For World Lewy Body Dementia Day, Fiona talks about caring for her husband Andrew, who is living with this almost unknown dementia, and the need for better awareness
"It all started after my husband Andrew had a serious injury when working as a joiner in 2018. A heavy roof beam hadn’t been supported properly and it fell on Andrew, leaving him with multiple injuries to his head and body.
"It took him a long time to recover physically, but I began to notice other issues. He was forgetting things and, despite being an experienced driver, he would forget how to get to places. He was examined by a neuropsychologist who said he could get better in a couple of years, but I could see he was getting worse.
"I felt like people in the NHS kept fobbing us off, and we were told a few times that Andrew, who was around 56 then, couldn’t have dementia because he was too young. Covid also slowed down our attempts to get a diagnosis. Ultimately, Andrew wasn’t diagnosed with Lewy body dementia by the NHS until 2023, when he was 60. This type of dementia is more common in people in their 70s, but they think Andrew’s head injury may have brought it on sooner.
"The diagnosis took far too long and I feel we missed a chance to get Andrew started on medication that could’ve helped slow the illness.
"I’m 64 now and worked for 40 years as an advanced nurse practitioner so I could see that Andrew had symptoms specific to Lewy body dementia. He’s had quite marked hallucinations and he struggles to find the right words to speak. He also has a very bland expression and a bit of a tremor.
"He sometimes has syncope attacks when he just loses consciousness suddenly, and he is prone to getting frustrated and lashing out.
"Andrew was always such an active, jovial guy who loved music and climbing munros. Although he’s not able to do much for himself now, we had a great life together, and love spending time with our children and grandchildren.
"We also visit the Alzheimer Scotland dementia resource centre in Kilmarnock a couple of times a week, which is a real lifeline. It’s great they have activities tailored for people like us who are a bit younger. Being a carer can be isolating and it’s great to get out and chat to people. I also have carers coming to the house every day which really helps.
"I’d encourage anyone who’s worried about a loved one to speak to a doctor as soon as you can. And it’s also important to reach out to family and to places like Alzheimer Scotland as they give great help and support.
"Not many people have heard of Lewy body dementia, so it’s really important to raise awareness – both with the public and with people in healthcare. We need better diagnosis so that people like Andrew can get the care and support they need as fast as possible."
Need support or more information? Our 24 hour Freephone Dementia Helpline is here for you: 0808 808 3000.