ArticlePloS one2023
Experiences and preferences for advance care planning following a diagnosis of dementia: Findings from a cross-sectional survey of carers.
Article in PloS one, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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.
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Who cites it
5 citing papers in PubMed, 6 citations in OpenAlex.
- Factors Associated with Family Caregivers' Intentions to Complete an Advance Directive for Individuals with Dementia: A Cross-Sectional Descriptive Study.Healthcare (Basel, Switzerland) · 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
- Access to personalised dementia care planning in primary care: a mixed methods evaluation of the PriDem intervention.BMJ open · 2024Article
- Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFuture medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making.
aimsTo explore from the perspective of carers of persons with dementia: (1) Participation in future medical and financial planning by the person they care for, including when planning was undertaken and the characteristics associated with having an advance care directive completed; (2) The type of healthcare providers who discussed advance care planning following diagnosis; and (3) Preferences for timing of discussions about advance care planning following diagnosis.
methodsRecruitment and data collection took place between July 2018 and June 2020. Carers of persons with dementia aged 18 years and older were mailed a survey. Participants completed questions regarding completion of various future planning documents by the person they support, including time of completion and who discussed advance care planning following diagnosis. Participants were presented with information about the benefits and consequences of early and late discussions of advance care planning and asked when discussions about advance care planning were best initiated.
results198 carers participated. Most participants were female (74%) and had been a carer for more than 2 years (82%). Most participants reported that the person with dementia they support had made a Will (97%) and appointed an Enduring Guardian (93%) and Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. No significant associations were found between characteristics of persons with dementia and completion of an advance care directive. Geriatricians (53%) and GPs (51%) most often discussed advance care planning following diagnosis. Most carers thought that discussions about advance care planning should occur in the first few weeks or months following diagnosis (32%), at the healthcare provider's discretion (31%), or at the time of diagnosis (25%).
conclusionsMore than half of persons with dementia do not have an advance care directive. There is variability in preferences for timing of discussions following dementia diagnosis.
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Registered trials
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