Reflection on Dementia Action Week 2023 – acknowledging the people who really matter

Blog by Rachel Thompson, Consultant Admiral Nurse Lewy body dementia

Last week was Dementia Action week; an opportunity to raise awareness and increase understanding of dementia. It has been encouraging to see the activity, enthusiasm and drive by those in voluntary and public sector services to improve the lives of those affected. Dementia has certainly not gone away and sadly the last couple of years have taken their toll on diagnosis rates, availability of post diagnostic support and pressure on services. This has been a difficult few years for the people who are directly affected; those with a diagnosis and their families.
However more recently there are some promising developments about new treatments, and public awareness of dementia has improved. The new report launched by the Alzheimer’ Society, calls for improvements in a timely and accurate diagnosis. It was good to see this including the need for
‘access to subtype diagnoses, an enhanced workforce and an equitable offer to people with all types of dementia.’
Although Lewy body dementia accounts for 10-15% of dementias, possibly more, it is still often mis-diagnosed and people can wait much longer to get an accurate diagnosis and access to treatment, than those with other dementias.
This week, as activity quietens a little, I want to take a moment to reflect on the people who really matter, people with a diagnosis and those who support them. This includes the families I have had the privilege to meet in my role as Consultant Admiral Nurse in Lewy body dementia; a role funded by the Lewy Body Society.
I have met so many amazing families and I apologise to those who I can’t acknowledge here, but this week I would like to make a special tribute to Glenda and her family.

Glenda was given a diagnosis of ‘probable’ Lewy body dementia in Autumn 2020. She had been given a diagnosis of Parkinson’s approximately 5 years before, due to a tremor in her hand and disturbed sleep. Following cognitive changes, onset of nightmares and visual hallucinations, she had
been referred to the memory service. Her hallucinations were puzzling and sometimes upsetting, including seeing men on horseback and people outside the house and Glenda struggled with knowing what was real and what wasn’t. This was difficult to understand for her, her husband Ian
and their family and the symptoms were beginning to really impact their lives. Lewy body dementia is a complex condition and Glenda also had a number of other symptoms such as blood pressure changes, visual spatial difficulty and excessive saliva. All these symptoms affected
her quality of life and made it difficult to carry on doing the things she loved, such as cooking, going on holiday and looking after her family, including her 4 granddaughters. Glenda was not happy with having this diagnosis – as many people wouldn’t be, but she wanted to find a way of keeping going.
Her husband Ian had taken over a lot of the housework but a combination of disturbed sleep and a change in their relationship was hard for them both.
We agreed to do some sessions together and talked about the impact of the diagnosis, including management of symptoms and explored ways of staying connected. I was touched by the affection, love and commitment between them and Glenda’s sharp sense of humour always shone through.
There were often tears, frustrations and worries about the future but there were also laughs and humour.

We managed to get Glenda’s medication reviewed so that hallucinations, being made worse by Parkinson’s medication, were reduced. Cholinesterase inhibitor medication was changed to a patch to reduce sickness and Glenda started attending an online peer support group run by DEEP which
she enjoyed.
Over time sadly Glenda’s symptoms did progress and the family faced a number of challenges including the death of their daughter, Louisa due to cancer and caring for their 2 granddaughters who came to live with them. Glenda’s untimely death following a fall, has been a huge blow to all
those who knew and loved her. She was brave, funny, kind and full of life, despite all she faced, and I know will be missed, including by me.
So, I am privileged that despite the fact this condition can bring incredibly difficult symptoms and challenges for the whole family, there are some incredible people who share their lives with me.
That is something I will always feel grateful for.
Glenda– rest in peace.
Glenda’s funeral took place on Friday 12 th May 2023 and her family including her daughter Vanessa and husband Tony are kindly making donations to the Lewy Body Society.