Background People living with dementia may experience difficulties with eating and drinking, affecting their nutrition and hydration throughout the dementia trajectory. Such difficulties increase towards the end-of-life causing a strain on family carers. The aim of this study was to understand the needs of family carers and professionals supporting the person with dementia with nutrition and hydration towards the end-of-life and the strategies used to manage these challenges.
Methods Forty-one semi-structured interviews with family carers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas in 2019–20 to explore their experiences. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis methods.
Results Five themes were identified: family carers struggling before seeking help, perceived priorities of care, professionals’ support and educational roles, nutrition and hydration challenges, and strategies. Family carers often find it hard to adapt to the changing nutrition and hydration challenges associated with the progression of dementia. Comfort becomes the focus of care instead of nutrition once the approach of the end of life is accepted. Professionals and family carers need to work together to better respond to changing needs and may be able to learn from one another. Physical impairments also impact on initial cognitive difficulties affecting individuals’ nutrition and hydration needs towards the end-of-life. Flexibility and creativity are key to adapt to these changing needs towards the end-of-life.
Conclusions We need to establish how and when is best to hold discussions with family carers about changes in nutrition and hydration associated with the progression of dementia. Professional support to understand the transition towards care provision that becomes more focused on ensuring comfort and enjoyment towards the end-of-life may be helpful to family carers. The components of this and its acceptability need to be explored as well as professional capability and capacity.
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