Tracey Seymour, whose husband was diagnosed in his mid-50s, wants to challenge the perception that dementia only affects older people.
Since her husband Paul was diagnosed with Alzheimer’s aged just 54, Tracey Seymour has been on a mission to raise awareness about the impact of dementia on younger people.
‘So many people think this is part of getting older but it’s a disease, like cancer, not a normal part of ageing,’ says Tracey, who gave up work to care for Paul.
‘Paul was in his 50s with a job and a mortgage. I want to shout from the rooftops that dementia is not just about granny and grandad.’
Shock and denial
Tracey and Paul live in his hometown of Midsomer Norton in Somerset. They married within 15 months of meeting and recently celebrated their 39th wedding anniversary.
Tracey is a trained hairdresser who more recently worked as a private cleaner. Paul, now 61, worked as a lithographic printer before redundancy led to him becoming a construction labourer. They have two children and three granddaughters.
Tracey recalls the first signs that something wasn’t right with Paul’s memory.
‘He used to come home and say that the younger lads were playing jokes on him, moving his tools and kit,’ she says.
‘There’s a level of forgetfulness that you know you shouldn’t really have, when you frequently forget dates, times and names. That’s when Paul said to me, “There’s something going on.”’
Paul saw his GP, and tests at a memory clinic suggested he might have mild cognitive impairment, where someone has minor problems with mental abilities such as memory or thinking. Further tests and two brain scans later, Paul was diagnosed with young-onset Alzheimer’s in October 2014.
‘Paul just said something like, “Okey-dokey,”’ recalls Tracey. ‘I think he was shocked and in denial. I felt relief – “Now we know what we’re dealing with.”’
On a quest
Tracey noticed that the posters and leaflets at the memory clinic only showed older people, which motivated her and Paul to challenge that perception by sharing their story in the media.
‘We went on a campaign to raise awareness that dementia can happen in under-60s,’ she says. ‘We did daytime TV, that was very exciting. You go on a bit of a quest and get very wrapped up in it all.’
The couple also did two successful Memory Walks in Bristol and Bath, to raise vital funds for Alzheimer’s Society.
Sad and frustrated
Tracey and Paul tried to carry on as normally as possible, including continuing to work. However, the progression of Paul’s dementia has been very noticeable.
‘Alzheimer’s is not just memory loss, but also your whole thinking process,’ says Tracey. ‘On a bad day, he’ll struggle to make a cup of tea and will ask me for help. Dementia affects every single task he does.’
Tracey, who has lasting power of attorney for Paul, says that her husband’s abilities have declined more quickly than she ever expected.
‘Paul is a fun-loving, bouncy, bubbly person, but forgetting people’s names or not getting a sentence out makes him sad and frustrated,’ she says. ‘It’s the whole sadness of it all. He’s only 61.’
Paul worked for a property developer for five years, until March 2020.
‘Paul’s employer was amazing,’ says Tracey. ‘He employed Paul after his diagnosis. I expect a lot of people wouldn’t do that, so we were very grateful.’
Paul’s duties at work were changed as time went on, to allow him to remain in the job for as long as possible. His last day was in early March, just before the pandemic took hold.
‘He was distraught to lose his job and then it was lockdown – it was a double blow,’ says Tracey. ‘That’s where I saw the biggest change, in those following months. It all had a big impact on Paul.’
With Paul’s dementia seeming to progress particularly quickly during late 2020 and early 2021, Tracey decided to give up work.
‘I wanted to be here with Paul all the time, so in January I decided not to go back,’ she says.
‘First and foremost I’m Paul’s wife, but I’m also now his paid carer, because of Carer’s allowance. I see it as my wifely role and as my job.’
Tracey is making adjustments ‘all the time’ at home.
‘I might have to reword something in simpler language or, if I want to involve Paul in mowing the lawn, he’ll go beside me, holding the wire,’ she says.
Tracey and Paul receive excellent support from family and great understanding from friends. Tracey has also found Talking Point, the Society’s online community, extremely useful.
‘For three years at the beginning, that was my go-to. I was on there all the time, spouting off!’ she says.
‘Although I couldn’t see them, people understood and were in the same boat as me. It was my comfort, they knew exactly what I was feeling and saying.’
Talking Point members gave Tracey the idea of printing and keeping lots of photos from holidays and occasions, for Paul to look through. The couple are also keen runners, regularly joining their local Parkrun.
‘They all know Paul has Alzheimer’s, so the marshals help him with the route if he gets a bit muddled,’ says Tracey. ‘I want to keep Paul fit and healthy, and look after my own wellbeing.’
Tracey is also now supporting her 89-year old mum, who was recently diagnosed with Alzheimer’s.
‘I have bad days and sad days, but I’m a great coper and I feel quite strong,’ says Tracey.
‘I borrowed a famous phrase when I said that there’s three people in our marriage – me, Paul and Alzheimer’s. Paul’s retirement has been taken away and we’ve had to reroute our futures.
‘I know what the future entails, but you can’t change it, so you just have to make the most of what you’ve got and live in the here and now.’
For Tracey, the here and now includes spreading the message that dementia can affect younger people.
‘It’s my passion to try and educate people about it,’ she says.
‘Men of Paul’s age don’t always talk about things, but if you’re 50 and have a bad memory, go and get it checked out. Paul always used to say that he’d want other people to do that.
‘If we help even one person to go to the doctor about their memory, we’ve done our job.’
You can support people affected by young-onset dementia come to terms with a diagnosis.