A South West man whose wife was diagnosed with a rare form of dementia is encouraging others to take part in research, after joining a University of Exeter study exploring support for carers.
John Desmond's wife, Linda, was diagnosed with semantic dementia in 2021 at the age of 67. Semantic dementia, also known as frontotemporal dementia, is a rare form of the condition that affects a person's ability to use and understand words. While dementia mostly affects people over 65, frontotemporal dementia often begins earlier, typically between ages 45 and 65.
John, 69, continues to work as an exam invigilator while caring for Linda - a balancing act shared by many carers. To support people in similar situations, CareCoach was developed as an online resource offering flexible learning modules alongside personalised coaching via email, video call and phone.
A study - funded by the National Institute for Health and Care Research (NIHR) and run by the Universities of Exeter and East Anglia, with support from the Exeter‑based NIHR HealthTech Research Centre (HRC) in Sustainable Innovation - is now testing whether the platform can improve carers' confidence in providing care, as well as their mood and overall quality of life.
Professor Chris Fox from the University of Exeter, Co‑Chief Investigator for CareCoach and Dementia Theme Lead at the NIHR HRC in Sustainable Innovation, said: "Helping family carers is very important - not only for their wellbeing but it also has benefits for the person living with dementia. Despite innovations in biomarkers and new medicines, they remain limited, making family support an ongoing priority. No one should be left behind."
Professor Jane Cross from the University of East Anglia, Co‑Chief Investigator for CareCoach, added: "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."
The study, which opened in April 2025, has enrolled 249 participants so far and aims to recruit more than 400 family carers across the UK. Participation is fully remote, enabling carers like John to take part from home alongside their daily commitments. Participants are randomly allocated to either the CareCoach intervention or a control group receiving usual care.
John, who lives in Bath with Linda, first heard about the study through Join Dementia Research, which celebrates its 11th anniversary on 24 February. The service, run by the NIHR in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society, connects volunteers to research opportunities.
Explaining why he signed up, John said: "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. 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."
Participants complete questionnaires at the start of the study, and again at 10 weeks and six months. John, who was placed in the intervention group, said the programme offered valuable insight and a sense of connection: "The course has been very good at presenting people in various situations where their partner has dementia. You get a real insight into other people's challenges. They spoke fully about their experiences, and that's been a definite bonus."
John is now encouraging more carers to take part: "You've got nothing to lose. It's worthwhile becoming aware of others in similar situations - they've got a lot to offer. Even if the dementia is different, many aspects are similar. And there is a real focus on you as a carer."
