Home › Research › End-of-life care
Palliative Care in Early Dementia
Karen de Sola-Smith, Joni Gilissen, Jenny T van der Steen, Inbal Mayan, Lieve Van den Block, Christine S Ritchie, Lauren J Hunt. Journal of pain and symptom management, 2024-06-06
Topic: Health services, long-term care and technology
Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.
Key findings
- Among the 77 papers reviewed, few addressed early stages of dementia specifically.
- We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory.
- Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers.
- The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care.
- The literature on palliative care in early dementia is sparse.
Study details
- Evidence strengthLow
How this study scored 64/100
Published in a peer-reviewed journal, and it is a systematic review of all the studies on the question. Scored zero for sample size, effect reported and studied in people because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record, multi-centre collaboration and free to read, so those were left out: it earned 36 of the 56 points we could judge it on, which is 64 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of pain and symptom management) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 12 / 12 | A systematic review of all the studies on the question (from PubMed type “Systematic Review”) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2024 — within 3 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | A review of other studies — randomisation is not credited here |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 38848792) |
| Free to read | — / 2 | Access not recorded — left out of this score |
| Points | 36 / 56 | Scored on 10 of 20 parts. We have no data for the rest, so they are left out: 36 of the 56 points we could judge it on is 64 out of 100. |
| Total | 64 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Free copy unknown: no free-copy check has an answer for this record yet. That does not mean it is paywalled.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 7 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
APA 7th
de Sola-Smith, K., Gilissen, J., van der Steen, J. T., Mayan, I., Van den Block, L., Ritchie, C. S., et al. (2024). Palliative Care in Early Dementia. Journal of pain and symptom management. https://doi.org/10.1016/j.jpainsymman.2024.05.028
Vancouver
de Sola-Smith K, Gilissen J, van der Steen JT, Mayan I, Van den Block L, Ritchie CS, et al. Palliative Care in Early Dementia. Journal of pain and symptom management. 2024. doi:10.1016/j.jpainsymman.2024.05.028. PMID: 38848792.
BibTeX
@article{desolasmith2024-38848792,
author = {de Sola-Smith, Karen and Gilissen, Joni and van der Steen, Jenny T and Mayan, Inbal and Van den Block, Lieve and Ritchie, Christine S and Hunt, Lauren J},
title = {{Palliative Care in Early Dementia}},
journal = {Journal of pain and symptom management},
year = {2024},
doi = {10.1016/j.jpainsymman.2024.05.028},
pmid = {38848792},
url = {https://doi.org/10.1016/j.jpainsymman.2024.05.028}
}
Related studies in End-of-life care
Also in End-of-life care
116 studies in the library are filed under End-of-life care with no topic tag they share with another; these are this study's neighbours in a fixed tour of them. The End-of-life care hub.