Exploring the Connection between Dementia and Eating, Drinking and Swallowing Difficulty: Findings from Home-Based Semi-Structured Interviews

Autor/inn/en	O'Neill, Michelle; Duffy, Orla; Henderson, Mo; Davis, Ashleigh; Kernohan, W George
Titel	Exploring the Connection between Dementia and Eating, Drinking and Swallowing Difficulty: Findings from Home-Based Semi-Structured Interviews
Quelle	In: International Journal of Language & Communication Disorders, 58 (2023) 5, S.1738-1751 (14 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (O'Neill, Michelle) ORCID (Duffy, Orla)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1368-2822
DOI	10.1111/1460-6984.12899
Schlagwörter	Dementia; Physical Disabilities; Eating Disorders; Attitudes; Caregivers + Suchen Sie Ihr Suchwort? Demenz; Physical handicap; Körperbehinderung; Appetite disorder; Essstörung; Attitude; Einstellung; Verhalten; Caregiver; Carer; Betreuungsperson; Pfleger
Abstract	Background: Eating, drinking and swallowing (EDS) difficulties are important to identify early. Awareness of EDS changes starts with those living with dementia or their family carers. However, little is known about early identification from the perspective of people with dementia. Aim: The aim of this study was to understand the experience of EDS by people living with dementia in their own home. Methods: Published evidence pertaining to EDS difficulties in dementia was used to inform an online semi-structured interview guide. Four people living with dementia and a third-sector Empowerment Lead were invited to become co-researchers. People living with dementia and their carers were invited to be interviewed. We enquired about their past and present experiences, and future expected changes in EDS, information needs, opinions on early problem identification, and lifestyle modifications following onset of EDS difficulty. Narrative concepts of heroes and villains in their 'stories' were identified. Responses were subjected to framework analysis informed by narrative enquiry. Results: Seven people living with dementia and five family carers were interviewed. The overarching theme was a 'missed connection' between EDS difficulty and dementia. Where EDS difficulties were identified, 'compensatory changes' and a need for 'access to information' were noted. Conclusions: The connection between potential EDS difficulties and a dementia diagnosis may not be made, even though EDS changes were recognised by people living with dementia and their family carers. This may be explained by behaviours that mask problems or allow individuals to cope or compensate. Reduced awareness may also be due to inadequate access to information and lack of specialist services. If the connection between dementia and EDS difficulty is missed it could further delay access to support services. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01