Background People living with dementia often face eating and drinking difficulties as life is ending. Family and friends find this emotionally challenging and professionals also struggle to provide information and support. The aim of this systematic review was to 1) explore the views of people with dementia and those involved in supporting eating and drinking for someone with dementia (paid and unpaid carers) at the end of life; and 2) explore views and experiences of artificial nutrition and hydration (ANH) for people with dementia.
Methods A systematic search was conducted in Medline, CINAHL, Embase and PsycINFO, for English-language qualitative studies published between 2000 and 2019, and forward and backward citation tracking. Studies were synthesised using narrative synthesis and thematic analysis methods.
Results 18 papers were included with six focussing on carers’ and 13 on professionals’ views. Professionals and carers reported on challenges associated with supporting nutrition and hydration and several strategies used to facilitate oral intake (i.e., modifying the environment and food provision). When ANH was considered, six main factors were identified as influencing decisions: 1) personal perceptions; 2) national context; 3) understanding of the natural dying process; 4) involvement of different parties (i.e., professionals in multidisciplinary teams, carers and the person living with dementia); 5) lack of information; and 6) prognosis.
Discussion Decisions around eating and drinking and the introduction of ANH require clear and respectful communication among all involved (including those living with dementia), as their personal/professional experiences, perceptions and knowledge impact on their behaviours and emotions.
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