Dementia: changing the narrative

The Department of Health in England recently published a report called ‘Healthbridge: Evaluation of the National Dementia Strategy’, which examines the value of dementia advisers and peer support networks. Professor Charlotte Clarke, head of Edinburgh University’s School of Health in Social Science, produced the report, which found that dementia advisers and peer support networks supported whole communities, filled a gap in service provision and played an important role in tackling stigma.

Although the report deals with particular things that came out of the English dementia strategy, Clarke points out that the messages have currency across all national strategies:

“What we were able to say was that dementia advisers and peer support networks, in different ways, were able to offer something that people felt they were not necessarily getting elsewhere. They tended to be people drawn from people’s own communities, who had a knowledge of dementia but were not necessarily professionally qualified in terms of being registered nurses or something like that, but who were able to speak the language of people with dementia and their families, became a first contact point, and could signpost them to other services,” she tells Holyrood.

Professor Clarke’s background is in nursing, and she worked clinically with people with dementia after graduating in the 1980s. “I’ve always enjoyed working with older people,” she says, but she became frustrated when offering respite care in long-term general wards or in an acute setting “didn’t meet their needs”.

“I found that I had more questions than I had answers. I just had so many questions about the way that we work with people with dementia. But there didn’t seem to be any answers, so that took me off down the route of starting to do research about what people with dementia themselves actually experienced.”

A lot has changed in 30 years in terms of attitudes and national strategies. There are now about 800,000 people with dementia in the UK, and that number is expected to double by 2040. Last year, there were 322 people under the age of 60 being treated for the illness in Scotland, compared to only 244 in 2009/10.

“Dementia is at the fore of public attention. It was very hidden; no one was very interested then, whereas now it’s very much at the public fore.”

According to Clarke, there are two narratives running in this increased public perception. One is a sense of panic and pessimism that the increase in sufferers is an insurmountable problem, and a more practical narrative which says, “we need to work out a way of actually living with this, and society living with it, not just the individual. That’s a debate that plays through all older people, not just dementia.”

An ageing population and increased awareness of mental health have contributed to the rise, admits Clarke, as well as a big push to diagnose earlier. However, the situation is not restricted to the UK. Many countries now have national dementia strategies, and the G8 is to hold a dementia summit in London in December.

“Dementia is an issue that is very global, it cuts across socio-economic status, it cuts across country, across culture and things, and everywhere is experiencing massive rises in the number of people with dementia,” Clarke says, pointing out that she has recently returned from South Korea where she was speaking at the International Psychogeriatric Association conference.

The Korean culture of respect for older people and “stronger models of care within the family” is under pressure from rapid economic growth and changes to their social structure, according to Clarke: “Within a generation, they’re compressing what we’ve done over a couple of generations, in terms of women working and not being so available to care for older people.”

In the UK, peer support and dementia advisers are keys to tackling these kinds of pressures, according to the Healthbridge report.

Clarke says: “What these services were also doing was very much enabling people to get together, learn from each other, offer support to each other. It was doing things like that that enabled people to find that they still had something to offer in life, because with a diagnosis of dementia a lot of things get taken away from people, not least because the dominant social societal understanding is that you become incompetent at making your own decisions. Mostly, people with dementia experience feeling excluded from society, being marginalised. In a way, the peer support networks and the dementia advisers actually allowed them to reclaim some of that, some of that purpose, some of that meaning, some of that sense of social connectedness.”

Clarke points to the Scottish Dementia Working Group as an exemplar. The national campaigning group is run by people with dementia, and according to Clarke, they are “unique” in the UK.

“They’re a fantastic example of a group of people with dementia who have worked together for some time, different membership coming and going. It’s an advocacy group, it’s a political pressure group,” she says.

The services evaluated in the Healthbridge report exist in challenging times. They were set up at a time of global recession, and about a third of the services could not  be maintained beyond the first year.

“It’s important to recognise that that’s probably as much to do with the public sector cutbacks and the recession as anything whatsoever to do with whether the services were effective,” Clarke says, explaining that “unexpected influences” is one of the real challenges of policy evaluation.

Despite huge savings being made in public services across the UK, Prime Minister David Cameron has talked firmly about the disease. He told the Alzheimer’s Society that dementia was one of the great challenges of our time. “We need an all-out fight-back against this disease; one that cuts across society,” he said.

Clarke feels the language is dramatic, but she sees examples of communities becoming more literate in the disease: “In some parts of the country, quite a lot of the country now, you’ll find bus drivers are getting education about how to support people with dementia, and the post office, things like that.”

Because “dementia is a socially experienced disease”, she feels it should be tackled on all fronts. “One aspect of the data we collected in the Healthbridge evaluation when we asked people about what made a big difference to their quality of life, they also talked about ‘well, actually, I feel a bit out of control of what’s going on around me’, or ‘actually, my house and my garden’s not as well maintained as I’d like it to be, and I’m sad about that.’ These are things that don’t necessarily fall into healthcare in its tightest definition. Scotland’s quite advantaged because of it being a bit further on than England around the health and social care integration agenda.”

Given her experience as a practising nurse and her research into both social services and the third sector, Clarke is well placed to comment on the integration of services.

“The way I bring things together when I work with a lot of organisations and in partnerships, it’s trying to get that value base right. That’s why you’re getting the third sector coming to the fore a bit, because they can be quite value driven,” although where third sector organisations can ‘jostle’ with each other, the health service can balance that with a level of homogeneity, she says.

She also welcomes the Scottish Government’s 2020 vision long-term action plan, and the emphasis on a human rights approach. “I’ve looked at risk management of people with dementia, and it’s about balancing physical safety with undue compromise of people’s human rights, and I think Scotland’s policy around dementia is really well positioned around that, because it starts off with a human rights statement. It starts off saying people have their own rights to independence, to informing their own services, making decisions about their lives, and that’s a fantastic starting point.”

The School of Health in Social Science at Edinburgh enjoys a good relationship with Alzheimer’s Scotland, which funds two student places on their online Masters in Dementia course, and part-funds a new research career development pathway in dementia care. A PhD student and a postdoctoral fellow will focus on risk management and maximising resilience on discharge from secondary care. The Alzheimer’s Scotland postdoctoral fellowship is due to start in January and the person appointed will work part time on research and part time as a practitioner with NHS Lothian.

Alzheimer’s Scotland also recently supported the school in producing a play with Tyneside company Skimstone Arts called ‘Jack and Jill and the Red Post Box’, which used real transcripts from Clarke’s research interviews about living with dementia and resilience:

“We go into an interview and ask certain questions, people present a story to us, we take those transcripts, work with a theatre group, who then interpret it. That then becomes a performance. The audience then interpret it their own way, so you get these multiple cycles of presentation and interpretation. From a research point of view, it’s very interesting to see that. I don’t believe that knowledge is simply ‘here it is, take it and do something with it.’ You make of it what you will. You recast it and reconfigure it.”