By Noelle Williamson

As Rachael Kelley of the Leeds Beckett Centre for Dementia Research explained earlier this week, the Lived Experience Group aims to improve the advice and support offered to people living with dementia so they can be cared for in their own homes.

Rachael explained that, if you develop dementia, the longer you can remain in personal,
familiar surroundings, with the physical reminders of your lifestyle and history around you,
the longer you will stay grounded, slowing the progress of your disease.

On its website, the Centre for Dementia Research declares that it is “responding to a national and international health priority”.

To put this in a local context, The State of Ageing in Leeds (2021) report … shows that
around one in three people living in Leeds is aged 50 and above. We have a growing older
population where in the next twenty years the number of people aged 80 and above living
in the city will increase by 50%.

Being in that age group myself, over 50 and hopefully heading for 70-80+ in the timeframe, it was good to read about our City Council’s six objectives, including Healthy and Independent Ageing, and that it is invested in improving quality of life for me and my peers.

If you’ve read this far, I expect you’re one of them. Enjoy your bedtime reading.
Leeds became an age friendly city in 2014, and is recognised by the Alzheimer’s Society as a city which is working to become Dementia Friendly in the areas of arts, culture, leisure and recreation; businesses and shops; and housing.

Leeds Older People’s Forum is a network of third sector organisations working – in partnership with the City Council – towards ensuring that older people have the opportunities, choices and support we need to live the life we want.

Leeds Older People’s Forum actively encourages us to get involved; to have a say in policy
and practice at city, regional and national level.

Locally, it has been working to help businesses and organisations across Leeds become Age
and Dementia Friendly. Nationally, Age Friendly Leeds/Leeds Older People’s Forum provided
evidence in April to the cross-party Work and Pensions Committee’s Pensioner Poverty
Inquiry.

Two of the subjects they reported on were the often-overlooked needs of unpaid carers, and the health impacts of poverty. To learn more, and perhaps to get involved, click here.

My conclusions

This series has focused primarily on memory cafés in West Leeds, the people who set them
up, and the volunteers who keep them going.

We’ve touched on the amazing range of dementia-friendly activities offered through MHA,
BEA and OWLS.

We have also included links to international organisations and smaller, newer, more
specialist bodies; and to local health and memory services.

Lastly, there are the links to Leeds Older People’s Forum and the Leeds Beckett Lived Experience Group, because, even if life gives you dementia, or recasts you as ‘the carer’, it’s still your life, and with the support now available, you can defy dementia, live well for longer, and even use your experience to advance research and influence policy at local and national level.

The strange fact remains that all the information in these articles is taken from (more-or-
less) easily accessible sources.

To quote from the very first article: “No-one ordinarily talks about memory problems and dementia… Unfortunately, it means that if … a parent or partner is diagnosed with dementia, we have no idea what to do or how to get help.”

It’s now 23 years since Peter Smith’s mother was diagnosed with dementia. Jean’s husband
must have received his diagnosis only three or four years later. They all had to make it up as they went along, in isolation, for a good ten years.

Both Peter and Jean, then swung into action to plug the gap in Rothwell and Drighlington, and established a template for other memory cafés. Yet all this time later, with all the resources we now have, and the years of effort to raise public awareness, people still feel that they’re on their own when they’re diagnosed with dementia.

Perhaps we don’t consciously ignore the campaigns and information, in an adult version of a four-year-old’s “If I close my eyes, it won’t get me.”

Perhaps we instinctively turn away from literature with the forget-me-not logo on it, because our instinct calls it irrelevant – the adult version of adolescent immortality.

Perhaps it’s even stronger and faster: there’s some primitive survival reflex that identifies the very concept of dementia as debilitating, and consigns it the incinerator chute, bypassing even our short-term memory. That’s one hideous kind of irony.

Whatever the reason, adults seem to blank material on dementia. In which case, no-one will read any of these articles unless they are where I was a year ago – worried about their
‘memory problems’ or someone else, perplexed about what to do, frightened about implications and – stuck.

Or, they’ve been diagnosed with dementia, or Mum, Dad or their other half has, and they
only know they need help. If this is why you’re here, this is all for you. It’s really a glorified directory.

I think Rachael summed up what several people have said: “If you are diagnosed with
dementia, it is possible to live. Dementia or memory problems is really difficult to live with,
but it’s also possible to live well and to still come to places and do things. It’s knowing
what’s going on, and where, that’s tricky.”

I suggest that the Memory Support Service is a good place to start. If you phone them, a
human being will be there for you. The number is 0113 231 1727. Or e-mail memorysupport.lypft@nhs.net.

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By Noelle Williamson

In an earlier interview, Rachael Kelley, as one of the founding members of Café Revive in
Calverley, described what the St Wilfrid’s team wanted to offer people living with memory
problems, and explained how the Memory Support Service works.

This time, she talks about the work of the Leeds Beckett Centre for Dementia Research,
where she works, and how people who have been diagnosed with dementia – along with their families and friends – can take part in this research as Advisors in the Leeds Beckett Lived Experience Group.

If what Rachael has to say interests you, you can find out more about the Lived Experience
Group via the link at the bottom of the page.

Rachael:  At Leeds Beckett, we do lots of research into how we can make care and support
for people with dementia and their families as good as it can be. So, that might be the assessment and diagnosis process. It might be care in hospitals. It might be care in care
homes.

WLD: I assumed that any research would be into causes and – if not cures – drugs to make people feel better.
Rachael: There are broadly two types of research into dementia. One is all about cures, treatment and prevention, and there are good advances being made in terms of treatments for dementia. But you can’t just have that.

There are over 100 different types of dementia, so we’re not going to be in a position any time soon, even with these newer treatments, where dementia is going to go away, unfortunately.

And I think it’s fair to say that the care and support that people get isn’t always as it should
be, so the other really important thing to be doing research into is:
How can we support people as well as possible? What do people living with dementia want?
What do their family members want? How can we support people in ways that work for
them, as well as possible?
That’s what we focus on, and that might be care and support directly to people. It might be how can we train and support members of staff in different places to really understand
what it’s like to live with dementia, and to support someone in a really person-centred way?
That’s the side of it that we focus on. Definitely no laboratories and white coats!

WLD: It’s actually good to hear about this very human area of research.
Rachael: “One of the things we really concentrate on is trying to capture the views and
experiences of people living with dementia, and their family members and friends. 

“We try and use research methods that help people to share their own stories, whether
that’s spending lots of time with people and going to places with them so we can kind of
see, ‘in the moment’ with them, what it’s like – or maybe using really creative approaches. 

“We have a few people who have a background in the Arts, and they do lots of lovely creative engagement that’s easier for people to participate in. We also have lots of people living with dementia, and their family members, who are Advisors for our centre, so they advise us on the work that we do. What topics should we be looking at?

“If we’re going to do a project in a certain area, how should we go about doing it in a way that’s as inclusive as possible? Here is the link to our website, that explains how people with lived experience of dementia can get involved in advising us on the research we
do.”

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