Living well with Dementia: Marilyn's Story

This Autumn we were fortunate enough to sit down and have a chat with Marilyn, a remarkable lady who has been living with dementia for nearly a decade. Marilyn has brought endless positivity and energy to our Dementia Services over the last year and was keen to relay some of her experiences to give people a unique insight into her life and some of the support/services that we provide.

Marilyn was diagnosed with Young Onset Dementia around eight years ago when she was working as a Home Carer. She was originally diagnosed with Alzheimer’s, but later down the line discovered that this wasn’t the form of dementia that Marilyn had. This is an example of the challenges that can come when trying to diagnose dementia accurately, which is a consequence of it being such a complex and misunderstood disease.

This diagnosis wasn’t the first time Marilyn had encountered dementia though, as she had previously cared for her mother who had her own diagnosis, Marilyn recounted:

“I was fortunate because I understood a bit about dementia as my mother had had it and I had looked after her for seven years, and her sister had also had it too.”

After Marilyn’s diagnosis, she became an active member and prominent voice in various different groups and organisations aligned with supporting those who have received a dementia diagnosis. This eventually led to her crossing paths with us at Age UK Herefordshire and Worcestershire(H&W).

Marilyn has attended several of our dementia-related events and some of our groundbreaking MCST sessions, offering her input and invaluable feedback to us. MCST stands for Maintenance Cognitive Stimulation Therapy and is a weekly one-to-two-hour long programme for people living with mild to moderate dementia. Group members take part in meaningful and stimulating activities, which have been proven to help maintain memory and mental functioning.

Speaking about the sessions and support we provide Marilyn said:

“It’s helped me because I’m taken at face value and not treated just as ‘a person with dementia’. People don’t believe me when I say I have dementia - I tell them I have the certificate to prove it.”

Marilyn also relayed some of her favourite parts of her experiences with our MCST sessions saying:

“Well, it was an interesting cohort we had you see, it was all ages, although we didn’t really touch upon birthdays! Everybody had their own story, and it was by joining the dots together you could work out their past and how they came to be in the group.”

Marilyn continued paying tribute to the fact that the sessions had a good mix of experiences and felt natural rather than awkward or forced:

“It was interesting as everyone had different experiences. There was one chap who was on a new drugs trial, it was an infusion he had to take every week, so everyone had their own little story really which was nice, and also it wasn’t teased out of us - we didn’t have like 20 questions, it was all quite natural conversation”.

When asked about her overall thoughts regarding our MCST sessions, Marilyn said:

“I got a lot out of it, I certainly did. I found Age UK H&W very receptive to what we wanted. Overall, I would recommend them, not only because of the dementia diagnosis, but also for providing support with things like obtaining the right benefits and so on.”

Marilyn currently lives in assisted living housing, in which she has become good friends with another lady called Brenda. The pair finished our conversation by excitedly telling us about all the fun they get up to, which included a hint of mischief.

Marilyn reaffirmed her commitment to being an advocate for dementia research and a prominent spokesperson - a mantle she has taken on as a result of her incredible character.