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

1. Karen H Dening
   1. Dementia UK, London, UK; Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London, London, UK
2. Louise Jones
   1. Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London, London, UK
3. Elizabeth L Sampson
   1. Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London, London, UK; Barnet, Enfield and Haringey Mental Health Trust, London, UK

1. Karen Harrison Dening, Dementia UK, 6 Camden High Street, London, NW1 0JH, UK Email: Karen.harrison-dening@dementiauk.org

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.

• Advance care planning
• dementia
• end of life
• nominal group technique
• prospect theory
• palliative care

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