After John Hyde was diagnosed with frontotemporal dementia aged just 59, he had to retire from his job as a handyman. He immediately wanted to learn more about his condition and find ways to help others affected, so he signed up to Join Dementia Research.

Frontotemporal dementia is a relatively uncommon form of dementia that causes changes in language; such as speaking slowly, struggling to pronounce words correctly and difficulty speaking in coherent sentences. 

It affects the front and sides of the brain (frontal and temporal lobes) and most cases start between 45 and 65 years of age. 

Another common symptom is changes in behaviour, such as acting impulsively and being distracted easily. It can also cause memory problems, although this is often not as severe as with other forms of dementia, such as Alzheimer’s disease. 

“When I got the diagnosis I had a feeling of total relief”

John, of Clevedon, North Somerset, said: “At work, I started getting materials mixed up and forgetting my tools for certain jobs and things like that. My wife noticed it one day and she said ‘you’ve come back home six times in the last hour to get tools.’

“So we went to the GP and they referred me to the local memory clinic. And then after two years of tests and scans, they diagnosed me with frontotemporal dementia.

“When I got the diagnosis I had a feeling of total relief. For ages I was wondering what was wrong with me, so to finally find out felt like a massive weight off my shoulders. I could finally plan what I was going to do about it.” 

John’s diagnosis meant that he had to retire from his job, which mainly involved designing and building gardens. He wanted to keep himself busy after retirement so he decided to take part in dementia research. 

He said: “When I couldn’t do my job any more I totally lost my purpose and was constantly looking for useful things to do. I wanted to learn more about what was affecting my brain and after finding out about Join Dementia Research, I knew I wanted to sign up straight away. 

“By doing research and medical studies through the Join Dementia Research website, I started to get my purpose back.”

Taking part in research

As John was diagnosed just before the Covid-19 pandemic, he took part in research studies remotely over Zoom calls.

One of these was an online survey on the best ways to tell people with dementia about the side effects of taking medications. 

For the COUNTED study, John watched 7 different videos of a doctor describing medications and then completed a 30-minute questionnaire about his views on each video. 

This study is important because although many people with dementia seek medications, they can be concerned about side effects. Therefore, researchers at Leeds Beckett University sought opinions on how best to describe these medications for people with dementia. 

He has also taken part in other studies, such as looking into the connection between photographs and memory and helping researchers make videos about dementia. 

“I’d like to think I’m doing something to help”

John said: “I’ll regularly have researchers and PhD students contact me about taking part in research and I have no hesitation about saying ‘yes’. Most of these just involve asking for my opinion or completing a questionnaire and I love to talk, so I’m more than happy to speak to them about my condition.

“Since my diagnosis I have found that my memory has worsened and I have difficulty pronouncing and saying the right words. Speaking to researchers has helped give me confidence and given me a positive outlook on life, whereas others might struggle in my situation.

“If I can help make others less scared of their diagnosis and encourage them to keep asking questions about it and volunteering for studies, then actually their generation might come at it with the cure for it.

“You know, it’s not going to help me necessarily, but I’d like to think I’m doing something to help.”

Speaking about dementia to younger generations

Alongside taking part in research, John also runs a YouTube channel where he gives regular updates on his condition. He has also begun writing picture books for children about dementia so that they can understand the condition better. 

John said: “I’ve started writing about this character called Mr Sloop, who is a duck that gets diagnosed with dementia. In the first book he goes to a memory cafe to learn more about his condition. I try to write about it in a humorous way that’s lighthearted and easy for children to understand. 

“If I can help the younger generations understand dementia better for the future, I feel like I’m doing a whole lot of good.” 

Are you inspired by John’s story? Sign up to Join Dementia Research today and see how you too can make a difference.