Accessible summary
What is known on the subject?
Dementia affects an increasing number of people and a person with dementia requires significant levels of care.
Dementia care is often delivered by family members.
Caring for someone with dementia places significant demand on the carer and support for the carer is often needed.
What the paper adds to existing knowledge?
Research has been conducted into caregivers’ experiences of caring for someone with dementia, but a synthesis of findings for studies from the UK is needed to collate the research evidence and provide an account of the common trends within the existing research.
This paper adds to existing knowledge by highlighting the key difficulties experienced by carers of a person with dementia in their caring role and their experiences with support services across the existing research evidence.
What are the implications for practice?
Improvements to the process of dementia assessment and the process of receiving a dementia diagnosis are needed.
Information and support needs to be more accessible for the carer of a person with dementia
Cultural differences need to be acknowledged in the support and information offered to carers of a person with dementia.
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 synthesized 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.