. 2024 Sep;68(3):e206-e227.

doi: 10.1016/j.jpainsymman.2024.05.028. Epub 2024 Jun 6.

Palliative Care in Early Dementia

Karen de Sola-Smith¹, Joni Gilissen², Jenny T van der Steen³, Inbal Mayan⁴, Lieve Van den Block⁵, Christine S Ritchie⁶, Lauren J Hunt⁷

Affiliations

¹ Department of Geriatrics (K.d.S.), Palliative and Extended Care, Veterans Affairs Medical Center, San Francisco, California, USA; Department of Physiological Nursing (K.d.S., L.J.H.), University of California San Francisco, California, USA. Electronic address: karen.desola@ucsf.edu.
² Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Department of Family Medicine and Chronic Care (J.G., L.V.B), Vrije Universiteit Brussel (VUB) and Department of Public Health and Primary Care, End-of-Life Care Research Group, Universiteit Gent, Brussels, Belgium.
³ Department of Primary and Community Care and Radboudumc Alzheimer Center (J.T.S.), Radboud university medical center, Nijmegen, The Netherlands; Department of Public Health and Primary Care (J.T.S.), Leiden University Medical Center, Leiden, The Netherlands.
⁴ Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA.
⁵ Department of Family Medicine and Chronic Care (J.G., L.V.B), Vrije Universiteit Brussel (VUB) and Department of Public Health and Primary Care, End-of-Life Care Research Group, Universiteit Gent, Brussels, Belgium.
⁶ Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Division of Palliative Care and Geriatric Medicine and the Mongan Institute for Aging and Serious Illness (CASI) (C.S.R.), Massachusetts General Hospital (MGH), Boston, Massachusetts, USA; Harvard Medical School (C.S.R.), Harvard University, Boston, Massachusetts, USA.
⁷ Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Department of Physiological Nursing (K.d.S., L.J.H.), University of California San Francisco, California, USA; Philip R. Lee Institute for Health Policy Studies (L.J.H.), University of California San Francisco, California, USA.

PMID: 38848792
PMCID: PMC12060741
DOI: 10.1016/j.jpainsymman.2024.05.028

Palliative Care in Early Dementia

Karen de Sola-Smith et al. J Pain Symptom Manage. 2024 Sep.

. 2024 Sep;68(3):e206-e227.

doi: 10.1016/j.jpainsymman.2024.05.028. Epub 2024 Jun 6.

Authors

Karen de Sola-Smith¹, Joni Gilissen², Jenny T van der Steen³, Inbal Mayan⁴, Lieve Van den Block⁵, Christine S Ritchie⁶, Lauren J Hunt⁷

Affiliations

¹ Department of Geriatrics (K.d.S.), Palliative and Extended Care, Veterans Affairs Medical Center, San Francisco, California, USA; Department of Physiological Nursing (K.d.S., L.J.H.), University of California San Francisco, California, USA. Electronic address: karen.desola@ucsf.edu.
² Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Department of Family Medicine and Chronic Care (J.G., L.V.B), Vrije Universiteit Brussel (VUB) and Department of Public Health and Primary Care, End-of-Life Care Research Group, Universiteit Gent, Brussels, Belgium.
³ Department of Primary and Community Care and Radboudumc Alzheimer Center (J.T.S.), Radboud university medical center, Nijmegen, The Netherlands; Department of Public Health and Primary Care (J.T.S.), Leiden University Medical Center, Leiden, The Netherlands.
⁴ Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA.
⁵ Department of Family Medicine and Chronic Care (J.G., L.V.B), Vrije Universiteit Brussel (VUB) and Department of Public Health and Primary Care, End-of-Life Care Research Group, Universiteit Gent, Brussels, Belgium.
⁶ Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Division of Palliative Care and Geriatric Medicine and the Mongan Institute for Aging and Serious Illness (CASI) (C.S.R.), Massachusetts General Hospital (MGH), Boston, Massachusetts, USA; Harvard Medical School (C.S.R.), Harvard University, Boston, Massachusetts, USA.
⁷ Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Department of Physiological Nursing (K.d.S., L.J.H.), University of California San Francisco, California, USA; Philip R. Lee Institute for Health Policy Studies (L.J.H.), University of California San Francisco, California, USA.

PMID: 38848792
PMCID: PMC12060741
DOI: 10.1016/j.jpainsymman.2024.05.028

Abstract

Background: Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia.

Objective: To systematically map current research on palliative care early in the disease trajectory of dementia.

Design: Scoping review of scientific literature.

Data sources: PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science.

Review methods: We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute.

Results: 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.

Conclusion: 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.

Keywords: Mild cognitive impairment; advance care planning; early dementia; palliative care.

Published by Elsevier Inc.

PubMed Disclaimer

Conflict of interest statement

This work was supported by the Department of Veterans Affairs, Veterans Health Administration, Office of Academic Affiliations VA Quality Scholars Advanced Fellowship Program (Program Award Number 3Q082019C). The views expressed herein are those of the authors and do not necessarily represent the views of the US Department of Veterans Affairs, the US government, the University of California, San Francisco, or other affiliated organizations.

Figures

See this image and copyright information in PMC

References

1. Wolters FJ, Chibnik LB, Waziry R, et al. Twenty-seven-year time trends in dementia incidence in Europe and the United States. The Alzheimer Cohorts Consortium 2020;95: e519–e531. 10.1212/wnl.0000000000010022. - DOI - PMC - PubMed
1. Beernaert K, Deliens L, De Vleminck A, et al. Is there a need for early palliative care in patients with life-limiting illnesses? Interview study with patients about experienced care needs from diagnosis onward. Am J Hosp Palliat Care 2016;33:489–497. 10.1177/1049909115577352. - DOI - PubMed
1. van der Steen JT, Radbruch L, Hertogh CM, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28:197–209. 10.1177/0269216313493685. - DOI - PubMed
1. Radbruch L, De Lima L, Knaul F, et al. Redefining palliative care—a new consensus-based definition. J Pain and Symptom Manage 2020;60:754–764. - PMC - PubMed
1. Ahluwalia SC, Chen C, Raaen L, et al. A systematic review in support of the national consensus project clinical practice guidelines for quality palliative care. J Pain Symptom Manage 2018;56:831–870. - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions

Grants and funding

K76 AG074924/AG/NIA NIH HHS/United States

LinkOut - more resources

Full Text Sources
Medical
- MedlinePlus Health Information
Miscellaneous
- NCI CPTAC Assay Portal

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Palliative Care in Early Dementia

Affiliations

Palliative Care in Early Dementia

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous