Dementia research is often split into care vs cure. I have often attended conferences in the past where there was a clear divide between both and one was considered more important than the other. Looking at the numbers – 850,000 people with dementia in the UK alone, and 50 million estimated worldwide, we clearly need to support those already living with the condition, and their caregivers, whilst simultaneously trying to find the holy grail in dementia, aka The Cure.
Recently, a Dementia Taskforce was set up by the Alzheimer’s Society to highlight the priorities in research into prevention, diagnosis, and intervention as well as dementia care. As they highlight, there are still so many streams of research (both care and cure) to focus on. My research focuses on the care side. That is, in particular, looking at people with dementia can live independently for longer, preferably in their own home. Because the home environment is where everyone feels more comfortable, wanting to delay moving into a care home for as long as possible.
So how can we do that? One way is to do a bit of detective work and truly understand where people with dementia experience problems in doing daily activities, such as making a cup of tea or enjoying social activities. But it’s not all about difficulties. Most research looks only at where people struggle doing a task. What’s more important however is where people are still ABLE to do a task, or even individual steps of a task. So, for example, someone with dementia may struggle dealing with bills, but can still count change at the till in the supermarket. This is something I have looked at as part of my PhD, and found that people with dementia are able to do certain steps of activities, but not others. Or some people with dementia may be better initiating an activity, but when it comes to performing the actual activity, they struggle.
Or people with certain subtypes of dementia are better at performing everyday tasks than other subtypes. If you are unfamiliar with all those subtypes, take a little look at this great graphic by Kate Swaffer (living with dementia herself if you haven’t come across her amazing social media presence yet):
We found for example that people with Alzheimer’s dementia are slightly better at performing finance tasks than people with Lewy Body dementia. For this we looked at nearly 10,000 cases of people with dementia, and besides finding that different dementia subtypes have different abilities, we also showed that motor functioning and cognition both contribute to finance management abilities. That’s obviously particularly relevant in Lewy Body dementia, with people experiencing a great deal of motor symptoms.
So how can this knowledge benefit people with dementia, and their caregivers, in real life? If we know that people with dementia are able to initiate, or perform, (an important distinction! also see: Hierarchical Decline of the Initiative and Performance of Complex Activities of Daily Living in Dementia), certain bits of a task, we need to support them continue doing those activities. It’s just like your muscles. If you don’t regularly go for a run, or swim (or [insert here your favourite exercise]), then those muscles will not be as strong. Same with making a hot drink or preparing a meal. If people with dementia stop doing these activities, and are not supported in doing them themselves, then they will forget them much sooner. It’s all about doing things WITH the person, and not FOR them (also see: ‘Doing with …’ rather than ‘doing for …’ older adults: rationale and content of the ‘Stay Active at Home’ programme).
But that’s just a little step into prolonging independence. We need more research understanding exactly what people remain able to do. However, we need to bear in mind that the knowledge that’s already out there also needs to be implemented into practice. Implementation, the bit past evidence gathering that can take a long time to get to, is crucial. Because what’s the benefit of having all this knowledge but then not applied this to the real world?
Clarissa Giebel is a Research Manager at the University of Liverpool and NIHR CLAHRC North West Coast. She has been working in dementia care research for over 7 years focussing her research on on helping people with dementia live at home independently for longer.
You can follow Clarissa on Twitter Follow @ClarissaGiebel