Healthcare decision-making: past present and future, in light of a diagnosis of dementia
Open accessAbstract
End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning. Advance care planning in dementia is less well developed than in some other disease groups such as cancer and, arguably, may be more complex. A person with dementia may lose the capacity to make decisions associated with advance care planning early in the course of the disease, requiring more involvement of family carers. This study explores the ‘lived’ context to health care decision-making of dyads (the person with dementia and their carer) in respect of past, present and future healthcare decision-making.
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Although Alzheimer's disease neuropathology was the commonest cause of dementia, Alzheimer's disease changes rarely occurred on their own, so only 9% of people with dementia had pure Alzheimer's disease pathology.
“Although Alzheimer's disease neuropathology was the commonest cause of dementia, Alzheimer's disease changes rarely occurred on their own, so only 9% of people with dementia had pure Alzheimer's disease pathology.300”
From Dementia prevention, intervention, and care: 2020 report of the Lancet Commission (2020) · cites this paper as [300]
The Background Dementia section describes dementia generally, while the study sections address healthcare decision-making after diagnosis. Searches for “9%,” pure Alzheimer’s pathology, and mixed neuropathology found no passage addressing the claimed prevalence or pathology; page numbers were not available in our copy. (LLM, conf=0.76)
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- Authors
- Dening, K. H., King, M., Jones, L., & Sampson, E. L.
- Affiliations
- Dementia UK (GB)
- University College London (GB)
- Venue
- International Journal of Palliative Nursing
- Publisher
- Mark Allen Group
- Published
- 2017-01-02
- Volume
- 23
- Issue
- 1
- Pages
- 4-11
- ISSN
- 1357-6321 (ISSN-L)
- 2052-286X
- OpenAlex
- W2581760530
- Cited by
- 42
- References
- 33
- Citations by year
- 2025: 1 · 2024: 7 · 2023: 2 · 2022: 3 · 2021: 5 · 2020: 3 · 2019: 7 · 2018: 9 · 2017: 5
- FWCI
- 6.15
- Type
- journal article
- Language
- en
- Open access
- green
- discovery.ucl.ac.uk
- Locations
- International Journal of Palliative Nursing (publishedVersion)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion)
- Funders
- National Institute for Health and Care Research (NF-SI-0611-10210)
- Marie Curie (MCCC-FCO-11-U)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- dementia, advance care planning, healthcare decision-making, end-of-life care, family caregivers, decision-making capacity, lived experience
- MeSH terms
- Aged, Aged, 80 and over, Decision Making, Dementia, Female, Humans, Male, Terminal Care, Advance Care Planning
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