Creating new care services for people with Young Onset Dementia

Why the KTP with Dementia Forward is so important

Dementia Forward is a charity who support people living with dementia and their families from the North Yorkshire region. They offer a range of person-centred support, advice and information services, with local staff having specialist knowledge of the wider services available within each geographical area of North Yorkshire.

The KTP with Dementia Forward has a particularly special focus on young-onset dementia, which refers to symptoms of dementia that develop before a person is 65 years old. The KTP project will centre around creating evidenced-based services for people with young-onset dementia.

It is an important project because the needs of younger people with dementia are distinctly different from those of a person diagnosed in later life. Usually, people with young-onset dementia are working age adults who are juggling employment, financial commitments, and may have caring responsibilities for children, family members or friends.

People with young-onset dementia are also usually fairly active, so they have different physical, emotional and social needs to older adults living with dementia. I don’t think people realise adults as young as 30 years-old have received a dementia diagnosis, so it is a condition that could affect you and me.

Young Onset Dementia Awareness Day (YODA)

Last week, Dementia Forward held its annual U&Me: Young-onset Dementia Conference ahead of Young Onset Dementia Awareness Day (YODA), on Friday 24 October 2025. This year the conference was held at Elland Road Stadium, home of Leeds United. I felt really blessed to attend this conference so early in my induction and to hear from speakers with a range of personal and professional experiences, which included experts by experience.

It struck me how important it is to raise awareness of young-onset dementia and that specialist services should be shaped by people with lived experience who understand the unique and nuanced challenges that come with receiving a dementia diagnosis at a younger age. It is incredibly important that people with young-onset dementia and their loved ones do not fall through gaps in health and social care systems.

I left the U&Me conference feeling energised, moved and inspired, holding in mind the potential contributions and partnership between Dementia Forward, LBU and myself could make to the lives of people living with young-onset dementia.

My career journey to becoming a KTP Associate

My background is in the mental health sector, where I was fortunate to work with people from a diverse range of sociocultural backgrounds and with children and young people from age five upwards. I have been interested in brain health and learning about neurological conditions since studying my undergraduate degree.

After qualifying as a counsellor and psychotherapist, I felt I wanted to learn more about psychology and research, so I went on to do a psychology masters (MSc) conversion course. I had not heard of KTPs before, but as I completed my final unit, I saw the post for the Research and Innovation Coordinator being advertised and was immediately drawn to the values held by Dementia Forward, the opportunity to combine working with a charity and the potential for using research to develop a service solution.

My induction as a KTP Associate has been an interesting and enjoyable experience so far. I've been really lucky to attend the annual staff away day, where I learnt about the history of the charity and its seven founders, who had an inspiring vision to offer compassionate and appropriate support for people living with dementia in their individual communities.

I have enjoyed meeting Dementia Forward staff, the academic support team and the KTP team at LBU, who have also linked me up with another KTP Associate through their 'buddy' scheme.

Even in my brief time with the organisation, I can see that Dementia Forward staff are really passionate about what they do and about making a difference to their clients' lives. I feel really excited and privileged to be a part of the young-onset dementia care project, and to have an opportunity to learn from Dementia Forward, the lived experience and expertise of clients and their families, and LBU academic team.