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

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.