Cognitively Impaired Older Persons’ and Caregivers’ Perspectives on Dementia-Specific Advance Care Planning.
Open accessAbstract
BACKGROUND/OBJECTIVES: Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP. DESIGN: Qualitative study with separate focus groups for patients and caregivers. SETTING: Memory disorder clinics. PARTICIPANTS: Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. MEASUREMENTS: Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. RESULTS: No participants had engaged in any written form of dementia-specific planning. Barriers to dementia-specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. CONCLUSIONS: Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia-specific advance directive documents.
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Many patients with early stages of cognitive impairment and their care partners are not interested in ACP conversations because they want to live in the moment, think dementia is unrelated to physical health, or do not see the point in partaking in ACP as they would not be aware of the decisions made for them in the advanced stages due to cognitive decline.
“Fried and colleagues reported that many patients with early stages of cognitive impairment and their care partners are not interested in ACP conversations as they want to live in the moment, think dementia is unrelated to physical health, or do not see the point in partaking in ACP as they would not be aware of the decisions made for them in the advanced stages due to cognitive decline [15].”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [15]
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Experimental — accuracy not yet measuredSeveral barriers to dementia-specific ACP have previously been identified by PLwD and their care partners.
“Several barriers to dementia-specific ACP have previously been identified by PLwD and their care partners [15].”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [15]
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“Several barriers to dementia-specific ACP have previously been identified by PLwD and their care partners [15].”
Background
- Authors
- Fried, T. R., Cohen, A. B., Harris, J. E., & Moreines, L.
- Affiliations
- Yale University (US)
- Corresponding author
- Fried, Terri R.
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2020-11-20
- Volume
- 69
- Issue
- 4
- Pages
- 932-937
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC8300881
- OpenAlex
- W3098692086
- Cited by
- 45
- References
- 18
- Citations by year
- 2026: 3 · 2025: 12 · 2024: 11 · 2023: 5 · 2022: 11 · 2021: 3
- FWCI
- 3.55
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute of Nursing Research (R01NR016007)
- National Institute on Aging (K76AG059987, P30AG21342)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- advance directives, mild cognitive impairment, early-stage dementia, older adults, caregivers, barriers to planning, surrogate decision-making, end-of-life decisions
- MeSH terms
- Aged, Communication Barriers, Decision Making, Dementia, Female, Humans, Health Knowledge, Attitudes, Practice, Male, Patient Participation, Quality of Life, Terminal Care, Mental Competency, Caregivers, Advance Care Planning, Qualitative Research
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