How can we best support family carers to care for their relative with dementia at the end of life?

Problem

As the population ages there are increasing numbers of people living with dementia. At present there is no treatment that can alter the course of dementia, making end of life care one of the major priorities in dementia care.

Most people with dementia are cared for at home by family or friends. Caring for a relative with dementia is one of the most stressful and difficult forms of caring, and caring in the end stages of dementia can be even more challenging.

An estimate of just 10% of carers make use of sources of support outside the home due to the difficulty of leaving their relative or finding suitable care. There is evidence that Internet-based interventions have the potential to improve carer well-being and could address this problem as they are accessible from the carer’s own home.

However, there is little evidence on the content that carers require from such an intervention, particularly regarding end of life care in dementia. Little is also known on how we should design and format Internet-based interventions to make them accessible for carers, particularly older carers.

Approach

The study will involve three phases. In phase one we will undertake a scoping review of the literature on digital/internet-based interventions for family carers in all conditions, to understand in more detail existing support interventions.

The second phase will consist of a qualitative study. Semi-structured interviews with 15-20 older carers providing care for someone with dementia at home at the end of life will be conducted. Purposive sampling will be used to recruit carers with a broad range of Internet experience. These interviews will determine the optimal format, content and design of an intervention to provide support for family carers in caring for someone with dementia at home at the end of life.

In the final stage the information from the scoping review and interviews will be synthesised to develop a prototype, consisting of a website homepage, together with ideas for content and design. A research development group of health and social care practitioners together with family carers will be formed. The prototype will be presented to the group and, using co-design methods, we will seek their experience and expertise to refine the content and delivery. The intervention will then undergo first line user testing with focus groups of family carers to assess the acceptability and content, using nominal group techniques.

Findings

The study is underway so there are no findings to report.

Consequences

The research will provide important information to inform the development of future digital interventions accessible for older people and those with a broad range of previous Internet experience. The study will also develop a new and innovative approach to support carers of people with dementia.