Exploring the lived experiences and care challenges of formal paid caregivers for people with intellectual disability and dementia

Author:

Acton Daniel James12ORCID,Jaydeokar Sujeet12,Taylor Ruth2ORCID,Jones Steven2

Affiliation:

1. Cheshire and Wirral Partnership NHS Foundation Trust - Centre for Autism Neurodevelopmental Disorders and Intellectual Disability (CANDDID), UK

2. University of Chester, UK

Abstract

A greater number of people with intellectual disability are living into older age and are at increased risk of developing conditions such as dementia. Caring for a person with dementia presents several challenges for formal caregivers due to the progressive nature of the disease. An interpretive phenomenological analysis was used to understand the lived experiences of a purposive sample of formal caregivers in caring for people with intellectual disability and dementia. Discussions from 14 individual interviews generated data were analysed. Four key super-ordinate themes emerged which were: (1) recognising early indicators and diagnosis, (2) post diagnostic support, (3) coping with change and (4) need for future development. Themes reflected the experiences, barriers to dementia diagnosis and provide a valuable insight into the challenges faced by formal caregivers in providing aged care services.

Publisher

SAGE Publications

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