R. and King, M. and Leurent, B. and Tookman, A. and Blanchard, M. R.}, title = {{Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention}}, journal = {Palliative medicine}, year = {2011}, doi = {10.1177/0269216310391691}, pmid = {21228087}, url = {https://doi.org/10.1177/0269216310391691} } @article{berry2018-29801122, author = {Berry, S. D. and Rothbaum, R. R. and Kiel, D. P. and Lee, Y. and Mitchell, S. L.}, title = {{Association of Clinical Outcomes With Surgical Repair of Hip Fracture vs Nonsurgical Management in Nursing Home Residents With Advanced Dementia}}, journal = {JAMA internal medicine}, year = {2018}, doi = {10.1001/jamainternmed.2018.0743}, pmid = {29801122}, url = {https://doi.org/10.1001/jamainternmed.2018.0743} } @article{ahronheim2000-15859668, author = {Ahronheim, J. C. and Morrison, R. S. and Morris, J. and Baskin, S. and Meier, D. E.}, title = {{Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis}}, journal = {Journal of palliative medicine}, year = {2000}, doi = {10.1089/jpm.2000.3.265}, pmid = {15859668}, url = {https://doi.org/10.1089/jpm.2000.3.265} } @article{browne2021-34137314, author = {Browne, B. and Kupeli, N. and Moore, K. J. and Sampson, E. L. and Davies, N.}, title = {{Defining end of life in dementia: A systematic review}}, journal = {Palliative medicine}, year = {2021}, doi = {10.1177/02692163211025457}, pmid = {34137314}, url = {https://doi.org/10.1177/02692163211025457} } @article{sleeman2018-28838779, author = {Sleeman, K. E. and Perera, G. and Stewart, R. and Higginson, I. J.}, title = {{Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data}}, journal = {Alzheimer's \& dementia : the journal of the Alzheimer's Association}, year = {2018}, doi = {10.1016/j.jalz.2017.06.2267}, pmid = {28838779}, url = {https://doi.org/10.1016/j.jalz.2017.06.2267} } @article{geddisregan2021-33248009, author = {Geddis-Regan, A. and Errington, L. and Abley, C. and Wassall, R. and Exley, C. and Thomson, R.}, title = {{Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions}}, journal = {Health expectations : an international journal of public participation in health care and health policy}, year = {2021}, doi = {10.1111/hex.13167}, pmid = {33248009}, url = {https://doi.org/10.1111/hex.13167} } @article{song2019-31373868, author = {Song, M. K. and Ward, S. E. and Hepburn, K. and Paul, S. and Kim, H. and Shah, R. C. and Morhardt, D. J. and Medders, L. and others}, title = {{Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT}}, journal = {Journal of palliative medicine}, year = {2019}, doi = {10.1089/jpm.2019.0088}, pmid = {31373868}, url = {https://doi.org/10.1089/jpm.2019.0088} } @article{pinzon2013-23589742, author = {Pinzon, L. C. and Claus, M. and Perrar, K. M. and Zepf, K. I. and Letzel, S. and Weber, M.}, title = {{Dying with dementia: symptom burden, quality of care, and place of death}}, journal = {Deutsches Arzteblatt international}, year = {2013}, doi = {10.3238/arztebl.2013.0195}, pmid = {23589742}, url = {https://doi.org/10.3238/arztebl.2013.0195} } @article{goossens2020-31818522, author = {Goossens, B. and Sevenants, A. and Declercq, A. and Van Audenhove, C.}, title = {{Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care}}, journal = {Patient education and counseling}, year = {2020}, doi = {10.1016/j.pec.2019.11.024}, pmid = {31818522}, url = {https://doi.org/10.1016/j.pec.2019.11.024} } @article{stall2019-31418809, author = {Stall, N. M. and Fischer, H. D. and Fung, K. and Giannakeas, V. and Bronskill, S. E. and Austin, P. C. and Matlow, J. N. and Quinn, K. L. and others}, title = {{Sex-Specific Differences in End-of-Life Burdensome Interventions and Antibiotic Therapy in Nursing Home Residents With Advanced Dementia}}, journal = {JAMA network open}, year = {2019}, doi = {10.1001/jamanetworkopen.2019.9557}, pmid = {31418809}, url = {https://doi.org/10.1001/jamanetworkopen.2019.9557} } @article{burke2022-34389982, author = {Burke, R. E. and Xu, Y. and Ritter, A. Z. and Werner, R. M.}, title = {{Postacute care outcomes in home health or skilled nursing facilities in patients with a diagnosis of dementia}}, journal = {Health services research}, year = {2022}, doi = {10.1111/1475-6773.13855}, pmid = {34389982}, url = {https://doi.org/10.1111/1475-6773.13855} } @article{yu2018-29128685, author = {Yu, D. S. F. and Cheng, S. T. and Wang, J.}, title = {{Unravelling positive aspects of caregiving in dementia: An integrative review of research literature}}, journal = {International journal of nursing studies}, year = {2018}, doi = {10.1016/j.ijnurstu.2017.10.008}, pmid = {29128685}, url = {https://doi.org/10.1016/j.ijnurstu.2017.10.008} } @article{hopwood2018-29895512, author = {Hopwood, J. and Walker, N. and McDonagh, L. and Rait, G. and Walters, K. and Iliffe, S. and Ross, J. and Davies, N.}, title = {{Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review}}, journal = {Journal of medical Internet research}, year = {2018}, doi = {10.2196/jmir.9548}, pmid = {29895512}, url = {https://doi.org/10.2196/jmir.9548} } @article{kwok2025-40094667, author = {Kwok, J. Y. Y. and Cheung, D. S. K. and Zarit, S. and Cheung, K. S. and Lau, B. H. P. and Lou, V. W. and Cheng, S. T. and Gallagher-Thompson, D. and Qian, M. and Chou, K. L.}, title = {{Multicomponent Intervention for Distressed Informal Caregivers of People With Dementia: A Randomized Clinical Trial}}, journal = {JAMA Network Open}, year = {2025}, doi = {10.1001/jamanetworkopen.2025.0069}, pmid = {40094667}, url = {https://doi.org/10.1001/jamanetworkopen.2025.0069} } @article{prince2007-17659078, author = {Prince, M. and Ferri, C. P. and Acosta, D. and Albanese, E. and Arizaga, R. and Dewey, M. and Gavrilova, S. I. and Guerra, M. and others}, title = {{The protocols for the 10/66 dementia research group population-based research programme}}, journal = {BMC public health}, year = {2007}, doi = {10.1186/1471-2458-7-165}, pmid = {17659078}, url = {https://doi.org/10.1186/1471-2458-7-165} } @article{farina2017-28167069, author = {Farina, N. and Page, T. E. and Daley, S. and Brown, A. and Bowling, A. and Basset, T. and Livingston, G. and Knapp, M. and others}, title = {{Factors associated with the quality of life of family carers of people with dementia: A systematic review}}, journal = {Alzheimer's \& dementia : the journal of the Alzheimer's Association}, year = {2017}, doi = {10.1016/j.jalz.2016.12.010}, pmid = {28167069}, url = {https://doi.org/10.1016/j.jalz.2016.12.010} } @article{cheng2020-31985249, author = {Cheng, S. T. and Li, K. K. and Losada, A. and Zhang, F. and Au, A. and Thompson, L. W. and Gallagher-Thompson, D.}, title = {{The effectiveness of nonpharmacological interventions for informal dementia caregivers: An updated systematic review and meta-analysis}}, journal = {Psychology and aging}, year = {2020}, doi = {10.1037/pag0000401}, pmid = {31985249}, url = {https://doi.org/10.1037/pag0000401} } @article{petersen2017-27716673, author = {Petersen, S. and Houston, S. and Qin, H. and Tague, C. and Studley, J.}, title = {{The Utilization of Robotic Pets in Dementia Care}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2017}, doi = {10.3233/jad-160703}, pmid = {27716673}, url = {https://doi.org/10.3233/jad-160703} } @article{lin2022-35679046, author = {Lin, P. J. and Zhu, Y. and Olchanski, N. and Cohen, J. T. and Neumann, P. J. and Faul, J. D. and Fillit, H. M. and Freund, K. M.}, title = {{Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia}}, journal = {JAMA network open}, year = {2022}, doi = {10.1001/jamanetworkopen.2022.16260}, pmid = {35679046}, url = {https://doi.org/10.1001/jamanetworkopen.2022.16260} } @article{hanson2011-22091750, author = {Hanson, L. C. and Carey, T. S. and Caprio, A. J. and Lee, T. J. and Ersek, M. and Garrett, J. and Jackman, A. and Gilliam, R. and others}, title = {{Improving decision-making for feeding options in advanced dementia: a randomized, controlled trial}}, journal = {Journal of the American Geriatrics Society}, year = {2011}, doi = {10.1111/j.1532-5415.2011.03629.x}, pmid = {22091750}, url = {https://doi.org/10.1111/j.1532-5415.2011.03629.x} } @article{reinhardt2014-24835382, author = {Reinhardt, J. P. and Chichin, E. and Posner, L. and Kassabian, S.}, title = {{Vital conversations with family in the nursing home: preparation for end-stage dementia care}}, journal = {Journal of social work in end-of-life \& palliative care}, year = {2014}, doi = {10.1080/15524256.2014.906371}, pmid = {24835382}, url = {https://doi.org/10.1080/15524256.2014.906371} } @article{devleminck2018-29153752, author = {De Vleminck, A. and Morrison, R. S. and Meier, D. E. and Aldridge, M. D.}, title = {{Hospice Care for Patients With Dementia in the United States: A Longitudinal Cohort Study}}, journal = {Journal of the American Medical Directors Association}, year = {2018}, doi = {10.1016/j.jamda.2017.10.003}, pmid = {29153752}, url = {https://doi.org/10.1016/j.jamda.2017.10.003} } @article{mcwilliams2018-28718298, author = {McWilliams, L. and Farrell, C. and Grande, G. and Keady, J. and Swarbrick, C. and Yorke, J.}, title = {{A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care}}, journal = {Aging \& mental health}, year = {2018}, doi = {10.1080/13607863.2017.1348476}, pmid = {28718298}, url = {https://doi.org/10.1080/13607863.2017.1348476} } @article{miranda2019-31057088, author = {Miranda, R. and Bunn, F. and Lynch, J. and Van den Block, L. and Goodman, C.}, title = {{Palliative care for people with dementia living at home: A systematic review of interventions}}, journal = {Palliative medicine}, year = {2019}, doi = {10.1177/0269216319847092}, pmid = {31057088}, url = {https://doi.org/10.1177/0269216319847092} } @article{luth2020-31750935, author = {Luth, E. A. and Russell, D. J. and Brody, A. A. and Dignam, R. and Czaja, S. J. and Ryvicker, M. and Bowles, K. H. and Prigerson, H. G.}, title = {{Race, Ethnicity, and Other Risks for Live Discharge Among Hospice Patients with Dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2020}, doi = {10.1111/jgs.16242}, pmid = {31750935}, url = {https://doi.org/10.1111/jgs.16242} } @article{smaling2018-30327407, author = {Smaling, H. J. A. and Joling, K. J. and van de Ven, P. M. and Bosmans, J. E. and Simard, J. and Volicer, L. and Achterberg, W. P. and Francke, A. L. and others}, title = {{Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial}}, journal = {BMJ open}, year = {2018}, doi = {10.1136/bmjopen-2018-025411}, pmid = {30327407}, url = {https://doi.org/10.1136/bmjopen-2018-025411} } @article{lee2018-30044781, author = {Lee, K. C. and Hsu, W. H. and Chou, P. H. and Yiin, J. J. and Muo, C. H. and Lin, Y. P.}, title = {{Estimating the survival of elderly patients diagnosed with dementia in Taiwan: A longitudinal study}}, journal = {PloS one}, year = {2018}, doi = {10.1371/journal.pone.0178997}, pmid = {30044781}, url = {https://doi.org/10.1371/journal.pone.0178997} } @article{wiggins2019-30806452, author = {Wiggins, N. and Droney, J. and Mohammed, K. and Riley, J. and Sleeman, K. E.}, title = {{Understanding the factors associated with patients with dementia achieving their preferred place of death: a retrospective cohort study}}, journal = {Age and ageing}, year = {2019}, doi = {10.1093/ageing/afz015}, pmid = {30806452}, url = {https://doi.org/10.1093/ageing/afz015} } @article{tay2022-34634231, author = {Tay, R. and Tan, J. Y. S. and Hum, A. Y. M.}, title = {{Factors Associated With Family Caregiver Burden of Home-Dwelling Patients With Advanced Dementia}}, journal = {Journal of the American Medical Directors Association}, year = {2022}, doi = {10.1016/j.jamda.2021.09.012}, pmid = {34634231}, url = {https://doi.org/10.1016/j.jamda.2021.09.012} } @article{isaaq2025-39978389, author = {Isaaq, A. and Cooper, C. and Vickerstaff, V. and Barber, J. A. and Walters, K. and Lang, I. A. and Rapaport, P. and Orgeta, V. and Rockwood, K. and Butler, L. T. and Lord, K. and Livingston, G. and others}, title = {{Cost-utility of a new psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: an economic evaluation embedded within a randomised controlled trial}}, journal = {The Lancet Healthy Longevity}, year = {2025}, doi = {10.1016/j.lanhl.2024.100676}, pmid = {39978389}, url = {https://doi.org/10.1016/j.lanhl.2024.100676} } @article{sorensen2002-12040138, author = {Sörensen, S. and Pinquart, M. and Duberstein, P.}, title = {{How effective are interventions with caregivers? An updated meta-analysis}}, journal = {The Gerontologist}, year = {2002}, doi = {10.1093/geront/42.3.356}, pmid = {12040138}, url = {https://doi.org/10.1093/geront/42.3.356} } @article{vickrey2006-17116916, author = {Vickrey, B. G. and Mittman, B. S. and Connor, K. I. and Pearson, M. L. and Della Penna, R. D. and Ganiats, T. G. and Demonte, R. W. and Chodosh, J. and others}, title = {{The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial}}, journal = {Annals of internal medicine}, year = {2006}, doi = {10.7326/0003-4819-145-10-200611210-00004}, pmid = {17116916}, url = {https://doi.org/10.7326/0003-4819-145-10-200611210-00004} } @article{gilhooly2016-27193287, author = {Gilhooly, K. J. and Gilhooly, M. L. and Sullivan, M. P. and McIntyre, A. and Wilson, L. and Harding, E. and Woodbridge, R. and Crutch, S.}, title = {{A meta-review of stress, coping and interventions in dementia and dementia caregiving}}, journal = {BMC geriatrics}, year = {2016}, doi = {10.1186/s12877-016-0280-8}, pmid = {27193287}, url = {https://doi.org/10.1186/s12877-016-0280-8} } @article{lindeza2020-33055092, author = {Lindeza, P. and Rodrigues, M. and Costa, J. and Guerreiro, M. and Rosa, M. M.}, title = {{Impact of dementia on informal care: a systematic review of family caregivers' perceptions}}, journal = {BMJ supportive \& palliative care}, year = {2020}, doi = {10.1136/bmjspcare-2020-002242}, pmid = {33055092}, url = {https://doi.org/10.1136/bmjspcare-2020-002242} } @article{yu2022-35462001, author = {Yu, C. and Sommerlad, A. and Sakure, L. and Livingston, G.}, title = {{Socially assistive robots for people with dementia: Systematic review and meta-analysis of feasibility, acceptability and the effect on cognition, neuropsychiatric symptoms and quality of life}}, journal = {Ageing research reviews}, year = {2022}, doi = {10.1016/j.arr.2022.101633}, pmid = {35462001}, url = {https://doi.org/10.1016/j.arr.2022.101633} } @article{sloane2004-15507054, author = {Sloane, P. D. and Hoeffer, B. and Mitchell, C. M. and McKenzie, D. A. and Barrick, A. L. and Rader, J. and Stewart, B. J. and Talerico, K. A. and others}, title = {{Effect of person-centered showering and the towel bath on bathing-associated aggression, agitation, and discomfort in nursing home residents with dementia: a randomized, controlled trial}}, journal = {Journal of the American Geriatrics Society}, year = {2004}, doi = {10.1111/j.1532-5415.2004.52501.x}, pmid = {15507054}, url = {https://doi.org/10.1111/j.1532-5415.2004.52501.x} } @article{smith2017-28166234, author = {Smith, D. and Lovell, J. and Weller, C. and Kennedy, B. and Winbolt, M. and Young, C. and Ibrahim, J.}, title = {{A systematic review of medication non-adherence in persons with dementia or cognitive impairment}}, journal = {PloS one}, year = {2017}, doi = {10.1371/journal.pone.0170651}, pmid = {28166234}, url = {https://doi.org/10.1371/journal.pone.0170651} } @article{gao2019-31441938, author = {Gao, C. and Chapagain, N. Y. and Scullin, M. K.}, title = {{Sleep Duration and Sleep Quality in Caregivers of Patients With Dementia: A Systematic Review and Meta-analysis}}, journal = {JAMA network open}, year = {2019}, doi = {10.1001/jamanetworkopen.2019.9891}, pmid = {31441938}, url = {https://doi.org/10.1001/jamanetworkopen.2019.9891} } @article{blom2015-25679228, author = {Blom, M. M. and Zarit, S. H. and Groot Zwaaftink, R. B. and Cuijpers, P. and Pot, A. M.}, title = {{Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial}}, journal = {PloS one}, year = {2015}, doi = {10.1371/journal.pone.0116622}, pmid = {25679228}, url = {https://doi.org/10.1371/journal.pone.0116622} } @article{abdulazeem2025-39928936, author = {Abdulazeem, Hebatullah Mohamed and Nascimento, Israel Júnior Borges do and Weerasekara, Ishanka and Sharifan, Amin and Bianco, Véronique and Cunningham, Charnay and Kularathne, Indunil and Deeken, Genevieve and others}, title = {{Use of Digital Health Technologies for Dementia Care: Bibliometric Analysis and Report}}, journal = {JMIR Mental Health}, year = {2025}, doi = {10.2196/64445}, pmid = {39928936}, url = {https://doi.org/10.2196/64445} } @article{schulz2003-14614169, author = {Schulz, R. and Mendelsohn, A. B. and Haley, W. E. and Mahoney, D. and Allen, R. S. and Zhang, S. and Thompson, L. and Belle, S. H. and others}, title = {{End-of-life care and the effects of bereavement on family caregivers of persons with dementia}}, journal = {The New England journal of medicine}, year = {2003}, doi = {10.1056/nejmsa035373}, pmid = {14614169}, url = {https://doi.org/10.1056/nejmsa035373} } @article{mitchell2010-20621437, author = {Mitchell, S. L. and Miller, S. C. and Teno, J. M. and Davis, R. B. and Shaffer, M. L.}, title = {{The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia}}, journal = {Journal of pain and symptom management}, year = {2010}, doi = {10.1016/j.jpainsymman.2010.02.014}, pmid = {20621437}, url = {https://doi.org/10.1016/j.jpainsymman.2010.02.014} } @article{li2013-23772891, author = {Li, Q. and Zheng, N. T. and Temkin-Greener, H.}, title = {{Quality of end-of-life care of long-term nursing home residents with and without dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2013}, doi = {10.1111/jgs.12330}, pmid = {23772891}, url = {https://doi.org/10.1111/jgs.12330} } @article{ernecoff2018-29957095, author = {Ernecoff, N. C. and Zimmerman, S. and Mitchell, S. L. and Song, M. K. and Lin, F. C. and Wessell, K. L. and Hanson, L. C.}, title = {{Concordance between Goals of Care and Treatment Decisions for Persons with Dementia}}, journal = {Journal of palliative medicine}, year = {2018}, doi = {10.1089/jpm.2018.0103}, pmid = {29957095}, url = {https://doi.org/10.1089/jpm.2018.0103} } @article{scholzeldorenbos2007-17545745, author = {Schölzel-Dorenbos, C. J. and van der Steen, M. J. and Engels, L. K. and Olde Rikkert, M. G.}, title = {{Assessment of quality of life as outcome in dementia and MCI intervention trials: a systematic review}}, journal = {Alzheimer disease and associated disorders}, year = {2007}, doi = {10.1097/wad.0b013e318047df4c}, pmid = {17545745}, url = {https://doi.org/10.1097/wad.0b013e318047df4c} } @article{chen2018-29343186, author = {Chen, P. J. and Liang, F. W. and Ho, C. H. and Cheng, S. Y. and Chen, Y. C. and Chen, Y. H.}, title = {{Association between palliative care and life-sustaining treatments for patients with dementia: A nationwide 5-year cohort study}}, journal = {Palliative medicine}, year = {2018}, doi = {10.1177/0269216317751334}, pmid = {29343186}, url = {https://doi.org/10.1177/0269216317751334} } @article{ernecoff2018-29288881, author = {Ernecoff, N. C. and Wessell, K. L. and Gabriel, S. and Carey, T. S. and Hanson, L. C.}, title = {{A Novel Screening Method to Identify Late-Stage Dementia Patients for Palliative Care Research and Practice}}, journal = {Journal of pain and symptom management}, year = {2018}, doi = {10.1016/j.jpainsymman.2017.12.480}, pmid = {29288881}, url = {https://doi.org/10.1016/j.jpainsymman.2017.12.480} } @article{kelley2015-ed40db3a, author = {Kelley, A. S. and McGarry, K. and Gorges, R. and Skinner, J. S.}, title = {{The Burden of Health Care Costs for Patients With Dementia in the Last 5 Years of Life}}, journal = {Annals of Internal Medicine}, year = {2015}, pmid = {26502320} } @article{callahan2006-16684985, author = {Callahan, C. M. and Boustani, M. A. and Unverzagt, F. W. and Austrom, M. G. and Damush, T. M. and Perkins, A. J. and Fultz, B. A. and Hui, S. L. and others}, title = {{Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial}}, journal = {JAMA}, year = {2006}, doi = {10.1001/jama.295.18.2148}, pmid = {16684985}, url = {https://doi.org/10.1001/jama.295.18.2148} } @article{pinquart2003-12825775, author = {Pinquart, M. and Sörensen, S.}, title = {{Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis}}, journal = {Psychology and aging}, year = {2003}, doi = {10.1037/0882-7974.18.2.250}, pmid = {12825775}, url = {https://doi.org/10.1037/0882-7974.18.2.250} } @article{gitlin2001-11220813, author = {Gitlin, L. N. and Corcoran, M. and Winter, L. and Boyce, A. and Hauck, W. W.}, title = {{A randomized, controlled trial of a home environmental intervention: effect on efficacy and upset in caregivers and on daily function of persons with dementia}}, journal = {The Gerontologist}, year = {2001}, doi = {10.1093/geront/41.1.4}, pmid = {11220813}, url = {https://doi.org/10.1093/geront/41.1.4} } @article{connors2020-31821606, author = {Connors, M. H. and Seeher, K. and Teixeira-Pinto, A. and Woodward, M. and Ames, D. and Brodaty, H.}, title = {{Dementia and caregiver burden: A three-year longitudinal study}}, journal = {International journal of geriatric psychiatry}, year = {2020}, doi = {10.1002/gps.5244}, pmid = {31821606}, url = {https://doi.org/10.1002/gps.5244} } @article{yorozuya2019-31634894, author = {Yorozuya, K. and Kubo, Y. and Tomiyama, N. and Yamane, S. and Hanaoka, H.}, title = {{A Systematic Review of Multimodal Non-Pharmacological Interventions for Cognitive Function in Older People with Dementia in Nursing Homes}}, journal = {Dementia and geriatric cognitive disorders}, year = {2019}, doi = {10.1159/000503445}, pmid = {31634894}, url = {https://doi.org/10.1159/000503445} } @article{mitchell2004-15684848, author = {Mitchell, S. L. and Morris, J. N. and Park, P. S. and Fries, B. E.}, title = {{Terminal care for persons with advanced dementia in the nursing home and home care settings}}, journal = {Journal of palliative medicine}, year = {2004}, doi = {10.1089/jpm.2004.7.808}, pmid = {15684848}, url = {https://doi.org/10.1089/jpm.2004.7.808} } @article{rosenwax2015-25783598, author = {Rosenwax, L. and Spilsbury, K. and Arendts, G. and McNamara, B. and Semmens, J.}, title = {{Community-based palliative care is associated with reduced emergency department use by people with dementia in their last year of life: A retrospective cohort study}}, journal = {Palliative medicine}, year = {2015}, doi = {10.1177/0269216315576309}, pmid = {25783598}, url = {https://doi.org/10.1177/0269216315576309} } @article{jennings2019-30675898, author = {Jennings, L. A. and Turner, M. and Keebler, C. and Burton, C. H. and Romero, T. and Wenger, N. S. and Reuben, D. B.}, title = {{The Effect of a Comprehensive Dementia Care Management Program on End-of-Life Care}}, journal = {Journal of the American Geriatrics Society}, year = {2019}, doi = {10.1111/jgs.15769}, pmid = {30675898}, url = {https://doi.org/10.1111/jgs.15769} } @article{mataqi2020-30944119, author = {Mataqi, M. and Aslanpour, Z.}, title = {{Factors influencing palliative care in advanced dementia: a systematic review}}, journal = {BMJ supportive \& palliative care}, year = {2020}, doi = {10.1136/bmjspcare-2018-001692}, pmid = {30944119}, url = {https://doi.org/10.1136/bmjspcare-2018-001692} } @article{galik2017-27776986, author = {Galik, E. and Resnick, B. and Vigne, E. and Holmes, S. D. and Nalls, V.}, title = {{Reliability and Validity of the Resistiveness to Care Scale Among Cognitively Impaired Older Adults}}, journal = {Journal of the American Medical Directors Association}, year = {2017}, doi = {10.1016/j.jamda.2016.08.008}, pmid = {27776986}, url = {https://doi.org/10.1016/j.jamda.2016.08.008} } @article{durepos2017-28063859, author = {Durepos, P. and Wickson-Griffiths, A. and Hazzan, A. A. and Kaasalainen, S. and Vastis, V. and Battistella, L. and Papaioannou, A.}, title = {{Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review}}, journal = {Journal of pain and symptom management}, year = {2017}, doi = {10.1016/j.jpainsymman.2016.10.368}, pmid = {28063859}, url = {https://doi.org/10.1016/j.jpainsymman.2016.10.368} } @article{luckett2017-28651659, author = {Luckett, T. and Chenoweth, L. and Phillips, J. and Brooks, D. and Cook, J. and Mitchell, G. and Pond, D. and Davidson, P. M. and others}, title = {{A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: perceptions of palliative care planning coordinators and other health professionals in the IDEAL study}}, journal = {International psychogeriatrics}, year = {2017}, doi = {10.1017/s1041610217000977}, pmid = {28651659}, url = {https://doi.org/10.1017/s1041610217000977} } @article{maayan2014-7ba38cc8, author = {Maayan, N. and Soares-Weiser, K. and Lee, H.}, title = {{Respite Care for People With Dementia and Their Carers}}, journal = {Cochrane Database of Systematic Reviews}, year = {2014} } @article{liao2024-38752797, author = {Liao, X. and Wang, Z. and Zeng, Q. and Zeng, Y.}, title = {{Loneliness and social isolation among informal carers of individuals with dementia: A systematic review and meta-analysis}}, journal = {International Journal of Geriatric Psychiatry}, year = {2024}, doi = {10.1002/gps.6101}, pmid = {38752797}, url = {https://doi.org/10.1002/gps.6101} } @article{falzarano2026-42018322, author = {Falzarano, F. B. and Greenfield, A. and Saviano, S. C. and Kolla, S. and Korian, S. and Osso, F. and Miller, J. and Whitson, H. E. and Maciejewski, P. K. and Prigerson, H. G.}, title = {{Digital Reminiscence for Predeath Grief Among Family Caregivers of Patients With Dementia: A Pilot Randomized Clinical Trial}}, journal = {JAMA Network Open}, year = {2026}, doi = {10.1001/jamanetworkopen.2026.8278}, pmid = {42018322}, url = {https://doi.org/10.1001/jamanetworkopen.2026.8278} } @article{livingston2005-16263837, author = {Livingston, G. and Johnston, K. and Katona, C. and Paton, J. and Lyketsos, C. G. and {Old Age Task Force of the World Federation of Biological Psychiatry}}, title = {{Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia}}, journal = {The American journal of psychiatry}, year = {2005}, doi = {10.1176/appi.ajp.162.11.1996}, pmid = {16263837}, url = {https://doi.org/10.1176/appi.ajp.162.11.1996} } @article{toot2017-27806743, author = {Toot, S. and Swinson, T. and Devine, M. and Challis, D. and Orrell, M.}, title = {{Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis}}, journal = {International psychogeriatrics}, year = {2017}, doi = {10.1017/s1041610216001654}, pmid = {27806743}, url = {https://doi.org/10.1017/s1041610216001654} } @article{turner2004-15271637, author = {Turner, S. and Iliffe, S. and Downs, M. and Wilcock, J. and Bryans, M. and Levin, E. and Keady, J. and O'Carroll, R.}, title = {{General practitioners' knowledge, confidence and attitudes in the diagnosis and management of dementia}}, journal = {Age and ageing}, year = {2004}, doi = {10.1093/ageing/afh140}, pmid = {15271637}, url = {https://doi.org/10.1093/ageing/afh140} } @article{gitlin2010-20662955, author = {Gitlin, L. N. and Winter, L. and Dennis, M. P. and Hodgson, N. and Hauck, W. W.}, title = {{Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacological intervention}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2010.02971.x}, pmid = {20662955}, url = {https://doi.org/10.1111/j.1532-5415.2010.02971.x} } @article{elliott2010-20122038, author = {Elliott, A. F. and Burgio, L. D. and Decoster, J.}, title = {{Enhancing caregiver health: findings from the resources for enhancing Alzheimer's caregiver health II intervention}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2009.02631.x}, pmid = {20122038}, url = {https://doi.org/10.1111/j.1532-5415.2009.02631.x} } @article{coon2003-14570964, author = {Coon, D. W. and Thompson, L. and Steffen, A. and Sorocco, K. and Gallagher-Thompson, D.}, title = {{Anger and depression management: psychoeducational skill training interventions for women caregivers of a relative with dementia}}, journal = {The Gerontologist}, year = {2003}, doi = {10.1093/geront/43.5.678}, pmid = {14570964}, url = {https://doi.org/10.1093/geront/43.5.678} } @article{knopman1994-7991118, author = {Knopman, D. S. and Knapp, M. J. and Gracon, S. I. and Davis, C. S.}, title = {{The Clinician Interview-Based Impression (CIBI): a clinician's global change rating scale in Alzheimer's disease}}, journal = {Neurology}, year = {1994}, doi = {10.1212/wnl.44.12.2315}, pmid = {7991118}, url = {https://doi.org/10.1212/wnl.44.12.2315} } @article{vandersteen2014-24531163, author = {van der Steen, J. T. and van Soest-Poortvliet, M. C. and Hallie-Heierman, M. and Onwuteaka-Philipsen, B. D. and Deliens, L. and de Boer, M. E. and Van den Block, L. and van Uden, N. and others}, title = {{Factors associated with initiation of advance care planning in dementia: a systematic review}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2014}, doi = {10.3233/jad-131967}, pmid = {24531163}, url = {https://doi.org/10.3233/jad-131967} } @article{volandes2011-21254815, author = {Volandes, A. E. and Ferguson, L. A. and Davis, A. D. and Hull, N. C. and Green, M. J. and Chang, Y. and Deep, K. and Paasche-Orlow, M. K.}, title = {{Assessing end-of-life preferences for advanced dementia in rural patients using an educational video: a randomized controlled trial}}, journal = {Journal of palliative medicine}, year = {2011}, doi = {10.1089/jpm.2010.0299}, pmid = {21254815}, url = {https://doi.org/10.1089/jpm.2010.0299} } @article{mitchell2005-15673356, author = {Mitchell, Susan L. and Teno, Joan M. and Miller, Susan C. and Mor, Vincent}, title = {{A National Study of the Location of Death for Older Persons with Dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2005}, doi = {10.1111/j.1532-5415.2005.53118.x}, pmid = {15673356}, url = {https://doi.org/10.1111/j.1532-5415.2005.53118.x} } @article{gutermanelan2023-37721734, author = {Guterman Elan, L. and Kiekhofer Rachel, E. and Wood Andrew, J. and Elaine, Allen I and Kahn James, G. and Sarah, Dulaney and Merrilees Jennifer, J. and Kirby, Lee and others}, title = {{Care Ecosystem Collaborative Model and Health Care Costs in Medicare Beneficiaries With Dementia: A Secondary Analysis of a Randomized Clinical Trial}}, journal = {JAMA internal medicine}, year = {2023}, doi = {10.1001/jamainternmed.2023.4764}, pmid = {37721734}, url = {https://doi.org/10.1001/jamainternmed.2023.4764} } @article{betz2024-39531391, author = {Betz, M. E. and Portz, J. and Knoepke, C. and Ranney, M. L. and Fischer, S. M. and Peterson, R. A. and Johnson, R. L. and Omeragic, F. and Castaneda, M. and Greenway, E. and Matlock, D.}, title = {{The Effect of the "Safety in Dementia" Online Tool to Assist Decision Making for Caregivers of Persons With Dementia and Access to Firearms: A Randomized Trial}}, journal = {Annals of Internal Medicine}, year = {2024}, doi = {10.7326/ANNALS-24-00763}, pmid = {39531391}, url = {https://doi.org/10.7326/ANNALS-24-00763} } @article{sveinsdottir2025-41380710, author = {Sveinsdottir, V. and Assmus, J. and Schneider, J. and Baker, F. A. and Uçaner, B. and Kreutz, G. and Geretsegger, M. and others}, title = {{Clinical effectiveness of music interventions for dementia and depression in older people (MIDDEL): a multinational, cluster-randomised controlled trial}}, journal = {The Lancet Healthy Longevity}, year = {2025}, doi = {10.1016/j.lanhl.2025.100783}, pmid = {41380710}, url = {https://doi.org/10.1016/j.lanhl.2025.100783} } @article{mittelman2007-17804831, author = {Mittelman, M. S. and Roth, D. L. and Clay, O. J. and Haley, W. E.}, title = {{Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2007}, doi = {10.1097/jgp.0b013e31805d858a}, pmid = {17804831}, url = {https://doi.org/10.1097/jgp.0b013e31805d858a} } @article{pinquart2007-17379673, author = {Pinquart, M. and Sörensen, S.}, title = {{Correlates of physical health of informal caregivers: a meta-analysis}}, journal = {The journals of gerontology. Series B, Psychological sciences and social sciences}, year = {2007}, doi = {10.1093/geronb/62.2.p126}, pmid = {17379673}, url = {https://doi.org/10.1093/geronb/62.2.p126} } @article{yaffe2002-11966383, author = {Yaffe, K. and Fox, P. and Newcomer, R. and Sands, L. and Lindquist, K. and Dane, K. and Covinsky, K. E.}, title = {{Patient and caregiver characteristics and nursing home placement in patients with dementia}}, journal = {JAMA}, year = {2002}, doi = {10.1001/jama.287.16.2090}, pmid = {11966383}, url = {https://doi.org/10.1001/jama.287.16.2090} } @article{pinquart2006-16686964, author = {Pinquart, M. and Sörensen, S.}, title = {{Helping caregivers of persons with dementia: which interventions work and how large are their effects?}}, journal = {International psychogeriatrics}, year = {2006}, doi = {10.1017/s1041610206003462}, pmid = {16686964}, url = {https://doi.org/10.1017/s1041610206003462} } @article{kim2008-18420838, author = {Kim, Y. and Schulz, R.}, title = {{Family caregivers' strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving}}, journal = {Journal of aging and health}, year = {2008}, doi = {10.1177/0898264308317533}, pmid = {18420838}, url = {https://doi.org/10.1177/0898264308317533} } @article{feast2016-27345942, author = {Feast, A. and Moniz-Cook, E. and Stoner, C. and Charlesworth, G. and Orrell, M.}, title = {{A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being}}, journal = {International psychogeriatrics}, year = {2016}, doi = {10.1017/s1041610216000922}, pmid = {27345942}, url = {https://doi.org/10.1017/s1041610216000922} } @article{ostwald1999-10396888, author = {Ostwald, S. K. and Hepburn, K. W. and Caron, W. and Burns, T. and Mantell, R.}, title = {{Reducing caregiver burden: a randomized psychoeducational intervention for caregivers of persons with dementia}}, journal = {The Gerontologist}, year = {1999}, doi = {10.1093/geront/39.3.299}, pmid = {10396888}, url = {https://doi.org/10.1093/geront/39.3.299} } @article{morrison2000-10872012, author = {Morrison, R. S. and Siu, A. L.}, title = {{Survival in end-stage dementia following acute illness}}, journal = {JAMA}, year = {2000}, doi = {10.1001/jama.284.1.47}, pmid = {10872012}, url = {https://doi.org/10.1001/jama.284.1.47} } @article{robinson2012-22156555, author = {Robinson, L. and Dickinson, C. and Rousseau, N. and Beyer, F. and Clark, A. and Hughes, J. and Howel, D. and Exley, C.}, title = {{A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia}}, journal = {Age and ageing}, year = {2012}, doi = {10.1093/ageing/afr148}, pmid = {22156555}, url = {https://doi.org/10.1093/ageing/afr148} } @article{sampson2005-15945590, author = {Sampson, E. L. and Ritchie, C. W. and Lai, R. and Raven, P. W. and Blanchard, M. R.}, title = {{A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia}}, journal = {International psychogeriatrics}, year = {2005}, doi = {10.1017/s1041610205001018}, pmid = {15945590}, url = {https://doi.org/10.1017/s1041610205001018} } @article{lord2015-25870004, author = {Lord, K. and Livingston, G. and Cooper, C.}, title = {{A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia}}, journal = {International psychogeriatrics}, year = {2015}, doi = {10.1017/s1041610215000411}, pmid = {25870004}, url = {https://doi.org/10.1017/s1041610215000411} } @article{tjia2010-20406320, author = {Tjia, J. and Rothman, M. R. and Kiely, D. K. and Shaffer, M. L. and Holmes, H. M. and Sachs, G. A. and Mitchell, S. L.}, title = {{Daily medication use in nursing home residents with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2010.02819.x}, pmid = {20406320}, url = {https://doi.org/10.1111/j.1532-5415.2010.02819.x} } @article{lee2009-19716062, author = {Lee, M. and Chodosh, J.}, title = {{Dementia and life expectancy: what do we know?}}, journal = {Journal of the American Medical Directors Association}, year = {2009}, doi = {10.1016/j.jamda.2009.03.014}, pmid = {19716062}, url = {https://doi.org/10.1016/j.jamda.2009.03.014} } @article{haaksma2020-31843808, author = {Haaksma, M. L. and Eriksdotter, M. and Rizzuto, D. and Leoutsakos, J. S. and Olde Rikkert, M. G. M. and Melis, R. J. F. and Garcia-Ptacek, S.}, title = {{Survival time tool to guide care planning in people with dementia}}, journal = {Neurology}, year = {2020}, doi = {10.1212/wnl.0000000000008745}, pmid = {31843808}, url = {https://doi.org/10.1212/wnl.0000000000008745} } @article{badrakalimuthu2014-24128594, author = {Badrakalimuthu, V. and Barclay, S.}, title = {{Do people with dementia die at their preferred location of death? A systematic literature review and narrative synthesis}}, journal = {Age and ageing}, year = {2014}, doi = {10.1093/ageing/aft151}, pmid = {24128594}, url = {https://doi.org/10.1093/ageing/aft151} } @article{robinson2010-19946862, author = {Robinson, L. and Iliffe, S. and Brayne, C. and Goodman, C. and Rait, G. and Manthorpe, J. and Ashley, P. and Moniz-Cook, E. and others}, title = {{Primary care and dementia: 2. Long-term care at home: psychosocial interventions, information provision, carer support and case management}}, journal = {International journal of geriatric psychiatry}, year = {2010}, doi = {10.1002/gps.2405}, pmid = {19946862}, url = {https://doi.org/10.1002/gps.2405} } @article{carter2018-29603347, author = {Carter, G. and McLaughlin, D. and Kernohan, W. G. and Hudson, P. and Clarke, M. and Froggatt, K. and Passmore, P. and Brazil, K.}, title = {{The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study}}, journal = {Journal of advanced nursing}, year = {2018}, doi = {10.1111/jan.13576}, pmid = {29603347}, url = {https://doi.org/10.1111/jan.13576} } @article{connolly2012-22332675, author = {Connolly, A. and Sampson, E. L. and Purandare, N.}, title = {{End-of-life care for people with dementia from ethnic minority groups: a systematic review}}, journal = {Journal of the American Geriatrics Society}, year = {2012}, doi = {10.1111/j.1532-5415.2011.03754.x}, pmid = {22332675}, url = {https://doi.org/10.1111/j.1532-5415.2011.03754.x} } @article{dasch2018-29793476, author = {Dasch, B. and Bausewein, C. and Feddersen, B.}, title = {{Place of death in patients with dementia and the association with comorbidities: a retrospective population-based observational study in Germany}}, journal = {BMC palliative care}, year = {2018}, doi = {10.1186/s12904-018-0334-0}, pmid = {29793476}, url = {https://doi.org/10.1186/s12904-018-0334-0} } @article{pinquart2003-12646594, author = {Pinquart, M. and Sörensen, S.}, title = {{Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis}}, journal = {The journals of gerontology. Series B, Psychological sciences and social sciences}, year = {2003}, doi = {10.1093/geronb/58.2.p112}, pmid = {12646594}, url = {https://doi.org/10.1093/geronb/58.2.p112} } @article{brodaty2003-12752841, author = {Brodaty, H. and Green, A. and Koschera, A.}, title = {{Meta-analysis of psychosocial interventions for caregivers of people with dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2003}, doi = {10.1034/j.1600-0579.2003.00210.x}, pmid = {12752841}, url = {https://doi.org/10.1034/j.1600-0579.2003.00210.x} } @article{boots2014-23963684, author = {Boots, L. M. and de Vugt, M. E. and van Knippenberg, R. J. and Kempen, G. I. and Verhey, F. R.}, title = {{A systematic review of Internet-based supportive interventions for caregivers of patients with dementia}}, journal = {International journal of geriatric psychiatry}, year = {2014}, doi = {10.1002/gps.4016}, pmid = {23963684}, url = {https://doi.org/10.1002/gps.4016} } @article{vanderlee2014-24675045, author = {van der Lee, J. and Bakker, T. J. and Duivenvoorden, H. J. and Dröes, R. M.}, title = {{Multivariate models of subjective caregiver burden in dementia: a systematic review}}, journal = {Ageing research reviews}, year = {2014}, doi = {10.1016/j.arr.2014.03.003}, pmid = {24675045}, url = {https://doi.org/10.1016/j.arr.2014.03.003} } @article{amjad2016-27454945, author = {Amjad, H. and Carmichael, D. and Austin, A. M. and Chang, C. H. and Bynum, J. P.}, title = {{Continuity of Care and Health Care Utilization in Older Adults With Dementia in Fee-for-Service Medicare}}, journal = {JAMA internal medicine}, year = {2016}, doi = {10.1001/jamainternmed.2016.3553}, pmid = {27454945}, url = {https://doi.org/10.1001/jamainternmed.2016.3553} } @article{gonzalez2025-40412418, author = {Gonzalez, L. and Rapaport, P. and Livingston, G. and Amador, S. and Adeleke, M. O. and Barber, J. A. and others}, title = {{Cost-utility analysis of the DREAMS START intervention for people living with dementia and their carers: a within-trial economic evaluation}}, journal = {The Lancet Healthy Longevity}, year = {2025}, doi = {10.1016/j.lanhl.2025.100708}, pmid = {40412418}, url = {https://doi.org/10.1016/j.lanhl.2025.100708} } @article{cheng2019-31076215, author = {Cheng, S. T. and Chan, W. C. and Lam, L. C. W.}, title = {{Long-Term Outcomes of the Benefit-Finding Group Intervention for Alzheimer Family Caregivers: A Cluster-Randomized Double-Blind Controlled Trial}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2019}, doi = {10.1016/j.jagp.2019.03.013}, pmid = {31076215}, url = {https://doi.org/10.1016/j.jagp.2019.03.013} } @article{elalili2020-32887591, author = {El Alili, M. and Smaling, H. J. A. and Joling, K. J. and Achterberg, W. P. and Francke, A. L. and Bosmans, J. E. and van der Steen, J. T.}, title = {{Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial}}, journal = {BMC health services research}, year = {2020}, doi = {10.1186/s12913-020-05570-2}, pmid = {32887591}, url = {https://doi.org/10.1186/s12913-020-05570-2} } @article{selwood2007-17173977, author = {Selwood, A. and Johnston, K. and Katona, C. and Lyketsos, C. and Livingston, G.}, title = {{Systematic review of the effect of psychological interventions on family caregivers of people with dementia}}, journal = {Journal of affective disorders}, year = {2007}, doi = {10.1016/j.jad.2006.10.025}, pmid = {17173977}, url = {https://doi.org/10.1016/j.jad.2006.10.025} } @article{walter2020-33226434, author = {Walter, E. and Pinquart, M.}, title = {{How Effective Are Dementia Caregiver Interventions? An Updated Comprehensive Meta-Analysis}}, journal = {The Gerontologist}, year = {2020}, doi = {10.1093/geront/gnz118}, pmid = {33226434}, url = {https://doi.org/10.1093/geront/gnz118} } @article{xiao2025-41023309, author = {Xiao, Lily Dongxia and Ullah, Shahid and Yu, Ying and Meyer, Claudia and Chapman, Michael and Chen, Langduo and Tan, Kai Ping and McKechnie, Sue and others}, title = {{Effects of a virtual iSupport Program on carers and people with dementia}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70747}, pmid = {41023309}, url = {https://doi.org/10.1002/alz.70747} } @article{smaling2025-40684251, author = {Smaling, Hanneke J. A. and Joling, Karlijn J. and Rijnhart, Judith J. M. and Twisk, Jos W. R. and Achterberg, Wilco P. and Francke, Anneke L. and van der Steen, Jenny Theodora}, title = {{Namaste Care Family for people with dementia and family−A randomized controlled trial}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70495}, pmid = {40684251}, url = {https://doi.org/10.1002/alz.70495} } @article{tilburgs2018-29924837, author = {Tilburgs, B. and Vernooij-Dassen, M. and Koopmans, R. and van Gennip, H. and Engels, Y. and Perry, M.}, title = {{Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review}}, journal = {PloS one}, year = {2018}, doi = {10.1371/journal.pone.0198535}, pmid = {29924837}, url = {https://doi.org/10.1371/journal.pone.0198535} } @article{aasmul2018-30564163, author = {Aasmul, I. and Husebo, B. S. and Sampson, E. L. and Flo, E.}, title = {{Advance Care Planning in Nursing Homes - Improving the Communication Among Patient, Family, and Staff: Results From a Cluster Randomized Controlled Trial (COSMOS)}}, journal = {Frontiers in psychology}, year = {2018}, doi = {10.3389/fpsyg.2018.02284}, pmid = {30564163}, url = {https://doi.org/10.3389/fpsyg.2018.02284} } @article{cadigan2012-22982735, author = {Cadigan, R. O. and Grabowski, D. C. and Givens, J. L. and Mitchell, S. L.}, title = {{The quality of advanced dementia care in the nursing home: the role of special care units}}, journal = {Medical care}, year = {2012}, doi = {10.1097/mlr.0b013e31825dd713}, pmid = {22982735}, url = {https://doi.org/10.1097/mlr.0b013e31825dd713} } @article{gessert2006-16913985, author = {Gessert, C. E. and Haller, IV. and Kane, R. L. and Degenholtz, H.}, title = {{Rural-urban differences in medical care for nursing home residents with severe dementia at the end of life}}, journal = {Journal of the American Geriatrics Society}, year = {2006}, doi = {10.1111/j.1532-5415.2006.00824.x}, pmid = {16913985}, url = {https://doi.org/10.1111/j.1532-5415.2006.00824.x} } @article{keijzervanlaarhoven2020-33184079, author = {Keijzer-van Laarhoven, A. J. and Touwen, D. P. and Tilburgs, B. and van Tilborg-den Boeft, M. and Pees, C. and Achterberg, W. P. and van der Steen, J. T.}, title = {{Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies}}, journal = {BMJ open}, year = {2020}, doi = {10.1136/bmjopen-2020-038528}, pmid = {33184079}, url = {https://doi.org/10.1136/bmjopen-2020-038528} } @article{adelman2014-1b049335, author = {Adelman, R. D. and Tmanova, L. L. and Delgado, D. and Dion, S. and Lachs, M. S.}, title = {{Caregiver Burden: A Clinical Review}}, journal = {JAMA}, year = {2014}, pmid = {24618967} } @article{radke2025-41143334, author = {Rädke, A. and Michalowsky, B. and Kleinke, F. and Platen, M. and Scharf, A. and Pfaff, M. and Buchholz, M. and Mühlichen, F. and Penndorf, P. and Schade, S. and Dombrowski, J. and Lerch, P. E. M. and others}, title = {{Efficacy and cost-effectiveness of extended nursing roles in dementia care: Results of the cluster-randomized trial InDePendent}}, journal = {Alzheimer's \& Dementia}, year = {2025}, doi = {10.1002/alz.70727}, pmid = {41143334}, url = {https://doi.org/10.1002/alz.70727} } @article{belle2006-17116917, author = {Belle, S. H. and Burgio, L. and Burns, R. and Coon, D. and Czaja, S. J. and Gallagher-Thompson, D. and Gitlin, L. N. and Klinger, J. and others}, title = {{Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial}}, journal = {Annals of internal medicine}, year = {2006}, doi = {10.7326/0003-4819-145-10-200611210-00005}, pmid = {17116917}, url = {https://doi.org/10.7326/0003-4819-145-10-200611210-00005} } @article{finnema2005-15799079, author = {Finnema, E. and Dröes, R. M. and Ettema, T. and Ooms, M. and Adèr, H. and Ribbe, M. and van Tilburg, W.}, title = {{The effect of integrated emotion-oriented care versus usual care on elderly persons with dementia in the nursing home and on nursing assistants: a randomized clinical trial}}, journal = {International journal of geriatric psychiatry}, year = {2005}, doi = {10.1002/gps.1286}, pmid = {15799079}, url = {https://doi.org/10.1002/gps.1286} } @article{cheng2016-27401052, author = {Cheng, S. T. and Fung, H. H. and Chan, W. C. and Lam, L. C.}, title = {{Short-Term Effects of a Gain-Focused Reappraisal Intervention for Dementia Caregivers: A Double-Blind Cluster-Randomized Controlled Trial}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2016}, doi = {10.1016/j.jagp.2016.04.012}, pmid = {27401052}, url = {https://doi.org/10.1016/j.jagp.2016.04.012} } @article{prizer2020-32736164, author = {Prizer, L. P. and Kluger, B. M. and Sillau, S. and Katz, M. and Galifianakis, N. B. and Miyasaki, J. M.}, title = {{The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms}}, journal = {Parkinsonism \& related disorders}, year = {2020}, doi = {10.1016/j.parkreldis.2020.07.003}, pmid = {32736164}, url = {https://doi.org/10.1016/j.parkreldis.2020.07.003} } @article{teri1997-9224439, author = {Teri, L. and Logsdon, R. G. and Uomoto, J. and McCurry, S. M.}, title = {{Behavioral treatment of depression in dementia patients: a controlled clinical trial}}, journal = {The journals of gerontology. Series B, Psychological sciences and social sciences}, year = {1997}, doi = {10.1093/geronb/52b.4.p159}, pmid = {9224439}, url = {https://doi.org/10.1093/geronb/52b.4.p159} } @article{chiao2015-26058542, author = {Chiao, C. Y. and Wu, H. S. and Hsiao, C. Y.}, title = {{Caregiver burden for informal caregivers of patients with dementia: A systematic review}}, journal = {International nursing review}, year = {2015}, doi = {10.1111/inr.12194}, pmid = {26058542}, url = {https://doi.org/10.1111/inr.12194} } @article{garciacasal2017-26806365, author = {García-Casal, J. A. and Loizeau, A. and Csipke, E. and Franco-Martín, M. and Perea-Bartolomé, M. V. and Orrell, M.}, title = {{Computer-based cognitive interventions for people living with dementia: a systematic literature review and meta-analysis}}, journal = {Aging \& mental health}, year = {2017}, doi = {10.1080/13607863.2015.1132677}, pmid = {26806365}, url = {https://doi.org/10.1080/13607863.2015.1132677} } @article{hilgeman2014-24359036, author = {Hilgeman, M. M. and Allen, R. S. and Snow, A. L. and Durkin, D. W. and DeCoster, J. and Burgio, L. D.}, title = {{Preserving Identity and Planning for Advance Care (PIPAC): preliminary outcomes from a patient-centered intervention for individuals with mild dementia}}, journal = {Aging \& mental health}, year = {2014}, doi = {10.1080/13607863.2013.868403}, pmid = {24359036}, url = {https://doi.org/10.1080/13607863.2013.868403} } @article{yuan2025-40461148, author = {Yuan, Shuai and Zhang, Fengying and Pu, Lihui and Lv, Juan and Xie, Xiaofeng and Lin, Lin and Qiu, Mengying and Huang, Lei and others}, title = {{Social support interventions for caregivers of older adults with dementia: a scoping review}}, journal = {BMJ Open}, year = {2025}, doi = {10.1136/bmjopen-2024-095815}, pmid = {40461148}, url = {https://doi.org/10.1136/bmjopen-2024-095815} } @article{ye2025-40324768, author = {Ye, Mengfei and Liu, Zheng and Xie, Weigen and Shou, Mengna and Wang, S J and Lin, Xuebing and Xu, Yan and Yao, Miner and others}, title = {{Implementation of Telemedicine for Patients With Dementia and Their Caregivers: Scoping Review}}, journal = {Journal of Medical Internet Research}, year = {2025}, doi = {10.2196/65667}, pmid = {40324768}, url = {https://doi.org/10.2196/65667} } @article{lai2025-41081724, author = {Lai, Po-Hsuan and Chang, Ting-Chun and Zhan, Hao‐Su and Chao, C.C. and Huang, Mei‐Chih and Mudiyanselage, Sriyani Padmalatha Konara and Lin, Shih‐Chun}, title = {{Impact of Specialty and Nonspecialty Palliative Care on Quality of Dying With Alzheimer's Disease or Related Dementias}}, journal = {Medical Care}, year = {2025}, doi = {10.1097/mlr.0000000000002199}, pmid = {41081724}, url = {https://doi.org/10.1097/mlr.0000000000002199} } @article{pinquart2003-c8319e3f, author = {Pinquart, M. and Sörensen, S.}, title = {{Differences Between Caregivers and Noncaregivers in Psychological Health and Physical Health: A Meta-Analysis}}, journal = {Psychology and Aging}, year = {2003}, pmid = {12825775} } @article{gerlach2025-41085983, author = {Gerlach, L. B. and Zhang, L. and Kim, H. M. and Teno, J. and Maust, D. T.}, title = {{Benzodiazepine or Antipsychotic Use and Mortality Risk Among Patients With Dementia in Hospice Care}}, journal = {JAMA Network Open}, year = {2025}, doi = {10.1001/jamanetworkopen.2025.37551}, pmid = {41085983}, url = {https://doi.org/10.1001/jamanetworkopen.2025.37551} } @article{cheng2026-41644333, author = {Cheng, Sheung-Tak and Ng, Peter H F}, title = {{Intervention Without Borders - an Automated Self-Guided AI-Enhanced Psychoeducation Intervention for Dementia Caregivers: Parallel-Group Randomized Waitlist-Controlled Trial}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2026}, doi = {10.1016/j.jagp.2026.01.001}, pmid = {41644333}, url = {https://doi.org/10.1016/j.jagp.2026.01.001} } @article{han2026-42233272, author = {Han, Hae-Ra and Perrin, Nancy and Yun, Ji-Young and Min, Deborah and Kwon, Simona C and Joo, Jinhui and Cho, Ji-Young and Kim, Sara and others}, title = {{Efficacy of a language-concordant community health worker intervention to improve community-to-clinic linkage for dementia care: results of the randomized trial PLAN}}, journal = {Alzheimer's \& dementia : the journal of the Alzheimer's Association}, year = {2026}, doi = {10.1002/alz.71541}, pmid = {42233272}, url = {https://doi.org/10.1002/alz.71541} } @article{duggleby2019-31625947, author = {Duggleby, W. and Ploeg, J. and McAiney, C. and Fisher, K. and Jovel Ruiz, K. and Ghosh, S. and Peacock, S. and Markle-Reid, M. and others}, title = {{A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis}}, journal = {Journal of medical Internet research}, year = {2019}, doi = {10.2196/14254}, pmid = {31625947}, url = {https://doi.org/10.2196/14254} } @article{brett2016-26432622, author = {Brett, L. and Traynor, V. and Stapley, P.}, title = {{Effects of Physical Exercise on Health and Well-Being of Individuals Living With a Dementia in Nursing Homes: A Systematic Review}}, journal = {Journal of the American Medical Directors Association}, year = {2016}, doi = {10.1016/j.jamda.2015.08.016}, pmid = {26432622}, url = {https://doi.org/10.1016/j.jamda.2015.08.016} } @article{monizcook2008-18297476, author = {Moniz-Cook, E. and Vernooij-Dassen, M. and Woods, R. and Verhey, F. and Chattat, R. and De Vugt, M. and Mountain, G. and O'Connell, M. and others}, title = {{A European consensus on outcome measures for psychosocial intervention research in dementia care}}, journal = {Aging \& mental health}, year = {2008}, doi = {10.1080/13607860801919850}, pmid = {18297476}, url = {https://doi.org/10.1080/13607860801919850} } @article{ornstein2012-22612881, author = {Ornstein, K. and Gaugler, J. E.}, title = {{The problem with "problem behaviors": a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient-caregiver dyad}}, journal = {International psychogeriatrics}, year = {2012}, doi = {10.1017/s1041610212000737}, pmid = {22612881}, url = {https://doi.org/10.1017/s1041610212000737} } @article{dam2016-26857890, author = {Dam, A. E. and de Vugt, M. E. and Klinkenberg, I. P. and Verhey, F. R. and van Boxtel, M. P.}, title = {{A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?}}, journal = {Maturitas}, year = {2016}, doi = {10.1016/j.maturitas.2015.12.008}, pmid = {26857890}, url = {https://doi.org/10.1016/j.maturitas.2015.12.008} } @article{quinn2019-30597058, author = {Quinn, C. and Toms, G.}, title = {{Influence of Positive Aspects of Dementia Caregiving on Caregivers' Well-Being: A Systematic Review}}, journal = {The Gerontologist}, year = {2019}, doi = {10.1093/geront/gny168}, pmid = {30597058}, url = {https://doi.org/10.1093/geront/gny168} } @article{beauchamp2005-16326661, author = {Beauchamp, N. and Irvine, A. B. and Seeley, J. and Johnson, B.}, title = {{Worksite-based internet multimedia program for family caregivers of persons with dementia}}, journal = {The Gerontologist}, year = {2005}, doi = {10.1093/geront/45.6.793}, pmid = {16326661}, url = {https://doi.org/10.1093/geront/45.6.793} } @article{yuan2025-40925598, author = {Yuan, Shasha and Zhang, Jingbin and Wang, Zheng and Wang, Huali and Xia, Mengfen}, title = {{Supporting Informal Dementia Caregivers Through an iSupport Web-Based Primary Health Care Intervention: Hybrid Effectiveness-Implementation Mixed Methods Study}}, journal = {Journal of Medical Internet Research}, year = {2025}, doi = {10.2196/77688}, pmid = {40925598}, url = {https://doi.org/10.2196/77688} } @article{amador2025-40116618, author = {Amador, Sarah and Livingston, Gill and Adeleke, Mariam Olaide and Barber, Julie and Webster, Lucy Anne and Yuan, Hang and Banerjee, Sube and Bhojwani, Ankita and others}, title = {{Process evaluation in a randomised controlled trial of DREAMS-START (dementia related manual for sleep; strategies for relatives) for sleep disturbance in people with dementia and their carers}}, journal = {Age and Ageing}, year = {2025}, doi = {10.1093/ageing/afaf053}, pmid = {40116618}, url = {https://doi.org/10.1093/ageing/afaf053} } @article{jiaming2023-37227755, author = {Jiaming, Liang and Aranda Maria, P.}, title = {{The Use of Telehealth Among People Living With Dementia-Caregiver Dyads During the COVID-19 Pandemic: Scoping Review}}, journal = {Journal of medical Internet research}, year = {2023}, doi = {10.2196/45045}, pmid = {37227755}, url = {https://doi.org/10.2196/45045} } @article{mitchell2010-21045099, author = {Mitchell, S. L. and Miller, S. C. and Teno, J. M. and Kiely, D. K. and Davis, R. B. and Shaffer, M. L.}, title = {{Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines}}, journal = {JAMA}, year = {2010}, doi = {10.1001/jama.2010.1572}, pmid = {21045099}, url = {https://doi.org/10.1001/jama.2010.1572} } @article{brown2013-23175514, author = {Brown, M. A. and Sampson, E. L. and Jones, L. and Barron, A. M.}, title = {{Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review}}, journal = {Palliative medicine}, year = {2013}, doi = {10.1177/0269216312465649}, pmid = {23175514}, url = {https://doi.org/10.1177/0269216312465649} } @article{schonwetter2003-12693642, author = {Schonwetter, R. S. and Han, B. and Small, B. J. and Martin, B. and Tope, K. and Haley, W. E.}, title = {{Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines}}, journal = {The American journal of hospice \& palliative care}, year = {2003}, doi = {10.1177/104990910302000208}, pmid = {12693642}, url = {https://doi.org/10.1177/104990910302000208} } @article{aminoff2006-16926196, author = {Aminoff, B. Z. and Adunsky, A.}, title = {{Their last 6 months: suffering and survival of end-stage dementia patients}}, journal = {Age and ageing}, year = {2006}, doi = {10.1093/ageing/afl067}, pmid = {16926196}, url = {https://doi.org/10.1093/ageing/afl067} } @article{williamson2021-34273269, author = {Williamson, L. E. and Evans, C. J. and Cripps, R. L. and Leniz, J. and Yorganci, E. and Sleeman, K. E.}, title = {{Factors Associated With Emergency Department Visits by People With Dementia Near the End of Life: A Systematic Review}}, journal = {Journal of the American Medical Directors Association}, year = {2021}, doi = {10.1016/j.jamda.2021.06.012}, pmid = {34273269}, url = {https://doi.org/10.1016/j.jamda.2021.06.012} } @article{stevens2025-41085219, author = {Stevens, A. B. and Cho, J. and Birchfield, T. and Reese, J. and Han, G. and Thorud, J. L. and Ory, M. G.}, title = {{A randomized trial of two online platforms for dementia family caregivers: GamePlan4Care and Resources4Care}}, journal = {Alzheimer's \& Dementia}, year = {2025}, doi = {10.1002/alz.70690}, pmid = {41085219}, url = {https://doi.org/10.1002/alz.70690} } @article{brijnath2026-41719424, author = {Brijnath, Bianca and Dang, Thu Ha and Enticott, Joanne and Tian, Yuan and Markusevska, Simona and Antoniades, Josefine and Nguyen, Tuan Anh and Gilbert, Andrew and others}, title = {{Evaluating the effects of the World Health Organisation's online intervention 'iSupport lite' to reduce burden in multilingual dementia carers: results from the Australian Draw-Care randomised clinical trial}}, journal = {Age and ageing}, year = {2026}, doi = {10.1093/ageing/afag030}, pmid = {41719424}, url = {https://doi.org/10.1093/ageing/afag030} } @article{xue2026-41690252, author = {Xue, Dandan and Ye, Yifan and Chen, Zi and Hu, Yanqiu and Yuan, Changrong and Wang, Yanmei}, title = {{Effects of peer support interventions for family caregivers of persons with dementia: A systematic review and meta-analysis}}, journal = {Archives of gerontology and geriatrics}, year = {2026}, doi = {10.1016/j.archger.2026.106168}, pmid = {41690252}, url = {https://doi.org/10.1016/j.archger.2026.106168} } @article{cheng2014-24688081, author = {Cheng, S. T. and Lau, R. W. and Mak, E. P. and Ng, N. S. and Lam, L. C.}, title = {{Benefit-finding intervention for Alzheimer caregivers: conceptual framework, implementation issues, and preliminary efficacy}}, journal = {The Gerontologist}, year = {2014}, doi = {10.1093/geront/gnu018}, pmid = {24688081}, url = {https://doi.org/10.1093/geront/gnu018} } @article{vandermaaden2016-27515720, author = {van der Maaden, T. and de Vet, H. C. and Achterberg, W. P. and Boersma, F. and Schols, J. M. and Mehr, D. R. and Galindo-Garre, F. and Hertogh, C. M. and others}, title = {{Improving comfort in people with dementia and pneumonia: a cluster randomized trial}}, journal = {BMC medicine}, year = {2016}, doi = {10.1186/s12916-016-0663-x}, pmid = {27515720}, url = {https://doi.org/10.1186/s12916-016-0663-x} } @article{doody2001-11342679, author = {Doody, R. S. and Stevens, J. C. and Beck, C. and Dubinsky, R. M. and Kaye, J. A. and Gwyther, L. and Mohs, R. C. and Thal, L. J. and others}, title = {{Practice parameter: management of dementia (an evidence-based review) [RETIRED]. Report of the Quality Standards Subcommittee of the American Academy of Neurology}}, journal = {Neurology}, year = {2001}, doi = {10.1212/wnl.56.9.1154}, pmid = {11342679}, url = {https://doi.org/10.1212/wnl.56.9.1154} } @article{cooper2007-17005068, author = {Cooper, C. and Balamurali, T. B. and Livingston, G.}, title = {{A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia}}, journal = {International psychogeriatrics}, year = {2007}, doi = {10.1017/s1041610206004297}, pmid = {17005068}, url = {https://doi.org/10.1017/s1041610206004297} } @article{black2004-15559754, author = {Black, W. and Almeida, O. P.}, title = {{A systematic review of the association between the Behavioral and Psychological Symptoms of Dementia and burden of care}}, journal = {International psychogeriatrics}, year = {2004}, doi = {10.1017/s1041610204000468}, pmid = {15559754}, url = {https://doi.org/10.1017/s1041610204000468} } @article{allen2017-27986469, author = {Allen, A. P. and Curran, E. A. and Á, Duggan and Cryan, J. F. and Chorcoráin, A. N. and Dinan, T. G. and Molloy, D. W. and Kearney, P. M. and others}, title = {{A systematic review of the psychobiological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress}}, journal = {Neuroscience and biobehavioral reviews}, year = {2017}, doi = {10.1016/j.neubiorev.2016.12.006}, pmid = {27986469}, url = {https://doi.org/10.1016/j.neubiorev.2016.12.006} } @article{napoles2010-20508244, author = {Napoles, A. M. and Chadiha, L. and Eversley, R. and Moreno-John, G.}, title = {{Reviews: developing culturally sensitive dementia caregiver interventions: are we there yet?}}, journal = {American journal of Alzheimer's disease and other dementias}, year = {2010}, doi = {10.1177/1533317510370957}, pmid = {20508244}, url = {https://doi.org/10.1177/1533317510370957} } @article{chien2011-21308785, author = {Chien, L. Y. and Chu, H. and Guo, J. L. and Liao, Y. M. and Chang, L. I. and Chen, C. H. and Chou, K. R.}, title = {{Caregiver support groups in patients with dementia: a meta-analysis}}, journal = {International journal of geriatric psychiatry}, year = {2011}, doi = {10.1002/gps.2660}, pmid = {21308785}, url = {https://doi.org/10.1002/gps.2660} } @article{hepburn2001-11347790, author = {Hepburn, K. W. and Tornatore, J. and {Center B} and Ostwald, S. W.}, title = {{Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes}}, journal = {Journal of the American Geriatrics Society}, year = {2001}, doi = {10.1046/j.1532-5415.2001.49090.x}, pmid = {11347790}, url = {https://doi.org/10.1046/j.1532-5415.2001.49090.x} } @article{berge2025-40042468, author = {Berge, Line Iden and Angeles, Renira C. and Gedde, Marie Hidle and Fæø, Stein Erik and Mannseth, Janne and Vislapuu, Maarja and Puaschitz, Nathalie Genevieve and Hillestad, Eirin and others}, title = {{Burden and care time for dementia caregivers in the LIVE@Home.Path trial}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.14622}, pmid = {40042468}, url = {https://doi.org/10.1002/alz.14622} } @article{han2025-40163859, author = {Han, Areum and Oster, Robert A. and Yuen, Hon K. and Jenkins, Jeremy and Hawkins, Jessica and Edwards, Lauren}, title = {{Videoconference-Delivered Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Pilot Randomized Controlled Trial}}, journal = {JMIR Formative Research}, year = {2025}, doi = {10.2196/67545}, pmid = {40163859}, url = {https://doi.org/10.2196/67545} } @article{wendrichvandael2020-32380259, author = {Wendrich-van Dael, A. and Bunn, F. and Lynch, J. and Pivodic, L. and Van den Block, L. and Goodman, C.}, title = {{Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences}}, journal = {International journal of nursing studies}, year = {2020}, doi = {10.1016/j.ijnurstu.2020.103576}, pmid = {32380259}, url = {https://doi.org/10.1016/j.ijnurstu.2020.103576} } @article{cheng2020-31556447, author = {Cheng, S. T. and Mak, E. P. M. and Kwok, T. and Fung, H. and Lam, L. C. W.}, title = {{Benefit-Finding Intervention Delivered Individually to Alzheimer Family Caregivers: Longer-Term Outcomes of a Randomized Double-Blind Controlled Trial}}, journal = {The journals of gerontology. Series B, Psychological sciences and social sciences}, year = {2020}, doi = {10.1093/geronb/gbz118}, pmid = {31556447}, url = {https://doi.org/10.1093/geronb/gbz118} } @article{nguyen2018-30334942, author = {Nguyen, T. A. and Nguyen, H. and Pham, T. and Nguyen, T. H. and Hinton, L.}, title = {{A cluster randomized controlled trial to test the feasibility and preliminary effectiveness of a family dementia caregiver intervention in Vietnam: The REACH VN study protocol}}, journal = {Medicine}, year = {2018}, doi = {10.1097/md.0000000000012553}, pmid = {30334942}, url = {https://doi.org/10.1097/md.0000000000012553} } @article{mccarthy2023-36719721, author = {McCarthy, V. and Portz, J. and Fischer, S. M. and Greenway, E. and Johnson, R. L. and Knoepke, C. E. and Matlock, D. D. and Omeragic, F. and others}, title = {{A Web-Based Decision Aid for Caregivers of Persons With Dementia With Firearm Access (Safe at Home Study): Protocol for a Randomized Controlled Trial}}, journal = {JMIR research protocols}, year = {2023}, doi = {10.2196/43702}, pmid = {36719721}, url = {https://doi.org/10.2196/43702} } @article{travis2024-39392675, author = {Travis, A. and O'Donnell, A. and Giraldo-Santiago, N. and Stone, S. M. and Torres, D. and Adler, SR. and Vranceanu, A. M. and Ritchie, C. S.}, title = {{Intervention for the Management of Neuropsychiatric Symptoms to Reduce Caregiver Stress: Protocol for the Mindful and Self-Compassion Care Intervention for Caregivers of Persons Living With Dementia}}, journal = {JMIR research protocols}, year = {2024}, doi = {10.2196/58356}, pmid = {39392675}, url = {https://doi.org/10.2196/58356} } @article{mccabe2016-27102056, author = {McCabe, M. and You, E. and Tatangelo, G.}, title = {{Hearing Their Voice: A Systematic Review of Dementia Family Caregivers' Needs}}, journal = {The Gerontologist}, year = {2016}, doi = {10.1093/geront/gnw078}, pmid = {27102056}, url = {https://doi.org/10.1093/geront/gnw078} } @article{torti2004-15249854, author = {Torti, F. M. and Gwyther, L. P. and Reed, S. D. and Friedman, J. Y. and Schulman, K. A.}, title = {{A multinational review of recent trends and reports in dementia caregiver burden}}, journal = {Alzheimer disease and associated disorders}, year = {2004}, doi = {10.1097/01.wad.0000126902.37908.b2}, pmid = {15249854}, url = {https://doi.org/10.1097/01.wad.0000126902.37908.b2} } @article{whitebird2013-23070934, author = {Whitebird, R. R. and Kreitzer, M. and Crain, A. L. and Lewis, B. A. and Hanson, L. R. and Enstad, C. J.}, title = {{Mindfulness-based stress reduction for family caregivers: a randomized controlled trial}}, journal = {The Gerontologist}, year = {2013}, doi = {10.1093/geront/gns126}, pmid = {23070934}, url = {https://doi.org/10.1093/geront/gns126} } @article{vandepitte2016-27079704, author = {Vandepitte, S. and Van Den Noortgate, N. and Putman, K. and Verhaeghe, S. and Faes, K. and Annemans, L.}, title = {{Effectiveness of Supporting Informal Caregivers of People with Dementia: A Systematic Review of Randomized and Non-Randomized Controlled Trials}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2016}, doi = {10.3233/jad-151011}, pmid = {27079704}, url = {https://doi.org/10.3233/jad-151011} } @article{waligora2019-29931147, author = {Waligora, K. J. and Bahouth, M. N. and Han, H. R.}, title = {{The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review}}, journal = {The Gerontologist}, year = {2019}, doi = {10.1093/geront/gny076}, pmid = {29931147}, url = {https://doi.org/10.1093/geront/gny076} } @article{nguyen2025-41000210, author = {Nguyen, Tran To Tran and Vu, Lan Duong Tuyet and Truong, Khoa Tri and Nguyen, Tuan Chau and Thai, Truc Thanh and Schofield, Penelope E. and Nguyen, Tuan Anh and Than, The Ha Ngoc and others}, title = {{Smartphone App-Based Psychoeducation for Caregivers of People with Dementia in Vietnam: A Pilot Randomized Controlled Trial}}, journal = {Clinical Interventions in Aging}, year = {2025}, doi = {10.2147/cia.s551994}, pmid = {41000210}, url = {https://doi.org/10.2147/cia.s551994} } @article{nguyen2025-41158517, author = {Nguyen, Tran To Tran and Vu, Lan Duong Tuyet and Nguyen, Tuan Anh and Truong, Khoa Tri and Thai, Truc Thanh and Than, The Ha Ngoc and Nguyen, Huan Thanh}, title = {{Mobile App Psychoeducation for Dementia Caregivers In Vietnam: A Randomized Controlled Trial}}, journal = {Journal of Multidisciplinary Healthcare}, year = {2025}, doi = {10.2147/jmdh.s557573}, pmid = {41158517}, url = {https://doi.org/10.2147/jmdh.s557573} } @article{davies2025-40169305, author = {Davies, Nathan and Barrado‐Martín, Yolanda and Aworinde, Jesutofunmi and Vickerstaff, Victoria and Moore, Kirsten J. and Kenten, Charlotte and McMullen, Sarah M. and Evans, Catherine and others}, title = {{A meta-review and synthesis of the effectiveness of psychosocial interventions for people living with dementia nearing the end of life and their family carers}}, journal = {International Psychogeriatrics}, year = {2025}, doi = {10.1016/j.inpsyc.2025.100068}, pmid = {40169305}, url = {https://doi.org/10.1016/j.inpsyc.2025.100068} } @article{hua2026-41505195, author = {Hua, Musen and Su, Jiacheng and Zhang, Fuyan and Chen, Shuya and Li, Jiaoyue and Yang, Li}, title = {{Effects of digital psychological interventions for family caregivers of people with dementia: a systematic review and meta-analysis}}, journal = {Age and ageing}, year = {2026}, doi = {10.1093/ageing/afaf373}, pmid = {41505195}, url = {https://doi.org/10.1093/ageing/afaf373} } @article{nakanishi2018-28857263, author = {Nakanishi, M. and Endo, K. and Hirooka, K. and Granvik, E. and Minthon, L. and Nägga, K. and Nishida, A.}, title = {{Psychosocial behaviour management programme for home-dwelling people with dementia: A cluster-randomized controlled trial}}, journal = {International journal of geriatric psychiatry}, year = {2018}, doi = {10.1002/gps.4784}, pmid = {28857263}, url = {https://doi.org/10.1002/gps.4784} } @article{black2013-24479141, author = {Black, B. S. and Johnston, D. and Rabins, P. V. and Morrison, A. and Lyketsos, C. and Samus, Q. M.}, title = {{Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study}}, journal = {Journal of the American Geriatrics Society}, year = {2013}, doi = {10.1111/jgs.12549}, pmid = {24479141}, url = {https://doi.org/10.1111/jgs.12549} } @article{connell1997-9203759, author = {Connell, C. M. and Gibson, G. D.}, title = {{Racial, ethnic, and cultural differences in dementia caregiving: review and analysis}}, journal = {The Gerontologist}, year = {1997}, doi = {10.1093/geront/37.3.355}, pmid = {9203759}, url = {https://doi.org/10.1093/geront/37.3.355} } @article{hope1998-9818303, author = {Hope, T. and Keene, J. and Gedling, K. and Fairburn, C. G. and Jacoby, R.}, title = {{Predictors of institutionalization for people with dementia living at home with a carer}}, journal = {International journal of geriatric psychiatry}, year = {1998}, doi = {10.1002/(sici)1099-1166(1998100)13:10<682::aid-gps847>3.0.co;2-y}, pmid = {9818303}, url = {https://doi.org/10.1002/(sici)1099-1166(1998100)13:10<682::aid-gps847>3.0.co;2-y} } @article{czaja2013-23831174, author = {Czaja, S. J. and Loewenstein, D. and Schulz, R. and Nair, S. N. and Perdomo, D.}, title = {{A videophone psychosocial intervention for dementia caregivers}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2013}, doi = {10.1016/j.jagp.2013.02.019}, pmid = {23831174}, url = {https://doi.org/10.1016/j.jagp.2013.02.019} } @article{thorpe2012-22683399, author = {Thorpe, J. M. and Thorpe, C. T. and Kennelty, K. A. and Gellad, W. F. and Schulz, R.}, title = {{The impact of family caregivers on potentially inappropriate medication use in noninstitutionalized older adults with dementia}}, journal = {The American journal of geriatric pharmacotherapy}, year = {2012}, doi = {10.1016/j.amjopharm.2012.05.001}, pmid = {22683399}, url = {https://doi.org/10.1016/j.amjopharm.2012.05.001} } @article{leng2019-30553098, author = {Leng, M. and Liu, P. and Zhang, P. and Hu, M. and Zhou, H. and Li, G. and Yin, H. and Chen, L.}, title = {{Pet robot intervention for people with dementia: A systematic review and meta-analysis of randomized controlled trials}}, journal = {Psychiatry research}, year = {2019}, doi = {10.1016/j.psychres.2018.12.032}, pmid = {30553098}, url = {https://doi.org/10.1016/j.psychres.2018.12.032} } @article{goodall2021-32475166, author = {Goodall, G. and Taraldsen, K. and Serrano, J. A.}, title = {{The use of technology in creating individualized, meaningful activities for people living with dementia: A systematic review}}, journal = {Dementia (London, England)}, year = {2021}, doi = {10.1177/1471301220928168}, pmid = {32475166}, url = {https://doi.org/10.1177/1471301220928168} } @article{petrovic2020-32411643, author = {Petrovic, M. and Gaggioli, A.}, title = {{Digital Mental Health Tools for Caregivers of Older Adults-A Scoping Review}}, journal = {Frontiers in public health}, year = {2020}, doi = {10.3389/fpubh.2020.00128}, pmid = {32411643}, url = {https://doi.org/10.3389/fpubh.2020.00128} } @article{lin2025-40097773, author = {Lin, Zhuoer and Qian, Yuting and Gill, Thomas M. and Hou, Xiaohui and Allore, Heather G and Chen, Shanquan and Chen, Xi}, title = {{Absence of care among community-dwelling older adults with dementia and functional limitations}}, journal = {Nature Aging}, year = {2025}, doi = {10.1038/s43587-025-00836-y}, pmid = {40097773}, url = {https://doi.org/10.1038/s43587-025-00836-y} } @article{abdelhalim2025-40095192, author = {Abdelhalim, D. and Ahmed, Marwa and Hussein, Hoda Abdou and Sarhan, Mai Diaa and Khalaf, Ola Osama}, title = {{A Skill-Based multimodal intervention for dementia caregivers: impact on burden and anxiety}}, journal = {Aging Clinical and Experimental Research}, year = {2025}, doi = {10.1007/s40520-025-02985-x}, pmid = {40095192}, url = {https://doi.org/10.1007/s40520-025-02985-x} } @article{nascimento2025-41194522, author = {Nascimento, Israel Júnior Borges do and Abdulazeem, Hebatullah Mohamed and Weerasekara, Ishanka and Sharifan, Amin and Bianco, Véronique and Kularathne, Indunil and Cunningham, Charnay and Sathian, Brijesh and others}, title = {{An Overview of Reviews on Telemedicine and Telehealth in Dementia Care: Mixed Methods Synthesis}}, journal = {JMIR Mental Health}, year = {2025}, doi = {10.2196/75266}, pmid = {41194522}, url = {https://doi.org/10.2196/75266} } @article{hartford2025-39976967, author = {Hartford, Anne-Marie and Li, Wenshan and Qureshi, Danial and Talarico, Robert and Fung, Stephen G. and Bush, Shirley Harvey and Casey, Genevieve M. and Isenberg, Sarina Roslyn and others}, title = {{Use of Feeding Tubes Among Hospitalized Older Adults With Dementia}}, journal = {JAMA Network Open}, year = {2025}, doi = {10.1001/jamanetworkopen.2024.60780}, pmid = {39976967}, url = {https://doi.org/10.1001/jamanetworkopen.2024.60780} } @article{moore2017-28673257, author = {Moore, K. J. and Davis, S. and Gola, A. and Harrington, J. and Kupeli, N. and Vickerstaff, V. and King, M. and Leavey, G. and others}, title = {{Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods}}, journal = {BMC geriatrics}, year = {2017}, doi = {10.1186/s12877-017-0523-3}, pmid = {28673257}, url = {https://doi.org/10.1186/s12877-017-0523-3} } @article{burns2015-26312536, author = {Burns, M. and McIlfatrick, S.}, title = {{Palliative care in dementia: literature review of nurses' knowledge and attitudes towards pain assessment}}, journal = {International journal of palliative nursing}, year = {2015}, doi = {10.12968/ijpn.2015.21.8.400}, pmid = {26312536}, url = {https://doi.org/10.12968/ijpn.2015.21.8.400} } @article{giordano2022-35055625, author = {Giordano, A. and De Panfilis, L. and Perin, M. and Servidio, L. and Cascioli, M. and Grasso, M. G. and Lugaresi, A. and Pucci, E. and others}, title = {{Advance Care Planning in Neurodegenerative Disorders: A Scoping Review}}, journal = {International journal of environmental research and public health}, year = {2022}, doi = {10.3390/ijerph19020803}, pmid = {35055625}, url = {https://doi.org/10.3390/ijerph19020803} } @article{chang2025-40366652, author = {Chang, Y. K. and Philip, J. and van der Steen, J. T. and Van den Block, L. and Hum, A. Y. M. and Pérez-Cruz, P. E. and Paiva, C. and Mori, M. and Chen, P. J. and Agar, M. R. and others}, title = {{Referral Criteria for Specialist Palliative Care for Patients With Dementia}}, journal = {JAMA Network Open}, year = {2025}, doi = {10.1001/jamanetworkopen.2025.10298}, pmid = {40366652}, url = {https://doi.org/10.1001/jamanetworkopen.2025.10298} } @article{ploeg2018-31518230, author = {Ploeg, J. and McAiney, C. and Duggleby, W. and Chambers, T. and Lam, A. and Peacock, S. and Fisher, K. and Forbes, D. A. and others}, title = {{A Web-Based Intervention to Help Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: Qualitative Study}}, journal = {JMIR aging}, year = {2018}, doi = {10.2196/aging.8475}, pmid = {31518230}, url = {https://doi.org/10.2196/aging.8475} } @article{yang2022-33988909, author = {Yang, L. and Xuan, C. and Yu, C. and Jin, X. and Zheng, P. and Yan, J.}, title = {{Effects of comprehensive intervention on life quality among the elderly with Alzheimer Disease and their caregivers based on mixed models}}, journal = {Nursing open}, year = {2022}, doi = {10.1002/nop2.917}, pmid = {33988909}, url = {https://doi.org/10.1002/nop2.917} } @article{korthauer2024-39412840, author = {Korthauer, L. E. and Rosen, R. K. and Tremont, G. and Davis, J. D.}, title = {{Intervention Development for Tailored Education for Aging and Cognitive Health (TEACH) for Dementia Prevention in Midlife Adults: Protocol for a Randomized Controlled Trial}}, journal = {JMIR research protocols}, year = {2024}, doi = {10.2196/60395}, pmid = {39412840}, url = {https://doi.org/10.2196/60395} } @article{davis2019-31002403, author = {Davis, M. L. and Hendrickson, J. and Wilson, N. and Shrestha, S. and Amspoker, A. B. and Kunik, M.}, title = {{Taking Care of the Dyad: Frequency of Caregiver Assessment Among Veterans with Dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2019}, doi = {10.1111/jgs.15882}, pmid = {31002403}, url = {https://doi.org/10.1111/jgs.15882} } @article{gitlin2008-18310553, author = {Gitlin, L. N. and Winter, L. and Burke, J. and Chernett, N. and Dennis, M. P. and Hauck, W. W.}, title = {{Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2008}, doi = {10.1097/jgp.0b013e318160da72}, pmid = {18310553}, url = {https://doi.org/10.1097/jgp.0b013e318160da72} } @article{andersen2004-15383148, author = {Andersen, C. K. and Wittrup-Jensen, K. U. and Lolk, A. and Andersen, K. and Kragh-Sørensen, P.}, title = {{Ability to perform activities of daily living is the main factor affecting quality of life in patients with dementia}}, journal = {Health and quality of life outcomes}, year = {2004}, doi = {10.1186/1477-7525-2-52}, pmid = {15383148}, url = {https://doi.org/10.1186/1477-7525-2-52} } @article{chan2013-22407743, author = {Chan, D. and Livingston, G. and Jones, L. and Sampson, E. L.}, title = {{Grief reactions in dementia carers: a systematic review}}, journal = {International journal of geriatric psychiatry}, year = {2013}, doi = {10.1002/gps.3795}, pmid = {22407743}, url = {https://doi.org/10.1002/gps.3795} } @article{kiely2010-21143437, author = {Kiely, D. K. and Givens, J. L. and Shaffer, M. L. and Teno, J. M. and Mitchell, S. L.}, title = {{Hospice use and outcomes in nursing home residents with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2010.03185.x}, pmid = {21143437}, url = {https://doi.org/10.1111/j.1532-5415.2010.03185.x} } @article{deeken2019-30642650, author = {Deeken, F. and Rezo, A. and Hinz, M. and Discher, R. and Rapp, M. A.}, title = {{Evaluation of Technology-Based Interventions for Informal Caregivers of Patients With Dementia-A Meta-Analysis of Randomized Controlled Trials}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2019}, doi = {10.1016/j.jagp.2018.12.003}, pmid = {30642650}, url = {https://doi.org/10.1016/j.jagp.2018.12.003} } @article{boyle2022-36550456, author = {Boyle, L. D. and Husebo, B. S. and Vislapuu, M.}, title = {{Promotors and barriers to the implementation and adoption of assistive technology and telecare for people with dementia and their caregivers: a systematic review of the literature}}, journal = {BMC health services research}, year = {2022}, doi = {10.1186/s12913-022-08968-2}, pmid = {36550456}, url = {https://doi.org/10.1186/s12913-022-08968-2} } @article{kosar2023-36753276, author = {Kosar, Cyrus M. and Mor, Vincent and Werner, Rachel M. and Rahman, Momotazur}, title = {{Risk of Discharge to Lower-Quality Nursing Homes Among Hospitalized Older Adults With Alzheimer Disease and Related Dementias}}, journal = {JAMA Network Open}, year = {2023}, doi = {10.1001/jamanetworkopen.2022.55134}, pmid = {36753276}, url = {https://doi.org/10.1001/jamanetworkopen.2022.55134} } @article{fredriksengoldsen2025-40253707, author = {Fredriksen‐Goldsen, Karen I. and Kim, Hyun‐Jun and Teri, Linda and Jones‐Cobb, Brittany and La Fazia, David and Petros, Ryan and Berridge, Clara W. and Prasad, Anyah and others}, title = {{Older adults living with Alzheimer’s Disease, dementia or mild cognitive impairment with no informal caregiver or care partner: IDEA Café, the first pilot randomized trial intervention for this underserved populations}}, journal = {Aging \& Mental Health}, year = {2025}, doi = {10.1080/13607863.2025.2468893}, pmid = {40253707}, url = {https://doi.org/10.1080/13607863.2025.2468893} } @article{appelhof2017-28558375, author = {Appelhof, Britt and Bakker, Christian and den IJssel, Jeannette C.L. van Duinen‐van and Zwijsen, Sandra A. and Smalbrugge, Martin and Verhey, Frans R.J. and de Vugt, Marjolein Elizabeth and Zuidema, Sytse Ulbe and others}, title = {{The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes}}, journal = {Dementia and Geriatric Cognitive Disorders}, year = {2017}, doi = {10.1159/000477087}, pmid = {28558375}, url = {https://doi.org/10.1159/000477087} } @article{cordner2010-21054329, author = {Cordner, Z. and Blass, D. M. and Rabins, P. V. and Black, B. S.}, title = {{Quality of life in nursing home residents with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2010.03170.x}, pmid = {21054329}, url = {https://doi.org/10.1111/j.1532-5415.2010.03170.x} } @article{vandersteen2007-17845950, author = {van der Steen, J. T. and Mitchell, S. L. and Frijters, D. H. and Kruse, R. L. and Ribbe, M. W.}, title = {{Prediction of 6-month mortality in nursing home residents with advanced dementia: validity of a risk score}}, journal = {Journal of the American Medical Directors Association}, year = {2007}, doi = {10.1016/j.jamda.2007.05.004}, pmid = {17845950}, url = {https://doi.org/10.1016/j.jamda.2007.05.004} } @article{pfaff2025-39922302, author = {Pfaff, M. and Hoffmann, W. and Boekholt, M. and Biernetzky, O. and Blotenberg, I. and Afrin, D. and Platen, M. and Teipel, S. and Thyrian, JR. and Kilimann, I. and Michalowsky, B.}, title = {{Cost-Effectiveness of a Digitally Supported Care Management Program for Caregivers of People With Dementia}}, journal = {Value in Health}, year = {2025}, doi = {10.1016/j.jval.2025.01.011}, pmid = {39922302}, url = {https://doi.org/10.1016/j.jval.2025.01.011} } @article{tawfik2021-33971764, author = {Tawfik, N. M. and Sabry, N. A. and Darwish, H. and Mowafy, M. and Soliman, S. S. A.}, title = {{Psychoeducational Program for the Family Member Caregivers of People with Dementia to Reduce Perceived Burden and Increase Patient's Quality of Life: A Randomized Controlled Trial}}, journal = {Journal of primary care \& community health}, year = {2021}, doi = {10.1177/21501327211014088}, pmid = {33971764}, url = {https://doi.org/10.1177/21501327211014088} } @article{boutilier2022-35925654, author = {Boutilier, J. J. and Loganathar, P. and Linden, A. and Scheer, E. and Noejovich, S. and Elliott, C. and Zuraw, M. and Werner, N. E.}, title = {{A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study}}, journal = {JMIR aging}, year = {2022}, doi = {10.2196/36975}, pmid = {35925654}, url = {https://doi.org/10.2196/36975} } @article{disalvo2018-30106321, author = {Disalvo, D. and Luckett, T. and Luscombe, G. and Bennett, A. and Davidson, P. and Chenoweth, L. and Mitchell, G. and Pond, D. and others}, title = {{Potentially Inappropriate Prescribing in Australian Nursing Home Residents with Advanced Dementia: A Substudy of the IDEAL Study}}, journal = {Journal of palliative medicine}, year = {2018}, doi = {10.1089/jpm.2018.0070}, pmid = {30106321}, url = {https://doi.org/10.1089/jpm.2018.0070} } @article{butters2004-15184238, author = {Butters, M. A. and Whyte, E. M. and Nebes, R. D. and Begley, A. E. and Dew, M. A. and Mulsant, B. H. and Zmuda, M. D. and Bhalla, R. and others}, title = {{The nature and determinants of neuropsychological functioning in late-life depression}}, journal = {Archives of general psychiatry}, year = {2004}, doi = {10.1001/archpsyc.61.6.587}, pmid = {15184238}, url = {https://doi.org/10.1001/archpsyc.61.6.587} } @article{schulz2004-15328328, author = {Schulz, R. and Belle, S. H. and Czaja, S. J. and McGinnis, K. A. and Stevens, A. and Zhang, S.}, title = {{Long-term care placement of dementia patients and caregiver health and well-being}}, journal = {JAMA}, year = {2004}, doi = {10.1001/jama.292.8.961}, pmid = {15328328}, url = {https://doi.org/10.1001/jama.292.8.961} } @article{liu2017-27681477, author = {Liu, S. and Li, C. and Shi, Z. and Wang, X. and Zhou, Y. and Liu, J. and Yu, T. and others}, title = {{Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China}}, journal = {Journal of clinical nursing}, year = {2017}, doi = {10.1111/jocn.13601}, pmid = {27681477}, url = {https://doi.org/10.1111/jocn.13601} } @article{quinn2009-19347681, author = {Quinn, C. and Clare, L. and Woods, B.}, title = {{The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: a systematic review}}, journal = {Aging \& mental health}, year = {2009}, doi = {10.1080/13607860802459799}, pmid = {19347681}, url = {https://doi.org/10.1080/13607860802459799} } @article{reuben2025-40892399, author = {Reuben, David B. and Stevens, Alan B. and Gill, Thomas M. and Williamson, Jeff D. and Volpi, Elena and Lichtenstein, Maya L. and Jennings, Lee A. and Galloway, Rebecca V. and others}, title = {{Patient and Caregiver Outcomes of Health System, Community-Based, and Usual Dementia Care}}, journal = {JAMA Internal Medicine}, year = {2025}, doi = {10.1001/jamainternmed.2025.4247}, pmid = {40892399}, url = {https://doi.org/10.1001/jamainternmed.2025.4247} } @article{zhou2025-40632534, author = {Zhou, Zi and Hong, Xiaoling}, title = {{Caring for Grandchildren and Dementia Among Older Adults in China}}, journal = {JAMA Network Open}, year = {2025}, doi = {10.1001/jamanetworkopen.2025.19622}, pmid = {40632534}, url = {https://doi.org/10.1001/jamanetworkopen.2025.19622} } @article{menard2025-40779425, author = {Ménard, Alixe and Clark, Emily and Hagerman, Leah and Dobbins, Maureen and Smith, Eric Edward and Vedel, Isabelle and Chambers, L. H. and Iroanyah, Ngozi and others}, title = {{Toward compassionate communication: a rapid review on facilitating the dementia disclosure process}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70466}, pmid = {40779425}, url = {https://doi.org/10.1002/alz.70466} } @article{givens2009-19486200, author = {Givens, J. L. and Kiely, D. K. and Carey, K. and Mitchell, S. L.}, title = {{Healthcare proxies of nursing home residents with advanced dementia: decisions they confront and their satisfaction with decision-making}}, journal = {Journal of the American Geriatrics Society}, year = {2009}, doi = {10.1111/j.1532-5415.2009.02304.x}, pmid = {19486200}, url = {https://doi.org/10.1111/j.1532-5415.2009.02304.x} } @article{lamberg2005-16078968, author = {Lamberg, J. L. and Person, C. J. and Kiely, D. K. and Mitchell, S. L.}, title = {{Decisions to hospitalize nursing home residents dying with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2005}, doi = {10.1111/j.1532-5415.2005.53426.x}, pmid = {16078968}, url = {https://doi.org/10.1111/j.1532-5415.2005.53426.x} } @article{chen2006-16460381, author = {Chen, J. H. and Lamberg, J. L. and Chen, Y. C. and Kiely, D. K. and Page, J. H. and Person, C. J. and Mitchell, S. L.}, title = {{Occurrence and treatment of suspected pneumonia in long-term care residents dying with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2006}, doi = {10.1111/j.1532-5415.2005.00524.x}, pmid = {16460381}, url = {https://doi.org/10.1111/j.1532-5415.2005.00524.x} } @article{monroe2013-23506621, author = {Monroe, T. B. and Carter, M. A. and Feldt, K. S. and Dietrich, M. S. and Cowan, R. L.}, title = {{Pain and hospice care in nursing home residents with dementia and terminal cancer}}, journal = {Geriatrics \& gerontology international}, year = {2013}, doi = {10.1111/ggi.12049}, pmid = {23506621}, url = {https://doi.org/10.1111/ggi.12049} } @article{allen2003-12810894, author = {Allen, R. S. and DeLaine, SR. and Chaplin, W. F. and Marson, D. C. and Bourgeois, M. S. and Dijkstra, K. and Burgio, L. D.}, title = {{Advance care planning in nursing homes: correlates of capacity and possession of advance directives}}, journal = {The Gerontologist}, year = {2003}, doi = {10.1093/geront/43.3.309}, pmid = {12810894}, url = {https://doi.org/10.1093/geront/43.3.309} } @article{miller2012-23110337, author = {Miller, S. C. and Lima, J. C. and Mitchell, S. L.}, title = {{Influence of hospice on nursing home residents with advanced dementia who received Medicare-skilled nursing facility care near the end of life}}, journal = {Journal of the American Geriatrics Society}, year = {2012}, doi = {10.1111/j.1532-5415.2012.04204.x}, pmid = {23110337}, url = {https://doi.org/10.1111/j.1532-5415.2012.04204.x} } @article{temkingreener2021-33749844, author = {Temkin-Greener, H. and Yan, D. and Wang, S. and Cai, S.}, title = {{Racial disparity in end-of-life hospitalizations among nursing home residents with dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2021}, doi = {10.1111/jgs.17117}, pmid = {33749844}, url = {https://doi.org/10.1111/jgs.17117} } @article{luth2021-33608869, author = {Luth, E. A. and Russell, D. J. and Xu, J. C. and Lauder, B. and Ryvicker, M. B. and Dignam, R. R. and Baughn, R. and Bowles, K. H. and others}, title = {{Survival in hospice patients with dementia: the effect of home hospice and nurse visits}}, journal = {Journal of the American Geriatrics Society}, year = {2021}, doi = {10.1111/jgs.17066}, pmid = {33608869}, url = {https://doi.org/10.1111/jgs.17066} } @article{gabbard2020-31854201, author = {Gabbard, J. and Johnson, D. and Russell, G. and Spencer, S. and Williamson, J. D. and McLouth, L. E. and Ferris, K. G. and Sink, K. and others}, title = {{Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia}}, journal = {The American journal of hospice \& palliative care}, year = {2020}, doi = {10.1177/1049909119895497}, pmid = {31854201}, url = {https://doi.org/10.1177/1049909119895497} } @article{zhang2025-40343716, author = {Zhang, J. J. and Reuben, D. B. and Walling, A. M. and Zingmond, D. S. and Damberg, C. L. and Wenger, N. S. and Xu, H. and Ikesu, R. and Kaneshiro, G. S. and Klomhaus, A. and others}, title = {{End-of-Life Care and Health Care Spending for Medicare Beneficiaries With Dementia in Accountable Care Organizations}}, journal = {JAMA Health Forum}, year = {2025}, doi = {10.1001/jamahealthforum.2025.0731}, pmid = {40343716}, url = {https://doi.org/10.1001/jamahealthforum.2025.0731} } @article{cheng2017-28795386, author = {Cheng, S. T.}, title = {{Dementia Caregiver Burden: a Research Update and Critical Analysis}}, journal = {Current psychiatry reports}, year = {2017}, doi = {10.1007/s11920-017-0818-2}, pmid = {28795386}, url = {https://doi.org/10.1007/s11920-017-0818-2} } @article{langa2001-11722692, author = {Langa, K. M. and Chernew, M. E. and Kabeto, M. U. and Herzog, A. R. and Ofstedal, M. B. and Willis, R. J. and Wallace, R. B. and Mucha, L. M. and others}, title = {{National estimates of the quantity and cost of informal caregiving for the elderly with dementia}}, journal = {Journal of general internal medicine}, year = {2001}, doi = {10.1111/j.1525-1497.2001.10123.x}, pmid = {11722692}, url = {https://doi.org/10.1111/j.1525-1497.2001.10123.x} } @article{gaugler2005-16398893, author = {Gaugler, J. E. and Kane, R. L. and Kane, R. A. and Newcomer, R.}, title = {{Unmet care needs and key outcomes in dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2005}, doi = {10.1111/j.1532-5415.2005.00495.x}, pmid = {16398893}, url = {https://doi.org/10.1111/j.1532-5415.2005.00495.x} } @article{buhr2006-16452284, author = {Buhr, G. T. and Kuchibhatla, M. and Clipp, E. C.}, title = {{Caregivers' reasons for nursing home placement: clues for improving discussions with families prior to the transition}}, journal = {The Gerontologist}, year = {2006}, doi = {10.1093/geront/46.1.52}, pmid = {16452284}, url = {https://doi.org/10.1093/geront/46.1.52} } @article{study2021-34337138, author = {{GBD 2019 Collaborators}}, title = {{Global mortality from dementia: Application of a new method and results from the Global Burden of Disease Study 2019}}, journal = {Alzheimer's \& dementia (New York, N. Y.)}, year = {2021}, doi = {10.1002/trc2.12200}, pmid = {34337138}, url = {https://doi.org/10.1002/trc2.12200} } @article{fishman2020-32826748, author = {Fishman, Paul Arthur and White, Lindsay L. Y. and Ingraham, Bailey C. and Park, Sungchul and Larson, Eric B.B. and Crane, Paul K. and Coe, Norma B.}, title = {{Health Care Costs of Alzheimer’s and Related Dementias Within a Medicare Managed Care Provider}}, journal = {Medical Care}, year = {2020}, doi = {10.1097/mlr.0000000000001380}, pmid = {32826748}, url = {https://doi.org/10.1097/mlr.0000000000001380} } @article{greene2025-40928757, author = {Greene, Leanne and Allan, Louise M. and Bingham, Alison and Sharma, Ashima K. and Whale, Bethany and Barber, Robert and Fox, Christopher and Goodwin, Victoria A and others}, title = {{Maintaining independence at home after a fall: a process evaluation of the MAINTAIN multicomponent intervention for people living with dementia}}, journal = {Age and Ageing}, year = {2025}, doi = {10.1093/ageing/afaf245}, pmid = {40928757}, url = {https://doi.org/10.1093/ageing/afaf245} } @article{riyin2024-39092850, author = {RiYin, Tay and Ys, Tan Joyce and BinYan, Lim and Ym, Hum Allyn and Jane, Simpson and Nancy, Preston}, title = {{Factors associated with the place of death of persons with advanced dementia: A systematic review of international literature with meta-analysis}}, journal = {Palliative medicine}, year = {2024}, doi = {10.1177/02692163241265231}, pmid = {39092850}, url = {https://doi.org/10.1177/02692163241265231} } @article{logsdon2002-12021425, author = {Logsdon, R. G. and Gibbons, L. E. and McCurry, S. M. and Teri, L.}, title = {{Assessing quality of life in older adults with cognitive impairment}}, journal = {Psychosomatic medicine}, year = {2002}, doi = {10.1097/00006842-200205000-00016}, pmid = {12021425}, url = {https://doi.org/10.1097/00006842-200205000-00016} } @article{ory1999-10224714, author = {Ory, M. G. and Hoffman, R. R. and Yee, J. L. and Tennstedt, S. and Schulz, R.}, title = {{Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers}}, journal = {The Gerontologist}, year = {1999}, doi = {10.1093/geront/39.2.177}, pmid = {10224714}, url = {https://doi.org/10.1093/geront/39.2.177} } @article{covinsky2003-14687259, author = {Covinsky, K. E. and Newcomer, R. and Fox, P. and Wood, J. and Sands, L. and Dane, K. and Yaffe, K.}, title = {{Patient and caregiver characteristics associated with depression in caregivers of patients with dementia}}, journal = {Journal of general internal medicine}, year = {2003}, doi = {10.1111/j.1525-1497.2003.30103.x}, pmid = {14687259}, url = {https://doi.org/10.1111/j.1525-1497.2003.30103.x} } @article{cheng2019-31172302, author = {Cheng, S. T. and Au, A. and Losada, A. and Thompson, L. W. and Gallagher-Thompson, D.}, title = {{Psychological Interventions for Dementia Caregivers: What We Have Achieved, What We Have Learned}}, journal = {Current psychiatry reports}, year = {2019}, doi = {10.1007/s11920-019-1045-9}, pmid = {31172302}, url = {https://doi.org/10.1007/s11920-019-1045-9} } @article{acton2001-11746065, author = {Acton, G. J. and Kang, J.}, title = {{Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis}}, journal = {Research in nursing \& health}, year = {2001}, doi = {10.1002/nur.1036}, pmid = {11746065}, url = {https://doi.org/10.1002/nur.1036} } @article{wolff2018-28637266, author = {Wolff, J. L. and Mulcahy, J. and Huang, J. and Roth, D. L. and Covinsky, K. and Kasper, J. D.}, title = {{Family Caregivers of Older Adults, 1999-2015: Trends in Characteristics, Circumstances, and Role-Related Appraisal}}, journal = {The Gerontologist}, year = {2018}, doi = {10.1093/geront/gnx093}, pmid = {28637266}, url = {https://doi.org/10.1093/geront/gnx093} } @article{vandersteen2004-15086647, author = {van der Steen, J. T. and Kruse, R. L. and Ooms, M. E. and Ribbe, M. W. and van der Wal, G. and Heintz, L. L. and Mehr, D. R.}, title = {{Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: an ocean apart}}, journal = {Journal of the American Geriatrics Society}, year = {2004}, doi = {10.1111/j.1532-5415.2004.52204.x}, pmid = {15086647}, url = {https://doi.org/10.1111/j.1532-5415.2004.52204.x} } @article{selwood2005-15717339, author = {Selwood, A. and Thorgrimsen, L. and Orrell, M.}, title = {{Quality of life in dementia--a one-year follow-up study}}, journal = {International journal of geriatric psychiatry}, year = {2005}, doi = {10.1002/gps.1271}, pmid = {15717339}, url = {https://doi.org/10.1002/gps.1271} } @article{wolters2019-30299452, author = {Wolters, F. J. and Tinga, L. M. and Dhana, K. and Koudstaal, P. J. and Hofman, A. and Bos, D. and Franco, O. H. and Ikram, M. A.}, title = {{Life Expectancy With and Without Dementia: A Population-Based Study of Dementia Burden and Preventive Potential}}, journal = {American journal of epidemiology}, year = {2019}, doi = {10.1093/aje/kwy234}, pmid = {30299452}, url = {https://doi.org/10.1093/aje/kwy234} } @article{teno2021-33989430, author = {Teno, Joan M. and Keohane, Laura M. and Mitchell, Susan L. and Meyers, David J. and Bunker, Jennifer and Bélanger, Emmanuelle and Gozalo, Pedro L. and Trivedi, Amal N.}, title = {{Dying with dementia in Medicare Advantage, Accountable Care Organizations, or traditional Medicare}}, journal = {Journal of the American Geriatrics Society}, year = {2021}, doi = {10.1111/jgs.17225}, pmid = {33989430}, url = {https://doi.org/10.1111/jgs.17225} } @article{sun2025-b7606922, author = {Sun, Fei and Jiang, Lin Hong and Chen, Xiayu Summer and Feng, Yali}, title = {{Interactive AI Technology for Dementia Caregivers: Needs and Implementation Evidence}}, journal = {Journal of Technology in Human Services}, year = {2025}, doi = {10.1080/15228835.2025.2460156}, url = {https://doi.org/10.1080/15228835.2025.2460156} } @article{hu2026-41845865, author = {Hu, Zhiwei and Raji, Mukaila A. and Shan, Yong and Tzeng, Huey‐Ming and O'Mahony, Mr Seán and Kuo, Yong‐Fang}, title = {{Annual Wellness Visits and Timing of Advance Care Planning Among Medicare Beneficiaries With Cognitive Impairment}}, journal = {Journal of the American Geriatrics Society}, year = {2026}, doi = {10.1111/jgs.70368}, pmid = {41845865}, url = {https://doi.org/10.1111/jgs.70368} } @article{beck2017-27995678, author = {Beck, E. R. and McIlfatrick, S. and Hasson, F. and Leavey, G.}, title = {{Nursing home manager's knowledge, attitudes and beliefs about advance care planning for people with dementia in long-term care settings: a cross-sectional survey}}, journal = {Journal of clinical nursing}, year = {2017}, doi = {10.1111/jocn.13690}, pmid = {27995678}, url = {https://doi.org/10.1111/jocn.13690} } @article{tjia2014-25369872, author = {Tjia, J. and Cutrona, S. L. and Peterson, D. and Reed, G. and Andrade, S. E. and Mitchell, S. L.}, title = {{Statin discontinuation in nursing home residents with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2014}, doi = {10.1111/jgs.13105}, pmid = {25369872}, url = {https://doi.org/10.1111/jgs.13105} } @article{fleming2017-28978301, author = {Fleming, J. and Calloway, R. and Perrels, A. and Farquhar, M. and Barclay, S. and Brayne, C.}, title = {{Dying comfortably in very old age with or without dementia in different care settings - a representative "older old" population study}}, journal = {BMC geriatrics}, year = {2017}, doi = {10.1186/s12877-017-0605-2}, pmid = {28978301}, url = {https://doi.org/10.1186/s12877-017-0605-2} } @article{chen2018-29076605, author = {Chen, I. H. and Lin, K. Y. and Hu, S. H. and Chuang, Y. H. and Long, C. O. and Chang, C. C. and Liu, M. F.}, title = {{Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff}}, journal = {Journal of clinical nursing}, year = {2018}, doi = {10.1111/jocn.14132}, pmid = {29076605}, url = {https://doi.org/10.1111/jocn.14132} } @article{konig2014-13a8e35b, author = {König, H. H. and Leicht, H. and Brettschneider, C. and Bachmann, C. and Bickel, H. and Fuchs, A. and Jessen, F. and Köhler, M. and Luppa, M. and Mösch, E. and Pentzek, M. and Werle, J. and Weyerer, S. and Wiese, B. and Scherer, M. and Maier, W.}, title = {{The Costs of Dementia From the Societal Perspective: Is Care Provided in the Community Really Cheaper Than Nursing Home Care?}}, journal = {Journal of the American Medical Directors Association}, year = {2014} } @article{yang2026-42410659, author = {Yang, C. T. and Wilkins, J. M. and Kesselheim, A. S. and Kim, D. H. and Lin, K. J.}, title = {{Clinical outcomes after antipsychotic discontinuation in nursing home residents with dementia: a nationwide cohort study}}, journal = {Alzheimer's Research \& Therapy}, year = {2026}, doi = {10.1186/s13195-026-02134-0}, pmid = {42410659}, url = {https://doi.org/10.1186/s13195-026-02134-0} } @article{lin2025-41198038, author = {Lin, Y. J. and Chen, Y. J. and Ling, D. I. and Fang, JR. and Wu, J. Y. and Lo, Y. T.}, title = {{Effectiveness of Advance Care Planning for End-of-Life Outcomes in Nursing Home Residents With Dementia: A Systematic Review and Meta-Analysis}}, journal = {Journal of the American Medical Directors Association}, year = {2025}, doi = {10.1016/j.jamda.2025.105974}, pmid = {41198038}, url = {https://doi.org/10.1016/j.jamda.2025.105974} } @article{kim2012-21793872, author = {Kim, H. and Chang, M. and Rose, K. and Kim, S.}, title = {{Predictors of caregiver burden in caregivers of individuals with dementia}}, journal = {Journal of advanced nursing}, year = {2012}, doi = {10.1111/j.1365-2648.2011.05787.x}, pmid = {21793872}, url = {https://doi.org/10.1111/j.1365-2648.2011.05787.x} } @article{schoenmakers2010-20307942, author = {Schoenmakers, B. and Buntinx, F. and Delepeleire, J.}, title = {{Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review}}, journal = {Maturitas}, year = {2010}, doi = {10.1016/j.maturitas.2010.02.009}, pmid = {20307942}, url = {https://doi.org/10.1016/j.maturitas.2010.02.009} } @article{condesala2010-20374966, author = {Conde-Sala, J. L. and Garre-Olmo, J. and Turró-Garriga, O. and Vilalta-Franch, J. and López-Pousa, S.}, title = {{Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: an exploratory comparative design}}, journal = {International journal of nursing studies}, year = {2010}, doi = {10.1016/j.ijnurstu.2010.03.001}, pmid = {20374966}, url = {https://doi.org/10.1016/j.ijnurstu.2010.03.001} } @article{riffin2017-28426910, author = {Riffin, C. and Van Ness, P. H. and Wolff, J. L. and Fried, T.}, title = {{Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability}}, journal = {Journal of the American Geriatrics Society}, year = {2017}, doi = {10.1111/jgs.14910}, pmid = {28426910}, url = {https://doi.org/10.1111/jgs.14910} } @article{cohen1993-8314097, author = {Cohen, C. A. and Gold, D. P. and Shulman, K. I. and Wortley, J. T. and McDonald, G. and Wargon, M.}, title = {{Factors determining the decision to institutionalize dementing individuals: a prospective study}}, journal = {The Gerontologist}, year = {1993}, doi = {10.1093/geront/33.6.714}, pmid = {8314097}, url = {https://doi.org/10.1093/geront/33.6.714} } @article{rochon2008-18504337, author = {Rochon, P. A. and Normand, S. L. and Gomes, T. and Gill, S. S. and Anderson, G. M. and Melo, M. and Sykora, K. and Lipscombe, L. and others}, title = {{Antipsychotic therapy and short-term serious events in older adults with dementia}}, journal = {Archives of internal medicine}, year = {2008}, doi = {10.1001/archinte.168.10.1090}, pmid = {18504337}, url = {https://doi.org/10.1001/archinte.168.10.1090} } @article{wisniewski2003-14518801, author = {Wisniewski, SR. and Belle, S. H. and Coon, D. W. and Marcus, S. M. and Ory, M. G. and Burgio, L. D. and Burns, R. and Schulz, R. and others}, title = {{The Resources for Enhancing Alzheimer's Caregiver Health (REACH): project design and baseline characteristics}}, journal = {Psychology and aging}, year = {2003}, doi = {10.1037/0882-7974.18.3.375}, pmid = {14518801}, url = {https://doi.org/10.1037/0882-7974.18.3.375} } @article{draper1992-1512385, author = {Draper, B. M. and Poulos, C. J. and Cole, A. M. and Poulos, R. G. and Ehrlich, F.}, title = {{A comparison of caregivers for elderly stroke and dementia victims}}, journal = {Journal of the American Geriatrics Society}, year = {1992}, doi = {10.1111/j.1532-5415.1992.tb01986.x}, pmid = {1512385}, url = {https://doi.org/10.1111/j.1532-5415.1992.tb01986.x} } @article{livingston2010-20719843, author = {Livingston, G. and Leavey, G. and Manela, M. and Livingston, D. and Rait, G. and Sampson, E. and Bavishi, S. and Shahriyarmolki, K. and others}, title = {{Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK}}, journal = {BMJ (Clinical research ed.)}, year = {2010}, doi = {10.1136/bmj.c4184}, pmid = {20719843}, url = {https://doi.org/10.1136/bmj.c4184} } @article{kiecoltglaser1991-1656478, author = {Kiecolt-Glaser, J. K. and Dura, JR. and Speicher, C. E. and Trask, O. J. and Glaser, R.}, title = {{Spousal caregivers of dementia victims: longitudinal changes in immunity and health}}, journal = {Psychosomatic medicine}, year = {1991}, doi = {10.1097/00006842-199107000-00001}, pmid = {1656478}, url = {https://doi.org/10.1097/00006842-199107000-00001} } @article{ibanez2021-34790905, author = {Ibáñez, A. and Pina-Escudero, S. D. and Possin, K. L. and Quiroz, Y. T. and Peres, F. A. and Slachevsky, A. and Sosa, A. L. and Brucki, S. M. D. and others}, title = {{Dementia caregiving across Latin America and the Caribbean and brain health diplomacy}}, journal = {The lancet. Healthy longevity}, year = {2021}, doi = {10.1016/s2666-7568(21)00031-3}, pmid = {34790905}, url = {https://doi.org/10.1016/s2666-7568(21)00031-3} } @article{gallagher2011-21547745, author = {Gallagher, D. and Ni Mhaolain, A. and Crosby, L. and Ryan, D. and Lacey, L. and Coen, R. F. and Walsh, C. and Coakley, D. and others}, title = {{Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers}}, journal = {Aging \& mental health}, year = {2011}, doi = {10.1080/13607863.2011.562179}, pmid = {21547745}, url = {https://doi.org/10.1080/13607863.2011.562179} } @article{reuben2019-31355423, author = {Reuben, David B. and Tan, Zaldy Sy and Romero, Tahmineh and Wenger, Neil S. and Keeler, Emmett B. and Jennings, Lee A.}, title = {{Patient and Caregiver Benefit From a Comprehensive Dementia Care Program: 1‐Year Results From the UCLA Alzheimer's and Dementia Care Program}}, journal = {Journal of the American Geriatrics Society}, year = {2019}, doi = {10.1111/jgs.16085}, pmid = {31355423}, url = {https://doi.org/10.1111/jgs.16085} } @article{wolff2025-39899774, author = {Wolff, Jennifer L. and Cornman, Jennifer C. and Freedman, Vicki A.}, title = {{The Number Of Family Caregivers Helping Older US Adults Increased From 18 Million To 24 Million, 2011–22}}, journal = {Health Affairs}, year = {2025}, doi = {10.1377/hlthaff.2024.00978}, pmid = {39899774}, url = {https://doi.org/10.1377/hlthaff.2024.00978} } @article{li2026-41714582, author = {Li, Niying and Look, Kevin A. and Chou, Lin‐Na}, title = {{Dementia Family Caregivers’ Involvement and Perceived Challenges in Health Care Interactions: Informing the GUIDE Model}}, journal = {Journal of General Internal Medicine}, year = {2026}, doi = {10.1007/s11606-026-10208-w}, pmid = {41714582}, url = {https://doi.org/10.1007/s11606-026-10208-w} } @article{maust2025-40145303, author = {Maust, Donovan T. and Davis, Rachel E. and Muench, Ulrike and Marcus, Steven C. and Spetz, Joanne}, title = {{Clinician type and care setting for treatment of Medicare beneficiaries with dementia}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70102}, pmid = {40145303}, url = {https://doi.org/10.1002/alz.70102} } @article{quinn2026-41511822, author = {Quinn, Kieran L. and Stukel, Thérèse A. and Pugliese, Michael and Detsky, Allan S. and Heckman, George and Omilabu, Mariam and Stall, Nathan M. and Vaz, Desiree and others}, title = {{Association of Palliative Care Initiation With Acute Healthcare Utilization Among Community‐Dwelling Adults Living With Dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2026}, doi = {10.1111/jgs.70282}, pmid = {41511822}, url = {https://doi.org/10.1111/jgs.70282} } @article{xu2025-40957850, author = {Xu, Jingyuan and Smaling, Hanneke J. A. and Nakanishi, Miharu and Shinan‐Altman, Shiri and Radbruch, Lukas and Gaertner, Jan and Achterberg, Wilco P. and Mehr, David R. and others}, title = {{Acceptability of Euthanasia for People With Dementia: Perspectives of Clinicians From Six Countries}}, journal = {American Journal of Geriatric Psychiatry}, year = {2025}, doi = {10.1016/j.jagp.2025.08.003}, pmid = {40957850}, url = {https://doi.org/10.1016/j.jagp.2025.08.003} } @article{chen2026-42108877, author = {Chen, Chia‐Hung and Sampson, Elizabeth L. and Liao, Jung‐Yu and Ho, Chung‐Han and Tseng, Wei-Zhe and Petersen, Irene and Wang, Yi‐Chi and Lai, Yi-Chen and others}, title = {{Impact of home healthcare reform on place of death for people with dementia: A nationwide cohort study accounting for cultural factors of impending death discharge}}, journal = {Palliative \& Supportive Care}, year = {2026}, doi = {10.1017/s1478951526102491}, pmid = {42108877}, url = {https://doi.org/10.1017/s1478951526102491} } @article{sury2013-23425369, author = {Sury, L. and Burns, K. and Brodaty, H.}, title = {{Moving in: adjustment of people living with dementia going into a nursing home and their families}}, journal = {International psychogeriatrics}, year = {2013}, doi = {10.1017/s1041610213000057}, pmid = {23425369}, url = {https://doi.org/10.1017/s1041610213000057} } @article{givens2012-22428661, author = {Givens, J. L. and Selby, K. and Goldfeld, K. S. and Mitchell, S. L.}, title = {{Hospital transfers of nursing home residents with advanced dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2012}, doi = {10.1111/j.1532-5415.2012.03919.x}, pmid = {22428661}, url = {https://doi.org/10.1111/j.1532-5415.2012.03919.x} } @article{rakowski2006-17699319, author = {Rakowski, D. A. and Caillard, S. and Agodoa, L. Y. and Abbott, K. C.}, title = {{Dementia as a predictor of mortality in dialysis patients}}, journal = {Clinical journal of the American Society of Nephrology : CJASN}, year = {2006}, doi = {10.2215/cjn.00470705}, pmid = {17699319}, url = {https://doi.org/10.2215/cjn.00470705} } @article{mitchell2006-16917187, author = {Mitchell, S. L. and Kiely, D. K. and Jones, R. N. and Prigerson, H. and Volicer, L. and Teno, J. M.}, title = {{Advanced dementia research in the nursing home: the CASCADE study}}, journal = {Alzheimer disease and associated disorders}, year = {2006}, doi = {10.1097/00002093-200607000-00008}, pmid = {16917187}, url = {https://doi.org/10.1097/00002093-200607000-00008} } @article{givens2012-22037596, author = {Givens, J. L. and Lopez, R. P. and Mazor, K. M. and Mitchell, S. L.}, title = {{Sources of stress for family members of nursing home residents with advanced dementia}}, journal = {Alzheimer disease and associated disorders}, year = {2012}, doi = {10.1097/wad.0b013e31823899e4}, pmid = {22037596}, url = {https://doi.org/10.1097/wad.0b013e31823899e4} } @article{martinsson2018-30059515, author = {Martinsson, L. and Lundström, S. and Sundelöf, J.}, title = {{Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study}}, journal = {PloS one}, year = {2018}, doi = {10.1371/journal.pone.0201051}, pmid = {30059515}, url = {https://doi.org/10.1371/journal.pone.0201051} } @article{givens2018-29247754, author = {Givens, J. L. and Sudore, R. L. and Marshall, G. A. and Dufour, A. B. and Kopits, I. and Mitchell, S. L.}, title = {{Advance Care Planning in Community-Dwelling Patients With Dementia}}, journal = {Journal of pain and symptom management}, year = {2018}, doi = {10.1016/j.jpainsymman.2017.12.473}, pmid = {29247754}, url = {https://doi.org/10.1016/j.jpainsymman.2017.12.473} } @article{tam2021-33554905, author = {Tam, M. T. and Dosso, J. A. and Robillard, J. M.}, title = {{The Impact of a Global Pandemic on People Living with Dementia and Their Care Partners: Analysis of 417 Lived Experience Reports}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2021}, doi = {10.3233/jad-201114}, pmid = {33554905}, url = {https://doi.org/10.3233/jad-201114} } @article{jennings2020-32573765, author = {Jennings, L. A. and Hollands, S. and Keeler, E. and Wenger, N. S. and Reuben, D. B.}, title = {{The Effects of Dementia Care Co-Management on Acute Care, Hospice, and Long-Term Care Utilization}}, journal = {Journal of the American Geriatrics Society}, year = {2020}, doi = {10.1111/jgs.16667}, pmid = {32573765}, url = {https://doi.org/10.1111/jgs.16667} } @article{goossens2020-33008335, author = {Goossens, B. and Sevenants, A. and Declercq, A. and Van Audenhove, C.}, title = {{Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study}}, journal = {BMC geriatrics}, year = {2020}, doi = {10.1186/s12877-020-01797-0}, pmid = {33008335}, url = {https://doi.org/10.1186/s12877-020-01797-0} } @article{luttenberger2010-20478097, author = {Luttenberger, K. and Graessel, E.}, title = {{Recording care time in nursing homes: development and validation of the "RUD-FOCA" (Resource Utilization in Dementia-Formal Care)}}, journal = {International psychogeriatrics}, year = {2010}, doi = {10.1017/s1041610210000487}, pmid = {20478097}, url = {https://doi.org/10.1017/s1041610210000487} } @article{mirandacastillo2010-20214844, author = {Miranda-Castillo, C. and Woods, B. and Orrell, M.}, title = {{People with dementia living alone: what are their needs and what kind of support are they receiving?}}, journal = {International psychogeriatrics}, year = {2010}, doi = {10.1017/s104161021000013x}, pmid = {20214844}, url = {https://doi.org/10.1017/s104161021000013x} } @article{papastavrou2007-17442030, author = {Papastavrou, E. and Kalokerinou, A. and Papacostas, S. S. and Tsangari, H. and Sourtzi, P.}, title = {{Caring for a relative with dementia: family caregiver burden}}, journal = {Journal of advanced nursing}, year = {2007}, doi = {10.1111/j.1365-2648.2007.04250.x}, pmid = {17442030}, url = {https://doi.org/10.1111/j.1365-2648.2007.04250.x} } @article{gitlin2015-26035597, author = {Gitlin, L. N. and Marx, K. and Stanley, I. H. and Hodgson, N.}, title = {{Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps}}, journal = {The Gerontologist}, year = {2015}, doi = {10.1093/geront/gnu123}, pmid = {26035597}, url = {https://doi.org/10.1093/geront/gnu123} } @article{prince2004-14758582, author = {Prince, M. and {10/66 Dementia Research Group}}, title = {{Care arrangements for people with dementia in developing countries}}, journal = {International journal of geriatric psychiatry}, year = {2004}, doi = {10.1002/gps.1046}, pmid = {14758582}, url = {https://doi.org/10.1002/gps.1046} } @article{zucchella2018-30619031, author = {Zucchella, C. and Sinforiani, E. and Tamburin, S. and Federico, A. and Mantovani, E. and Bernini, S. and Casale, R. and Bartolo, M.}, title = {{The Multidisciplinary Approach to Alzheimer's Disease and Dementia. A Narrative Review of Non-Pharmacological Treatment}}, journal = {Frontiers in neurology}, year = {2018}, doi = {10.3389/fneur.2018.01058}, pmid = {30619031}, url = {https://doi.org/10.3389/fneur.2018.01058} } @article{riffin2019-30452088, author = {Riffin, C. and Van Ness, P. H. and Wolff, J. L. and Fried, T.}, title = {{Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers}}, journal = {Journal of the American Geriatrics Society}, year = {2019}, doi = {10.1111/jgs.15664}, pmid = {30452088}, url = {https://doi.org/10.1111/jgs.15664} } @article{fonareva2014-24507463, author = {Fonareva, I. and Oken, B. S.}, title = {{Physiological and functional consequences of caregiving for relatives with dementia}}, journal = {International psychogeriatrics}, year = {2014}, doi = {10.1017/s1041610214000039}, pmid = {24507463}, url = {https://doi.org/10.1017/s1041610214000039} } @article{innes2011-21093996, author = {Innes, A. and Morgan, D. and Kosteniuk, J.}, title = {{Dementia care in rural and remote settings: a systematic review of informal/family caregiving}}, journal = {Maturitas}, year = {2011}, doi = {10.1016/j.maturitas.2010.10.002}, pmid = {21093996}, url = {https://doi.org/10.1016/j.maturitas.2010.10.002} } @article{arighi2021-33459891, author = {Arighi, A. and Fumagalli, G. G. and Carandini, T. and Pietroboni, A. M. and De Riz, M. A. and Galimberti, D. and Scarpini, E.}, title = {{Facing the digital divide into a dementia clinic during COVID-19 pandemic: caregiver age matters}}, journal = {Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology}, year = {2021}, doi = {10.1007/s10072-020-05009-w}, pmid = {33459891}, url = {https://doi.org/10.1007/s10072-020-05009-w} } @article{williamson2023-36861183, author = {Williamson, Lesley E. and Léniz, Javiera and Chukwusa, Emeka and Evans, Catherine and Sleeman, Katherine E}, title = {{A population-based retrospective cohort study of end-of-life emergency department visits by people with dementia: multilevel modelling of individual- and service-level factors using linked data}}, journal = {Age and Ageing}, year = {2023}, doi = {10.1093/ageing/afac332}, pmid = {36861183}, url = {https://doi.org/10.1093/ageing/afac332} } @article{andres2025-41241927, author = {Andres, Ellie B and Malhotra, Chetna and {PISCES Study Group}}, title = {{The final year for community-dwelling older adults with dementia in an Asian setting: admissions, interventions, and caregiver burden}}, journal = {The Journals of Gerontology Series A}, year = {2025}, doi = {10.1093/gerona/glaf227}, pmid = {41241927}, url = {https://doi.org/10.1093/gerona/glaf227} } @article{fowler2025-40410933, author = {Fowler, Nicole R. and Partrick, Katherine A. and Taylor, James O. and Hornbecker, Michael and Kelleher, Kevin John and Boustani, Malaz A. and Cummings, Jeffrey L. and MacLeod, Tim and others}, title = {{Implementing early detection of cognitive impairment in primary care to improve care for older adults}}, journal = {Journal of Internal Medicine}, year = {2025}, doi = {10.1111/joim.20098}, pmid = {40410933}, url = {https://doi.org/10.1111/joim.20098} } @article{werner2025-40377938, author = {Werner, Rachel M. and Kim, Seiyoun and Konetzka, Rita Tamara}, title = {{Trends in Home Health Care Among Traditional Medicare Beneficiaries With or Without Dementia}}, journal = {JAMA Network Open}, year = {2025}, doi = {10.1001/jamanetworkopen.2025.10933}, pmid = {40377938}, url = {https://doi.org/10.1001/jamanetworkopen.2025.10933} } @article{zhao2025-40568416, author = {Zhao, Sijia and Scholcz, Anna and Rouse, Matthew A and Klar, Verena Svenja and Ganse‐Dumrath, Akke and Toniolo, Sofia and Broulidakis, M. John and Ralph, Matthew A. Lambon and others}, title = {{Self- versus caregiver-reported apathy across neurological disorders}}, journal = {Brain Communications}, year = {2025}, doi = {10.1093/braincomms/fcaf235}, pmid = {40568416}, url = {https://doi.org/10.1093/braincomms/fcaf235} } @article{oyeyemi2025-41236764, author = {Oyeyemi, Deborah M. and Ikesu, Ryo and Saliba, Debra and Walling, Anne Margaret and Essien, Utibe R. and Norris, Keith C. and Klomhaus, Alexandra M. and Xu, Haiyong and others}, title = {{End-of-Life Care for Older Adults With Dementia by Race and Ethnicity and Physicians’ Role}}, journal = {JAMA Health Forum}, year = {2025}, doi = {10.1001/jamahealthforum.2025.4235}, pmid = {41236764}, url = {https://doi.org/10.1001/jamahealthforum.2025.4235} } @article{chen2026-41734929, author = {Chen, Yong-chuan and Nieh, Hsiao‐Chi and Chen, Hsiao-Chu and Chen, Jung-Chih and Chang, Mei‐Yu and Wu, Pi-O}, title = {{Generative artificial intelligence in dementia care: a scoping review protocol on nursing roles, experiences and ethical perspectives}}, journal = {BMJ Open}, year = {2026}, doi = {10.1136/bmjopen-2025-114064}, pmid = {41734929}, url = {https://doi.org/10.1136/bmjopen-2025-114064} } @article{wu2025-41460179, author = {Wu, Kuan-Ching and Belza, Basia L. and Berry, Donna Lynn and Lewis, Frances Marcus and Hartzler, Andrea L. and Zaslavsky, Oleg}, title = {{Digital health interventions for urinary tract infection prevention and management in people living with dementia and their family caregivers: a scoping review}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf268}, pmid = {41460179}, url = {https://doi.org/10.1093/geront/gnaf268} } @article{krier2026-41819365, author = {Krier, Damien and Abouelfath, Abdelilah and Jové, Jérémy and Amieva, Hélène and Carcaillon‐Bentata, Laure and Wittwer, Jérôme}, title = {{Healthcare Utilization Among Older Adults With Dementia in France: A Comparative Analysis of a Dementia Village and Traditional Nursing Homes}}, journal = {Value in Health}, year = {2026}, doi = {10.1016/j.jval.2026.02.011}, pmid = {41819365}, url = {https://doi.org/10.1016/j.jval.2026.02.011} } @article{sullivandonald2022-35181415, author = {Sullivan Donald, R. and Pedro, Gozalo and Jennifer, Bunker and Teno Joan, M.}, title = {{Mechanical Ventilation and Survival in Patients With Advanced Dementia in Medicare Advantage}}, journal = {Journal of pain and symptom management}, year = {2022}, doi = {10.1016/j.jpainsymman.2022.02.011}, pmid = {35181415}, url = {https://doi.org/10.1016/j.jpainsymman.2022.02.011} } @article{kok2013-24403908, author = {Kok, Jeroen S. and Berg, Ina J. and Scherder, Erik}, title = {{Special Care Units and Traditional Care in Dementia: Relationship with Behavior, Cognition, Functional Status and Quality of Life - A Review}}, journal = {Dementia and Geriatric Cognitive Disorders Extra}, year = {2013}, doi = {10.1159/000353441}, pmid = {24403908}, url = {https://doi.org/10.1159/000353441} } @article{pearlin1990-2276631, author = {Pearlin, Leonard I. and Mullan, Joseph T. and Semple, Shirley J. and Skaff, Marilyn McKean}, title = {{Caregiving and the Stress Process: An Overview of Concepts and Their Measures}}, journal = {The Gerontologist}, year = {1990}, doi = {10.1093/geront/30.5.583}, pmid = {2276631}, url = {https://doi.org/10.1093/geront/30.5.583} } @article{betz2021-34550082, author = {Betz, M. E. and Polzer, E. and Nearing, K. and Knoepke, C. E. and Johnson, R. L. and Meador, L. and Matlock, D. D.}, title = {{Feasibility and Acceptability of a Web-Based Caregiver Decision Aid (Safety in Dementia) for Firearm Access: Pilot Randomized Controlled Trial}}, journal = {JMIR formative research}, year = {2021}, doi = {10.2196/30990}, pmid = {34550082}, url = {https://doi.org/10.2196/30990} } @article{xu2023-37676706, author = {Xu, L. and Fields, N. L. and Daniel, K. M. and Cipher, D. J. and Troutman, B. A.}, title = {{Reminiscence and Digital Storytelling to Improve the Social and Emotional Well-Being of Older Adults With Alzheimer's Disease and Related Dementias: Protocol for a Mixed Methods Study Design and a Randomized Controlled Trial}}, journal = {JMIR research protocols}, year = {2023}, doi = {10.2196/49752}, pmid = {37676706}, url = {https://doi.org/10.2196/49752} } @article{schulz1995-8557205, author = {Schulz, R. and O'Brien, A. T. and Bookwala, J. and Fleissner, K.}, title = {{Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes}}, journal = {The Gerontologist}, year = {1995}, doi = {10.1093/geront/35.6.771}, pmid = {8557205}, url = {https://doi.org/10.1093/geront/35.6.771} } @article{banerjee2006-16421113, author = {Banerjee, S. and Smith, S. C. and Lamping, D. L. and Harwood, R. H. and Foley, B. and Smith, P. and Murray, J. and Prince, M. and others}, title = {{Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia}}, journal = {Journal of neurology, neurosurgery, and psychiatry}, year = {2006}, doi = {10.1136/jnnp.2005.072983}, pmid = {16421113}, url = {https://doi.org/10.1136/jnnp.2005.072983} } @article{campbell2008-18613247, author = {Campbell, P. and Wright, J. and Oyebode, J. and Job, D. and Crome, P. and Bentham, P. and Jones, L. and Lendon, C.}, title = {{Determinants of burden in those who care for someone with dementia}}, journal = {International journal of geriatric psychiatry}, year = {2008}, doi = {10.1002/gps.2071}, pmid = {18613247}, url = {https://doi.org/10.1002/gps.2071} } @article{parker2008-21631819, author = {Parker, D. and Mills, S. and Abbey, J.}, title = {{Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review}}, journal = {International journal of evidence-based healthcare}, year = {2008}, doi = {10.1111/j.1744-1609.2008.00090.x}, pmid = {21631819}, url = {https://doi.org/10.1111/j.1744-1609.2008.00090.x} } @article{mihailidis2008-18992135, author = {Mihailidis, A. and Boger, J. N. and Craig, T. and Hoey, J.}, title = {{The COACH prompting system to assist older adults with dementia through handwashing: an efficacy study}}, journal = {BMC geriatrics}, year = {2008}, doi = {10.1186/1471-2318-8-28}, pmid = {18992135}, url = {https://doi.org/10.1186/1471-2318-8-28} } @article{white2026-42218737, author = {White, Elizabeth M. and Gozalo, Pedro L. and Santostefano, Christopher M. and Kosar, Cyrus M. and McGarry, Brian E. and Geng, Fangli and Zorowitz, Robert A. and Grabowski, David C. and others}, title = {{Institutional Special Needs Plans and End-of-Life Outcomes for Nursing Home Residents With Dementia}}, journal = {JAMA Health Forum}, year = {2026}, doi = {10.1001/jamahealthforum.2026.1649}, pmid = {42218737}, url = {https://doi.org/10.1001/jamahealthforum.2026.1649} } @article{wang2021-34382208, author = {Wang, Sijiu and Yan, Di and Temkin‐Greener, Helena and Cai, Shubing}, title = {{Nursing home admissions for persons with dementia: Role of home‐ and community‐based services}}, journal = {Health Services Research}, year = {2021}, doi = {10.1111/1475-6773.13715}, pmid = {34382208}, url = {https://doi.org/10.1111/1475-6773.13715} } @article{degraaff2025-40087581, author = {de Graaff, M. and van der Heide, Iris and Rademakers, Jany J. D. J. M. and van Valkengoed, Irene G. M. and Francke, A.L. and Woonink, A. and Bijnsdorp, Femmy M.}, title = {{Is caregiver burden associated with sex and gender-related characteristics? A large-scale survey study among family caregivers of people with dementia}}, journal = {BMC Geriatrics}, year = {2025}, doi = {10.1186/s12877-025-05795-y}, pmid = {40087581}, url = {https://doi.org/10.1186/s12877-025-05795-y} } @article{hu2025-39794759, author = {Hu, Ying and Guo, Xiajun and You, Hui and Liu, Li and Wang, Yao}, title = {{Mediating effect of social support on the relationships between caregiver burden and quality of life in family caregivers of people with dementia: a cross-sectional study in Rural China}}, journal = {BMC Nursing}, year = {2025}, doi = {10.1186/s12912-024-02671-9}, pmid = {39794759}, url = {https://doi.org/10.1186/s12912-024-02671-9} } @article{pokala2025-40831449, author = {Pokala, Shriya S. and Wandera, Stephen Ojiambo and Kawooya, Shafiq and Victoria, Akia Emily and Odo, Lodrick Wabwire and Nakasujja, Noeline and Diaz, Monica Maria}, title = {{Dementia knowledge and caregiver burden among carers of older adults in rural eastern Uganda}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70587}, pmid = {40831449}, url = {https://doi.org/10.1002/alz.70587} } @article{brookman2025-39945461, author = {Brookman, Ruth and Lipson‐Smith, Ruby and Maurice, Olivia R. and McIlwain, Nina and Hofstaetter, Lukas and DiGiacomo, Michelle L and Chróinín, Danielle Ní and Cannings, Madeleine and others}, title = {{Caring for People With Dementia: Mapping the Experience and Journey From Diagnosis}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf053}, pmid = {39945461}, url = {https://doi.org/10.1093/geront/gnaf053} } @article{lim2025-40605056, author = {Lim, Xin Min and Chew, Esther Yin Hui and Glass, George Frederick and Chan, Ee‐Yuee}, title = {{Caregiver-involved reminiscence for persons with dementia: a scoping review protocol}}, journal = {Systematic Reviews}, year = {2025}, doi = {10.1186/s13643-025-02865-5}, pmid = {40605056}, url = {https://doi.org/10.1186/s13643-025-02865-5} } @article{hommel2025-41033755, author = {Hommel, Danny and Azizi, Bahar and Visser, Mandy and Bolt, Sascha and Blom, Jeanet W. and Janssen, Daisy J.A. and van Hout, Hein P.J. and Francke, Anneke L. and others}, title = {{Occurrence of advance care planning for persons with dementia, cancer and other chronic-progressive diseases in general practice: longitudinal analysis of data from health records linked with administrative data}}, journal = {BMJ Open}, year = {2025}, doi = {10.1136/bmjopen-2024-097655}, pmid = {41033755}, url = {https://doi.org/10.1136/bmjopen-2024-097655} } @article{mitchell2004-14769629, author = {Mitchell, S. L. and Kiely, D. K. and Hamel, M. B.}, title = {{Dying with advanced dementia in the nursing home}}, journal = {Archives of internal medicine}, year = {2004}, doi = {10.1001/archinte.164.3.321}, pmid = {14769629}, url = {https://doi.org/10.1001/archinte.164.3.321} } @article{shega2008-18261878, author = {Shega, J. W. and Hougham, G. W. and Stocking, C. B. and Cox-Hayley, D. and Sachs, G. A.}, title = {{Patients dying with dementia: experience at the end of life and impact of hospice care}}, journal = {Journal of pain and symptom management}, year = {2008}, doi = {10.1016/j.jpainsymman.2007.06.011}, pmid = {18261878}, url = {https://doi.org/10.1016/j.jpainsymman.2007.06.011} } @article{tjia2014-25201279, author = {Tjia, J. and Briesacher, B. A. and Peterson, D. and Liu, Q. and Andrade, S. E. and Mitchell, S. L.}, title = {{Use of medications of questionable benefit in advanced dementia}}, journal = {JAMA internal medicine}, year = {2014}, doi = {10.1001/jamainternmed.2014.4103}, pmid = {25201279}, url = {https://doi.org/10.1001/jamainternmed.2014.4103} } @article{vandervoort2014-24614884, author = {Vandervoort, A. and Houttekier, D. and Vander Stichele, R. and van der Steen, J. T. and Van den Block, L.}, title = {{Quality of dying in nursing home residents dying with dementia: does advanced care planning matter? A nationwide postmortem study}}, journal = {PloS one}, year = {2014}, doi = {10.1371/journal.pone.0091130}, pmid = {24614884}, url = {https://doi.org/10.1371/journal.pone.0091130} } @article{mitchell2007-17509813, author = {Mitchell, S. L. and Kiely, D. K. and Miller, S. C. and Connor, SR. and Spence, C. and Teno, J. M.}, title = {{Hospice care for patients with dementia}}, journal = {Journal of pain and symptom management}, year = {2007}, doi = {10.1016/j.jpainsymman.2007.01.003}, pmid = {17509813}, url = {https://doi.org/10.1016/j.jpainsymman.2007.01.003} } @article{brazil2015-25904016, author = {Brazil, K. and Carter, G. and Galway, K. and Watson, M. and van der Steen, J. T.}, title = {{General practitioners perceptions on advance care planning for patients living with dementia}}, journal = {BMC palliative care}, year = {2015}, doi = {10.1186/s12904-015-0019-x}, pmid = {25904016}, url = {https://doi.org/10.1186/s12904-015-0019-x} } @article{aldridge2022-34665050, author = {Aldridge, M. D. and Hunt, L. and Husain, M. and Li, L. and Kelley, A.}, title = {{Impact of Comorbid Dementia on Patterns of Hospice Use}}, journal = {Journal of palliative medicine}, year = {2022}, doi = {10.1089/jpm.2021.0055}, pmid = {34665050}, url = {https://doi.org/10.1089/jpm.2021.0055} } @article{boyd2019-31117991, author = {Boyd, M. and Frey, R. and Balmer, D. and Robinson, J. and McLeod, H. and Foster, S. and Slark, J. and Gott, M.}, title = {{End of life care for long-term care residents with dementia, chronic illness and cancer: prospective staff survey}}, journal = {BMC geriatrics}, year = {2019}, doi = {10.1186/s12877-019-1159-2}, pmid = {31117991}, url = {https://doi.org/10.1186/s12877-019-1159-2} } @article{tsai2015-26230958, author = {Tsai, C. F. and Lee, Y. T. and Lee, W. J. and Hwang, J. P. and Wang, S. J. and Fuh, J. L.}, title = {{Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia}}, journal = {PloS one}, year = {2015}, doi = {10.1371/journal.pone.0133711}, pmid = {26230958}, url = {https://doi.org/10.1371/journal.pone.0133711} } @article{fogg2018-29947150, author = {Fogg, C. and Griffiths, P. and Meredith, P. and Bridges, J.}, title = {{Hospital outcomes of older people with cognitive impairment: An integrative review}}, journal = {International journal of geriatric psychiatry}, year = {2018}, doi = {10.1002/gps.4919}, pmid = {29947150}, url = {https://doi.org/10.1002/gps.4919} } @article{gaugler2003-12677079, author = {Gaugler, J. E. and Kane, R. L. and Kane, R. A. and Clay, T. and Newcomer, R.}, title = {{Caregiving and institutionalization of cognitively impaired older people: utilizing dynamic predictors of change}}, journal = {The Gerontologist}, year = {2003}, doi = {10.1093/geront/43.2.219}, pmid = {12677079}, url = {https://doi.org/10.1093/geront/43.2.219} } @article{afram2014-24238605, author = {Afram, B. and Stephan, A. and Verbeek, H. and Bleijlevens, M. H. and Suhonen, R. and Sutcliffe, C. and Raamat, K. and Cabrera, E. and others}, title = {{Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries}}, journal = {Journal of the American Medical Directors Association}, year = {2014}, doi = {10.1016/j.jamda.2013.09.012}, pmid = {24238605}, url = {https://doi.org/10.1016/j.jamda.2013.09.012} } @article{hebert2001-11682577, author = {Hébert, R. and Dubois, M. F. and Wolfson, C. and Chambers, L. and Cohen, C.}, title = {{Factors associated with long-term institutionalization of older people with dementia: data from the Canadian Study of Health and Aging}}, journal = {The journals of gerontology. Series A, Biological sciences and medical sciences}, year = {2001}, doi = {10.1093/gerona/56.11.m693}, pmid = {11682577}, url = {https://doi.org/10.1093/gerona/56.11.m693} } @article{zanetti1999-9988291, author = {Zanetti, O. and Geroldi, C. and Frisoni, G. B. and Bianchetti, A. and Trabucchi, M.}, title = {{Contrasting results between caregiver's report and direct assessment of activities of daily living in patients affected by mild and very mild dementia: the contribution of the caregiver's personal characteristics}}, journal = {Journal of the American Geriatrics Society}, year = {1999}, doi = {10.1111/j.1532-5415.1999.tb04578.x}, pmid = {9988291}, url = {https://doi.org/10.1111/j.1532-5415.1999.tb04578.x} } @article{savla2021-32827214, author = {Savla, J. and Roberto, K. A. and Blieszner, R. and McCann, B. R. and Hoyt, E. and Knight, A. L.}, title = {{Dementia Caregiving During the "Stay-at-Home" Phase of COVID-19 Pandemic}}, journal = {The journals of gerontology. Series B, Psychological sciences and social sciences}, year = {2021}, doi = {10.1093/geronb/gbaa129}, pmid = {32827214}, url = {https://doi.org/10.1093/geronb/gbaa129} } @article{houttekier2010-20398157, author = {Houttekier, Dirk and Cohen, Joachim and Bilsen, Johan J.R. and Addington-Hall, Julia M and Onwuteaka-Philipsen, Bregje Dorien and Deliëns, Luc}, title = {{Place of Death of Older Persons with Dementia. A Study in Five European Countries}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2010.02771.x}, pmid = {20398157}, url = {https://doi.org/10.1111/j.1532-5415.2010.02771.x} } @article{guan2025-39876992, author = {Guan, Xin and Duan, A-min and Xin, Gong-kai and Oyebode, Jan Rachel and Liu, Yu}, title = {{Barriers and facilitators to implementing person-centred dementia care in long-term care facilities in Western and Asian countries: a scoping review}}, journal = {Frontiers in Psychiatry}, year = {2025}, doi = {10.3389/fpsyt.2024.1523501}, pmid = {39876992}, url = {https://doi.org/10.3389/fpsyt.2024.1523501} } @article{vandersteen2025-40032035, author = {van der Steen, Jenny Theodora and Van den Block, Lieve and Nakanishi, Miharu and Dening, Karen Harrison and Parker, Deborah and Larkin, Philip Joseph and Di Giulio, Paola and der Schmitten, Jürgen in and others}, title = {{Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study}}, journal = {Journal of Pain and Symptom Management}, year = {2025}, doi = {10.1016/j.jpainsymman.2025.02.471}, pmid = {40032035}, url = {https://doi.org/10.1016/j.jpainsymman.2025.02.471} } @article{dibaodina2025-39984902, author = {Dibao-Dina, Clarisse and Lydia, Nasri and Dagot, Céline and Fouquet, Jean-Philippe and Sophie, Rideau and Dumas, Vincent and Guillaume, Neff and Véronique, Payen and others}, title = {{Identifying the needs of natural caregivers caring for a person with dementia: a mixed method study}}, journal = {BMC Family Practice}, year = {2025}, doi = {10.1186/s12875-025-02724-1}, pmid = {39984902}, url = {https://doi.org/10.1186/s12875-025-02724-1} } @article{ali2025-40259973, author = {Ali, Amira Mohammed and AL-Dossary, Saeed Abdullah and Laranjeira, Carlos and Selim, Abeer and Hallit, Souheil R. and Alkhamees, Abdulmajeed A. and Aljubilah, Aljawharah Fahad and Aljaberi, Musheer Abdulwahid Abdo and others}, title = {{Loneliness among dementia caregivers: evaluation of the psychometric properties and cutoff score of the Three-item UCLA Loneliness Scale}}, journal = {Frontiers in Psychiatry}, year = {2025}, doi = {10.3389/fpsyt.2025.1526569}, pmid = {40259973}, url = {https://doi.org/10.3389/fpsyt.2025.1526569} } @article{deoliveira2025-39843221, author = {de Oliveira, Bárbara Silva and Santos, Daniela Silva and Freire, Geruza Diogo and Moura, Clícia Grazielly de Lima and Nascimento, Ana Clara Lira do and Barbosa, Éverton Emanuel da Silva and Ferraz, Lucas Ribeiro and Silva, Hugo Rafael de Souza e}, title = {{Repercussions of abuse by caregivers in the elderly population with dementia: a scoping review}}, journal = {Psychogeriatrics}, year = {2025}, doi = {10.1111/psyg.13244}, pmid = {39843221}, url = {https://doi.org/10.1111/psyg.13244} } @article{yu2025-40459071, author = {Yu, Doris Sau Fung and Cheng, Sheung‐Tak and Chen, Kevin Shuang Zhou}, title = {{Model Predicting Positive Aspects of Caregiving Among Family Cares of Persons With Dementia: A Longitudinal Cohort Study}}, journal = {Journal of Advanced Nursing}, year = {2025}, doi = {10.1111/jan.17083}, pmid = {40459071}, url = {https://doi.org/10.1111/jan.17083} } @article{ong2025-40650992, author = {Ong, Xin Wen and Le Couteur, David George and Waite, Louise M. and Thillainadesan, Janani}, title = {{End-of-life care in hospitalized patients with dementia}}, journal = {The Journals of Gerontology Series A}, year = {2025}, doi = {10.1093/gerona/glaf120}, pmid = {40650992}, url = {https://doi.org/10.1093/gerona/glaf120} } @article{carpenter2025-40820287, author = {Carpenter, Joan G. and Oduro, Elisha Baafi and Hodgson, Nancy A. and Zhu, Shijun and Gurlu, Merve and Ersek, Mary T. and Hanson, Laura C.}, title = {{Palliative Care Needs of Older Adults With and Without Dementia During Post-Acute Care in Skilled Nursing Facilities}}, journal = {Journal of Applied Gerontology}, year = {2025}, doi = {10.1177/07334648251363646}, pmid = {40820287}, url = {https://doi.org/10.1177/07334648251363646} } @article{biesmans2025-40604780, author = {Biesmans, Jesper M A and Bolt, Sascha and Hameleers, Niels and Schols, Jos M. G. A. and van der Steen, Jenny Theodora and Zwakhalen, Sandra M.G. and Janssen, Daisy J.A. and Meijers, Judith M M}, title = {{Impact of the DEDICATED approach to optimizing palliative care for people with dementia: a multi-method study}}, journal = {BMC Health Services Research}, year = {2025}, doi = {10.1186/s12913-025-13063-3}, pmid = {40604780}, url = {https://doi.org/10.1186/s12913-025-13063-3} } @article{zhang2025-39878947, author = {Zhang, Yuchen and Sereika, Susan M. and Seaman, Jennifer Burgher and Pettigrew, Corinne A. and Albert, Marilyn and Lingler, Jennifer Hagerty}, title = {{Caregivers’ Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf033}, pmid = {39878947}, url = {https://doi.org/10.1093/geront/gnaf033} } @article{vranceanu2025-41478422, author = {Vranceanu, Ana‐Maria and Puttre, Hannah and Stone, Sarah and Pollak, Kathryn I. and Kutner, Jean S. and Ritchie, Christine Seel}, title = {{Developing and Testing a Program to Strengthen the Dementia Palliative Care Trial Workforce}}, journal = {Journal of Pain and Symptom Management}, year = {2025}, doi = {10.1016/j.jpainsymman.2025.12.020}, pmid = {41478422}, url = {https://doi.org/10.1016/j.jpainsymman.2025.12.020} } @article{moore2017-28694253, author = {Moore, K. J. and Candy, B. and Davis, S. and Gola, A. and Harrington, J. and Kupeli, N. and Vickerstaff, V. and King, M. and others}, title = {{Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study}}, journal = {BMJ open}, year = {2017}, doi = {10.1136/bmjopen-2016-015515}, pmid = {28694253}, url = {https://doi.org/10.1136/bmjopen-2016-015515} } @article{sawyer2024-39146484, author = {Sawyer, R. J. and Pereira Osorio, C. and Sharma, S. and Brickell, E.}, title = {{Care management improves total cost of care for patients with dementia}}, journal = {American Journal of Managed Care}, year = {2024}, doi = {10.37765/ajmc.2024.89559}, pmid = {39146484}, url = {https://doi.org/10.37765/ajmc.2024.89559} } @article{brodaty2009-19585957, author = {Brodaty, H. and Donkin, M.}, title = {{Family caregivers of people with dementia}}, journal = {Dialogues in clinical neuroscience}, year = {2009}, pmid = {19585957} } @article{anderson1995-7740578, author = {Anderson, C. S. and Linto, J. and Stewart-Wynne, E. G.}, title = {{A population-based assessment of the impact and burden of caregiving for long-term stroke survivors}}, journal = {Stroke}, year = {1995}, doi = {10.1161/01.str.26.5.843}, pmid = {7740578}, url = {https://doi.org/10.1161/01.str.26.5.843} } @article{dunkin1998-9674763, author = {Dunkin, J. J. and Anderson-Hanley, C.}, title = {{Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention}}, journal = {Neurology}, year = {1998}, doi = {10.1212/wnl.51.1_suppl_1.s53}, pmid = {9674763}, url = {https://doi.org/10.1212/wnl.51.1_suppl_1.s53} } @article{sorensen2006-17052663, author = {Sörensen, S. and Duberstein, P. and Gill, D. and Pinquart, M.}, title = {{Dementia care: mental health effects, intervention strategies, and clinical implications}}, journal = {The Lancet. Neurology}, year = {2006}, doi = {10.1016/s1474-4422(06)70599-3}, pmid = {17052663}, url = {https://doi.org/10.1016/s1474-4422(06)70599-3} } @article{cooper2008-19008735, author = {Cooper, C. and Katona, C. and Livingston, G.}, title = {{Validity and reliability of the brief COPE in carers of people with dementia: the LASER-AD Study}}, journal = {The Journal of nervous and mental disease}, year = {2008}, doi = {10.1097/nmd.0b013e31818b504c}, pmid = {19008735}, url = {https://doi.org/10.1097/nmd.0b013e31818b504c} } @article{devugt2013-23689068, author = {de Vugt, M. E. and Verhey, F. R.}, title = {{The impact of early dementia diagnosis and intervention on informal caregivers}}, journal = {Progress in neurobiology}, year = {2013}, doi = {10.1016/j.pneurobio.2013.04.005}, pmid = {23689068}, url = {https://doi.org/10.1016/j.pneurobio.2013.04.005} } @article{schulz2006-16861369, author = {Schulz, R. and Boerner, K. and Shear, K. and Zhang, S. and Gitlin, L. N.}, title = {{Predictors of complicated grief among dementia caregivers: a prospective study of bereavement}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2006}, doi = {10.1097/01.jgp.0000203178.44894.db}, pmid = {16861369}, url = {https://doi.org/10.1097/01.jgp.0000203178.44894.db} } @article{vandersteen2010-20847433, author = {van der Steen, J. T.}, title = {{Dying with dementia: what we know after more than a decade of research}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2010}, doi = {10.3233/jad-2010-100744}, pmid = {20847433}, url = {https://doi.org/10.3233/jad-2010-100744} } @article{graessel2014-24555474, author = {Graessel, E. and Berth, H. and Lichte, T. and Grau, H.}, title = {{Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s}}, journal = {BMC geriatrics}, year = {2014}, doi = {10.1186/1471-2318-14-23}, pmid = {24555474}, url = {https://doi.org/10.1186/1471-2318-14-23} } @article{dening2013-23128905, author = {Dening, K. H. and Jones, L. and Sampson, E. L.}, title = {{Preferences for end-of-life care: a nominal group study of people with dementia and their family carers}}, journal = {Palliative medicine}, year = {2013}, doi = {10.1177/0269216312464094}, pmid = {23128905}, url = {https://doi.org/10.1177/0269216312464094} } @article{hall2017-28494333, author = {Hall, A. and Wilson, C. B. and Stanmore, E. and Todd, C.}, title = {{Implementing monitoring technologies in care homes for people with dementia: A qualitative exploration using Normalization Process Theory}}, journal = {International journal of nursing studies}, year = {2017}, doi = {10.1016/j.ijnurstu.2017.04.008}, pmid = {28494333}, url = {https://doi.org/10.1016/j.ijnurstu.2017.04.008} } @article{jhang2025-40813642, author = {Jhang, Kai-Ming and Chen, Cheng-Chiang and Wang, Sih-Yi and Wang, Wenfu and Yen, Shao‐Wei and Wu, Hsin‐Hung}, title = {{Caregivers’ burden analytics: combining variables from patients with dementia and their caregivers}}, journal = {BMC Geriatrics}, year = {2025}, doi = {10.1186/s12877-025-06284-y}, pmid = {40813642}, url = {https://doi.org/10.1186/s12877-025-06284-y} } @article{su2025-40751254, author = {Su, Yung‐Yu and Wang, Wen-Fu and Jhang, Kai-Ming and Mau, Lih‐Wen and Chen, Chun‐Min}, title = {{Enhancing care service utilization and reducing burden: the role of needs assessments for dementia caregivers in long-term care}}, journal = {BMC Nursing}, year = {2025}, doi = {10.1186/s12912-025-03686-6}, pmid = {40751254}, url = {https://doi.org/10.1186/s12912-025-03686-6} } @article{sideman2025-39763029, author = {Sideman, Alissa Bernstein and Dulaney, Sarah and Merrilees, Jennifer J. and Barclay, Michelle and de Jesús, Alma Hernández and Possin, Katherine L.}, title = {{Dissemination of the Care Ecosystem Collaborative Care Model for Dementia}}, journal = {Journal of the American Geriatrics Society}, year = {2025}, doi = {10.1111/jgs.19363}, pmid = {39763029}, url = {https://doi.org/10.1111/jgs.19363} } @article{scharf2025-40148225, author = {Scharf, Annelie and Michalowsky, Bernhard and Rädke, Anika and Kleinke, Fabian and Schade, Stefanie and Platen, Moritz and Buchholz, Maresa and Pfaff, Magdalena and others}, title = {{Identifying and Addressing Unmet Needs in Dementia: The Role of Care Access and Psychosocial Support}}, journal = {International Journal of Geriatric Psychiatry}, year = {2025}, doi = {10.1002/gps.70066}, pmid = {40148225}, url = {https://doi.org/10.1002/gps.70066} } @article{lampe2025-40371759, author = {Lampe, Nik M. and Akré, Ellesse-Roselee and Barbee, Harry and McKay, Tara}, title = {{LGBTQ+ identity social support and care access among LGBTQ+ caregivers of individuals living with mild cognitive impairment, Alzheimer's disease, and related dementias}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70188}, pmid = {40371759}, url = {https://doi.org/10.1002/alz.70188} } @article{byeon2025-39944528, author = {Byeon, Gihwan and Kang, Dong Woo and Kim, Yeshin and Kim, Geon Ha and Kim, Ko Woon and Kim, Hee-jin and Na, Seunghee and Park, Kee Hyung and others}, title = {{Clinical Practice Guidelines for Dementia: Recommendations for the Pharmacological Treatment of Behavioral and Psychological Symptoms}}, journal = {Dementia and Neurocognitive Disorders}, year = {2025}, doi = {10.12779/dnd.2025.24.1.24}, pmid = {39944528}, url = {https://doi.org/10.12779/dnd.2025.24.1.24} } @article{murali2025-39903194, author = {Murali, Komal Patel and Gogineni, Srija and Bullock, Karen and McDonald, Margaret V. and Sadarangani, Tina R. and Schulman‐Green, Dena and Brody, Abraham A.}, title = {{Interventions and Predictors of Transition to Hospice for People Living With Dementia: An Integrative Review}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf046}, pmid = {39903194}, url = {https://doi.org/10.1093/geront/gnaf046} } @article{harrison2025-40720566, author = {Harrison, Krista Lyn and Adrion, Emily and Friend, Juliana and Garrett, Sarah B. and Halim, Madina and Terranova, Michael J. and Sideman, Alissa Bernstein and Boyd, Nicole D. and others}, title = {{“It may cost you your money, it costs you your life”: a framework for financial hardship in dementia}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf170}, pmid = {40720566}, url = {https://doi.org/10.1093/geront/gnaf170} } @article{lee2010-20977435, author = {Lee, L. and Hillier, L. M. and Stolee, P. and Heckman, G. and Gagnon, M. and McAiney, C. A. and Harvey, D.}, title = {{Enhancing dementia care: a primary care-based memory clinic}}, journal = {Journal of the American Geriatrics Society}, year = {2010}, doi = {10.1111/j.1532-5415.2010.03130.x}, pmid = {20977435}, url = {https://doi.org/10.1111/j.1532-5415.2010.03130.x} } @article{piers2018-29933758, author = {Piers, R. and Albers, G. and Gilissen, J. and De Lepeleire, J. and Steyaert, J. and Van Mechelen, W. and Steeman, E. and Dillen, L. and others}, title = {{Advance care planning in dementia: recommendations for healthcare professionals}}, journal = {BMC palliative care}, year = {2018}, doi = {10.1186/s12904-018-0332-2}, pmid = {29933758}, url = {https://doi.org/10.1186/s12904-018-0332-2} } @article{birch2008-18416791, author = {Birch, D. and Draper, J.}, title = {{A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia}}, journal = {Journal of clinical nursing}, year = {2008}, doi = {10.1111/j.1365-2702.2007.02220.x}, pmid = {18416791}, url = {https://doi.org/10.1111/j.1365-2702.2007.02220.x} } @article{volandes2007-17452547, author = {Volandes, A. E. and Lehmann, L. S. and Cook, E. F. and Shaykevich, S. and Abbo, E. D. and Gillick, M. R.}, title = {{Using video images of dementia in advance care planning}}, journal = {Archives of internal medicine}, year = {2007}, doi = {10.1001/archinte.167.8.828}, pmid = {17452547}, url = {https://doi.org/10.1001/archinte.167.8.828} } @article{volicer1986-3761520, author = {Volicer, L. and Rheaume, Y. and Brown, J. and Fabiszewski, K. and Brady, R.}, title = {{Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type}}, journal = {JAMA}, year = {1986}, doi = {10.1001/jama.1986.03380160068022}, pmid = {3761520}, url = {https://doi.org/10.1001/jama.1986.03380160068022} } @article{vandersteen2013-23577637, author = {van der Steen, J. T. and Onwuteaka-Philipsen, B. D. and Knol, D. L. and Ribbe, M. W. and Deliens, L.}, title = {{Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study}}, journal = {BMC medicine}, year = {2013}, doi = {10.1186/1741-7015-11-105}, pmid = {23577637}, url = {https://doi.org/10.1186/1741-7015-11-105} } @article{vandersteen2024-37985444, author = {van der Steen, J. T. and Nakanishi, M. and Van den Block, L. and Di Giulio, P. and Gonella, S. and In der Schmitten, J. and Sudore, R. L. and Harrison Dening, K. and others}, title = {{Consensus definition of advance care planning in dementia: A 33-country Delphi study}}, journal = {Alzheimer's \& dementia : the journal of the Alzheimer's Association}, year = {2024}, doi = {10.1002/alz.13526}, pmid = {37985444}, url = {https://doi.org/10.1002/alz.13526} } @article{huang2020-33052970, author = {Huang, H. L. and Lu, W. R. and Liu, C. L. and Chang, H. J.}, title = {{Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts}}, journal = {PloS one}, year = {2020}, doi = {10.1371/journal.pone.0240684}, pmid = {33052970}, url = {https://doi.org/10.1371/journal.pone.0240684} } @article{vandervoort2012-22364648, author = {Vandervoort, A. and van den Block, L. and van der Steen, J. T. and Vander Stichele, R. and Bilsen, J. and Deliens, L.}, title = {{Advance directives and physicians' orders in nursing home residents with dementia in Flanders, Belgium: prevalence and associated outcomes}}, journal = {International psychogeriatrics}, year = {2012}, doi = {10.1017/s1041610212000142}, pmid = {22364648}, url = {https://doi.org/10.1017/s1041610212000142} } @article{miller2012-22175816, author = {Miller, S. C. and Lima, J. C. and Looze, J. and Mitchell, S. L.}, title = {{Dying in U.S. nursing homes with advanced dementia: how does health care use differ for residents with, versus without, end-of-life Medicare skilled nursing facility care?}}, journal = {Journal of palliative medicine}, year = {2012}, doi = {10.1089/jpm.2011.0210}, pmid = {22175816}, url = {https://doi.org/10.1089/jpm.2011.0210} } @article{lee2017-28622379, author = {Lee, R. P. and Bamford, C. and Poole, M. and McLellan, E. and Exley, C. and Robinson, L.}, title = {{End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice}}, journal = {PloS one}, year = {2017}, doi = {10.1371/journal.pone.0179355}, pmid = {28622379}, url = {https://doi.org/10.1371/journal.pone.0179355} } @article{goldfeld2011-21220646, author = {Goldfeld, K. S. and Stevenson, D. G. and Hamel, M. B. and Mitchell, S. L.}, title = {{Medicare expenditures among nursing home residents with advanced dementia}}, journal = {Archives of internal medicine}, year = {2011}, doi = {10.1001/archinternmed.2010.478}, pmid = {21220646}, url = {https://doi.org/10.1001/archinternmed.2010.478} } @article{lastuka2025-40111940, author = {Lastuka, A. and Breshock, M. R. and Taylor, K. V. and Dieleman, J. L.}, title = {{The costs of dementia care by US state: Medical spending and the cost of unpaid caregiving}}, journal = {Journal of Alzheimer's Disease}, year = {2025}, doi = {10.1177/13872877251326231}, pmid = {40111940}, url = {https://doi.org/10.1177/13872877251326231} } @article{mudrazija2025-40662057, author = {Mudrazija, S. and Aranda, M. P.}, title = {{Current and Future Replacement and Opportunity Costs of Family Caregiving for Older Americans With and Without Dementia}}, journal = {Innovation in Aging}, year = {2025}, doi = {10.1093/geroni/igaf049}, pmid = {40662057}, url = {https://doi.org/10.1093/geroni/igaf049} } @article{sharma2016-27014594, author = {Sharma, N. and Chakrabarti, S. and Grover, S.}, title = {{Gender differences in caregiving among family - caregivers of people with mental illnesses}}, journal = {World journal of psychiatry}, year = {2016}, doi = {10.5498/wjp.v6.i1.7}, pmid = {27014594}, url = {https://doi.org/10.5498/wjp.v6.i1.7} } @article{gallicchio2002-11813279, author = {Gallicchio, L. and Siddiqi, N. and Langenberg, P. and Baumgarten, M.}, title = {{Gender differences in burden and depression among informal caregivers of demented elders in the community}}, journal = {International journal of geriatric psychiatry}, year = {2002}, doi = {10.1002/gps.538}, pmid = {11813279}, url = {https://doi.org/10.1002/gps.538} } @article{brodaty1993-8503802, author = {Brodaty, H. and McGilchrist, C. and Harris, L. and Peters, K. E.}, title = {{Time until institutionalization and death in patients with dementia. Role of caregiver training and risk factors}}, journal = {Archives of neurology}, year = {1993}, doi = {10.1001/archneur.1993.00540060073021}, pmid = {8503802}, url = {https://doi.org/10.1001/archneur.1993.00540060073021} } @article{ray1993-8447709, author = {Ray, W. A. and Taylor, J. A. and Meador, K. G. and Lichtenstein, M. J. and Griffin, M. R. and Fought, R. and Adams, M. L. and Blazer, D. G.}, title = {{Reducing antipsychotic drug use in nursing homes. A controlled trial of provider education}}, journal = {Archives of internal medicine}, year = {1993}, doi = {10.1001/archinte.1993.00410060023005}, pmid = {8447709}, url = {https://doi.org/10.1001/archinte.1993.00410060023005} } @article{gold1995-7806732, author = {Gold, D. P. and Reis, M. F. and Markiewicz, D. and Andres, D.}, title = {{When home caregiving ends: a longitudinal study of outcomes for caregivers of relatives with dementia}}, journal = {Journal of the American Geriatrics Society}, year = {1995}, doi = {10.1111/j.1532-5415.1995.tb06235.x}, pmid = {7806732}, url = {https://doi.org/10.1111/j.1532-5415.1995.tb06235.x} } @article{lazarou2016-27636843, author = {Lazarou, I. and Karakostas, A. and Stavropoulos, T. G. and Tsompanidis, T. and Meditskos, G. and Kompatsiaris, I. and Tsolaki, M.}, title = {{A Novel and Intelligent Home Monitoring System for Care Support of Elders with Cognitive Impairment}}, journal = {Journal of Alzheimer's disease : JAD}, year = {2016}, doi = {10.3233/jad-160348}, pmid = {27636843}, url = {https://doi.org/10.3233/jad-160348} } @article{banbury2019-31631761, author = {Banbury, A. and Parkinson, L. and Gordon, S. and Wood, D.}, title = {{Implementing a peer-support programme by group videoconferencing for isolated carers of people with dementia}}, journal = {Journal of telemedicine and telecare}, year = {2019}, doi = {10.1177/1357633x19873793}, pmid = {31631761}, url = {https://doi.org/10.1177/1357633x19873793} } @article{davisajami2023-37391377, author = {Davis–Ajami, Mary Lynn and Chang, Chiang‐Hua and Gupta, Sumedha and Khan, Babar Ali and Solid, Craig A. and El Sharu, Husam and Boustani, Malaz A. and Yates, Brandon A. and others}, title = {{Mortality and Discharge Location of Intensive Care Patients With Alzheimer Disease and Related Dementia}}, journal = {American Journal of Critical Care}, year = {2023}, doi = {10.4037/ajcc2023328}, pmid = {37391377}, url = {https://doi.org/10.4037/ajcc2023328} } @article{robison2024-38502719, author = {Robison, Raele and Butz, Nicole and Gustafson, Sara and Wang, Steven and Falvey, Jason R. and Mackowicz‐Torres, Meredith and Rogus‐Pulia, Nicole M. and Kind, Amy}, title = {{Ready for Discharge, but Are They Ready to Go Home? Examining Neighborhood-Level Disadvantage as a Marker of the Social Exposome and the Swallowing Care Process in a Retrospective Cohort of Inpatients With Dementia}}, journal = {American Journal of Speech-Language Pathology}, year = {2024}, doi = {10.1044/2024_ajslp-23-00332}, pmid = {38502719}, url = {https://doi.org/10.1044/2024_ajslp-23-00332} } @article{jia2025-40217520, author = {Jia, Hairong and Zhang, Jiaqi and Su, Wenhao and Wei, Zhaoyang and Luo, Yang and Wang, Yanru}, title = {{The impact of caregiver burden on sense of coherence in Chinese family caregivers of people with dementia: the mediating effect of family resilience}}, journal = {BMC Psychology}, year = {2025}, doi = {10.1186/s40359-025-02678-0}, pmid = {40217520}, url = {https://doi.org/10.1186/s40359-025-02678-0} } @article{travers2025-40371672, author = {Travers, Jasmine L. and Reckrey, Jennifer M. and Frogner, Bianca K. and Grabowski, David C. and Spetz, Joanne}, title = {{The dementia care workforce: Essential to care but large research gaps exist}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70269}, pmid = {40371672}, url = {https://doi.org/10.1002/alz.70269} } @article{poco2025-40129248, author = {Poco, Louisa Camille and Andres, Ellie Bostwick and Balasubramanian, Ishwarya and Malhotra, Chetna}, title = {{Financial difficulties and well-being among caregivers of persons with severe dementia}}, journal = {Aging \& Mental Health}, year = {2025}, doi = {10.1080/13607863.2025.2481978}, pmid = {40129248}, url = {https://doi.org/10.1080/13607863.2025.2481978} } @article{smith2025-40703190, author = {Smith, Matthew Lee and Southerland, Jodi L and Neelamegam, Malinee and Han, Gang and Lee, Shinduk and Kew, Chung Lin and Bacsu, Juanita-Dawne and Couch, Elyse and others}, title = {{Caregiving burdens of task time and task difficulty among paid and unpaid caregivers of persons living with dementia}}, journal = {Frontiers in Public Health}, year = {2025}, doi = {10.3389/fpubh.2025.1615187}, pmid = {40703190}, url = {https://doi.org/10.3389/fpubh.2025.1615187} } @article{paggetti2025-40841343, author = {Paggetti, Alice and Lorenzini, Patrizia and Fabrizi, Elisa and Di Nolfi, Annachiara and Zambri, Francesca and Giusti, Angela and Palermo, Vittorio and Palazzesi, Ilaria and others}, title = {{Management and Care for People Living With Dementia and Their Caregivers: Findings From an Italian National Survey on Caregivers and Services Use}}, journal = {Psychogeriatrics}, year = {2025}, doi = {10.1111/psyg.70081}, pmid = {40841343}, url = {https://doi.org/10.1111/psyg.70081} } @article{peralespuchalt2025-41049573, author = {Perales‐Puchalt, Jaime and Checa, Irene and Espejo, Begoña and Carbonell, Marta Martín and Fracachán-Cabrera, Mónica and Baker, Christina L. and Ramírez, Mariana and Mendez-Asaro, Prisca and others}, title = {{Validation of Wellbeing Scales Among Informal Caregivers of Latinos With Alzheimer’s Disease and Related Dementias}}, journal = {Hispanic Journal of Behavioral Sciences}, year = {2025}, doi = {10.1177/07399863241308996}, pmid = {41049573}, url = {https://doi.org/10.1177/07399863241308996} } @article{kittle2026-41701791, author = {Kittle, Krystal R. and Cicero, Ethan C. and Pelkmans, Jordan L. and Flatt, Jason D. and Anderson, Joel G.}, title = {{Health of Bi+ Dementia Caregivers: Moderation Effects of Minority and Caregiving Stress}}, journal = {American Journal of Alzheimer s Disease \& Other Dementias®}, year = {2026}, doi = {10.1177/15333175251415106}, pmid = {41701791}, url = {https://doi.org/10.1177/15333175251415106} } @article{harrison2025-39907502, author = {Harrison, Krista Lyn and Morgan, Brianna E. and Friend, Juliana and Garrett, Sarah B. and Looi, David and Halim, Madina and James, Jennifer Elyse and Boyd, Nicole D. and others}, title = {{“By the Time We Knew …”: Poetic Analysis of End‐of‐Life Caregiving Experiences for Rapidly Progressive and Slower‐Duration Dementia Syndromes}}, journal = {Journal of the American Geriatrics Society}, year = {2025}, doi = {10.1111/jgs.19382}, pmid = {39907502}, url = {https://doi.org/10.1111/jgs.19382} } @article{berridge2025-40313054, author = {Berridge, Clara W. and Turner, Natalie R. and Lober, William B. and Demiris, George and JEFFREY A., K. A. Y. E.}, title = {{Sharing patient technology preferences with care networks: Stakeholders’ views of the “Let’s Talk Tech” decision aid for dementia care}}, journal = {Journal of Alzheimer s Disease}, year = {2025}, doi = {10.1177/13872877251332659}, pmid = {40313054}, url = {https://doi.org/10.1177/13872877251332659} } @article{harrisondening2016-27410259, author = {Harrison Dening, K. and King, M. and Jones, L. and Vickerstaff, V. and Sampson, E. L.}, title = {{Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?}}, journal = {PloS one}, year = {2016}, doi = {10.1371/journal.pone.0159056}, pmid = {27410259}, url = {https://doi.org/10.1371/journal.pone.0159056} } @article{poppe2013-23630571, author = {Poppe, M. and Burleigh, S. and Banerjee, S.}, title = {{Qualitative evaluation of advanced care planning in early dementia (ACP-ED)}}, journal = {PloS one}, year = {2013}, doi = {10.1371/journal.pone.0060412}, pmid = {23630571}, url = {https://doi.org/10.1371/journal.pone.0060412} } @article{vansoestpoortvliet2012-21814875, author = {van Soest-Poortvliet, M. C. and van der Steen, J. T. and Zimmerman, S. and Cohen, L. W. and Klapwijk, M. S. and Bezemer, M. and Achterberg, W. P. and Knol, D. L. and others}, title = {{Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia}}, journal = {Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation}, year = {2012}, doi = {10.1007/s11136-011-9978-4}, pmid = {21814875}, url = {https://doi.org/10.1007/s11136-011-9978-4} } @article{kupeli2016-26965309, author = {Kupeli, N. and Leavey, G. and Moore, K. and Harrington, J. and Lord, K. and King, M. and Nazareth, I. and Sampson, E. L. and others}, title = {{Context, mechanisms and outcomes in end of life care for people with advanced dementia}}, journal = {BMC palliative care}, year = {2016}, doi = {10.1186/s12904-016-0103-x}, pmid = {26965309}, url = {https://doi.org/10.1186/s12904-016-0103-x} } @article{vandersteen2016-27108345, author = {van der Steen, J. T. and Galway, K. and Carter, G. and Brazil, K.}, title = {{Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians}}, journal = {Archives of gerontology and geriatrics}, year = {2016}, doi = {10.1016/j.archger.2016.04.005}, pmid = {27108345}, url = {https://doi.org/10.1016/j.archger.2016.04.005} } @article{bolt2019-30718151, author = {Bolt, SR. and Verbeek, L. and Meijers, J. M. M. and van der Steen, J. T.}, title = {{Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia}}, journal = {Journal of the American Medical Directors Association}, year = {2019}, doi = {10.1016/j.jamda.2018.12.001}, pmid = {30718151}, url = {https://doi.org/10.1016/j.jamda.2018.12.001} } @article{cheong2015-25336042, author = {Cheong, K. and Fisher, P. and Goh, J. and Ng, L. and Koh, H. M. and Yap, P.}, title = {{Advance care planning in people with early cognitive impairment}}, journal = {BMJ supportive \& palliative care}, year = {2015}, doi = {10.1136/bmjspcare-2014-000648}, pmid = {25336042}, url = {https://doi.org/10.1136/bmjspcare-2014-000648} } @article{costarequena2015-24612777, author = {Costa-Requena, G. and Espinosa Val, M. C. and Cristòfol, R.}, title = {{Caregiver burden in end-of-life care: advanced cancer and final stage of dementia}}, journal = {Palliative \& supportive care}, year = {2015}, doi = {10.1017/s1478951513001259}, pmid = {24612777}, url = {https://doi.org/10.1017/s1478951513001259} } @article{sussman2021-33290098, author = {Sussman, T. and Pimienta, R. and Hayward, A.}, title = {{Engaging persons with dementia in advance care planning: Challenges and opportunities}}, journal = {Dementia (London, England)}, year = {2021}, doi = {10.1177/1471301220973059}, pmid = {33290098}, url = {https://doi.org/10.1177/1471301220973059} } @article{morgan2015-26496646, author = {Morgan, D. G. and Kosteniuk, J. G. and Stewart, N. J. and O'Connell, M. E. and Kirk, A. and Crossley, M. and Dal Bello-Haas, V. and Forbes, D. and others}, title = {{Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada}}, journal = {Home health care services quarterly}, year = {2015}, doi = {10.1080/01621424.2015.1092907}, pmid = {26496646}, url = {https://doi.org/10.1080/01621424.2015.1092907} } @article{afzal2010-20302987, author = {Afzal, N. and Buhagiar, K. and Flood, J. and Cosgrave, M.}, title = {{Quality of end-of-life care for dementia patients during acute hospital admission: a retrospective study in Ireland}}, journal = {General hospital psychiatry}, year = {2010}, doi = {10.1016/j.genhosppsych.2009.10.003}, pmid = {20302987}, url = {https://doi.org/10.1016/j.genhosppsych.2009.10.003} } @article{ali2021-34281087, author = {Ali, N. and Anthony, P. and Lim, W. S. and Chong, M. S. and Poon, E. W. H. and Drury, V. and Chan, M.}, title = {{Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient-Caregiver Dyads-A Mixed-Methods Study}}, journal = {International journal of environmental research and public health}, year = {2021}, doi = {10.3390/ijerph18137150}, pmid = {34281087}, url = {https://doi.org/10.3390/ijerph18137150} } @article{jones2016-26354388, author = {Jones, L. and Candy, B. and Davis, S. and Elliott, M. and Gola, A. and Harrington, J. and Kupeli, N. and Lord, K. and others}, title = {{Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach}}, journal = {Palliative medicine}, year = {2016}, doi = {10.1177/0269216315605447}, pmid = {26354388}, url = {https://doi.org/10.1177/0269216315605447} } @article{verreault2018-28731379, author = {Verreault, R. and Arcand, M. and Misson, L. and Durand, P. J. and Kroger, E. and Aubin, M. and Savoie, M. and Hadjistavropoulos, T. and others}, title = {{Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions}}, journal = {Palliative medicine}, year = {2018}, doi = {10.1177/0269216317719588}, pmid = {28731379}, url = {https://doi.org/10.1177/0269216317719588} } @article{schulz2002-12351794, author = {Schulz, R. and O'Brien, A. and Czaja, S. and Ory, M. and Norris, R. and Martire, L. M. and Belle, S. H. and Burgio, L. and others}, title = {{Dementia caregiver intervention research: in search of clinical significance}}, journal = {The Gerontologist}, year = {2002}, doi = {10.1093/geront/42.5.589}, pmid = {12351794}, url = {https://doi.org/10.1093/geront/42.5.589} } @article{mccurry2007-17287134, author = {McCurry, S. M. and Logsdon, R. G. and Teri, L. and Vitiello, M. V.}, title = {{Sleep disturbances in caregivers of persons with dementia: contributing factors and treatment implications}}, journal = {Sleep medicine reviews}, year = {2007}, doi = {10.1016/j.smrv.2006.09.002}, pmid = {17287134}, url = {https://doi.org/10.1016/j.smrv.2006.09.002} } @article{smith2007-17176501, author = {Smith, S. C. and Lamping, D. L. and Banerjee, S. and Harwood, R. H. and Foley, B. and Smith, P. and Cook, J. C. and Murray, J. and others}, title = {{Development of a new measure of health-related quality of life for people with dementia: DEMQOL}}, journal = {Psychological medicine}, year = {2007}, doi = {10.1017/s0033291706009469}, pmid = {17176501}, url = {https://doi.org/10.1017/s0033291706009469} } @article{brodaty2003-14651681, author = {Brodaty, H. and Draper, B. and Low, L. F.}, title = {{Nursing home staff attitudes towards residents with dementia: strain and satisfaction with work}}, journal = {Journal of advanced nursing}, year = {2003}, doi = {10.1046/j.0309-2402.2003.02848.x}, pmid = {14651681}, url = {https://doi.org/10.1046/j.0309-2402.2003.02848.x} } @article{odonnell1992-1571074, author = {O'Donnell, B. F. and Drachman, D. A. and Barnes, H. J. and Peterson, K. E. and Swearer, J. M. and Lew, R. A.}, title = {{Incontinence and troublesome behaviors predict institutionalization in dementia}}, journal = {Journal of geriatric psychiatry and neurology}, year = {1992}, doi = {10.1177/002383099200500108}, pmid = {1571074}, url = {https://doi.org/10.1177/002383099200500108} } @article{altieri2021-33153872, author = {Altieri, M. and Santangelo, G.}, title = {{The Psychological Impact of COVID-19 Pandemic and Lockdown on Caregivers of People With Dementia}}, journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry}, year = {2021}, doi = {10.1016/j.jagp.2020.10.009}, pmid = {33153872}, url = {https://doi.org/10.1016/j.jagp.2020.10.009} } @article{cohen2020-32729446, author = {Cohen, G. and Russo, M. J. and Campos, J. A. and Allegri, R. F.}, title = {{Living with dementia: increased level of caregiver stress in times of COVID-19}}, journal = {International psychogeriatrics}, year = {2020}, doi = {10.1017/s1041610220001593}, pmid = {32729446}, url = {https://doi.org/10.1017/s1041610220001593} } @article{matsumoto2007-17299264, author = {Matsumoto, N. and Ikeda, M. and Fukuhara, R. and Shinagawa, S. and Ishikawa, T. and Mori, T. and Toyota, Y. and Matsumoto, T. and others}, title = {{Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community}}, journal = {Dementia and geriatric cognitive disorders}, year = {2007}, doi = {10.1159/000099472}, pmid = {17299264}, url = {https://doi.org/10.1159/000099472} } @article{fortinsky2002-12028884, author = {Fortinsky, R. H. and Kercher, K. and Burant, C. J.}, title = {{Measurement and correlates of family caregiver self-efficacy for managing dementia}}, journal = {Aging \& mental health}, year = {2002}, doi = {10.1080/13607860220126763}, pmid = {12028884}, url = {https://doi.org/10.1080/13607860220126763} } @article{roth2008-18808246, author = {Roth, D. L. and Ackerman, M. L. and Okonkwo, O. C. and Burgio, L. D.}, title = {{The four-factor model of depressive symptoms in dementia caregivers: a structural equation model of ethnic differences}}, journal = {Psychology and aging}, year = {2008}, doi = {10.1037/a0013287}, pmid = {18808246}, url = {https://doi.org/10.1037/a0013287} } @article{hoe2005-15713856, author = {Hoe, J. and Katona, C. and Roch, B. and Livingston, G.}, title = {{Use of the QOL-AD for measuring quality of life in people with severe dementia--the LASER-AD study}}, journal = {Age and ageing}, year = {2005}, doi = {10.1093/ageing/afi030}, pmid = {15713856}, url = {https://doi.org/10.1093/ageing/afi030} } @article{marvardi2005-15847122, author = {Marvardi, M. and Mattioli, P. and Spazzafumo, L. and Mastriforti, R. and Rinaldi, P. and Polidori, M. C. and Cherubini, A. and Quartesan, R. and others}, title = {{The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study}}, journal = {Aging clinical and experimental research}, year = {2005}, doi = {10.1007/bf03337720}, pmid = {15847122}, url = {https://doi.org/10.1007/bf03337720} } @article{bunker2022-35675641, author = {Bunker, Jennifer and Mitchell, Susan L. and Bélanger, Emmanuelle and Gozalo, Pedro L. and Teno, Joan M.}, title = {{Pain Impacting Quality of Life in Persons with Dementia Dying in the Nursing Home by Alternative Medicare Payment Model}}, journal = {Journal of Palliative Medicine}, year = {2022}, doi = {10.1089/jpm.2022.0047}, pmid = {35675641}, url = {https://doi.org/10.1089/jpm.2022.0047} } @article{tan2023-fe172fcd, author = {Tan, Zaldy Sy and Qureshi, Nabeel and Kremen, Sarah A. and Rhinehart, Deana and Gatmaitan, Dyane and Spivack, Erica and Guinto, Augustine and Sicotte, Nancy L.}, title = {{Population‐based Dementia Identification and Care Coordination: The CS CARES Program}}, journal = {Alzheimer s \& Dementia}, year = {2023}, doi = {10.1002/alz.077529}, url = {https://doi.org/10.1002/alz.077529} } @article{ng2025-40371630, author = {Ng, Yee To and Kratz, Anna Louise and Turkelson, Angela and Birditt, Kira S.}, title = {{Daily interactions with care recipients and cardiovascular reactivity among dementia caregivers: The buffering role of friend interactions}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70281}, pmid = {40371630}, url = {https://doi.org/10.1002/alz.70281} } @article{meng2025-39916411, author = {Meng, Christine and Lachapelle, Safira and Adekoya, Adebusola and Kervin, Lucy M. and Seetharaman, Kishore and Khan, Koushambhi Basu and Baumbusch, Jennifer}, title = {{Using a Trauma-Informed Care Approach to Understand Family Caregivers’ Experiences of Accessing Formal Supports in Dementia Care}}, journal = {Journal of Family Nursing}, year = {2025}, doi = {10.1177/10748407251314549}, pmid = {39916411}, url = {https://doi.org/10.1177/10748407251314549} } @article{huang2025-40053723, author = {Huang, Nova Mengxia and Wong, Liang Ze and Ho, Shirley S. and Timothy, Bryan}, title = {{Understanding Challenges and Emotions of Informal Caregivers of General Older Adults and People With Alzheimer Disease and Related Dementia: Comparative Study}}, journal = {Journal of Medical Internet Research}, year = {2025}, doi = {10.2196/54847}, pmid = {40053723}, url = {https://doi.org/10.2196/54847} } @article{handels2025-39800459, author = {Handels, Ron L. H. and Hataiyusuk, Somboon and Wimo, Anders and Sköldunger, Anders and Bakker, Christian and Bieber, Anja and Ciccone, Alfonso and Defanti, Carlo Alberto and others}, title = {{Informal care for people with dementia in Europe}}, journal = {The Journal of Prevention of Alzheimer s Disease}, year = {2025}, doi = {10.1016/j.tjpad.2024.100015}, pmid = {39800459}, url = {https://doi.org/10.1016/j.tjpad.2024.100015} } @article{pavkovic2025-40223560, author = {Pavković, Slađana and Goldberg, Lynette Ruth and Farrow, Maree and Alty, Jane and Abela, Melissa and Low, Lee‐Fay}, title = {{Post-diagnostic support in Australia: Perspectives of people recently diagnosed with dementia and their carers}}, journal = {Dementia}, year = {2025}, doi = {10.1177/14713012251333880}, pmid = {40223560}, url = {https://doi.org/10.1177/14713012251333880} } @article{moore2025-0d72c8cf, author = {Moore, Dylan Edward and Tao, Songyun and Lucca, Emma Ricci-De and Tadin, Christina Sapp and Tadin, Dio and Morgan, Brian L. G. and Murnane, Elizabeth L.}, title = {{Family In The Loop: Enabling Family Involvement and Person-Centered Dementia Care at Long-Term Care Facilities with Collaborative AI Tools}}, journal = {Proceedings of the ACM on Human-Computer Interaction}, year = {2025}, doi = {10.1145/3757599}, url = {https://doi.org/10.1145/3757599} } @article{inanc2025-30f29f07, author = {Inanc, O.}, title = {{Caring Under Pressure: Perceived Stress Among Caregivers of Dementia Patients}}, journal = {European Psychiatry}, year = {2025}, doi = {10.1192/j.eurpsy.2025.1593}, url = {https://doi.org/10.1192/j.eurpsy.2025.1593} } @article{biard2025-40915983, author = {Biard, Marie and Detcheverry, Flavie E. and Betzner, William and Becker, Sara A. and Grewal, Karl Singh and Azab, Sandi and Bloniasz, Patrick Francis and Mazerolle, Erin L. and others}, title = {{Supporting decision making for individuals living with dementia and their care partners with knowledge translation: An umbrella review}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70636}, pmid = {40915983}, url = {https://doi.org/10.1002/alz.70636} } @article{jaime2026-41108760, author = {Jaime, Perales-Puchalt and Emily, Morrow and Val, Roche-Dean Maria and Ton, Miras and Angela, Scott and Mariana, Ramirez-Mantilla and Ladson, Hinton and Dolores, Gallagher-Thompson and others}, title = {{Barriers and Facilitators for Implementing a Dementia Family Caregiver Support Strategy Among Latinos in Primary Care}}, journal = {Journal of applied gerontology : the official journal of the Southern Gerontological Society}, year = {2026}, doi = {10.1177/07334648251390013}, pmid = {41108760}, url = {https://doi.org/10.1177/07334648251390013} } @article{hermans2017-27633827, author = {Hermans, K. and Cohen, J. and Spruytte, N. and Van Audenhove, C. and Declercq, A.}, title = {{Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study}}, journal = {Geriatrics \& gerontology international}, year = {2017}, doi = {10.1111/ggi.12903}, pmid = {27633827}, url = {https://doi.org/10.1111/ggi.12903} } @article{vandersteen2012-21450256, author = {van der Steen, J. T. and Arcand, M. and Toscani, F. and de Graas, T. and Finetti, S. and Beaulieu, M. and Brazil, K. and Nakanishi, M. and others}, title = {{A family booklet about comfort care in advanced dementia: three-country evaluation}}, journal = {Journal of the American Medical Directors Association}, year = {2012}, doi = {10.1016/j.jamda.2011.02.005}, pmid = {21450256}, url = {https://doi.org/10.1016/j.jamda.2011.02.005} } @article{etters2008-18786017, author = {Etters, L. and Goodall, D. and Harrison, B. E.}, title = {{Caregiver burden among dementia patient caregivers: a review of the literature}}, journal = {Journal of the American Academy of Nurse Practitioners}, year = {2008}, doi = {10.1111/j.1745-7599.2008.00342.x}, pmid = {18786017}, url = {https://doi.org/10.1111/j.1745-7599.2008.00342.x} } @article{sachs2004-15482560, author = {Sachs, G. A. and Shega, J. W. and Cox-Hayley, D.}, title = {{Barriers to excellent end-of-life care for patients with dementia}}, journal = {Journal of general internal medicine}, year = {2004}, doi = {10.1111/j.1525-1497.2004.30329.x}, pmid = {15482560}, url = {https://doi.org/10.1111/j.1525-1497.2004.30329.x} } @article{janevic2001-11405431, author = {Janevic, M. R. and Connell, C. M.}, title = {{Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings}}, journal = {The Gerontologist}, year = {2001}, doi = {10.1093/geront/41.3.334}, pmid = {11405431}, url = {https://doi.org/10.1093/geront/41.3.334} } @article{ready2004-15027041, author = {Ready, R. E. and Ott, B. R. and Grace, J.}, title = {{Patient versus informant perspectives of Quality of Life in Mild Cognitive Impairment and Alzheimer's disease}}, journal = {International journal of geriatric psychiatry}, year = {2004}, doi = {10.1002/gps.1075}, pmid = {15027041}, url = {https://doi.org/10.1002/gps.1075} } @article{devugt2006-16679763, author = {de Vugt, M. E. and Riedijk, SR. and Aalten, P. and Tibben, A. and van Swieten, J. C. and Verhey, F. R.}, title = {{Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer's disease and frontotemporal dementia}}, journal = {Dementia and geriatric cognitive disorders}, year = {2006}, doi = {10.1159/000093102}, pmid = {16679763}, url = {https://doi.org/10.1159/000093102} } @article{allegri2006-19412452, author = {Allegri, R. F. and Sarasola, D. and Serrano, C. M. and Taragano, F. E. and Arizaga, R. L. and Butman, J. and Loñ, L.}, title = {{Neuropsychiatric symptoms as a predictor of caregiver burden in Alzheimer's disease}}, journal = {Neuropsychiatric disease and treatment}, year = {2006}, pmid = {19412452} } @article{liu2022-34606599, author = {Liu, R. and Chi, I. and Wu, S.}, title = {{Caregiving Burden Among Caregivers of People With Dementia Through the Lens of Intersectionality}}, journal = {The Gerontologist}, year = {2022}, doi = {10.1093/geront/gnab146}, pmid = {34606599}, url = {https://doi.org/10.1093/geront/gnab146} } @article{schreiner2003-12789670, author = {Schreiner, A. S. and Hayakawa, H. and Morimoto, T. and Kakuma, T.}, title = {{Screening for late life depression: cut-off scores for the Geriatric Depression Scale and the Cornell Scale for Depression in Dementia among Japanese subjects}}, journal = {International journal of geriatric psychiatry}, year = {2003}, doi = {10.1002/gps.880}, pmid = {12789670}, url = {https://doi.org/10.1002/gps.880} } @article{lee2025-41434575, author = {Lee, David R. and Zhu, Xi and Hays, Ron D. and Summapund, Jenny and Gill, Thomas M. and Peduzzi, Peter N. and Ryan, Gery Wayne and Baxter-King, Ryan and others}, title = {{Caregiver Strain and Perceived Impact of COVID‐19 on Dementia Caregiving}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz70861_108706}, pmid = {41434575}, url = {https://doi.org/10.1002/alz70861_108706} } @article{joseph2025-40401772, author = {Joseph, Suma and Thomas, Priya Treesa and Kumar, Gargi S. and Arun, M and Mohandas, Reshma P. and Ganga, Kailash and Keerthipriya, M. S. and Binesha, P. and others}, title = {{Multidisciplinary Home-Based Palliative Care for People Living with Dementia: Preliminary Findings on Palliative Care Concerns and Caregiver Burden}}, journal = {Journal of Applied Gerontology}, year = {2025}, doi = {10.1177/07334648251344358}, pmid = {40401772}, url = {https://doi.org/10.1177/07334648251344358} } @article{eggleston2025-40407100, author = {Eggleston, Karen N. and Kim, Dae Jung}, title = {{Dementia care in a rapidly aging society}}, journal = {Alzheimer s \& Dementia}, year = {2025}, doi = {10.1002/alz.70268}, pmid = {40407100}, url = {https://doi.org/10.1002/alz.70268} } @article{huang2025-40669069, author = {Huang, Ling‐Chun and Chien, Ching‐Fang and Yang, Yuan‐Han}, title = {{Exploring the Immediate and Long-Term Effects of Immersive Virtual Reality on Behavioral and Psychological Symptoms of Dementia and Caregiver Burden: Longitudinal Observational Study}}, journal = {JMIR Serious Games}, year = {2025}, doi = {10.2196/73044}, pmid = {40669069}, url = {https://doi.org/10.2196/73044} } @article{gulline2025-40091013, author = {Gulline, Hannah and Carmody, Sarah and Yates, Mark William and Bevins, Amelia and Brodtmann, Amy G. and Loi, Samantha M. and Lim, Yen Ying and Macklin, Heather and others}, title = {{Equity of access in rural and metropolitan dementia diagnosis, management, and care experiences: an exploratory qualitative study}}, journal = {International Journal for Equity in Health}, year = {2025}, doi = {10.1186/s12939-025-02434-1}, pmid = {40091013}, url = {https://doi.org/10.1186/s12939-025-02434-1} } @article{blotenberg2025-40404320, author = {Blotenberg, Iris and Wuttke, Alexandra and Boekholt, Melanie and Köhler, Kerstin and Holle, Bernhard and Thyrian, Jochen René}, title = {{Assessment of the validity of the Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem): a cross-sectional survey study}}, journal = {BMJ Open}, year = {2025}, doi = {10.1136/bmjopen-2024-088738}, pmid = {40404320}, url = {https://doi.org/10.1136/bmjopen-2024-088738} } @article{falzarano2025-39981669, author = {Falzarano, Francesca B. and Greenfield, Annabelle and Osso, Francesco and Bumbalova, Katerina and Bloom, Rachel F.}, title = {{“Diagnose \& Adios”: Multi-Perspective Insights on Formal Service Use in Dementia Family Caregivers}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf081}, pmid = {39981669}, url = {https://doi.org/10.1093/geront/gnaf081} } @article{oconor2025-40177942, author = {O’Conor, Rachel M. and Pack, Allison P. and Russell, Andrea M. and Oladejo, Dianne and Rogalski, Emily Joy and Morhardt, Darby and Fortinsky, Richard H. and Lindquist, Lee Ann and others}, title = {{Triadic Primary Care Encounters Managing Medications Among Individuals With Mild Cognitive Impairment and Dementia: Patient, Caregiver, and Clinician Perspectives}}, journal = {The Gerontologist}, year = {2025}, doi = {10.1093/geront/gnaf122}, pmid = {40177942}, url = {https://doi.org/10.1093/geront/gnaf122} } @article{manee2025-40724791, author = {Manee, Fahad and Alnaser, Musaed Z. and Alqattan, Ali and Almutairi, Sheikha and Maqtouf, Hessa}, title = {{A Comparative Study of Burden of Care, Anxiety, and Well-Being Among Family Caregivers of Elderly with Dementia: Evidence from Kuwait}}, journal = {Healthcare}, year = {2025}, doi = {10.3390/healthcare13141767}, pmid = {40724791}, url = {https://doi.org/10.3390/healthcare13141767} } @article{burnand2025-39810119, author = {Burnand, Alice and Woodward, Abi and Kolodin, Vladimir and Manthorpe, Jill and Jani, Yogini Hariprasad and Orlu, Mine and Bhanu, Cini and Samsi, Kritika and others}, title = {{Service delivery and the role of clinical pharmacists in UK primary care for older people, including people with dementia: a scoping review}}, journal = {BMC Family Practice}, year = {2025}, doi = {10.1186/s12875-024-02685-x}, pmid = {39810119}, url = {https://doi.org/10.1186/s12875-024-02685-x} }