ArticleJournal of the American Geriatrics Society2021
Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning.
Article in Journal of the American Geriatrics Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed, 2 syntheses or guidelines pooled it, 45 citations in OpenAlex.
- Factors associated with participation in advance care planning among people with different degrees of cognitive impairment: a systematic review.BMC palliative care · 2026Pooled it
- Palliative Care in Early Dementia.Journal of pain and symptom management · 2024Pooled it
- Factors Associated With Family Caregivers' Attitudes Toward Withholding Life-Sustaining Treatment in Older Adults With Dementia: A Cross-Sectional Study.Nursing open · 2026Article
- Association of MoCA-measured cognitive functions with decision-making capacity in older adults with cognitive impairment.BMC geriatrics · 2026Article
- Assessment of Dementia Patients Caregivers' Home Safety Knowledge in the Outpatient Setting of Jeddah, Saudi Arabia.Risk management and healthcare policy · 2026Article
- Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review.BMC geriatrics · 2025Article
- Coping with cognitive decline in older adults with mild cognitive impairment or mild dementia: a scoping review.Aging & mental health · 2025Article
- "You like to be in control of your own destiny to a degree, don't you?": conscientious autonomy and planning for future care with dementia.BMC palliative care · 2025Article
- Caregivers' Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship.The Gerontologist · 2025Article
- Disparities in Advance Care Planning Across Rurality, Sociodemographic Characteristics, and Cognition Levels: Evidence from the Health and Retirement Study.Journal of ageing and longevity · 2024Article
- Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.The lancet. Healthy longevity · 2024Article
- High-Intensity Care for Nursing Home Residents with Severe Dementia Hospitalized at the End of Life: A Mixed Methods Study.Journal of the American Medical Directors Association · 2024Article
- Development of an Advance Care Planning Portal-Based Tool for Community-Dwelling Persons Living With Cognitive Impairment: The ACPVoice Tool.The American journal of hospice & palliative care · 2023Article
- A dyadic advance care planning intervention for people with early-stage dementia and their family caregivers in a community care setting: a feasibility trial.BMC geriatrics · 2023Article
- A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended.Palliative medicine · 2022Article
- Perceived dementia risk and advance care planning among older adults.Journal of the American Geriatrics Society · 2022Article
- Advance Care Planning in Neurodegenerative Disorders: A Scoping Review.International journal of environmental research and public health · 2022Article
- Experts' perception of support for people with dementia and their families during the COVID-19 pandemic.Geriatrics & gerontology international · 2022Article
- Article
- "Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic.Journal of Alzheimer's disease : JAD · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
BACKGROUND/
objectivesAdvance 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.
designQualitative study with separate focus groups for patients and caregivers.
settingMemory disorder clinics.
participantsTwenty 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.
resultsNo 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.
conclusionsEven 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.