Hilda Hayo recently celebrated her 10th anniversary as Chief Admiral Nurse and CEO of Dementia UK. She is also a founding member of the Young Dementia Network steering group which was created in 2016.
Hilda’s grandfather lived with young onset dementia and because of him and her family’s experiences of caring for him, she became a Registered Mental Health Nurse to make a difference for other families. She has over 40 years experience developing and leading dementia specialist teams.
To mark her milestone at Dementia UK, we put a a series of questions to Hilda about young onset dementia and her hopes for the future.
Do you think awareness of young onset dementia has grown in the last ten years?
Awareness of young onset dementia has certainly improved in the last ten years, but we still have a long way to go. I’m pleased to see young onset experts starting to get a seat at the table with NHS England and the opportunity to shape and deliver improved services.
I chose to pursue young onset dementia early in my nursing career because I knew that people living with the condition were treated even worse than other people with late onset dementia at that time. I also saw that what works for young onset dementia also works for people with other types of dementia – if we can get services and support right for people with young onset dementia, we can apply this and multiply the impact it has for the wider population of people living with dementia.
What improvements, if any, do you think there have been around young onset dementia diagnosis and support?
We have seen an improvement in awareness and understanding of young onset dementia from healthcare professionals over the last decade, but there is still a long way to go.
When I first set up a young onset dementia service in Northamptonshire, I found that people with young onset were being sent to an older person’s team who weren’t well versed in rare dementias and didn’t offer support and services tailored to younger people experiencing the symptoms of dementia.
I remember that often people were referred to me for assessment after they had been wrongly diagnosed with other conditions eg depression, anxiety, stress or relationship issues.
Unfortunately, people are still facing a long wait for an accurate assessment and diagnosis, on average at least twice as long as a person over the age of 65 years.
Do you feel research into young onset dementia is having an impact, and which topics do you feel need more research?
I think we need to address the theory-practice gap when it comes to research into young onset dementia. I would like to see more clinical research into the condition being implemented in practice to ensure that findings and observations don’t end up sat on shelves but make a real difference to the lives of people living with young onset dementia.
I would like to see more research into interventions which make a real difference to families.
Why did you join the Young Dementia Network steering group? Why do you think the group is needed and what impact do you think it has had so far?
I think the Young Dementia Network steering group is vital because it brings a number of organisations to the same table. When we work together, we can increase our influence and impact and avoid working in silos.
A coherent, joined up approach is essential – in the past we had research sitting on shelves, charities working independently of each other and people with a diagnosis unsure of where to turn for help.
Why is young onset dementia so important to you and Dementia UK?
I have always had an interest in young onset dementia, partly because of my family experience but also because I met many people in the course of my career who had dementia diagnosed under the age of 65 years. The services and support for the under 65-year-old with dementia were very sparse and very frequently they were admitted to settings that were not appropriate for their needs.
I was approached to set up a Young Onset Dementia service in Northamptonshire due to my experience and interest. Having been familiar with Admiral Nurses throughout my career, I decided to follow the Admiral Nursing model of services when I set up the Northamptonshire Young Onset Dementia service. It was a nurse-led assessment, diagnostic and post-diagnostic support service that stayed with the person from diagnosis to end of life.
In 2020 YoungDementia UK joined Dementia UK and from then young onset dementia became a secondary USP for the charity.
What changes do you hope to see for young onset dementia over the next ten years?
I would like people with young onset dementia to receive a service that is specialist to their needs. Having worked across the sector I know the difference between support for young onset and late onset dementia. It’s not brilliant for late onset, but it’s a lot better than it is for young onset.
Often if you are diagnosed under the age of 65, social services will be responsible for you, but they aren’t always able to provide support for dementia. This means people with young onset dementia fall between the cracks and don’t fit into one set of services.
Young onset also often presents less recognisable symptoms and behaviours that people find difficult to attribute to early signs of dementia eg changes in personality, behaviour and social functioning. People with these symptoms need support from professionals who understand what their progressions are likely to be and who can offer advice to their families, health and social care, and local communities too.