About me

My name is Margaret. I was diagnosed with Frontotemporal Dementia at the age of 51. Like many other people with dementia it took a while to get a diagnosis, and I was still in full time employment whilst going through this process. Losing my job was an upsetting experience for me and I am sharing my story to help others who may find themselves in my situation.

Margaret

My working Life 

I was fortunate to have worked since I left school, I had a varied and enjoyable working career. The last place I worked, was a large, well known organisation, and I was there for 11 years in total, although I had worked at a lot of other jobs before this. Up to that point I had always held jobs at director level, I was a P.A. and did admin work as well, I always multi tasked!

In 2015, I was working as a secretary when I started noticing problems with my memory. I spoke to one of my sisters about my concerns, she said 'oh it's probably just an age thing but if you are that worried then go and see your GP', which I did. I underwent a series of written tests. While this was going on, I spoke to my line manager to keep her in the loop and she was very understanding.

When my line manager later told me that an appointment had been made for me at Occupational Health I thought it was related to a hearing problem I had. What actually happened was when I got there I was given another written test which I obviously didn't do correctly as I was told there and then that I couldn't go back to work - I had to go straight home. I was thinking 'I can't go home, I have stuff to do!' I was really shocked and had to get my sister to come and meet me as I was quite upset.

What happened next

Apart from being annoyed about not going back to work, I was worried about how to tell other members of my family as up until this point I had only told one of my sisters. My family couldn't have been more supportive though. Throughout this time of not working I still had to have meetings with my line manager and the HR department. As I was a union member I contacted my union rep to see if the correct procedure was being followed. That's when I was told that if it had been a different condition I would have been kept on but because it was a 'mental thing' I had to stop working. So, on 1 June 2015, I stopped work, which was upsetting as I had worked since leaving school.

 
"When I contacted my union rep, I was told if it had been a different condition I would have been kept on, but because it was a 'mental thing' I was let go. That was a good few months before my final diagnosis"

My diagnosis

So I was getting my head around not working anymore and at the same time everything else that was happening to me. From the neuropsychology test it was determined that something had happened in my brain and I was referred to the neuropsychology department at the Southern General, and that's where I was given various scans and a lumbar puncture. The consultant was nice but I didn't get a final diagnosis until the summer of 2016. A fair amount of time had passed, and although I received a couple of months pay from work, it was really difficult dealing with the Department of Work and Pensions. I had never been unemployed before.


"I really do think that employers should be made to think more about how they treat staff when they have been given a diagnosis like mine"

What could have been done differently?

Apart from being shocked at losing my job, I was really upset as well. In myself I knew I could still have worked, even if it was in a role at a lower grade. My employer never explored these options with me though. On one hand I was an important part of the team, and then on the other hand it was just 'cheerio'. It felt like there was nothing I could do about it though. Wherever you work, your employers know what a good worker you are (or not). Instead of just a blanket 'no you can't work' they could have suggested another role but they didn't.

 
"Dementia is treated differently from other conditions and there is an inequality there. For other conditions adaptations are made, but with dementia it's like you can't work anymore"

Moving on

I still miss work. I enjoyed going to work, meeting up with colleagues and going to meetings. I'm fortunate that I have a great family and support network, but it was upsetting to me that I couldn't work. It made me feel awful. The first three years of my diagnosis were hard but family, friends and my faith have helped me get over that. Despite what happened at work my colleagues are still in touch.

I have always loved music and I an still involved with a choir. Music is my 'go to' if I am feeling stressed. 

I joined the Scottish Dementia Working Group in 2019. It has given me the opportunity to have my voice heard, to campaign for the rights of people with dementia, and to meet people from all walks of life with experiences like my own.