Hansard

I said at the beginning that every one of us in the chamber has probably been touched by a family member or friend who has had to live with dementia, which is not easy. In all that we do, we must look not only at those folks who are living with dementia, but at the families and others who care for them. I cannot be clearer than that. I have already said that, and I am sure that that will come out again and again in this afternoon’s debate.

This year, there will be continued investment in social care of £1.7 billion, to address the unprecedented pressures on our health and social care system. That will be used to provide interim care places and to continue to invest in the development of the primary care workforce. All those efforts will benefit people living with dementia and those who provide them with care and support.

However, the Government has the ambition to go further, and we know that that ambition is shared across the chamber and right across Scotland. There was a clear appetite from a broad range of dementia stakeholders for a new strategy that is clear on priorities and expectations, and which demonstrates that we have learned lessons from the pandemic and beyond.

We wanted to attempt a new kind of strategy development, building on the years of dedicated work by lived experience-led groups, such as the Scottish dementia working group, the national dementia carers action network, STAND—striving towards a new day—and Deepness Dementia Media, which have worked to share their experiences and improve policy and practice.

We recognise that people living with dementia, their families and those who provide them with care are experts by experience. That is why the strategy is being co-produced with a national dementia lived experience panel. That panel, which is made up of 11 people living with dementia and 11 care partners, broadens even further the opportunities for the voices of lived experience to be heard in the strategy from its outset and throughout its implementation.

I was delighted to listen to the group’s deliberations at its meeting last week, at which a draft of the strategy was considered. Having witnessed the meaningful co-production taking place between the group and Government, I am confident that the group’s contributions will move us towards a strategy that truly reflects its ambitions.

The initial draft that the group was considering is based on the responses to our national conversation, which ran from September to December last year. Our Government listened to people who told us what their good and bad experiences were and what they wanted to see in a new strategy. Much of that is reflected in today’s publication on what people told us.

I do not have time to reflect on everything that we heard, but I want to mention some things. People told us about the things that mattered to them and kept them well. Positive experiences of receiving support and care, centred around post-diagnostic support and continuity of care, were detailed. That last aspect—continuity—was seen as a key principle that enables trusting relationships to be built between people living with dementia, their families and carers, and professionals.

Communities in all their guises were an incredibly positive aspect of people’s experience of living with dementia. From local music groups to more formal meeting centres and dementia resource centres, community is the foundation stone of good, positive support and helps people to maintain a sense of connection, dignity and control beyond their diagnosis or carer status.

However, we must recognise that, for many, things did not always go the way that they should have. In relation to access to early diagnosis and support, people found that there can be a lack of awareness from professionals of what dementia is and its impacts on people and their families. People’s experiences were often of a healthcare system that was unable to meet their or their family member’s individual needs and preferences.

There is an urgent need to change societal attitudes towards people living with dementia and those who provide them with care and support. Dementia must no longer be seen as purely a death sentence, or something for people to suffer through. We heard that such attitudes make people who are living with dementia feel that they are no longer valued members of their community and that they cannot aspire to live fulfilling lives.

I will provide more detail on how we will go forward in my closing speech, but we are clear that delivering on the ambition that has been set out in our engagement will require a long-term vision and shared responsibility for delivery, which will be set out in a new strategy. That will be supplemented by clear, short-term deliverables that will be set out in subsequent delivery plans that will be agreed by the end of this year.

I look forward to a considered debate that will be personal to a number of folks in the chamber, on a topic that matters a great deal to so many and that includes the question of how we get the balance right between making the long-term change that our communities believe is needed and continuing to do right by people in the here and now.

If I may, Presiding Officer, I will end my speech with a voice of lived experience—in this case, that of a member of our national dementia lived experience panel, who said:

“Dementia is an unexpected crossroads in the highway of life. It doesn’t necessarily mean the end.”

I move,

That the Parliament welcomes the holding of a National Conversation to inform a New Dementia Strategy for Scotland in late 2022; recognises the key themes that have emerged from this National Conversation, including the need to change how dementia is talked about; supports the Scottish Government’s commitment to challenge stigma and promote and protect the rights of people with dementia as valued citizens of Scotland, to value the importance of grassroots community projects to individuals, families and local communities, and to build on Scotland’s world-leading commitment to post-diagnostic support to ensure that all people with dementia have the opportunity to benefit from it; supports the need for a long-term vision and set of priorities to improve the experiences and quality of support and services for people living with dementia and those who provide them with care and support; recognises the value of established lived experience groups, and welcomes action by the Scottish Government to build on this and work with the National Dementia Lived Experience Panel and other key stakeholders to develop a new Dementia Strategy for Scotland.