Member showcase: Oxleas Young Onset Dementia Service

Starting something with nothing but the knowledge of injustice and a passion to right it

Kelly Mills, Young Onset Dementia Nurse, Oxleas NHS Foundation Trust shares her experience of setting up a young onset dementia service.

This service started with a small group of senior clinicians finding it increasingly difficult to ignore young onset dementia cases. These were the cases they took home with them; the ones they couldn’t discharge when line managers told them they had to. They got together to talk about what they could do and asked a couple more colleagues to join them. This was the beginning of our steering group – it started in 2023 with five or six clinicians; we now have nearly 50 members spanning primary, secondary and tertiary healthcare, social care and lived experience across three boroughs in South-East London.

It was agreed that there was a need for a specialist young onset dementia nurse to build a caseload and research what was needed and what could be done. Funding was found via a ‘Dragons’ den’ project within Oxleas, looking for ways to do a lot with very little whilst evidencing that we are providing a much needed service. It wasn’t hard to plead our case. We soon had funding for my position for 12 months.

That time disappeared too quickly but we achieved a lot. Some of the highlights include:

• Embedding the Young Onset Dementia Carers Group: something we started before the funding and were then able to sustain through seeking joint facilitation in other services
• Building a caseload: starting with cases I already knew as a Dementia Nurse in one borough, I was able to build on this by inviting further referrals from colleagues across the three boroughs. We hadn’t anticipated the caseload growing as quickly as it did
• Cognitive stimulation therapy group for people under 65. This was lovely to be a part of, being able to change the sessions to be more active, change the quizzes and songs to be more up to date, we had karaoke, it was fun, the feedback was good
• Presenting the service across multiple teams and organisations started as something I dreaded and is now something I look forward to
• Watching a young carer get to university
• Seeing an elderly mum relieved of her physical care responsibilities
• A carer turning up at the Carers Group for the first time
• A colleague realising they want to work in partnership and not in a silo

I have found that every family I work with needs more than this service. I continue to build a network to enable more responsive care whilst ensuring that we are family-led in our approach. For many people there is a need for dynamic changes in health and social care support, an area we are working on here in the longer term through work with the Neighbourhood Hub development.

Although I am a nurse, it is vital to look at longevity for the service; awareness of local and national drivers is essential to this. I want to make sure that there is a young onset dementia service here in Oxleas for years to come.

– Kelly Mills, Young Onset Dementia Nurse, Oxleas NHS Foundation Trust (South-East London)

Kelly’s career in health and social care began in 2007 as a care support worker in a nursing home. Since then, she has across stroke care, community nursing, training and service development, while qualifying as a registered nurse along the way.

The constant throughout her journey has been dementia care. Kelly has always been fascinated by understanding the person behind the behaviour and supporting people living with dementia in a holistic, compassionate way. After gaining experience in a specialist dementia care home, Kelly joined Oxleas as a Dementia Specialist, and is proud to be continuing to champion better support for people with young onset dementia and their families.