Supporting people with an intellectual disability and dementia: a constructivist grounded theory study exploring care providers’ views and experiences

Abstract

Background
A growing field of research illustrates that carers often lack the necessary training and knowledge to provide the best care and support for people with an intellectual disability and dementia. Less research has explored carers’ support needs, and the role of support structures and strategies to support carers in their role.
One recommended framework for planning and delivering support and services is the Dementia Care Pathway (DCP). Though widely implemented, little empirical evidence has explored the role of DCPs in the care and support of carers and people with an intellectual disability. This thesis aimed to provide an understanding of the experiences of carers, and to critically explore DCPs and other support structures within those experiences.
Methods
This study implemented a Constructivist Grounded Theory (CGT) methodology. Data were obtained through 23 semi-structured interviews with two family carers, eight paid carers, and eight healthcare professionals.
Findings
The CGT produced five interrelated categories (Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity, and Continuum of Understanding), which explained the multiple forms of burden experienced by carers, and the factors that alleviated or compounded this burden. Social support alleviated the impact of the dementia on the carer; however, the difference in the level and type of support between paid and family carers influenced the level of burden they experienced, their ability to apply person-centred dementia care and ability to provide a dementia-friendly environment. The DCP acted as a framework that influenced the timing of dementia care planning and delivery of support, and alleviated the impact of the dementia on paid carers by supporting the development of dementia capable carers.
Conclusion
Overall, this study demonstrates the importance of planning for and supporting carers’ holistic needs alongside the people they are supporting. DCPs offer a framework that can alleviate the impact of the dementia through timely post-diagnostic planning and support. Implications for supporting carers and DCP development are discussed.