期刊
HEALTH & SOCIAL CARE IN THE COMMUNITY
卷 30, 期 1, 页码 307-318出版社
WILEY-HINDAWI
DOI: 10.1111/hsc.13404
关键词
challenges and strategies; dysphagia; eating and drinking; palliative care; qualitative research
资金
- Alzheimer's Society, UK [AS-JF-16b-012]
- NIHR In-Practice Fellowship [300286]
- Marie Curie core grant [MCCC-FCO-16-U]
- [MCRGS-20171219-8004]
The study identified the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life, emphasizing the importance of mutual support, flexibility, and awareness of the challenges associated with dementia progression.
The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.
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