ArticlePalliative medicine2024
The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia.
Article in Palliative medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
10 citing papers in PubMed.
- The economics of decision-making in dementia care and related life-limiting illness: a narrative review.Health economics review · 2026Review
- Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory study.BMC geriatrics · 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
- Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers.Palliative medicine · 2025Article
- Article
- Advance care planning in adults ages 80 years and older with impaired cognition: Using actual conversations to examine best practices.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Shared care planning in people with cognitive disorders and dementia: a survey among patients and caregivers in Italy.BMC medical ethics · 2024Article
- Evaluation of interactive web-based tools to stimulate reflection and communication about advance care planning with people with dementia and their family caregivers.BMC palliative care · 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
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAdvance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia.
aimTo gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition.
designAn in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis. SETTING/
participantsWe included 12 people with dementia and 9 supporters.
resultsParticipants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia.
conclusionsThe perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.
Indexed as
Identifiers
What OpenQuestion holds
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.