With all the press dementia had in 2015 there’s been a sharp rise in awareness of it. It’s clear that it’s a growing problem that’s not going away, with so many of us affected by the condition that we have to become a more dementia-friendly society, and quick.
But what does that actually mean? What can you do at an individual level? And how likely are you to be affected?
Who will be affected by dementia?
Let’s take the last question first, to show the scale of the issue. There are 800,000 people in Britain with dementia, two-thirds of whom are women. In the next ten years that is estimated to increase to a million.
Overall, one in three of the population alive now is expected to develop the illness. With our ageing population, it’s one of the biggest health issues we face.
But it’s not only the elderly; it affects people of working age, too. There are currently around 40,000 middle-aged people with dementia and the number is increasing.
Professor Graham Stokes, global director of dementia care at Bupa, says: “We’re on the cusp of an explosion of the numbers of people with dementia. We’re probably less than ten years away from starting to see a real acceleration in those numbers.”
Conversation is now well under way about building a dementia friendly society, where we’re all aware of how dementia affects people, and we step up to help our neighbours and those around us.
Professor June Andrews is one of the UK’s leading researchers into how life for people with dementia can be improved. She says: “Anything that can be done in the community to make [patients’] lives easier, or their families’, has to be welcomed.”
Professors Stokes and Andrews recently discussed this topic online: see a five-minute summary of their dementia debate for Bupa.
What should a dementia-friendly society look like?
Bupa’s vision is for a dementia-friendly society by 2030, one where the individual is at the centre of their care. This involves six areas: environment and community, technology, the home, care homes, schools and in the workplace. Let’s explore two of those: home and community.
In people’s homes, people with dementia would be supported to live in their own house for longer, supported by access to better services and carers in their home.
That starts with a healthcare system that emphasis earlier diagnosis and intervention, making it more likely that patients are able to continue living at home, and having a higher quality of life for longer.
Once diagnosed, they would have better access to specialist practitioners trained specifically in their unique needs, and those of their family. That would enable not just clinical support but vital emotional care, with professional, personalised care in the home.
In the community, a dementia-friendly society means all of us having an understanding of what it is (and what it isn’t), breaking the stigma around it, and thus giving people with the condition more confidence to go out.
There has to be a dramatic shift in social perception to one where dementia is part of the bigger picture of life in the UK, starting with ways to reduce our risk of dementia through to how we help people with the condition live the best quality of life possible.
That includes, for example, urban design that meets the needs of people living with dementia, creating minimal easy-to-use spaces, and applying the WHO guidelines on age-friendly cities. These set out a framework for managing the dual trends of urbanisation and the increase of over-60s in the world population, in a way that engages cities to tap the potential that older people have.
It’s a picture, in fact, of not just a dementia-friendly society but a dementia-inclusive one – a term that Prof Stokes prefers. He says: “When I hear the term dementia friendly, and the need for training and education to deliver that, I don’t think anybody needs to be trained to be friendly. That’s part of the human condition.”
How can we build informed workplaces?
As the number of people with working-age dementia increases, informed workplaces are crucial. “Five years ago we wouldn’t be talking about the workplace, but now for me, it’s one of the major concerns I have,” says Prof Stokes.
Unlike the elderly, where Alzheimer’s is the main cause of dementia, middle-aged patients can have a host of conditions that cause dementia that aren’t typical, such as alcohol-related dementia or frontotemporal dementia.
The latter is the type most often diagnosed in 45 to 65-year-olds, and affects men and women equally. It’s caused when nerve cells in the frontal and/or temporal lobes of the brain die and the pathways that connect them change. Unlike Alzheimer’s, it tends not to cause problems with day-to-day memory. If you have the behavioural variant, you’re unlikely to be aware of the changes in you, but people around would notice them.
You may behave in socially inappropriate ways such as making tactless comments to someone about their appearance; lacking empathy and showing no interest in people, making you appear selfish and unfeeling; or compulsive behaviour such as repeated phrases and gestures or hoarding things.
“Working-age dementia is effectively the cluster of symptoms caused by a variety of diseases in people younger than we would normally expect, with the additional problem of the complex social picture that’s presented,” says Prof Andrew.
“It’s a complex and unique problem, but far fewer people are affected. Which doesn’t make it a smaller problem. It means for those individuals it’s an even bigger problem.”
In the workplace the onus will be on the employer. Bupa’s vision for how this should work starts with dementia awareness programmes for employers, equipping them them to integrate dementia awareness into the workplace and create environments that can respond to the needs of their staff. This could include:
Encouraging employees to actively reduce their dementia risk by adopting healthy habits at work;
Support for staff diagnosed with dementia to continue working for as long as they can;
Workplace forums to share knowledge, equipping people with the information they need in case they or a relative develop the illness;
Recognising the ‘sandwich generation’ (staff caring both for their children and their parents), being aware of the demands on carers, having the flexibility to help them balance their job with caring, and making the option of teleworking the norm.
Professor Graham Stokes is the global director of Dementia Care at Bupa. He has 20 years’ experience in the subject and a breadth of knowledge on dementia, from choosing a care home to advice for those living with the condition. He advocates the development of a person-centred approach to care.
Professor June Andrews has had a significant impact on healthcare in the UK. She is director of the University of Stirling’s Dementia Services Development Centre and author of the comprehensive book, Dementia: The One-Stop Guide. She has carried out extensive research on ways that life can be improved for people with dementia.