In Parliament

I spoke in Parliament yesterday on the Scottish Government's new Dementia Strategy which is being prepared. I shared some personal experience of dementia, as well as highlighting the views of some patrons of the wonderful Musical Memories, Springburn group in my constituency. I fed these views directly into the Scottish Government consultation.

You can read a summary of consultation responses from across Scotland in "A National Conversation to Inform a new Dementia Strategy for Scotland – What People Told Us" This can be found online here

https://www.gov.scot/publications/national-conversation-inform-new-dementia-strategy-scotland-people-told/

Full text of my speech

In 2015, my mum died from dementia at the Vale of Leven hospital. She had been in a care home for around a year before her passing, and I can still remember the denial when, as a family, we sat with mum and agreed that a care home was the best setting for her to continue with her life. I had not noticed the moment when I realised that mum’s decline was so physically and cognitively profound. Perhaps I was just in denial for some time.

I have no idea whether mum got any post-diagnostic support or what that involved. I do not even remember the first time the words “vascular dementia” were said out loud. Why do I say this? It is because my experience will not be uncommon in the slightest, and any dementia strategy must involve and encourage engagement with families, not as a one-off but on an on-going basis. Those living with dementia do not always share with families, and they seek to protect their family members despite that dramatic decline. Families are key partners.

I worked in partnership with the musical memories Springburn group as part of the Scottish Government’s on-going consultation process that we are debating this afternoon. I talked to the families of those living with dementia about the improvements that they would like to see in the system. Musical memories Springburn uses music, song and dance—from “Ye Canny Shove Yer Grannie Aff A Bus” to “Mack the Knife” and everything in between. The weekly gathering is hugely beneficial in enabling those living with dementia to laugh, smile and have joy—to have a life.

People told us what they wanted to improve and what they wanted to change. I heard that a network of community support provision and a range of activities are often available, if people know where they are, but there is not sufficient signposting to be able to access activities that boost people’s quality of life and social interaction. Quite often, there is a lack of appropriate transport or not enough staff who can be released from care homes or day centres to enable those living with dementia and their families to get to where the activities are. That is clearly an issue.

People mentioned staffing pressures and staff pay in a social care setting. On a cross-party basis, none of us disagrees in that regard—of course, there is an underlying issue—so we should not pretend that we disagree.

Some people spoke positively about the one-year diagnostic support for those living with dementia, but there was a concern that, although that support is delivered well, a cliff edge is created once that year passes. I also heard that quality respite care could make a real difference but that the delivery of such care is inconsistent.

There is a concern that, quite often, support is given in a reactive rather than proactive fashion. We heard that people should be supported to live; there should not be support only at crisis moments.

We need to ensure that the wider community is part of dementia-friendly communities. Day centres, garden centres and other places where older and frail people sometimes gather in large numbers are, of course, vital, but we must remember that those people are still part of our wider community.

I have not mentioned palliative care. In the last few days of my mother’s life, she was able to have a single room, and I was able to stay in that room with her for those last few days. We had a wonderful service—well, it was as wonderful as it could be when I knew that my mum was going to die—but not everyone gets that support, because it is not possible for the NHS to provide it all the time.

There is no such thing as a good death when vascular dementia is involved, because it is just horrible. However, there is the least worst passing, and I was fortunate and privileged to get that at the Vale of Leven hospital. We have to ensure that more people living with dementia get that kind of death. I hope that that is not too morbid a thing to say, but it is really important.