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“My life may have changed, but it’s certainly not over.”
Many of us know someone who has Dementia or is supporting a friend or family member. Dementia is a brain disease affecting around 900,000 people in the UK. Early 2023, Skills Development Scotland (SDS) was invited to participate in an Alzheimer Scotland 3-year research project titled: Career Guidance and Young Onset Dementia. SDS staff joined an amazing co-production group, learning from individuals living with this diagnosis and working with them to consider how career guidance can support decisions they are making. SDWG member Stuart Dougall, one of the co-production group members, shared his story:
“March 2021 - I was experiencing strange feelings, initially it felt like a fog in the front of my head and then a huge headache came on. I tried taking headache tablets but realised very quickly that nothing worked.
I was struggling to retain and assimilate information from various sources and losing my train of thought. I also noticed that I was starting to suffer from word blindness and reading words which weren’t there. I noticed occasions when the noise level around me was amplified, it was excruciating. I started to compensate carrying a piece of paper in my pocket to jot down any information e.g. phone calls, conversations, allocated tasks etc.
During the walk to the office I felt dread, thinking what was going to unfold, although always hoping it wasn’t going to. I started going to bed for a couple of hours when I went home. When I got up the headache had lifted. This became part of my daily routine until July, when my wife decided enough was enough.
After various appointments and tests I was diagnosed with Early Onset Dementia – Alzheimer’s sub type at the age of 58yrs on the 17th Jan 2022.
On receiving my diagnosis, there certainly was mixed emotions, on one hand it felt like my life was over but on the other it was a relief that I actually knew what was wrong. Days following, there was raw emotions/frustration because like everyone you have plans, places you would like to visit, holidays, replace your car. We had been talking about moving house and in one swoop it was all gone, kind of hard to really sum up. I was then medically retired from full time employment with 10 days’ notice on 31st May 2022 with an assessment of not being able to work again.
One of the turning points in my journey was in November 2022, I joined the Scottish Dementia Working Group (SDWG) which is a national, member led campaigning and awareness raising group, for people living with a diagnosis of dementia in Scotland. Joining the SDWG has been such a positive experience for me. It’s given me back a focus and purpose in life that I’d lost, however it’s not really about me but more about what I can do to help others. This has given me back a purpose and now forms part of my routine. I now treat this as my job.
It was through the SDWG that I became involved in the Career Guidance and Dementia Research Project with the UWS, working alongside stakeholders and academics in a co-production group. The group’s ability to work collaboratively ensured that everyone expressed their opinion. There was an openness and willingness to share experiences. Having an illustrator was an invaluable asset, a way to recap on previous meetings and what areas still required to be covered.
I volunteered to take part in a ‘Life, Work and Career’ guidance meeting. Prior to the meeting I received a brief, which enabled me to reflect on the career management themes in relation to my past and current experiences. During the meeting these themes were explored as were my thoughts and feelings about my life, work, and career.
After the meeting, I received a Career Development Plan which was a summary of our discussion and certainly was a sound reflection of this experience. We have subsequently met further, focusing on the career management themes of Self and Horizons. Thankfully, I agreed to take this opportunity. The first meeting opened my eyes to what career guidance has to offer, that there is so much more to consider than just paid employment. It gave me the space to explore what is important to me and what I have to offer. Two years on from my diagnosis I have reflected on the choices I have and have chosen to dedicate myself to challenging the stigma associated with a dementia diagnosis. I hope society and especially employers don’t continue writing people off who have this diagnosis, as in many instances with slight adjustments the person will continue to make a valuable contribution.”
This research theme is so important to understanding that dementia is not part of the natural ageing process and individuals with this diagnosis may want to access career services.