By Noelle Williamson
My mother had Young/Early Onset Dementia, which affects people before the age of 65.
Last September, when I was worried that I was going in the same direction and didn’t know
what to do, I saw a flyer for Café Revive, on the first Saturday of every month. It said:
“A café for everyone, with an especially warm welcome for people living with memory
problems or dementia and their family and friends.”
Back then, I didn’t know that this is the basic premise for a memory café, or that Café Revive was only the latest one to open in West Leeds. I only knew that I had memory problems, I had to get a grip, and those words spoke to me.
On the bus to Calverley, that first Saturday in October 2024, I was nervous, but at St
Wilfrid’s Church, I found the promised warm welcome, and coffee, cake and company.
The nerves remained, but I still enjoyed my first memory café very much. The next time I went, the first five minutes showed what Café Revive is about. First, (1) Kim
remembered my name and how I like my coffee. She then (2) directed me to the yummy
pyramids on the cake table. Then, with my coffee in one hand and a piece of splendid-
looking fruitcake in the other, I noticed another table. This (3) was spread with Alzheimer’s
Society leaflets about what dementia is and is not; known causes and types; what you can
do to slow its progress; what you might expect for yourself or your partner or parent; and
what help is available for you and your family to enable you to stay in your own home for as long as possible.
There you have it: 1) personal connection, 2) easy hospitality, and 3) a commitment to
supporting and empowering ‘people living with memory problems or dementia and their
family & friends’.
Kim said: “We wanted it to be a resource centre. We have leaflets on memory problems, but also about what’s going on around the city, because when mum and I were in the thick of it, I didn’t know what was available. I felt quite isolated.”
Kim is a trainee lay minister at St Wilfrid’s, and a founding member of Café Revive.
Kim’s mother has dementia, and was able to live at home for a long time before moving into a home when she needed specialist care.
“Since then, I’ve discovered how much is going on in and around Leeds. What you’re writing should help people to access things.”
I’ve been back almost every first Saturday since. On the fun side, it’s a relief to drop my
guard and ‘just be’; lovely to join in with conversations and silly games, or just listen and
watch.
At the same time, the fun side provides a comfortable background of chatter and laughter to the business side of working through leaflets to decide whether to go to a doctor and, if so, how to describe my situation coherently, preferably without crying.
Rachael is another founding member, along with Rob, the Vicar. In her professional role, Rachael is part of efforts to enable more people with dementia to live well at home for
longer.
She knows a lot about the practical and emotional aspects of living with memory problems or being a carer, and the services available in Leeds.
I’ve often seen her in private conversation in the middle of the church, mostly listening as a wife or son talks, while their husband or father is safely and contentedly occupied at one of the round tables.
Talking with Kim about our mothers’ dementia helped me lay some things to rest. Talking to Rachael enabled me to cut through fears and worries, and focus on key points.
While this was excellent preparation for when I saw my GP, a few weeks later, there was another huge unexpected benefit: I started sleeping better than I had for a very long time. I expect that’s when my memory started to function better.
When I went to my GP, I learnt that I do not have Early Onset Dementia. Instead, the
memory problems I had experienced only amounted to MCI, or Mild Cognitive Impairment.
Oh! Thank you! Er… sorry?
So: MCI is another variable aspect of ageing, like hair going grey, the waistline going south, and bones losing density.
However, like loss of bone density, MCI is attributable to prolonged physical inactivity, regardless of age. Both conditions, cognitive and physical, are preventable, manageable and – to some degree – reversible through exercise, diet and vitamin or mineral supplements. Use it or lose it, basically.
Of course, chronic sleep deprivation, due to illness, excessive desk or sofa time, or relentless stress, will also temporarily impair cognitive function at any age; but normal function is restored once the situation improves and you catch up on sleep.
Mine was due to stress, but my couch-based coping mechanism had not helped matters.
Dementia is different. All forms of dementia are diseases, and progressive. Some people cop it. Some don’t. It’s a lottery no-one wants to win.
BUT, there’s a lot more knowledge and support than there used to be, particularly in Leeds, which means you can live a good quality life with dementia.
I first went to Café Revive as a nod towards finding answers about my “memory problems”,
but mostly to hide under the blankets and eat cake.
I got a great deal more from my ‘first Saturdays’, but I was embarrassed at my own ignorance – firstly about memory problems and dementia, but also about all the services that so many individuals and organisations in West Leeds have been delivering for years, even decades.
However, no-one ordinarily talks about memory problems and dementia: we just cross our
fingers and hope that the bogeyman won’t get us. Unfortunately, it means that if we sense
him lurking, or a parent or partner is diagnosed with dementia, we have no idea what to do
or how to get help.
This article is the first in a short series on living with memory problems or dementia. The
aim is to highlight resources in West Leeds (primarily memory cafés) and provide links to
relevant groups and organisations.
Finally, MCI is frustrating, so I strongly recommend finding forms of exercise you can enjoy,
eating well (for nutrition and pleasure), taking any supplements your doctor or pharmacist
recommends, and getting plenty of sleep!
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