“It’s more than just eating” - Family carer lived experiences of eating and appetite in people with dementia

Abstract

Changes in eating behaviour and appetite are a recognised symptom of dementia, described as difficult to manage and associated with family carer feelings of burden. To date there is little empirical research about family carers experiences of these symptoms and behavioural changes. This exploratory, phenomenological study takes a unique approach to developing new knowledge about eating and appetite in dementia. Ten family carers of a person with dementia participated in in-depth interviews. Interpretative phenomenological analysis was used to develop an understanding from these data of family carers lived experiences of eating and appetite in dementia. Specifically, the study explores meaning of these lived experiences for the family carers themselves, their response to changes in eating behaviour and appetite and their views on or experiences of related resources and support. The present study found that the essence of such lived experiences are that of daily ethical challenges. This encompasses the complex, ethical decision-making around eating, appetite and food which family carers need to make as ability for shared decision-making declines. Personal meaning of food and eating, the need to keep relatives safe in the context of eating and food related tasks, and the powerful influence of health promotion messaging around diet add to the ethical dimension of responding to changes in eating behaviour and appetite. This study found that family carers have little advice or information to support them respond to such changes, with variable understanding of the impact of dementia on these functions identified. Eating behaviour and appetite changes in dementia may impact family carer ability to meet their own needs and those of the person with dementia, with implications for continuation of home care.

More information

Identifiers

ORCID for Emily Ruth Walters: orcid.org/0000-0001-7935-0086

ORCID for Ruth Bartlett: orcid.org/0000-0002-3412-2300

Catalogue record

Export record