Everyone knows someone who provides care for an ill or disabled family member or friend. Many might be carers themselves. Indeed, carers are a vital aspect of all social care systems; without them, it is hard to imagine how support services could cope. With a population set to age rapidly over the next few decades, carers will play an even more important role in supporting those in need of care.
Research has shown that many carers do not always recognise themselves as “carers”; rather, they simply provide support on the basis of familial or communal duty. Carers are often “thrown into” the role, when a family member or friend receives a diagnosis of a medical condition. Many carers report feeling ill-prepared to adapt to this challenging role, with most seeking guidance from health and social care professionals and other sources of information and guidance.
The role of caring in the UK has been more “publicised” over the last few decades, largely as a consequence of lobbying activities by groups like Carers UK, all of which has resulted in dedicated government initiatives designed to support carers, as well as a National Carers Strategy. Nevertheless, carers continue to report feeling unprepared for the reality of care provision with all its complex dimensions, including engaging with formal support services, combining care with paid employment, and providing the practical and emotional support ill or disabled people commonly require.
Caring for people with dementia can be particularly challenging, and it is in this context that the Caregiving HOPE project hopes to make valuable contributions to existing knowledge about carers’ feelings of preparedness. Drawing on a large-scale survey approach, along with in-depth interviews, the study will explore the experiences of existing carers, as well as looking at people who might one day become carers.
With this approach, it will be possible to identify useful mechanisms which can play a role in supporting carers to adapt to, and cope with, challenges which arise when supporting someone with dementia. The study’s finding will be synthesised to produce a “good practice” guidebook, drawing on the experiences of existing carers with a view to helping those who might one day find themselves with the same care responsibilities.
If you’re a carer of someone with dementia and wish to learn more about the research, please follow the link below. The study’s website will tell you more about the project and how you can get involved. If you’re not currently a carer but are interested in the study, please feel free to get in touch with us; a later stage of the research will involve people who might one day become a carer and we’d be interested in hearing from you.
Gary Fry, School of Dementia Studies