How can we best support family carers to care for their relatives at end of life?

Problem

Most care for people with dementia is provided at home by family or friends. Caring for someone with dementia is one of the most demanding caring roles, however few carers make use of sources of support outside the home due to the difficulty of leaving their relative. The aim of the current study was to understand what family carers find challenging towards the end of life and their views of receiving support for their caring role online.

Approach

A qualitative methodology using semi-structured interviews. Current and former older family carers (65 years above) of people with dementia were recruited purposively, sampling those with a variety of internet usage; daily, monthly, and those who did not use the internet. Recruitment monitored for age, gender, ethnicity and education to ensure maximum diversity. Participants were recruited via general practices, supplemented with recruitment from national carer and dementia organisations. Interviews were analysed using thematic analysis.

Findings

Carers discussed several challenges including; understanding and expectations of end-of-life, adapting to a caring role, and a lack of openness. Carers expressed a lack of understanding about what to expect towards the end of life which often reflected a failure to provide information to family carers and or a lack of direction as to where find information. They discussed a need for more information and details around when end-of-life begins, but also more practical issues such as eating and nutrition. This need for information extended beyond the death of their relative and included the process when someone dies including how to prepare a funeral arrangements.Carers expressed difficulties adapting to their caring role highlighting the need for support with many aspects including; managing behaviours which challenge and managing medical decline in a person. Carers reported wanting someone to talk to, either just to listen or to provide reassurance, they felt this contact should be initiated proactively by professionals and not sought out reactively by themselves. In addition carers reported wanting contact with other carers as this provided an opportunity to share similar experiences and discuss more taboo topics such as incontinence. Carers views on support delivered online spanned a spectrum reflecting a diversity of those who used the internet and those who do not. Simplicity was requested in terms of the design and navigation of the website. Videos were viewed positively as opposed to text, they were deemed to be more connected and watching these was likened to the shared experiences in support groups.

Consequences

The internet is seen as a viable option for supporting carers among those over 65 years of age, however it is not beneficial to simply be provided as an information resource and may need interaction with trained professionals.