A national conversation to inform a new Dementia Strategy

My dad was diagnosed with dementia about four/five years ago. My two sisters & I looked after him whilst working full time. That was challenging for all of us. Nearly three years ago he very quickly became unable to be on his own during the day whilst we were working. He started wandering and was picked up by his neighbours and brought home. He was admitted to an elderly mental health ward where he stayed until we could find him a care home. When he was diagnosed, the Older Adults Mental Health Team visited every few months to check on him. As one of his carers, I found it almost impossible to access any support services for carers. I didn't know where to start. He'll be 90 on his next birthday.

The Older Adults Mental Health Team were good. They visited my dad every few months until he was admitted to hospital and arranged for him to visit a day unit once a week.

Better information for carers at the point of diagnosis. Although the Older Adults Mental Health Team were good, they were not in a position to support carers, so I had no idea where to start to get information on how to understand what was going on with my dad and what adaptations I should be making for him. I also believe in dying with dignity and that dementia should be considered as a terminal illness. I had a traumatic experience with my dad after he'd been diagnosed and he knew that the disease was taking hold of him. My dad talked about his fear of losing competence and living with dementia. That harrowing conversation still haunts me. I know my dad would not want to live like this if he'd had the chance to make the decision to die with dignity.

Availability of information & supporting groups for carers at the outset of a diagnosis would have helped me greatly, to know where to go to ask questions as my dads health deteriorated. Having a law in Scotland that allows people to make decisions about their lives in the event that they're diagnosed with a terminal illness.