16.02.2026
John and Linda’s story: How dementia research is helping support carers
John Desmond’s wife, Linda, was diagnosed with semantic dementia in 2021, at 67 years old. Semantic dementia, also known as frontotemporal dementia, is a rare form of the condition that affects Linda’s ability to use and understand words.Linda was working as a pharmacist in 2018 when she first noticed the changes in herself that weren’t obvious to other people, including John.
Linda's diagnosis
When she was diagnosed, John’s initial reaction was “more surprise than anything. She did not seem really any different.”
After 36 years of marriage, John was now to become Linda’s carer as well as husband. Being a carer of someone living with dementia, John is exactly who the CareCoach online resource was designed for. It provides online learning combined with coaching support via email, video-call and/or phone.
The CareCoach study is funded by the National Institute for Health and Care Research (NIHR). It is testing whether the online package has an effect on a carer’s sense of being able to care well, their mood and quality of life.
Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age. Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.
John, 69, who continues to work as an exam invigilator, said: “Part of the challenge has been working and caring at the same time. We live near a dementia support charity but I haven’t had time to attend the group sessions with Linda.
“In the meantime, I thought, at least I can get involved in research as far as possible. I signed up to Join Dementia Research, and then this one popped up, specifically aimed at carers. So I thought I’d get on board with that.”
What is frontotemporal dementia?
Symptoms of frontotemporal dementia can include personality and behaviour changes. It can also include problems with memory, mental abilities and language. This can present as speaking slowly, struggling to make the right sounds when saying a word, getting words in the wrong order, or using words incorrectly.
“She’s forgotten some quite basic words, but she does really well and lifestyle routines haven’t really changed at all. Obviously, it’s frustrating for her at times, although she doesn’t show it very much and is quite proactive herself. She’ll write down words she’s forgotten and use good old Google images to attach meaning to the words.”
“It’s the abstract terms that create the problems because it’s difficult to explain larger concepts. Equally the more basic words can be tricky. I suppose, in a way, my background in teaching English as a foreign language particularly has helped me.”
John initially hoped to find a study that focused on his wife’s specific condition.
Encouraging others to take part
John is encouraging others to take part in research: “I would say you’ve got nothing to lose for a start. It is worthwhile making yourself aware of other people in a similar situation and the fact that they, having gone through those experiences, have got a lot to offer. Even if the degree of dementia in the person you’re caring for is different, there are aspects that are similar. And there is a real focus on you as a carer.”
By participating in studies like CareCoach, John has helped researchers understand what carers need. This will ultimately help others in the future.
Professor Jane Cross, University of East Anglia, Co-Chief Investigator for CareCoach, said: “In an ageing population, where the numbers of people living with dementia are increasing, it is essential we support those who are keeping people living with dementia well at home and enable them to live lives that remain fulfilling. Prioritising these people’s wellbeing is essential to sustaining our health and care system.”
Ready to find your research opportunity?
Visit the Join Dementia Research website to discover how you can get involved. You can sign up to hear about studies like CareCoach and many others, including those for people with dementia and their loved ones.
John and Linda's story: How dementia research is helping support carers
John and Linda's story
0:033 seconds My wife Linda first discovered that there was some change in her experience of day-to-day living. Um, and that was back in 2018.
0:1515 seconds She was not understanding the meaning of words and sometimes finding it difficult
0:2121 seconds to say the correct word. And it was only
0:2626 seconds in 2021 that she had it diagnosed as semantic dementia, which is
0:3434 seconds understanding and using words.
0:3939 seconds In a way, it was a surprise for me, but not one that made me think, oh goodness, how are we going to cope with this?
0:4747 seconds Because obviously the word dementia does immediately conjure up all sorts of thoughts and ideas of what that ent
0:5454 seconds entails. Our response was let's just carry on the way we way we do doing our normal activities.
1:031 minute, 3 seconds Care coach is aimed at carers of people with dementia. Its main purpose is to 1:101 minute, 10 seconds provide advice, support and reassurance to to carers of those who are affected
1:181 minute, 18 seconds by uh dementia. The idea of the trial is to see how effective it is. There are
1:261 minute, 26 seconds two groups. One group follow the course and the other group don't. They carry on with whatever they do to look after
1:331 minute, 33 seconds their uh partner, their loved one. and then the results will be compared to see
1:401 minute, 40 seconds how effective that care coach course has been.
1:441 minute, 44 seconds I thought, yes, there's obviously the need to look after Linda, but also it's
1:521 minute, 52 seconds very easy to to forget the the carer's needs, making sure one's doing the right
1:581 minute, 58 seconds thing, but also having that support that you know you can turn to someone to help
2:052 minutes, 5 seconds with advice. I have felt with this course that um I have been very much
2:112 minutes, 11 seconds supported by it. There is a wealth of information that you're given and a
2:192 minutes, 19 seconds chance to reflect on your own situation which is so important and they really help you with that.
2:282 minutes, 28 seconds The advantages of taking part in any research is that first and foremost, you know, you're helping all those involved
2:372 minutes, 37 seconds in the medical profession with future possible cures for various things. You feel you're doing good. Also, you you
2:452 minutes, 45 seconds learn so much and the fact that you think a bit more about issues that if they're not affecting you now might
2:532 minutes, 53 seconds affect you later on
