Nutrition and hydration for people living with dementia near the end of life: A qualitative systematic review

Abstract

Aims: To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life. Design: Systematic review and narrative synthesis of qualitative studies.

How do people living with dementia perceive eating and drinking difficulties? A qualitative study

“…In line with fears of being treated like a child, notions of ‘role reversal’ of spousal and parent–child relationships may create anxiety in people with dementia and fears of being burdensome to family [ 9 , 29 , 32 ]. ANH was also deemed unacceptable by participants in this study; however, in previous studies some carers and professionals might perceive ANH was unavoidable, or want to try every available option [ 15 , 19 ]. Participants stated wanting to take carers’ well-being and opinions into account, together with recommendations from professionals when making decisions about eating and drinking.…”

“…Such approaches to encourage eating have promising benefits in terms of improving nutritional status, quality of life and social engagement [ 10 ]. However, at the advanced stage of dementia, these interventions require time from carers supplemented by good homecare services [ 19 , 30 ]. In line with fears of being treated like a child, notions of ‘role reversal’ of spousal and parent–child relationships may create anxiety in people with dementia and fears of being burdensome to family [ 9 , 29 , 32 ].…”

“…Most studies on eating and drinking for people living with dementia have focussed on family carers and professionals, or analysed routinely collected data about people living with dementia. Little is known of the perspectives of people with dementia themselves about eating and drinking problems [ 15 , 19 ]. Hence, we aimed to explore the experiences, needs, and opinions of people living with mild dementia about possible future eating and drinking problems.…”

Family caregivers' and professionals' experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life

“…Little is known about the needs of caregivers and the strategies they use to manage these eating and drinking difficulties at any stage of the dementia trajectory (Ball et al., 2015; Mole et al., 2019), including the end of life. A systematic review of the experiences of family caregivers and practitioners supporting people living with dementia with eating and drinking towards the end of life revealed most studies focused on the experience of practitioners working in medical or long‐term residential settings rather than the views of caregivers (Barrado‐Martín et al., 2020). Practitioners reported lacking the training and confidence to support caregivers in making decisions about eating and drinking towards the end of life (Chang et al., 2009; Smith et al., 2016).…”

“…Qualitative studies have focused mainly on exploring professionals' or caregivers' views on the use of artificial nutrition and hydration (ANH) at later stages (Pasman et al., 2004; The et al., 2002) rather than alternative ways of supporting oral nutrition and hydration (Barrado‐Martín et al., 2020). However, ANH is not currently recommended towards the end of life in dementia in the United Kingdom (NICE, 2018; Sampson et al., 2009).…”