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Cited by 216Palliative Care and End-of-Life IssuesDementia and Cognitive Impairment ResearchPalliative and Oncologic Care

Preferences for end-of-life care: a nominal group study of people with dementia and their family carers.

Open access
Dening, Karen H, Jones, Louise, Sampson, Elizabeth L·2013·Palliative Medicine
DOI 10.1177/0269216312464094PMC PMC3652642
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Abstract

BACKGROUND: The wishes and preferences of people with dementia should inform decisions on future care. However, such decisions are often left to family carers and may not reflect those the person with dementia would have made for themselves. We know little about what influences agreement between people with dementia and their carers. AIM: To explore whether people with dementia and their carers were able to generate and prioritise preferences for end-of-life care. We examined whether carers influenced the choices made by the persons with dementia. DESIGN: Nominal group technique. SETTING/PARTICIPANTS: People with dementia (n = 6), carers (n = 5) and dyads of people with dementia and carers (n = 6) attending memory assessment services. METHODS: Three modified nominal group technique groups were conducted in five stages: (1) silent generation of ideas, (2) discussion, (3) further generation of ideas, (4) discussion and themeing and (5) ranking. The discussions were recorded, transcribed and analysed for thematic content using NVIVO8. RESULTS: Quality of care, family contact, dignity and respect were ranked as significant themes by all groups. The analysis of transcripts revealed three main themes: quality of care, independence and control and carer burden. People with dementia had difficulty considering their future selves. Carers wanted much control at the end of life, raising issues of assisted dying and euthanasia. CONCLUSIONS: Wishes and preferences of people with dementia and their family carers may differ. To ensure the wishes of people with dementia are respected, their views should be ascertained early in the disease before their ability to consider the future is compromised.

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  • Carers often find planning difficult, and Advanced Care Plans (ACPs) have not been widely taken up.

    “Carers often find planning difficult, and Advanced Care Plans (ACPs) have not been widely taken up [13].”

    From How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study (2016) · cites this paper as [13]

    The Results (Independence and control; page unavailable) explicitly say carers found it difficult to plan ahead. The Introduction says ACP is less developed in Europe and the United Kingdom, but does not establish that ACPs have not been widely taken up generally. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • Clinicians identify multiple barriers to initiating ACP conversations in persons living with dementia, including unpredictable illness trajectory, uncertainty about the right time to commence ACP, lack of time, resources, and knowledge, discomfort with ACP discussions, and difficulty determining the decision-making capacity of the person living with dementia.

    “Numerous factors have been identified by clinicians as barriers to initiating ACP conversations in PLwD including unpredictable illness trajectory; uncertainty about the right time to commence the ACP process [10–12]; lack of time, resources, and knowledge; discomfort with ACP discussions [8, 13]; and difficulty in determining the decision-making capacity of the PLwD [14].”

    From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [11]

    The Introduction discusses a possible ‘window of opportunity’ for ACP before cognition and capacity decline, and the Discussion says an unclear prognosis may limit planning. These passages support the timing and uncertainty concerns attached to this citation, but the study examined people with dementia and family carers, not clinicians identifying barriers to initiating conversations. (LLM, conf=0.84)

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Research works printed but not linked: 1

  1. [18]Bostwick D Foss G Obtaining consumer input: two strategies for identifying and ranking the problems of mentally retarded adults. Educ Train Ment Retard 1981; 16: 207– 212

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Authors
Dening, K. H., Jones, L., & Sampson, E. L.
Affiliations
  • Dementia UK (GB)
  • University College London (GB)
  • Barnet Enfield and Haringey Mental Health Trust (GB)
Corresponding author
Dening, Karen H
ORCID
Venue
Palliative Medicine
Publisher
SAGE Publications
Published
2012-11-05
Volume
27
Issue
5
Pages
409-417
ISSN
  • 0269-2163 (ISSN-L)
  • 1477-030X
DOI
10.1177/0269216312464094
PMC
PMC3652642
OpenAlex
W2061186156
Cited by
216
References
34
Citations by year
2026: 3 · 2025: 16 · 2024: 17 · 2023: 23 · 2022: 25 · 2021: 17 · 2020: 17 · 2019: 14 · 2018: 17 · 2017: 16 · 2016: 23 · 2015: 9 · 2014: 12 · 2013: 7
FWCI
8.65
Type
journal article
Language
en
Open access
Licence
Locations
  • Palliative Medicine (publishedVersion, cc-by-nc)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • UCL Discovery (University College London) (submittedVersion)
Funders
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 › Palliative and Oncologic Care
Keywords
dementia, end-of-life care, advance care planning, family caregivers, carer preferences, quality of care, caregiver burden, assisted dying, euthanasia, future self, person-centred care, dignity and respect
MeSH terms
Aged, Aged, 80 and over, Dementia, Family, Female, Humans, Male, Terminal Care, Caregivers, Advance Care Planning, Patient Preference

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