Research gives voice to those with young onset dementia

Research by the Health and Care Research and Evaluation Service within the Institute for Health and Care Improvement (IHCI) has highlighted a lack of age-appropriate support for people with young onset dementia and their families. The research was commissioned by Dementia Forward, a charity that supports people living with or caring for someone with dementia in York and North Yorkshire.  

Dementia is described as young onset when symptoms develop before the age of 65 and it is estimated there are about 70,000 affected people in the UK. The types of dementia that affect younger people are often rarer and can be difficult to diagnose, meaning that people can go a long time with the wrong diagnosis and little support.   

Dementia Forward offers support, advice, and information to anyone affected by dementia across the county, with a wide range of person-centered services. They run wellbeing groups and activities and provide specialist support and activities for younger people affected by dementia. In October 2022 Dementia Forward launched their U&ME campaign to raise awareness of young onset dementia and improve access to age-appropriate care.  

The IHCI research team spoke to people living with young onset dementia and their family members to understand more about their experiences of services and support, looking at what is available, what they use and what they would like, including gaps in what is available. Using a technique known as photovoice methodology, participants used photos to share their stories to help the research team to gain insight into their experiences. 

The findings revealed that people with young onset dementia want to engage in a range of meaningful activities, especially after diagnosis when they often need more to do. Activities should be age-appropriate, not simplified, and should reflect their previous interests. Participants also said that activities should be flexible and tailored to individual needs rather than following a “one size fits all” approach.  

Feedback from those who took part in the research emphasised the value they placed on having their voice heard and being able to identify with others in similar situations.  

One carer said:

“The best thing for us was the chatting - someone that actually listened with the hope that what was said will help others in the future.”  

Another carer added:

“I found it made me think more deeply about (my husband’s) situation and how I could help him. For (my husband) it was other people talking openly about their situation. For myself the sessions were very useful as I found out an abundance of information. For (my husband) he felt he benefited from identifying with other people in similar situations.” 

Carers play an important role in supporting family members and their input was invaluable for the research team to understand the wider implications around a diagnosis of young onset dementia. The research revealed that carers often struggle to find out what support is available and how to access it, and that they seek guidance and coordination in navigating services and benefits. Support for carers should include peer support, with information and advice tailored specifically to young onset dementia. Carers wanted activities that are age appropriate and “normal” things that their family member would have done prior to the diagnosis. However, several felt that people living with young onset dementia are treated like children, with activities “dumbed down” for them. 

Professor Garry Tew, Director of the Institute for Health and Care Improvement at York St John University, said:

"Headline findings suggest how activities and services to support individuals with young onset dementia should be delivered – particularly that they should be age-appropriate, social, flexible, person-centred, meaningful, tailored to evolving needs, inclusive and empowering. Accessibility is key, as is supporting both physical and mental wellbeing for these individuals and their carers.” 

Jill Quinn MBE, CEO of Dementia Forward, added:

“The young onset dementia service we deliver is designed to keep people from slipping through the gaps. Dementia is a progressive and long illness and the support needed changes throughout. The service must be age appropriate and in fact requires a totally different toolbox to that of older people. The research backs that up – we cannot have a one size fits all approach. 

“Receiving a diagnosis of young onset dementia can be isolating so, whenever possible, we offer individuals an opportunity to meet others who are in the same situation, and a chance to engage in age-appropriate activities with peers. This timely research has highlighted the need for a redesign. We will use the findings, along with our experience of directly supporting thousands of families, to influence the changes needed within health and social care.” 

The report can be downloaded on the Institute for Health and Care Improvement webpages.

The Institute for Health and Care Improvement supported this work through their Health and Care Research and Evaluation Service. The service undertakes a wide range of research projects and evaluations for health organisations, local authorities and charities using both quantitative and qualitative approaches and drawing on the expertise of academics with relevant clinical or subject matter expertise.