Meeting of the Parliament 01 March 2023 [Draft]
I very much welcome a debate on preparing a new dementia strategy, because it is a miserable, cruel disease that impacts on so many people, and it is increasing.
I have to confess that I am not a big fan of strategies unless and until they convert into practical changes. I have read the summary paper, although I am disappointed in the low number of individuals who responded. Citizen Space—I do not know how many of the public have heard of that—had just over 139 responses, and I believe that the consultation ran only from September to December last year. That seems to be a low response given the incidence of dementia, and quite a short response window.
Like others, I have had friends who have succumbed to dementia and have left their loving partner distraught after years of watching their loved one slip away. In the paper, there is the following quote:
“Dementia is like having a hole where someone used to be. They are gone, but you can’t mourn them, and you can’t move on. The lives of those closest to them is held in limbo, with guilt affecting every decision of every day.”
How true.
Here, the support of community, which is addressed in the paper, is crucial, as well as that of professionals. I shall give examples in my own constituency in a moment, but, on language, which the minister referred to, I make a plea that dementia should not be referred to as a “journey”—this is not “Strictly Come Dancing”. I baulked at referring to a dementia journey. Why do we not refer to the progress of dementia? That seems to be a bit more sensitive and respectful, but perhaps that is just me.
On the question “What supports work well for you?”, which was posed in the consultation, I share this reply from the paper:
“I had this huge desire to just to be able to be in the company of somebody who was going through the same process as me. Someone who was having similar experiences, who had similar hurdles to climb over and whose mountains to climb were just as high as mine. I needed to hear their experiences, I wanted to find out how they overcame them, how they overcame their difficulties.”
I will take members to Cowan Court in Penicuik in Midlothian, which is a place where carers have a cup of tea and a chat while their loved ones are being looked after. I have visited and sat with the carers as they had a very brief respite while their loved ones were looked after. We were there to chat, but for one woman it was all so traumatic that she could not speak because she was so tearful. Such is the unremitting stress 24 hours a week, seven days a week, together with anxiety as to what further damage the disease has done as each day and, indeed, each night passes.
I will give other examples of live initiatives. The Scottish Borders Council was the first local authority in Scotland to appoint a champion for older people and people living with dementia. As part of her role, Councillor Elaine Thornton-Nicol has been responsible for encouraging all her fellow councillors to undertake dementia-friendly training to better understand the needs of people living with it.
There is also a Borders dementia working group, which meets monthly in Galashiels. That is for people living with dementia and their carers who are interested in influencing local and national policy and in making the Borders more dementia friendly.
Another example is Peebles memory cafe, which meets twice a month in Firholm day unit, providing a friendly, supportive meeting place for anyone who is affected by dementia to socialise, share stories and enjoy a cup of tea with others.
Why am I giving those examples? I note that the minister referred to building on what is there and to “short-term deliverables”. When summing up, will the minister specify whether the Scottish Government has undertaken an audit of such initiatives across Scotland?
16:46