‘Give people with dementia more freedom to organize their own social lives’

Older people with memory problems who live at home are extraordinarily resourceful when it comes to staying in control of their activities outside the home. Demographers Jodi Sturge and Mirjam Klaassens are certainly impressed. ‘It’s not about whether these people can do more than we think, but rather they can do more than we allow them to. The stigma of dementia is their biggest problem.’

Text: Riepko Buikema, photographs: Elmer Spaargaren

During the video interview with Jodi Sturge, the connection drops several times. Every time we are back online, we have to start over. Where were we? What was the last thing you heard? The interview inadvertently becomes symbolic of the elderly people she studies – people living at home who suffer from memory problems.

However, the Canadian-born researcher’s (43) message is clear. When she started her PhD research in Groningen, she struggled. ‘Most of the scientific literature on people with dementia is depressing. It’s basically: you get the diagnosis and your life is over. It’s madness.’

Lift up

Her current position is a world away from her previous job as a successful manager in the care sector. In Vancouver she watched over two thousand vulnerable people: the homeless, addicts, people with psychological problems, the elderly. ‘The groups that society often ignores.’ But there was always a glimmer of hope that things would get better, Sturge says, gesticulating energetically, as if she still wanted to embrace and lift up her former clients. ‘We searched for the right housing, the right prescription, the right doctor or the right shelter. It didn’t have to be perfect, but I helped people.’

Not a lost cause

Discovering the work of emeritus professor Myrra Vernooij-Dassen of RadboudUMC changed everything. On her houseboat, Sturge struggles to find enough superlatives.‘Her work focuses on what people can do, on their abilities.Memory problems are not a lost cause. If older people are socially active, their situation can stabilize or even improve. It was so inspiring. Later on, when I’m older, I want to be like Myrra. She rekindled the fire in me.’

Giving a voice

She is able to pursue that passion as part of the international COORDINATEs project, which aims to gain more insights into how elderly people living at home with memory problems and dementia participate in society. What can these elderly people still do outside the home? Where do they go, what do they participate in? Who do they meet? Sturge and colleagues studied a small group of participants using GPS trackers, walking interviews and in-depth conversations.

One of those colleagues is Mirjam Klaassens (41): ‘Previously, people with dementia were often not involved in the research. Researchers tended to talk to informal caregivers, relatives or carers. We focus on the strength of older people themselves, on their strategies for coping with memory problems. We give that group a voice.’

Control

It’s certainly an exciting project. What do interviews like this reveal, especially if the memory problems are at more advanced stage? Sturge: ‘I want to treat our participants like everyone else. If it doesn’t work out, no problem. Then we stop. It gives them a say and puts them in control.’ Eleven elderly people participated in all the research methods. ‘It worked out very well, we really built a relationship,’ says Klaassens. ‘There was a lot of variety in the memory impairments. It was great to see how everyone has their own strategy for dealing with limitations. For example, choosing a route with a traffic light instead of a busy roundabout so that they can continue to take part in things.’

Needless to say, I also had my own prejudices about elderly people, says Sturge. ‘I was really touched by the willpower of our participants. By their sense of humour and enthusiasm. When the weather was bad, we tentatively suggested that we should stay inside. But they said: “What are you talking about? Of course we’re going for a walk!”

Strength

This resulted in the two researchers’ main recommendation: focus on what elderly people with memory problems can do, don’t coddle them. Klaassens: ‘Look at the strengths and capabilities of the individual person. Continued participation in society slows down the decline. If you stimulate physical and social participation right from the start, people can continue to live at home for longer.’

Yes, that can be difficult for family or informal caregivers. Their much-loved elderly relative might lose their way. It takes courage to let them go. ‘But that independence can give so much self-confidence. Our participants said, “I can do it - and if I get lost, I’ll ask someone.” And that is another way to connect with someone.’

Dementia friendly

Sturge, Klaassens and colleagues’ research shows that the participants mainly engage in social activities independently in their immediate living environment. Their findings can therefore contribute to the dementia-friendly design of public spaces and care centres. Sturge even has a part-time appointment at an architectural firm where she reviews care concepts from this perspective.

Social health

‘I have spent my entire career looking for ways to improve practice through my research.The most practical change I hope to achieve is that, from now on, doctors ask about a patient’s social health every time they see them. What do you do to feel engaged in society? What positive encounters do you have in your day-to-day life? I have seen how important it is to reflect with older people on what they did during the week. In my dissertation, I really want to highlight what people with memory problems are able to do.’

More information

The COORDINATEs project is funded by the Joint Programming Initiative More Years, Better Lives, of which ZonMw is the Dutch partner. Louise Meijering, professor of Health Geography at the Population Research Centre of the Faculty of Spatial Sciences, is the principal investigator of the Dutch part of the research project. The project is an international collaboration with Université Laval and the University of Alberta in Canada, Dalarna University in Sweden and technology company Greybox.