* Other episodes of Friends are available 🙂
Last year we looked at respite options for people with dementia to feed into a report for the Older People’s Commissioner for Wales. Here we reflect on what we found and consider some of the key points, especially around the idea of respite being a joint activity for both the person with dementia and the carer.
What is respite?
The Oxford English Dictionary defines ‘respite’ as being a short period of rest or relief from something difficult or unpleasant. The traditional view of respite is that it gives the carer a break from caring. The person with dementia goes somewhere, such as a day centre or a care home for an overnight stay. It is often accessed as a last resort when the carer reaches crisis point, and as such can have negative connotations. Many people feel that it suggests that caring is a burden and the carer is failing if they need respite. It can also make the carer feel guilty, especially if the respite has a negative effect on the person with dementia, for example the disruption of staying in a different place. The focus tends to be on helping the carer, and the outcomes for the person with dementia can often be overlooked.
Respite has the potential to be a lot more beneficial than the traditional view suggests and the benefit could be for the person with dementia, the carer, or both the person with dementia and carer together. There are many good examples of where it does offer more, for example by providing opportunities for both the person with dementia and the carer to engage in meaningful occupation, learn new skills, remain socially active, and rebuild relationships and to form new ones.
What could respite look like?
Respite should be easy to find out about and access; it’s no good if people don’t know it is available or have to wait weeks or months to actually make use of it. Trying to access respite shouldn’t feel like a battle!
A range of options should be offered to suit people’s needs at different times and different preferences – not everyone likes the same thing, and what suits a person in their 80’s might not be right for someone in their 60’s. They should also consider the needs of both the person with dementia and the carer, and provide opportunities to do things together or separately.
Respite should aim to keep people mobile, active, stimulated and help to maintain social contact to reduce the risk of becoming isolated. It should be meaningful for those involved, helping them to feel valued and like they are making a contribution.
People providing respite should also be open-minded rather than risk averse, considering how they can enable people to do things safely rather than automatically ruling it out because they think it is too difficult or dangerous. This could include opportunities to do things outdoors, not just indoors, to help people engage with nature.
Why is it good to access respite together?
While having time apart is certainly beneficial for some people, there is definitely something to be said for the person with dementia and carer accessing respite together. It would enable them to maintain or develop new shared interests, helping them to reconnect and have a relationship that is not based on caring. It would provide a different focus, letting them see each other in a different context and have ‘ordinary’ lives for a while, the respite being not from each other but from the challenges and constraints that a diagnosis of dementia may bring.
A more proactive approach towards respite could build it into the dementia journey earlier and more regularly, potentially helping to delay or prevent crisis situations. It could address negative connotations and inequality by helping to shape it for the benefit of both the person of dementia and the carer individually and together. So the next time you hear someone saying, ‘We were on a break,’ it may well be they weren’t on their own.
(The work around respite was carried out by Shirley Evans and Jennifer Bray)