Why we need a dementia inclusive society

The number of people living with dementia worldwide is expected to reach 76 million by 2030, while the people in their 60s have a one per cent chance of being diagnosed with dementia, those in their 70s have a five per cent chance.

As the population grows, the number of people living with dementia is expected to increase, while the number of people being diagnosed with young onset dementia is steadily on the rise.

In recent years, charities and health and care organisations and the Government have already begun encouraging people to become Dementia Friends and for society to be more dementia friendly.

In a recent webinar organised by Bupa, care and dementia experts came together to discuss how the UK can build a dementia inclusive society.

Speakers included global director of dementia care at Bupa, Professor Graham Stokes, who has more than twenty years of experience on the subject and director of the University of Stirling’s Dementia Services Development Centre, Professor June Andrews, who has previously carried out extensive research into how life can be improved for people living with dementia.

Talking about what people should expect from a dementia friendly society, Professor June Andrews said: “A society is a very large concept, and the number of people affected by dementia is very small, the idea of society where people who are in a minority are looked after properly is a difficult thing to talk about.

“The Prime Minister's Challenge has made a commitment to dementia friendly communities and the idea that people should be more aware of dementia, businesses should be sensitive to the needs of people with dementia and the needs and challenges their carers are presented with.

“A dementia friendly society is one where people are aware of it and help their neighbours, but it also has to be one where the people who set themselves up to look after people with dementia really know what they’re doing and give confidence to the people who receive their services.”

Being friendly is part of the human condition

During the webinar, Professor Graham Stokes stressed that the phrase ‘dementia inclusive’ made more sense than ‘dementia friendly’. He said: “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. I’m far more in favour of using the term ‘dementia inclusive’.

“We can’t have a state of affairs where we say ‘we’re friendly, we’re inclusive’, if we’re not actually doing something that makes the lives of people truly different.”

Both experts discussed issues surrounding ignorance around people with dementia, and that fact that people may want to help but are not equipped with the relevant knowledge to make informed decisions about how to help.

Earlier this year, Alzheimer’s Research UK, launched their #sharetheorange campaign, fronted by award winning actor, Christopher Ecclestone, to confront common misconceptions about dementia. The campaign is one of several projects designed to challenge common perceptions about dementia. Dementia Diaries is one of the latest projects working to challenge perceptions surrounding dementia by producing an archive or audio-diaries to educate and inform the public.

In 2015, the University of Stirling’s Dementia Services Development Centre conducted a year long survey called ‘The Big Ask’. The survey revealed significant differences in the attitudes of men and women about dementia and how those affected should be cared for. Furthermore, survey participants revealed they were concerned about the level of knowledge of health and social care staff, with women saying they were disappointed in the level of knowledge of health and social care staff.

Educating young people to reduce prejudice

Professor Stokes and Professor Andrews suggested a possible solution to changing attitudes to dementia could be to make people aware of dementia and its causes from an earlier age. Young children often have no prejudice or stigma so it has been suggested that educating children in schools could help improve understanding in entire communities.

Professor Stokes said: “It’s possible that we need to wait for the next generation of adults and children who will are participating in the community. Those children do not have a stigma against dementia and as they become adults, may be more accepting of people living with dementia.”

“Anything that can be done in the community to make their lives easier, and to make the lives of their families easier, has to be welcomed,’ said Professor Andrews.

One of the challenges faced by people affected by dementia, is a lack of readily accessible support, often local social services and the Government aren’t able to take action until a situation becomes critical.

’Active, meaningful engagement is fundamental’

The city of York is leading the way in creating dementia inclusive communities. The Dementia Action Alliance was established with support from the Joseph Rowntree Foundation to launch the ‘Dementia Without Walls’ project to make York a better place for people living with dementia. The Dementia Action Alliance was established in 2013 and has nearly 50 members in York alone and is now in action across England.

Speaking about how the project is benefiting the local community, Philly Hare from Dementia Without Walls said: “There is no template, each community must develop its own approach. Active, meaningful engagement of people with dementia and their families is fundamental, and the human rights of people with dementia and carers must be recognised and promoted.”

A dementia informed society is important, not only as the number of people living with dementia is rising at a staggering rate, as people are living longer, people are more increasingly likely to be affected. Dementia informed workplaces are crucial as the number of people of working age increases as does the number of people living with dementia.

Working age dementia is a complex and unique problem

Professor Stokes said: “We’re on the cusp of an explosion of the numbers of people with dementia. Probably less than 10 years away before we start to see a real acceleration in those numbers.

“Around 40,000 middle-aged people have dementia. But they tend to have a host of conditions that cause dementia that aren’t typical – could be alcohol related dementia, could be frontal dementia, not what we find with older people where Alzheimer’s is the main cause.”

Professor Andrews added: “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 and that it’s really hard to get services organised in a way that will help them… 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.”

“People are very fearful of dementia and anything that can be done in the community to make their lives easier, or their families, has to be welcomed.”

While assistive technology is helping to aid understanding, it should not replace human relationships. Technology can improve the lives of people living with dementia, while human relationships help people with dementia to live more fulfilled lives.

To watch the webinar, visit: www.bupa.co.uk/Newsroom/OurViews/dementia-webinar-overview