‘Dementia does not mean the end of my world’

Carol is a member of the European Working Group of People with Dementia from Scotland. She tells us about the ups and downs after she was diagnosed with vascular dementia in her late 40s.

“I was 49 when diagnosed and thought my life was over. I had no clue what illness it was, neither did my family. I was given a huge book and told I would have a good six months. I thought I was going to die or end up in a home. Dark times.

That was 11 years ago and although there have been big changes, good days & bad, I have learned to keep as busy as your body allows you. It helps big time. I’ve had done my stint of sitting about the house and everyone keeping an eye on me. It was a horrible time. That’s what the doctors told my family.

Sadly my marriage broke up because my husband was terrified but we stayed friends, closer than before. Sadly he got cancer and I went back to care for him. It was hard but I managed to keep him at home until he passed.

So getting older with dementia does not mean the end of my world like I thought. I am involved with different working groups. I feel it’s a privilege and keeps me well. I use laughter to get me through rough times and when you think of it a lot of not nice things come with age.“

Carol, Scotland

Read also:

Helen’s testimony about the need for a human rights-based approach to dementia

Our thematic focus on ageism and disability