ArticlePalliative medicine2022
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.
Article in Palliative medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06264362 (Developing a Nonpharmacological Pain Intervention for Community-dwelling Older Adults With Dementia), which is not on this map. Cited by 17 papers, 2 of them syntheses that pooled it.
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.
Developing a Nonpharmacological Pain Intervention for Community-dwelling Older Adults With Dementia
Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The Experience of Stigma Within the Young Onset Dementia (YOD) Population: A Systematic Review of Qualitative Research.Health expectations : an international journal of public participation in health care and health policy · 2026Pooled it
- Longing for continuity: A systematic review and thematic synthesis of qualitative research on the experience of older people living with chronic illness towards the end of life.Social science & medicine (1982) · 2026Pooled it
- 'I do Things that I don't Really Want to do …': Understanding the Everyday Lives of Family Carers of People With Dementia.Dementia (London, England) · 2026Article
- "Straddling two worlds": complexities of spousal caregiving in amyotrophic lateral sclerosis during younger middle age.BMC palliative care · 2026Article
- Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review.BMC geriatrics · 2025Article
- Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review.BMC palliative care · 2025Review
- Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study.Journal of pain and symptom management · 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
- The representation of Australians living with dementia in voluntary assisted dying research: A scoping review.Australasian journal on ageing · 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
- Palliative Care in Nursing Home Residents with Young-Onset Dementia: Professional and Family Caregiver Perspectives.Journal of Alzheimer's disease : JAD · 2024Observational
- Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals.BMC medical informatics and decision making · 2023Article
- Experiences with and perspectives on advance care planning in young- and late- onset dementia: A focus group study with physicians from various disciplines.Frontiers in aging neuroscience · 2023Article
- The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital.Healthcare (Basel, Switzerland) · 2022Article
- "People are more afraid of a dementia diagnosis than of death": The challenges of supporting advance care planning for persons with dementia in community settings.Frontiers in dementia · 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
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundBroad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies.
aimWe aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers.
designA qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. SETTING/
participantsWe included 10 people with young-onset dementia and 10 of their family caregivers in Flanders.
resultsParticipants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future.
conclusionsEngagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia's and their caregivers' needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so.
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.