Emily Wilson became a volunteer Dementia Friends Champion (now known as a Dementia Friends Ambassador) in 2016 after her husband was diagnosed with dementia and she wanted to do more to help raise awareness and break down myths and misconceptions. Here she shares more of her story.
“My late husband Jim was diagnosed with early onset dementia. The first signs of his condition began to emerge over two decades ago, although he did not receive the correct diagnosis until 2014. Jim was originally diagnosed with Alzheimer’s disease but later was diagnosed with Lewy bodies with elements of Parkinson’s. It took 11 years for the correct diagnosis of this particular form of early onset dementia to be confirmed, as there is a lack of understanding of the disease in under 65s.
“Jim was seen by a neurologist, who referred us to Alzheimer’s Society for support and then later I became involved with the Society through my role as a Dementia Friends Champion.
“I used to think Jim and I were unique in having waited 11 years for a correct diagnosis; I discovered I was wrong, that there are lots of people in the same position. I wanted to do more to raise awareness of dementia to make sure no one has the journey that we experienced. Fundraising, awareness raising, training, speaking – I volunteer wherever I’m needed. It’s my way of saying thank you.
“I enjoy organising different fundraising events and all my family get involved, we’ve held ‘Elf’ cinema nights, sold knitted Forget-me-nots and even done skydives!”
Through her role as a Dementia Friends Ambassador, Emily has delivered hundreds of Dementia Friends Sessions to businesses, schools and a mixture of youth groups and she has created hundreds of Dementia Friends.
“I really enjoy delivering Dementia Friends Sessions to children, as they don’t have the same stigma as adults and are more direct with their questions. Many children are now growing up with having a parent or grandparent who is living with dementia, so they’re often interested in asking questions and they’re always shocked when I tell them only 35% of people with dementia are actually diagnosed.
“Before I retired, my job for 20 years was about business and professional improvement. I learned a lot of skills in programme, project and risk management which I’ve been able to transfer a lot of those skills in my volunteering roles.”
Emily, recently completed a Masters in Research with commendation from Ulster University, and focused her dissertation on Young Onset Dementia and Family Support. She has also spoken at a number of conferences to share her findings, including a virtual presentation at the Alzheimer’s Disease International conference in Krakow. She has dedicated herself to researching a condition she feels is scarcely understood and in need of greater service provision. She’s been a tireless campaigner supporting people affected by dementia and raising awareness and is a regular speaker to community groups and others in Northern Ireland.
Emily chairs the Dementia Friendly North Belfast group and, until a few months ago, was a member of the Alzheimer’s Society Volunteer Advisory Panel (VAP), a group of volunteers who give feedback and ideas on how to improve the experience of volunteers across the organisation.
Last year Emily won an Alzheimer’s Society People Award, to recognise and celebrate the incredible contributions she made through her work and volunteering to provide help and hope for people living with dementia. More recently, she been honoured and received a British Empire Medal (BEM) for services to people living with dementia in Northern Ireland.
“I couldn’t believe it when I read the letter, it was only when it was published that it started to sink in. I am so honoured to be recognised. I couldn’t do what I do without the support of my family and the dedication and support from those that volunteer and work alongside me. It’s going to be tough to choose who I take to the medal ceremony!”
Emily’s volunteer manager, Dementia Friends Engagement Officer, Alison Wakefield, said: “Emily is so passionate about raising awareness and knowledge of dementia through her role as a Dementia Friends Ambassador and all the other volunteering roles she takes on. Everyone in the Dementia Friends Team would like to congratulate Emily for being recognised with a BEM, it is really deserving and shows her commitment, dedication and enthusiasm for the Programme.”
