Get help now — free helplines

You can call any of these for free. You do not need a diagnosis, an appointment, or a crisis to call — questions and plain exhaustion are reasons enough.

  • Alzheimer's Association 24/7 Helpline 800-272-3900 24 hours a day, 365 days a year Free, confidential support and information for people with dementia, caregivers, families and the public. Master's-level clinicians. Also Spanish.
  • 988 Suicide & Crisis Lifeline 988 24/7 Call or text 988, or chat at 988lifeline.org. For anyone in emotional distress or a mental-health crisis, including caregivers.
  • Alzheimer's Foundation of America (AFA) Helpline 866-232-8484 9:00 am - 9:00 pm ET, seven days a week Licensed social workers providing support, info and referrals. Also text message and web chat. Text: 646-586-5283

In a medical emergency, call 911. More numbers, and what each line does, on the help page.

Newest in this topic

  1. Is there a role for artificial intelligence in end-of-life care for persons with dementia? Perspectives of and recommendations by caregivers and hospice staff 2026-09-17
  2. Online Peer Support Use Among Informal Caregivers of People Living With Alzheimer Disease or Related Dementias: National Cross-Sectional Web-Based Survey 2026-09-07
  3. Interconnected Challenges in Dementia Caregiving: A Co-occurrence Network Analysis of Burden, Unmet Needs, and System Failures Among Caregivers 2026-08-17

Studies

1,013 studies carry this tag; 1,012 of them have a date.

Date range

1986 to 2026

Top journals

  • Journal of the American Geriatrics Society 63
  • The Gerontologist 48
  • Alzheimer s & Dementia 28
  • International psychogeriatrics 28
  • Journal of the American Medical Directors Association 26

339 journals in all.

Newest first, then by address. Each study has a usefulness score out of 100 (rubric version 4.0); tap a score to see what makes it up. Tags were assigned automatically from each study's title and summary. The same studies as a filter in the library.

  1. Preventing Burdensome Transitions of Nursing Home Residents with Advanced Dementia: It's More than Advance Directives

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. Journal of palliative medicine 2017-05-15 End-of-life care

    Advance care planning before an acute event is only the first step in a process of decision making.

  2. Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

    ✓ Peer-reviewed alzhub usefulness score 41 out of 100. BMC palliative care 2017-04-28 End-of-life care

    A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model.

  3. Implementing monitoring technologies in care homes for people with dementia: A qualitative exploration using Normalization Process Theory

    ✓ Peer-reviewed alzhub usefulness score 48 out of 100. International journal of nursing studies 2017-04-27 Digital health tools

    Ageing societies and a rising prevalence of dementia are associated with increasing demand for care home places.

  4. Specialty Palliative Care Consultations for Nursing Home Residents With Dementia

    ✓ Peer-reviewed alzhub usefulness score 43 out of 100. Journal of pain and symptom management 2017-04-22 End-of-life care

    Consultations appear to reduce acute care use and (potentially) burdensome transitions for dying residents with dementia.

  5. Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

    ✓ Peer-reviewed alzhub usefulness score 52 out of 100. Journal of the American Geriatrics Society 2017-04-20 Caregiving

    Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers.

  6. Nutrition and dementia care: developing an evidence-based model for nutritional care in nursing homes

    ✓ Peer-reviewed alzhub usefulness score 39 out of 100. BMC geriatrics 2017-02-14 Digital health tools

    This collaboratively developed, person-centred model can support the design of new education and training tools and be readily translated into existing programmes.

  7. 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

    ✓ Peer-reviewed alzhub usefulness score 43 out of 100. Journal of Clinical Nursing 2017-02-09 Health systems and care delivery

    Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate.

  8. 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

    ✓ Peer-reviewed alzhub usefulness score 53 out of 100. Journal of clinical nursing 2017-02-09 End-of-life care

    Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate.

  9. Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. Journal of clinical nursing 2017-02-07 End-of-life care

    Achieving pain management in practice was highly challenging.

  10. A systematic review of medication non-adherence in persons with dementia or cognitive impairment

    ✓ Peer-reviewed alzhub usefulness score 67 out of 100. PloS one 2017-02-06 Caregiving

    Fifteen studies met inclusion criteria.

  11. Factors associated with the quality of life of family carers of people with dementia: A systematic review

    ✓ Peer-reviewed alzhub usefulness score 69 out of 100. Alzheimer's & dementia : the journal of the Alzheimer's Association 2017-02-05 Caregiving

    The quality and level of evidence supporting each theme varied.

  12. Exploring healthcare assistants' role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study

    ✓ Peer-reviewed alzhub usefulness score 41 out of 100. BMC palliative care 2017-01-19 End-of-life care

    Healthcare assistants are frontline staff who have a key role in direct patient care, spending a considerable amount of time with patients in comparison to other health professionals.

  13. Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review

    ✓ Peer-reviewed alzhub usefulness score 66 out of 100. Journal of pain and symptom management 2017-01-04 End-of-life care

    The lack of content surrounding grief represents a gap for this population at high risk for complicated grief and chronic sorrow.

  14. Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial

    ✓ Peer-reviewed alzhub usefulness score 78 out of 100. JAMA internal medicine 2017-01-01 End-of-life care

    Residents' mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women.

  15. Healthcare decision-making: past present and future, in light of a diagnosis of dementia

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. International journal of palliative nursing 2017-01-01 End-of-life care

    End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning.

  16. The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes

    ✓ Peer-reviewed alzhub usefulness score 56 out of 100. Dementia and Geriatric Cognitive Disorders 2017-01-01 Caregiving

    Residents' QoL was negatively associated with advanced dementia, PDU, and NPS.

  17. The Utilization of Robotic Pets in Dementia Care

    ✓ Peer-reviewed alzhub usefulness score 69 out of 100. Journal of Alzheimer's disease : JAD 2017-01-01 Caregiving

    Treatment with the PARO robot decreased stress and anxiety in the treatment group and resulted in reductions in the use of psychoactive medications and pain medications in elderly clients with dementia.

  18. End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands

    ✓ Peer-reviewed alzhub usefulness score 41 out of 100. International journal of geriatric psychiatry 2016-12-29 End-of-life care

    Physicians often withhold potentially burdensome life-prolonging treatment in nursing home residents in all stages of dementia in the Netherlands.

  19. Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

    ✓ Peer-reviewed alzhub usefulness score 45 out of 100. Journal of gerontological social work 2016-12-20 End-of-life care

    Hospice offers holistic support for individuals living with terminal illness and their caregivers.

  20. A systematic review of the psychobiological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress

    ✓ Peer-reviewed alzhub usefulness score 59 out of 100. Neuroscience and biobehavioral reviews 2016-12-13 Caregiving

    As the physiological impact of chronic stress is difficult to study in humans, naturalistic stressors are invaluable sources of information in this area.

  21. Palliative care interventions in advanced dementia

    ✓ Peer-reviewed alzhub usefulness score 79 out of 100. The Cochrane database of systematic reviews 2016-12-02 End-of-life care

    Data collection and analysis Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy.

  22. Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China

    ✓ Peer-reviewed alzhub usefulness score 55 out of 100. Journal of clinical nursing 2016-11-23 Caregiving

    Depression, anxiety and sleep problems are the main challenges that are faced by family caregivers of patients with Alzheimer's disease.

  23. End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. Dementia (London, England) 2016-11-07 End-of-life care

    Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease.

  24. Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis

    ✓ Peer-reviewed alzhub usefulness score 65 out of 100. International psychogeriatrics 2016-11-03 Caregiving

    We recommend focusing on cognitive enhancement strategies, assessment and management of BPSD, and carer education and support to delay nursing home placement.

  25. An Interprofessional Virtual Healthcare Neighborhood: Effect on Self-Efficacy and Sleep Among Caregivers of Older Adults With Dementia

    ✓ Peer-reviewed alzhub usefulness score 36 out of 100. Journal of gerontological nursing 2016-11-01 Risk factors

    An Interprofessional Virtual Healthcare Neighborhood (VHN) was designed to deliver information, peer support, and professional guidance to caregivers of individuals with dementia.

  26. Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study

    ✓ Peer-reviewed alzhub usefulness score 41 out of 100. Palliative medicine 2016-10-26 End-of-life care

    End-of-life care for people with dementia does not differ from care throughout the dementia trajectory.

  27. Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. Journal of medical ethics 2016-10-25 End-of-life care

    Surrogate decision-making on behalf of a person living with dementia is often a difficult process.

  28. Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia.

  29. Reliability and Validity of the Resistiveness to Care Scale Among Cognitively Impaired Older Adults

    ✓ Peer-reviewed alzhub usefulness score 66 out of 100. Journal of the American Medical Directors Association 2016-10-21 End-of-life care

    The findings support the reliability and validity of the Resistiveness to Care Scale for use with older adults with dementia in nursing home settings.

  30. A Novel and Intelligent Home Monitoring System for Care Support of Elders with Cognitive Impairment

    ✓ Peer-reviewed alzhub usefulness score 47 out of 100. Journal of Alzheimer's disease : JAD 2016-10-01 Digital health tools

    It has been proved that the proposed system is suitable to support clinicians to reliably drive and evaluate clinical interventions toward quality of life improvement of people with cognitive impairment.

  31. Digital life storybooks for people with dementia living in care homes: an evaluation

    ✓ Peer-reviewed alzhub usefulness score 42 out of 100. Clinical interventions in aging 2016-09-16 Digital health tools

    The result indicated that five of the six participants showed additional improvement in measures of quality of life and autobiographical memory.

  32. Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study

    ✓ Peer-reviewed alzhub usefulness score 46 out of 100. Geriatrics & gerontology international 2016-09-16 End-of-life care

    According to caregivers, residents with dementia experienced fewer other physical symptoms (e.g. nausea) than residents without dementia.

  33. Continuity of Care and Health Care Utilization in Older Adults With Dementia in Fee-for-Service Medicare

    ✓ Peer-reviewed alzhub usefulness score 63 out of 100. JAMA internal medicine 2016-09-01 Caregiving

    Beneficiaries with dementia who had lower levels of continuity of care were younger, had a higher income, and had more comorbid medical conditions.

  34. What is important at the end of life for people with dementia? The views of people with dementia and their carers

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. International journal of geriatric psychiatry 2016-08-12 End-of-life care

    Our findings reveal several different views on what is important about end-of-life care for people with dementia; therefore, a 'one-size-fits-all' approach to care is unlikely to be most appropriate.

  35. Improving comfort in people with dementia and pneumonia: a cluster randomized trial

    ✓ Peer-reviewed alzhub usefulness score 59 out of 100. BMC medicine 2016-08-11 Treatments

    When compared to usual care, the practice guideline for optimal symptom relief did not relieve discomfort and symptoms in nursing home residents with dementia and pneumonia.

  36. Advance care planning for nursing home residents with dementia: Influence of 'we DECide' on policy and practice

    ✓ Peer-reviewed alzhub usefulness score 38 out of 100. Patient education and counseling 2016-08-10 End-of-life care

    'We DECide' had a positive influence on advance care planning policy.

  37. A co-design process developing heuristics for practitioners providing end of life care for people with dementia

    ✓ Peer-reviewed alzhub usefulness score 40 out of 100. BMC palliative care 2016-08-02 End-of-life care

    Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life.

  38. Care assistant experiences of dementia care in long-term nursing and residential care environments

    ✓ Peer-reviewed alzhub usefulness score 32 out of 100. Dementia 2016-07-27 Health systems and care delivery

    Care assistants have a unique insight into the lives of service users and those factors which may impede or enhance the delivery of high quality dementia oriented care.

  39. General practitioners' perceptions of the barriers and solutions to good-quality palliative care in dementia

    ✓ Peer-reviewed alzhub usefulness score 41 out of 100. Dementia (London, England) 2016-07-27 End-of-life care

    The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia.

  40. Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

    ✓ Peer-reviewed alzhub usefulness score 47 out of 100. PloS one 2016-07-13 End-of-life care

    In interviews PWD were able to indicate their treatment preferences across all three scenarios.

  41. An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

    ✓ Peer-reviewed alzhub usefulness score 41 out of 100. BMC palliative care 2016-07-07 End-of-life care

    The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff.

  42. A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being

    ✓ Peer-reviewed alzhub usefulness score 64 out of 100. International psychogeriatrics 2016-06-27 Caregiving

    The evidence is not conclusive as to whether some BPSD impact caregiver well-being more than others.

  43. Pain in Hospice Patients With Dementia: The Informal Caregiver Experience

    ✓ Peer-reviewed alzhub usefulness score 36 out of 100. American journal of Alzheimer's disease and other dementias 2016-06-14 End-of-life care

    Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.

  44. Fidelity to a behavioral intervention to improve goals of care decisions for nursing home residents with advanced dementia

    ✓ Peer-reviewed alzhub usefulness score 72 out of 100. Clinical trials (London, England) 2016-06-07 End-of-life care

    The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia.

  45. A meta-review of stress, coping and interventions in dementia and dementia caregiving

    ✓ Peer-reviewed alzhub usefulness score 68 out of 100. BMC geriatrics 2016-05-18 Caregiving

    This meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health.

  46. New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff

    ✓ Peer-reviewed alzhub usefulness score 33 out of 100. Dementia 2016-05-06 Health systems and care delivery

    The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated.

  47. Short-Term Effects of a Gain-Focused Reappraisal Intervention for Dementia Caregivers: A Double-Blind Cluster-Randomized Controlled Trial

    ✓ Peer-reviewed alzhub usefulness score 61 out of 100. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry 2016-04-29 Treatments

    Finding positive gains reduces depressive symptoms and burden and promotespsychological well-being primarily through enhancing self-efficacy in controlling upsetting thoughts.

  48. Hearing Their Voice: A Systematic Review of Dementia Family Caregivers' Needs

    ✓ Peer-reviewed alzhub usefulness score 58 out of 100. The Gerontologist 2016-04-21 Caregiving

    Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers' personal needs.

  49. Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians

    ✓ Peer-reviewed alzhub usefulness score 47 out of 100. Archives of gerontology and geriatrics 2016-04-11 End-of-life care

    There is considerable ambiguity about initiating ACP in dementia at diagnosis among physicians practicing in two different European health care systems and caring for different patient populations.

  50. Effectiveness of Supporting Informal Caregivers of People with Dementia: A Systematic Review of Randomized and Non-Randomized Controlled Trials

    ✓ Peer-reviewed alzhub usefulness score 58 out of 100. Journal of Alzheimer's disease : JAD 2016-04-01 Disparities

    Despite methodological inconsistency, supporting caregivers appears to be an effective strategy often improving well-being of caregiver or care-recipient and resulting in additional benefits for society.

From across this tag

9 of the 1,002 studies in this tag, picked by a fixed rule (a hash of each study's address), not by score or date; each page of this list shows a different 9. The same 9 appear here every time.

All topic tags with their study counts