Discussing dementia: building an inclusive society

03 November 2015

We recently hosted a webinar about dementia and how the UK can gain a better understanding of the condition. With speakers Professor Graham Stokes (Global Director of Dementia Care at Bupa) and Professor June Andrews (Director of the University of Stirling’s Dementia Services Development Centre, and writer of Dementia: The One-Stop Guide) giving plenty of useful, thought-provoking insights, the webinar was a great success.

Watch it in full here:

We’ve also gathered a few highlights from each of the webinar's three sections to share here. Please do watch the whole webinar to draw your own conclusions, and don’t forget to share your thoughts with us on Twitter or Facebook, using the #BupaDementiaVision hashtag.

Part 1: Building a dementia inclusive society

Professor Stokes was keen to point out at the start of the webinar that the term ‘dementia inclusive’ makes 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’.” Which was certainly an interesting point to start the webinar with.

The experts also discussed the fact that there is still a lot of ignorance around dementia. People may want to help, but often simply don't have the knowledge to do so. One potential solution would be to start explaining dementia to people at an earlier age. Young children have no prejudices or stigma, so concentrating on education in schools could help improve understanding within communities. 

There also needs to be practical change; as Professor Stokes explained, “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.” 

And these changes are certainly needed. ‘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 challenge is that the required support isn’t always readily available, as often the government and social services won’t step in until the issue becomes critical. Could this be an area that needs to change? As Professor Stokes put it, “I’m quite comfortable with society stepping forward, as long as that society is supported.”  

Part 2: What is working age dementia?

Professor Andrews explained that working age dementia affects people who are still holding down a job and may have young children and other responsibilities. Their needs are very different to those of the people who most often use dementia services, primarily women aged 80 or over. 

Better education in the workplace is key. “Five years ago we wouldn’t be talking about the workplace, but now for me, it’s one of the major concerns I have,” said Professor Stokes. Many people who work in big companies and live in cities and large towns have more contact with their colleagues than their neighbours, so by educating their employers and co-workers, we can give those living with dementia the support and encouragement they need to continue pursuing a career, rather than immediately treating them as though they have an incapacitating disability.

Of course, employers will need plenty of support themselves, and some prejudice still exists. “Having a dementia-informed workplace is critical,” said Stokes, as informed workers mean less stigma. If someone is living with dementia but they work in a well-informed environment, they won’t need to worry about speaking to their boss; instead, they can work together to adjust their working hours and location (e.g., working from home may be easier for some) to improve their quality of life.

Part 3: Consumer technology and dementia

Technology can help in two ways when it comes to dementia: by assisting those living with it every day, and by helping with research. We need to ask: What does the person living with dementia most need help with? And how can technology assist? 

Many people assume they understand the kind of help a person living with dementia needs, but that’s often not the case. For example, Professor Andrews discussed a study from the University of Leeds which revealed most people think of dementia as a memory problem. However, both carers and those living with dementia divulged that memory isn’t the only issue; agitation, anxiety and sleeplessness are also symptoms. This lack of awareness could mean less useful kinds of technology are developed.

As Professor Andrews observed, “The range of assistive technology that is available is vast, and we should all find out as much about it as possible.” Charity-run sites such as AT include information about assistive technology, dividing it into categories based on what it can help with. 

For instance, one of the biggest fears of their friends and family is that a person living with dementia will get lost, but there is some exceptional, unobtrusive assistive technology that can help ease this particular worry. Of course, the use of chips and tracking devices do raise certain questions; as Professor Andrews pointed out, “Assistive technology has a huge role, but we have to make sure the ethics around it are attended to.”

The specific purpose of the technology must also be considered; as Professor Stokes added, “What I would never want to hear is that we are using technology to replace human relationships. Technology is going to be a means to improve the life of those living with dementia. Human relationships help people with dementia live better. It’s just another tool.” 

If you’d like to find out more, our website includes a breadth of information about dementia, including nutritional advice and healthy eating tips for those living with the condition.

Dementia webinar: the Q&A

Here is a small selection of answers from the Q&A session held at the end of the webinar:

What can colleagues do to make life easier in the workplace for those living and working with dementia?

Answered by Professor Andrews:

“First of all, know and understand as much about dementia as you possibly can, and understand that everyone with dementia is different. So even though you may know a lot about dementia, the way it’s affecting them might be quite unique. 

“The second thing is to make sure that, if that person has confided in you about their dementia, and the same is true if it’s a carer that’s confided in you, make sure they know about [the] many sources of support [that] exist. […] Do a bit of homework for them. They’ll be tired and busy, so provide recommended reading for them and other things that might help. 

“In some cases, they just want you to be understanding about why they’re being slow but don’t want you to get involved. 

“In summary, what I would say is, […] the more you know about dementia, the more you’ll be able to help.”

What is the biggest challenge in helping those living with dementia in the workplace?

Answered by Professor Stokes: 

“There’s still so much ignorance, stigma and prejudice around that needs to be challenged. Before we do anything, we need to make sure we truly do have dementia awareness and dementia informed workplaces. Workplaces are a unique place to tackle dementia. With almost half of the world’s population in employment and people staying in work for longer than ever before, employers have a responsibility to act as they have the potential to make a huge difference. They can support people living with dementia and their carers, and also encourage healthy lifestyle changes which may reduce the risk of dementia.”

“If people are in that culture, that’s a major step forward. People need to be compassionate, so in everyday reality that means being kind and respecting that person for who they are and what they are living through. I think even today, and I’ve worked in the field of dementia for so many years, I can barely imagine what it must be like to experience dementia, progressing from knowing to not knowing, into a world that means little as it is rendered increasingly unfamiliar.”

What about getting service providers like supermarkets to take action? Is that where the Equalities Act could help?

Answered by Professor Stokes:

“To move from words to action there is a need to nudge retailers, transport companies and utility providers to deliver on their dementia inclusive commitments. This could result in recourse to Equalities and Disability legislation, but the UK Government’s ambition is that by 2020, there will be agreed standards developed by the Alzheimer’s Society working with the British Standards Institute which dementia-friendly communities and service providers will have to adhere to in order to be accredited.”

When it comes to technology, keeping the interface clear and uncluttered can make a big difference to all of us, including people with dementia. Thinking about the needs of people with dementia can help us design more accessible and inclusive products, communities and societies for everyone. Do you agree?

Answered by Professor Stokes:

“It is undeniable that technology and more user-friendly products that benefit people with dementia will have benefits for all who are facing the complexity of engaging with companies and their systems and products. As an example, many of the design features we introduce into Bupa’s dementia care homes to support wayfinding and decision-making have similar benefits when also introduced into homes for our aged residents who are frail and dependent.”

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