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

Abstract

Background: Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives.

Objective: This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance.

Design: Qualitative study using semi-structured interviews.

Setting: Community.

Methods: We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically.

Results: Five themes were identified: (i) awareness of eating and drinking problems; (ii) food and drink representing an individual's identity and agency; (iii) delegating later decisions about eating and drinking to family carers; (iv) acceptability of eating and drinking options; and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration.

Conclusion: For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an individual approach.

Keywords: dementia; hydration; nutrition; older people; patient-centred; qualitative research.