ArticleJournal of clinical nursing2022
The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study.
Article in Journal of clinical nursing, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Views and Experiences of Dementia in People With Intellectual Disabilities: A Systematic Review of Qualitative Research.Journal of intellectual disability research : JIDR · 2025Pooled it
- Perceptions of Alzheimer's Disease Among Cognitively Healthy, Community-Dwelling Older Adults: A Metaphor Study.Psychogeriatrics : the official journal of the Japanese Psychogeriatric Society · 2026Article
- '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
- Meaning and Influencing Factors of a Good Death for Community-Dwelling Individuals With Dementia: An Integrative Review.International journal of older people nursing · 2026Review
- Association of MoCA-measured cognitive functions with decision-making capacity in older adults with cognitive impairment.BMC geriatrics · 2026Article
- Perspectives on advanced care planning of adolescent and young adult cancer patients, families, and healthcare providers: A qualitative study based on the health belief model.Asia-Pacific journal of oncology nursing · 2025Article
- Development and psychometric evaluation of a learning needs assessment tool for healthcare professionals in palliative dementia care: A cross-sectional study.International journal of nursing studies advances · 2025Article
- Desired dementia care towards end of life: Development and experiences of implementing a new approach to improve person-centred dementia care.Journal of advanced nursing · 2025Article
- Impact of the DEDICATED approach to optimizing palliative care for people with dementia: a multi-method study.BMC health services research · 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
- Exploring the lived experience: impact of dementia diagnosis on individuals with cognitive impairment - a qualitative study.BMC geriatrics · 2024Article
- Supportive care decision-making processes of persons with dementia and their caregivers.Dementia (London, England) · 2023Article
- Views of people living with dementia and their carers on their present and future: a qualitative study.BMC palliative care · 2023Article
- Association between advance care planning and depressive symptoms among community-dwelling people with dementia: An observational cross-sectional study during the COVID-19 pandemic in Japan.Frontiers in public health · 2023Observational
- The Complexity of Nutritional Problems in Persons with Dementia: Expanding a Theoretical Model.Journal of Alzheimer's disease : JAD · 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
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
AIMS AND
objectivesTo explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations.
backgroundAwareness about perspectives of people with dementia should decrease stigmatisation and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning.
designQualitative descriptive design.
methodsWe performed in-depth interviews with 18 community-dwelling persons with dementia in South-Limburg, the Netherlands. Transcripts were analysed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines.
resultsFive overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings.
conclusionsParticipants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life. RELEVANCE TO CLINICAL PRACTICE: This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families.
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