The One Where Ross And Rachel Take A Break*: a fresh look at respite

* 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.

Missed opportunities

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.

And finally

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)

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Lights, Camera, Action! – Alzheimer’s Society funding for a Namaste Care Intervention UK film

Some of you may already know about the research we are currently undertaking here at the Association for Dementia Studies (ADS) called ‘Namaste Care Intervention UK’, a 3-year implementation grant funded by the Alzheimer’s Society.

We have been working with a number of care homes across the UK to help them implement Namaste Care in their homes, and in return they’ve collected lots of data about how Namaste Care has been received by residents, staff and relatives and the impact it has had. We have finally finished collecting all of the data we need and are now sifting through and beginning to analyse it back in the research office. In the eyes of a researcher – this is seriously exciting times!

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Pioneer Workshops – Helping you find out more about Meeting Centres

Here at the Association for Dementia Studies we’ve been involved in the development of Meeting Centres for a number of years now, and since September 2018 we’ve been working on a new project to help local communities across the UK to set up Meeting Centres in their areas.

Can you just remind me what a Meeting Centre is?

No problem. Meeting Centres are an innovative way of supporting people with mild to moderate dementia and their families through an evidence-based, person-centred approach and offer an enjoyable, flexible and adaptive programme of activities and support. They are a great low-cost community-based way of supporting people living with dementia and their families that have been successfully implemented in the Netherlands for over ten years and in the UK for over three years.

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Looking into how community groups and schemes can be sustainable, with SCI-Dem

With 2019 now well underway, so is a new project for ADS: SCI-Dem – Sustainable Community Interventions for People Living with Dementia, an 18-month review looking at the nuts and bolts of how various community groups and schemes to support people with dementia can be run successfully and sustainably. Research Associate Thomas Morton explains:

Personally, this January, it has very much been a case of “new year, new me”. No, I haven’t taken up yoga or given up smoking, I did that in 2016 (the quitting smoking, not the yoga), but I have started work on a fresh project for ADS, having only joined the department just before Christmas, to do just that. Senior Research Fellow Teresa Atkinson and I are in the process of firming up and nailing down a plan of action for what is known as a ‘realist review’ (a specific method for scouring all the data out there on particular topic), in order to develop what is called a ‘programme theory’ (a kind of broad model of how things can work under different circumstances).

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Exploring the connection between body and mind in dementia care – the psychological aspects of movement

One of the underlying elements within Meeting Centres is the intention to provide movement-based activity sessions using the principles of psychomotor therapy. However, many people are unsure what psychomotor therapy actually is and what it means in practice. This blog post by Nicola Jacobson-Wright will hopefully help you understand a bit more about psychomotor therapy and why we feel it is important in the context of dementia.

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A Dementia Friendly Community in Action

Happy New Year! As a lovely way to start 2019, we wanted to let you know about a wonderful story that’s come to our attention. One of our Senior Lecturers, Isabelle Latham, tells us more:

We hear a lot about ‘Dementia Friendly Communities’ nowadays, ever since the Prime Minister’s Challenge first introduced the idea back in 2012.  In the UK, local councils have had guidelines since 2015 on how to make local communities more dementia friendly and the Alzheimer’s Society have led the way in raising awareness of the changes that need to happen, particularly through the ‘Dementia Friends’ initiative.

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The Citizenship and Dementia International Research Network – 2018 meeting in Berlin

Chris Russell, one of the ADS PhD students, recently travelled to Berlin to participate in the Citizenship and Dementia International Research Network Meeting of 2018. Here he reflects on his trip and provides his personal thoughts on the future.

Citizenship is a complex and diverse phenomenon. At heart it is about how society operates, in particular how individuals within society contribute to its function, and draw rights and protections as a result. It has always appealed to me because citizenship necessitates questioning unfairness and oppression, whilst at the same time exploring how opportunity can be promoted. People with dementia are facing constant injustices, and it is thus unsurprising and essential that notions of citizenship are applied in this context. Understanding has been refined and developed over the last few years with social citizenship emerging as particularly relevant, because it relates to the active participation by people with dementia in their own lives and wider community. Social citizenship is a lens through which I am viewing my PhD study, which explores how people with dementia engage in physical activity and sports post diagnosis, and how this influences their sense of them self.

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