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Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers’ views and experiences in the UK

Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions Findings have demonstrated the importance of planning and supporting carers’ holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.

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Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
John Wiley & Sons
ISBN/ISSN
1360-2322
Publication Year
2020
Issue Number
6 Suppl 2
Journal Titles
Journal of Applied Research in Intellectual Disabilities
Volume Number
33
Start Page
1405
End Page
1417