Abstract
Aim
To understand the experiences of informal carers’ of individuals with dementia in the UK when engaging with services for support in their caring role.
Methods
Following the PRISMA guidelines, a qualitative systematic literature review was carried out. Six internet databases were searched. Results were screened and eligible studies were appraised using Critical Appraisal Skills Programme (CASP, 2019) and data synthesised using Evan & Pearson (2001) and Evans (2002).
Results
The search returned 231 records, 11 were selected for critical appraisal and data synthesis. Four main themes (information for carers, process of diagnosing dementia, difficulties accessing support, and cultural differences of experiences of services) were extracted.
Discussion
Carers experience services as providing inadequate support for the Person with Dementia (PwD) and themselves for support relating to dementia. Difficulties in receiving information and support were experienced from before diagnosis to End of Life (EoL) care. Additionally, cultural differences were found in carers’ experiences.
Implications for practice
The provision of and access to dementia support should be improved; more information for carers about dementia and dementia services is needed; cultural differences need to be appreciated in the support and information offered.
Relevance
Informal dementia care is essential to supporting an overstretched health service but the level of care an individual can offer is reliant on the support they receive. This paper reviews contemporary research exploring carers’ experiences with services when seeking dementia support.