Meeting of the Parliament [Draft]

Meeting date: Wednesday, March 1, 2023

Official Report 1155KB pdf

---

Dementia Strategy

The next item of business is a debate on motion S6M-08053, in the name of Kevin Stewart, on dementia strategy. I invite members who wish to speak in the debate to press their request-to-speak buttons.

I call on Kevin Stewart to speak to and move the motion for up to 11 minutes.

16:02  

I am very grateful for the opportunity to lead today’s debate on the progress that we have made in developing a new dementia strategy for Scotland. That includes the running of our national conversation late last year, where we reached hundreds of individuals, communities and organisations.

We are now able to publish a summary of what people told us and to outline how we are working with our national dementia lived experience panel to develop a new story for dementia policy in Scotland. The story will be one that builds on our world-leading commitments, such as to a minimum of one-year post-diagnostic support and to a policy that is person-centred and has our communities at its heart.

I know that members across the chamber will be keen to hear the progress that we have made and to contribute their own views on what we as a country should aspire to do to ensure that everyone living with dementia, and those who provide them with care and support, are enabled to live fulfilling lives and access their choice of care and support where and when they need it.

There are approximately 90,000 people living with dementia in Scotland. We know, based on predicted demographic changes and trends, that that number is likely only to grow, with one in three people born now likely to go on to develop dementia. It is a neurological condition that is degenerative and that affects cognitive functions, and for which there is currently no cure. Although it is a condition most likely to affect older people, that is not exclusive, and more people under the age of 65 are being diagnosed with younger onset dementia.

We know that the effects of this brain disease, as it advances, can be traumatic for people living with the condition, their families and those who provide care and support. That came through strongly in our national conversation. However, it was also emphasised to us that dementia is a condition with which people can live for decades and that they can continue to live well at home as active citizens who contribute to their communities. As a Government, we hope that the debate reflects on the range and diversity of experience of those contributions.

Improving care and support for people living with dementia and those who care for them has been a major ambition of the Scottish Government since 2007. Since then, dementia services have been transformed, thanks to excellent contributions from staff who work across health and social care and the public, third and independent sectors. Those developments have been driven by our three previous dementia strategies and a subsequent Covid-19 action plan, each of which prioritised a continuous journey towards more integrated, person-centred care, as well as the maintenance of a good quality of life for longer for people living with dementia. In addition, we have had a focus on modernising specialist dementia national health service care and, more recently, on supporting the brain health agenda.

Our estimate shows that integration joint boards spent £2.6 billion on dementia in this financial year. That is an increase of around 13 per cent since 2014. In addition, we have provided additional national investment in dementia post-diagnostic support this year and last year, and we have written to local service partners to indicate that additional investment will continue in 2023-24 and beyond, subject to parliamentary approval being received for overall budgets. That allows us to deliver on our world-leading commitment to provide everyone who is diagnosed with dementia in Scotland with a minimum of a year’s post-diagnostic support.

Alongside that, we have invested £1 million over two years, via Age Scotland, to boost and sustain community-led support, such as the support that is provided by the excellent Kirrie Connections meeting centre, which I recently had the pleasure of visiting. We will continue to do vital strategic national work on reforming the health and social care system to make sure that joined-up, person-centred care is available to enable people to live well, in the place that they choose, for as long as possible.

It is now almost four years exactly since my mother passed away with dementia. The minister has mentioned this point once, and perhaps he will go on to elaborate. Obviously, it is very important that the individual who has dementia is given appropriate care—that is mentioned in the feedback summary that we have received today—but my sister and I did not really know how to deal with my mother’s dementia. In effect, she faded away in front of us; it was a hollowing-out of our much-loved mother.

What I am asking the minister to bear in mind is the fact that families who have family members with dementia need proper professional support, too. I hope that that will be baked into the future strategy.

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.

16:14  

Dementia is the on-going decline of brain functioning, typically presenting as memory loss, the slowing of thinking speed, the loss of mental sharpness and the mixing up of words. Dementia often leads to trouble with speech, low mood, anger and difficulty with carrying out basic daily activities.

The most common type of dementia is Alzheimer’s disease, which is progressive, with symptoms developing gradually over many years until eventually they become severe. Symptoms include: personality changes, such as someone becoming aggressive, demanding and suspicious of others; hallucinations and delusions; and low mood and anxiety. Partners, family and friends can all become strangers.

All too often, close family members sacrifice their own wellbeing to ensure that a loved one gets the best care that they can give. As a general practitioner, I often hear about changing roles in relationships, such as children having to become the parents and take responsibility for financial matters, or a partner having to be the main carer. It can all be quite overwhelming, as Stephen Kerr highlighted when he talked about his mother.

As we get older and our health changes, it is really worth considering setting up continuing and welfare powers of attorney. That involves having a conversation with loved ones about their needs and wishes, because it can be difficult to do that once there is a diagnosis of dementia.

According to Public Health Scotland, as of 2015, up to 90,000 people in Scotland were affected by dementia, of whom around 3,000 were under the age of 65. The number of people dying with dementia is rising. Fifteen years ago, there were 3,200 deaths but the number has doubled in just a decade. Marie Curie expects that, by 2040, dementia will be the main underlying cause of death, with 19,200 deaths per annum—a threefold increase in 17 years.

I think that all members can agree that we need a more robust dementia strategy in place, with actions and measurable outcomes, and that that should be a priority for Government. Dementia policy cannot be tinkered with.

I also think that we can all support the principle that people who are living with dementia must be supported to live their lives as they want to live them, for as long as they can do so, and that, when they approach the end of life, they should have access to the most appropriate care, advice and support. Access to palliative and end-of-life support should be a significant component of our dementia strategy.

A key priority of the Scottish National Party Scottish Government’s previous dementia strategy was the extension of access to post-diagnostic support. However, delivery was poor. Fewer than half the people who were newly diagnosed with dementia were offered post-diagnosis support. The Western Isles had the worst rate, at 28.5 per cent.

The SNP Government also announced that the management of an individual’s care and support would sit in primary care and be led by a dementia link worker, so that people would receive timely aid. Then it cut £65 million from the primary care budget. The SNP has been in charge of primary care services for 15 years, but 42 per cent of GP practices report that demand substantially exceeds capacity, and 34 per cent of practices have at least one GP vacancy. The British Medical Association estimates that Scotland is short of 312 full-time-equivalent GPs, and, according to the Auditor General for Scotland, the SNP is nowhere near on track to increase the GP headcount by 800 by 2027.

That is the SNP in action: big on announcements, light on delivery. The SNP-Green Government has cut £70 million from social care—services that offer crucial support to those suffering from dementia.

Whoever is health secretary or in the minister’s chair after 27 March must get real. Failures in the context of primary care, delayed discharge and social care have all had severe consequences for the quality of the care on which people with dementia and their families rely.

We need to find solutions. That entails political decisions about policy and resources. Platitudes will not wash, and nor will self-congratulatory statements from those on the Government benches.

I hope that Sandesh Gulhane appreciates that all politicians in this Parliament will get real. We have just concluded a budget process in which lots of parties made demands. Dementia is a personal issue for me, as it is for Stephen Kerr. It is not enough to express platitudes from the Opposition benches about how things should be better on a substantial matter that is personal to all of us, without saying where one penny would come from. I find that profoundly disrespectful to people who have died from or who are living with dementia and their families.

The national care service would be a great place to start. One of the SNP’s leadership candidates is making promises about money that he is going to find from I do not know where.

At least now, the SNP looks set to bin its widely criticised national care service plan, as we have just heard, and the associated £1.7 billion spend. Despite rigorous defences of the SNP’s flagship policy from members around the chamber and members on the Health, Social Care and Sport Committee, the SNP leadership candidates are retreating from that position and leaving other SNP members exposed and fleeing for cover. Humza Yousaf says that he will overhaul the plan, despite defending the policy many months ago. Kate Forbes says that Scotland may not need the flagship policy at all, and she is the finance secretary. Ash Regan would immediately pause the plan if she leads SNP members and becomes our First Minister.

Perhaps Bob Doris should think about that and reflect on it in his speech. It seems that the ministers in the chamber today are the only ones who are staking their political reputations on the policy—or have they U-turned, too?

This year, more than 6,000 Scots will die with dementia, and, in under 20 years, the number of deaths will rise to more than 19,000. We need to do better to support people now and act to ensure that Scotland can support many more people with dementia tomorrow. We look forward to taking that forward with whoever has the job come the end of the month.

I refer members to my entry in the register of members’ interests. I am a practising national health service doctor.

I move amendment S6M-08053.1, to insert at end:

“; recognises that improvements in social care, primary care and delayed discharge would make a huge improvement to the quality of life of people with dementia, and calls on the Scottish Government to make these improvements at pace.”

16:21  

I am sure that most, if not all, members in the chamber have been impacted by dementia in some way. When I was a student, I worked in a care home as an activities organiser. I know that colleagues will struggle to see me as the home’s redcoat, but in many ways that allowed me to get a better understanding of people living with dementia, and to build relationships with their families and understand something of the illness and the support that is required to ensure that we work hand-in-hand with families to deliver the care and support that is needed.

It is estimated that 90,000 people in Scotland live with dementia. As we heard, new research from Marie Curie estimates that the number of people dying with dementia as the primary underlying cause of death will rise by almost 200 per cent by 2040.

I begin with the areas of consensus that exist in the debate. Our public health approach to dementia must recognise and respond to the increasing prevalence of dementia across society. That is why that we, in the Labour Party, believe that it is imperative that we have a person-centred approach to dementia that focuses our energies on empowering people with dementia to continue to live fulfilling lives with access to additional care and support when they need it.

Any strategy for dementia must, first and foremost, recognise that people who live with dementia are human beings just like you and me. They have social needs and are supported by their loved ones, who, as we have heard from members, are often struggling in their own ways to cope and find the space to deal with the illness. We must explore how we make our communities more dementia inclusive and dementia friendly, so that people with dementia can live at home for as long as they are able to do so. We support the work of the dementia-friendly communities network, which brings together hundreds of dementia-friendly communities that have made meaningful changes to local villages and towns across Scotland to create inclusive spaces for people with dementia.

When the Government launched its national conversation on a new dementia strategy for Scotland, last autumn, we welcomed that development, and we take seriously the responses of people with lived experience, clinicians, third sector organisations and the family carers whom I have spoken about.

What is clear from the conversation is that people who live with dementia and their families need to see action. They need to see tangible signs of progress from the Government, because national conversations become devalued unless they result in substantially improved outcomes for patients. We have had a national conversation, but have we really been listening to what has been said? Despite encouraging rhetoric, the Government’s delivery record has been less than impressive.

The SNP has been in power for 15 years and the first dementia strategy was published 13 years ago, yet people with dementia and their families still face a postcode lottery for diagnosis and post-diagnostic support. The most recent statistics, which are from 2019-20, show that only 42 per cent of people who are newly diagnosed with dementia are referred for post-diagnostic support. Indeed, during the pandemic, people with dementia and their families were at the centre of that maelstrom and they did not receive support in their lives often enough. In some ways, that reflects the Government’s failure to learn lessons since the implementation of the first national dementia strategy, in 2010.

I recognise what Mr O’Kane said about accessing post-diagnostic support in certain places. The Government has put in an extra £3.5 million per annum to ensure that folk get the support that they need. Beyond that, our proposals on national quality standards should get rid of the postcode lottery that he mentioned. I recognise that it is not good enough that in some places people get very good help and support while folk who are not that far away from them do not.

I recognise what the minister said about that investment, but I think that it is fair to say that that money was the restoration of previous cuts. Also, we have already heard about the various flavours of a national care service, so we are not sure what the future of the bill will be or how it will address the postcode lottery in the way that the minister suggested. We are in a wait-and-see situation right now. The reality is that, no matter how well intentioned the dementia strategy is, it cannot and will not succeed in achieving its aims until the Government gets serious about tackling the systemic issues in the NHS and social care.

That is why Scottish Labour has been calling on the Government to end the indignity for dementia patients who are stuck in hospital when they could be back living in their house or care home. That issue could be resolved if the Scottish Government took the necessary action to increase the availability of care packages. At present, provision is patchy and access to suitable packages depends on where someone lives. All members’ inboxes show examples of people who are in real need, so we need real action.

The SNP promised to scrap non-residential care charges in its manifesto, as recommended by the independent review on adult social care, and it is time that it took action and delivered on that commitment.

The Scottish Government must deliver for the social care workforce, because it is the backbone of ensuring that people get the care provision that they need. We have consistently called for an immediate pay rise to £12 per hour, rising to £15 per hour. If we are serious about rewarding the workforce and increasing staff retention, we have to make that move. Week after week, the minister has derided calls from those on the Labour benches for £12 per hour, rising to £15 per hour, for social care workers, claiming that it was unreasonable and unaffordable, yet this afternoon in the Daily Record, his colleague Kate Forbes, the finance secretary, stated her commitment to deliver as First Minister what she steadfastly opposed and refused to introduce as finance secretary: £15 per hour for social care workers. It is amazing what U-turns can be performed when there is an SNP membership to be won over. Given the Government’s track record on delivery, I will not be holding my breath.

The challenge for the Government is that it needs to close the gap between the rhetoric and what is delivered to ensure that people living with dementia and their families and carers have an improved quality of life. It is time for the Scottish Government to get serious about delivering for people with dementia, and that starts by fixing the omnicrisis in the NHS and social care.

I move amendment to motion S6M-08053.1, to insert at end

“; regrets that the current NHS workforce challenges are impacting on dementia care, with timely access to diagnosis and post-diagnostic support becoming a postcode lottery, and calls on the Scottish Government to publish a plan for ending the high level of delayed discharge among dementia patients, and to improve support for people with dementia by removing non-residential social care charges and increasing the availability of care packages, supported by efforts to grow the social care workforce by delivering an immediate increase in pay to at least £12 per hour, and a plan to increase pay to £15 per hour by the end of the current parliamentary session.”

16:28  

I am pleased to speak for the Liberal Democrats in this important debate. As we have heard, dementia is a devastating and often tragic condition that exacts a particularly cruel toll on those living with it and those who love and care for them. It is often referred to as the long goodbye. It is the slow disappearance of cherished memory, the gradual loss of the loved one you once knew and their physical, mental and spiritual deterioration into a shell of what they once were. I cannot imagine how painful it must be to visit a brother, sister, parent or grandparent to find that they no longer recognise who you are.

Despite improvements in care and treatment over the years, this devastating illness is not going away. Indeed, it is estimated that, by the year 2025, more than 1 million people in the UK will have a dementia diagnosis and that almost all of us will know somebody who is living with the condition.

As Scotland’s population steadily ages, so, too, will the number of dementia sufferers grow. As the number of dementia sufferers rises, a renewed focus and a commitment to sustained funding are essential. Therefore, I would like to turn to the Government’s dementia strategy.

It is right that the Government has reached out to those with experience of the condition in order to inform its new strategy. Its previous strategy has not been updated since the pandemic, so a renewed focus, which takes account of the impact of the Covid years, is vital. As with every condition, early diagnosis and intervention are critical. The interruption to services that was caused by the pandemic has meant that many people have received a dementia diagnosis much later in their experience of the condition, so their condition is more progressed and their needs more acute at the point of diagnosis than would otherwise have been the case. The Government’s strategy, therefore, needs to recognise the particular and unique challenges that the recently diagnosed cohort will face, and to ensure that they and their families have access to a breadth of support.

Research conducted by Marie Curie has found that, by 2040, 10,000 more people each year will be dying with palliative care needs, and a large proportion of those are expected to be dementia sufferers. I echo Marie Curie’s calls for the Government’s new dementia strategy to include a commitment to support people living with dementia to access the tailored palliative care that they need.

We need to ensure that people are supported to live as they want to for as long as they can—that is dignity. The Government’s strategy must include an improvement in accessible and tailored end-of-life support for people with dementia, with an eye on how the ever-increasing need can be met. That must include care provision in people’s own homes and care homes as well as hospices. The previous dementia strategy included a commitment to improve palliative care, but that must now be backed by a clear and measurable implementation plan.

Does Alex Cole-Hamilton agree that there must also be respite for families, as it allows those suffering dementia to stay in the home but is also important in terms of the dignity of the families that surround the person and provide most of their supportive care?

Absolutely. Martin Whitfield is right to bring the attention of the chamber to the fact that much of the unpaid care force in this country is exploited by the state through the love that they have for their families. They are on their knees and they are in want of a break. Therefore, respite absolutely has to be part of that strategy.

The strategy must also align with and inform the upcoming palliative and end-of-life strategies—

Will the member take an intervention?

I am afraid that Mr Cole-Hamilton is in the closing part of his speech.

The Government’s motion correctly highlights the vital importance of care in our communities. One may wonder, then, why it is intent on disempowering the providers of local care in those communities by creating a vast and unnecessary bureaucracy that represents the ministerial takeover of social care in our country instead of rewarding social care staff with better pay and conditions. The Government should scrap those plans today. SNP leadership hopefuls are seemingly lining up to do exactly that, so there is hope yet that social care staff will get the support that they need now, not five years down the line.

The actress Phyllis Logan, a long-time supporter of dementia charities, said:

“If you find yourself caring for a relative with dementia, the chances are you will need help.”

We must also recognise the toll that this condition takes on the families.

Mr Cole-Hamilton, could you please conclude?

I will end here, Presiding Officer.

Although the Government still has a lot to do, we will support the efforts that it is making.

Before we move to the open debate, I note that some members who, I believe, wish to speak have not yet pressed their request-to-speak buttons. I invite them to do so now.

16:33  

I take this opportunity to highlight the growing need to improve support for those with dementia. Alzheimer Scotland advises that, worldwide, the number of adults living with dementia is on course to nearly triple to 153 million by 2050. There are around 90,000 people with dementia in Scotland, and it is estimated that that figure will increase by 50 per cent over the next 15 years.

I put on record my appreciation of the work of Alzheimer’s Scotland, including the work that it has done with Age Scotland in the about dementia forum, and I praise the support that it has given to my constituents through the Clydebank and Bearsden dementia resource centres. I also thank the staff and volunteers of Carers of West Dunbartonshire and Carers Link East Dunbartonshire for providing an outstanding level of support to carers in my constituency.

It is no surprise that most individuals who replied to the consultation were people who are caring or have cared for someone with dementia. Of course, dementia is having a disproportionate impact on women, because they are predominantly the carers, so we must make sure that their needs are also fully recognised in the new dementia strategy.

From my time as convener of the West Dunbartonshire health and social care partnership, I know how important it is to involve those who are impacted by dementia in the design of support and services to meet their needs. That is why I welcome the approach that the Scottish Government is taking to design the new dementia strategy. It will work with people with lived experience, so that the voices of people with dementia, and of their families and carers, will shape the new strategy. The responses to the consultation need detailed consideration, but we can already see a range of issues to be addressed by the new strategy. Those include the need to change how we talk about dementia.

The way that we talk about dementia is extremely important, and one of the things that has come out loud and clear from the panel is the use of language. Already today, at least one member has talked about dementia sufferers. We all need to start talking about people who are living with dementia, so Ms McNair made a really good point about language.

Minister, we are really tight for time.

Ms McNair, I can give you the time back.

The issues to be addressed by the strategy also include the gaps between policy and practice, the postcode lottery impact on the provision of support—which has been spoken about—workforce issues, education and training, and the trauma of diagnosis.

The change that is needed was summed up by one response that said:

“In my humble opinion, focus has to move away from entertaining people with dementia to empowering people with dementia by putting the foundations in place to allow someone like me to be more independent which in turn will enable me and my family to contribute both socially and financially to society and to live well as a family with dementia.”

From the responses that were shared with us, we know that a means of overcoming self-stigma following diagnosis was being able to talk to others who had gone through the same process.

Last night, on the Alzheimer Scotland website, I read “Tony’s Story”, which is a blog about Tony‘s experience with dementia. The Tony in question is Tony Worthington, who was the MP for Clydebank and Milngavie from 1987 until 2005. Since his diagnosis, he has been active in influencing policy through his involvement with the Scottish dementia working group. In recognition of the importance that sharing his story could have in tackling stigma, he has spoken publicly about his experience. It did not surprise me to see him doing that, because I have always greatly respected him and his desire to seek justice for his constituents. I put on record my admiration of his sharing his experience for the benefit of others.

Scotland has a track record of supporting people with dementia, as is shown by our commitment to provide immediate support in the first year after people receive a dementia diagnosis. The new dementia strategy is a real opportunity to build on and improve the provision of support and assistance. It is also a chance to shape change in a way that those who are impacted by dementia want.

I advise members that there is no time in hand, so any interventions will have to be incorporated into your allocated time, which will also need to be adhered to.

16:38  

My wife and I were carers to two elderly parents with dementia. I have experienced the condition from both sides—as someone with caring responsibilities and as someone who saw at first hand how two wonderful people’s lives were increasingly impaired by a loss of independent function. I have also seen how social care staff in the north-east have cared gently and attentively for people who live with dementia, and I pay tribute to them today.

The Scottish Government needs to back up its rhetoric on valuing social care workers, because they are tired of hearing platitudes. There has clearly been some progress in laying the groundwork for a new dementia strategy, and that is to be welcomed. It will affect upwards of 90,000 people with dementia in Scotland, as well as their carers and, as we have heard today, their families.

Dementia symptoms can cause serious confusion and profound frustration for the people who live with them, and they can be very distressing for carers and loved ones. Their experiences need to be addressed in any framework, as we have also heard today.

This will also be the fourth such strategy since 2010. It is important to point out that the number of patients aged 65 or over has increased by 20 per cent during that period, as the Royal College of General Practitioners has emphasised to us. However, the reality is that the current systems and structures that are in place across health and social care simply do not have the capacity or the resources to rise to the monumental task ahead. We just are not equipped to deal with it.

We have an ageing population in Scotland and serious national health service workforce challenges, from a lack of general practitioners to shortages of community psychiatrist nurses and allied health professionals. We have a chronically underresourced social care system and a social care recruitment crisis contributing to delayed discharge and bed blocking in our hospitals. It is shocking that a patient in NHS Grampian in my region had their discharge delayed by 2,312 days. However, that is just the reality of the system.

The proposed national care service is deeply flawed and simply kicks the can down the road. We need immediate action. The Royal College of Physicians has also emphasised the wide variation in the number of consultant geriatricians across the country, with the north of Scotland having one geriatrician per 65,000 compared with the national average of one per 36,000. That must change.

Meanwhile, less than half of people who are newly diagnosed with dementia were offer post-diagnostic support during a vulnerable and potentially frightening time. Support should be person centred, accessible and available, but that is not the reality on the ground. We owe it to people living with dementia to get the fundamentals right to ensure that they have access to early diagnosis and post-diagnostic support, as well as appropriate palliative care as they near the end of their lives, as Marie Curie has called for. They should not have to bear the brunt of the dementia tax and the worry about how to cover the cost of their care.

We have had more than a decade of dementia strategies—it is time to start making a real difference.

16:42  

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  

Our population is, on average, becoming older with each passing year. We must come to terms with the increased prevalence of dementia and related illnesses. Dementia can be a harrowing diagnosis and one that many of us dread, but we can do a lot, including providing people with dignity. Currently, unfortunately, we are not near that standard.

An issue such as dementia requires serious attention from the top of Government, yet the headlines that dominate are about the internal war that is going on in the SNP and the flawed national care service plan, which is not worthy of the name. In politics, and as politicians, we must do better. We must seek to discuss the issues that matter to people in their everyday life: health, education, care and communities.

Three national dementia strategies have been published since 2007 and a fourth is planned. If we take a close look at the previous plans, we see that a great deal has never been realised, including effective local delivery plans and key commitments on post-diagnostic support. We can also see the effects of those broken promises in the day-to-day care of patients and the toll that it takes on those who look after them.

To tackle dementia, we need a well-funded care service with well-paid carers. There is no getting away from that. My party repeatedly calls for a decent pay rise for social care workers.

The challenge that we must face up to is to provide care for people where and when they need support in a way that works for them. I am well aware that that is easier said than done, but launching strategy after strategy is not a substitute for serious action. I am very concerned that we are two years into this session of Parliament and there has been little of the latter.

I want to briefly mention the developing international evidence base that highlights the benefits of allied health professionals’ early interventions, supported self-management and rehabilitation as a means of supporting people to live well with dementia for longer.

Despite all the innovative, creative and evidence-based work, it is evident that access to allied health professional services remains inconsistent and challenging. At times, they are simply not available. More must be done to raise the profile of and to improve access to those essential AHP services. In relation to dementia services, access to AHPs is most definitely a postcode lottery.

Since the first dementia strategy was published 13 years ago, delayed discharge has become a huge problem, leaving a lot of dementia patients in a state of distress and prolonged discomfort. In many areas, people are victim to a further postcode lottery, in which their experience of provision might be vastly different from that of someone just a half-hour drive away. Will the new strategy solve the problems, or will it just play lip service to them? The public are perfectly justified in asking those questions.

Many of us will know of a friend, family member or colleague who has been diagnosed with dementia and will have witnessed the intolerable toll that it takes on them and their families. Would it not be some support for them if the Government delivered on its commitment to remove all non-residential care charges? Using the delayed national care service plan as an excuse for inaction on that is just not good enough.

Let us give people something to be positive about. Let us give those who care for people with dementia a wage that they can build a life on. Let us take some of the cost of care away from those who can barely afford it. Let us stop the postcode lottery.

You need to conclude.

We are not asking for much. We are just asking for the Government to live up to its own commitments.

16:50  

I welcome the debate and, indeed, the Scottish Government’s upcoming dementia strategy.

My first job after I left school was in a care home, and my first placement as a student nurse was in the care of the elderly module. My experience helps me understand that there has been lots of knowledge development and changes to care delivery over recent decades for people living with dementia.

The commitment from the minister that the Scottish Government will work with people with lived experience of dementia to deliver the strategy, which keeps Scotland at the forefront of dementia policy, is also welcome.

Improving care and support for people living with dementia and those who care for them has been a major ambition of the SNP Government since 2007. Since then, dementia services have been transformed, with excellent contributions from staff working across health and social care and the wider public, third and independent sectors.

Just a fortnight ago in Stranraer, I spoke with a dementia nurse specialist who shared the view that, although progress has been made, we can go much further. I was also interested to hear from her that young-onset dementia is increasing in Scotland, and I ask the minister to say in closing whether the Scottish Government is addressing that.

The Scottish Government’s previous dementia strategy recognised the importance of taking a person-centred and flexible approach to providing support at all stages of the dementia journey, from work on diagnosis through all stages of the illness and in all care settings. Those principles are important.

The Scottish Government wants everyone with dementia to live with good quality of life for longer, at home or in a homely setting or in another place of their choosing, where they are connected to friends, family and community. I therefore ask that the next national dementia strategy should look at self-directed support and, in particular, at what stage a person has to be in their dementia journey to receive self-directed support. At the moment, various social work departments apply SDS in different ways, and I have had several local cases in which SDS decisions were reversed. SDS can be a crucial tool. Therefore, I ask the minister for a commitment that SDS will be looked at as part of the strategy and that its use nationally can be evened out and maybe become a wee bit fairer.

The Scottish Government wants more people living with dementia to be able to live well at home for as long as possible. Last year, a major forum on housing and dementia published a series of recommendations on living well with the condition. Housing has a huge role to play in supporting people who are living with dementia to feel safe and able to play an active role in their local communities as their needs change.

Loreburn Housing Association in Dumfries and Galloway has built dementia-friendly housing alongside an innovative employment hub on the site of the former Garrick hospital in Stranraer. Young people living at the youth foyer are expected to be in education, an apprenticeship, employment or training, and they have access to volunteering opportunities in the community. The youth foyer also offers community access areas, a state-of-the-art conference facility, breakout spaces and access to wifi. The aims of the site are fantastic and, as the Scottish Government takes forward the new strategy, I encourage it to look at that model. I invite the minister to visit Stranraer—I would be happy to join him.

I know that this afternoon’s debate is short. My focus has been on self-directed support, but I know that we could have had a longer debate about dementia care. I will close there.

16:54  

As we have heard, more than 90,000 people in Scotland live with dementia, and the figure is due to rise by 50 per cent in the next 15 years. We need to establish now how we will continue to support people, and we need to plan how to staff services to ensure that we have an appropriately qualified workforce in the coming years.

It is helpful for people to know who is at increased risk before they experience symptoms of dementia. Many people will have seen news articles about the actor Chris Hemsworth, who, after being tested as part of a show that he was taking part in, discovered a genetic factor that puts him at as much as 10 times the normal risk of developing dementia. He has spoken about how that has changed his outlook on his career. His honesty and reflections on the risks to him have undoubtedly helped in raising awareness of the condition. We need more awareness raising, and I will touch on that later if I have time.

I am not saying that genetically testing everyone is the way forward, but we need more research. It is hugely important that we support further work on who might be at greater risk of certain kinds of dementia. Once someone has been diagnosed, it is important that we offer person-centred support. Age Scotland’s briefing raises the issue of post-diagnostic support and the varied take-up of that offer. Scotland guarantees a year of post-diagnostic support to anyone who receives a diagnosis of dementia, but fewer than half of those who were diagnosed in 2019-20 received that support. Notwithstanding the pandemic, it would be interesting to understand why that was and to tackle that issue. We also need to ensure that those who are caring for or supporting someone with a diagnosis are adequately supported. These are life-changing diagnoses, and the path is different for everyone.

In that context, peer support could be of high value to those who need it. Many of the organisations that have sent briefings have called for that. I will highlight a few examples of successful projects in my region. As we all know, doctors are prescribing time in the outdoors and in gardens to alleviate the mental health problems caused by ill-health, isolation, anxiety and loneliness. The effects are no different for those with a diagnosis of dementia. In 2015, the dementia garden at Airbles Road in Motherwell was developed as a specialist garden for people in the community who have memory issues. The weekly gardening groups facilitate health and wellbeing benefits for hospital in-patients, out-patients and community volunteers, many of whom face the greatest risk of health and mental health inequalities. The dementia garden has been a lifeline during a difficult few years, as it has given participants the opportunity to do some gardening, thus improving their mental health.

Motherwell Football Club Community Trust and the Falkirk Foundation take part in the popular football memories project. The project, which was pioneered by Alzheimer’s Scotland, enables groups of people with dementia to come along and enjoy reminiscing about old games, old players and any other fond memories and interests in football, while their carer can either join in or enjoy a cup of tea and a blether with other carers. There are now more than 100 community-based football reminiscence groups in Scotland.

Public awareness of dementia and the ways in which it presents would benefit many of those who are on the dementia journey. Recently, I have heard from many people who have dementia or other illnesses and who feel that they are less able to participate in everyday society or do something as simple as take the bus, because of others’ attitudes. People with communication issues might not be given time to respond, and other people are judged on their outward appearance when it comes to whether they should be able to sit in accessible seats. Those are just some of the examples of everyday barriers.

We need to be more tolerant and make people aware of the potential issues that some people face. I hope that the minister will consider an awareness-raising campaign to make people more aware of the condition and, I hope, combat some of the issues that people face. We have an obligation to ensure that people with dementia have the tools to live well and that their families have support to deal with whatever comes their way.

16:58  

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.

17:03  

I thank the minister for outlining the strategy in his speech.

As we have heard, dementia can be a profoundly distressing condition that involves friends and family members watching their loved one progressively deteriorate over a sustained period. More than 90,000 people in Scotland are living with dementia today, and it is alarming that that number is set to rise by almost 50 per cent by 2040. As Alex Cole-Hamilton said, everybody in the Parliament and beyond will know someone who is living with, or who has been lost to, dementia.

The Scottish Government has a duty to provide those living with dementia with access to the very best standards of care and support in the final years of their lives, as is provided by the NHS for those living with other debilitating medical conditions. The final years of a person with dementia’s life should be years of comfort and support for both them and their family and friends. However, in Scotland, about 10,000 people living with advanced dementia today are responsible for funding their own care, which can cost up to £69,000 a year. Third sector organisations including Marie Curie, the Alzheimer’s Society and care home relatives Scotland have called for an end to that policy, which cuts into the final testament of a person with dementia. That is money that people have saved over the course of their life to pass on to their loved ones or to provide legacies relating to important causes that are close to their heart. They will lose such opportunities because of their condition.

Cathie Russell from Care Home Relatives Scotland said:

“It is the most regressive tax in the country because it can take 100 per cent of everything you and your spouse accrued over a lifetime of hard work.”

According to Marie Curie, four out of five people living with frailty and dementia do not get the palliative care that they need, with health and social care workers facing challenges accessing and undertaking palliative and end-of-life care training in care homes and anticipatory care settings.

We have repeatedly heard from members of the Government about how a national care service would be a solution to all those problems. Sadly, however, those working in social care do not believe that to be the case—and nor do the leadership contenders in the SNP’s present election.

The Government’s current proposals do nothing to resolve the issues that are prevalent across our social care system. In fact, they will divert money away from the front line and from much-needed dementia care. The Royal College of Physicians of Edinburgh has said that dropping the national care service plans would present the Government with the opportunity to re-evaluate its dementia policy to better support patients and their families, as well as addressing unequal access to care and taking action to increase the social care workforce.

When he sums up the debate, the minister might give some reassurance or clarity to those in the social care sector amid suggestions that the Scottish Government may be delaying stage 1 of the bill in order to further engage and think again—or is the Government simply delaying the bill in time to bring in a new leader, such as Kate Forbes, who may decide to pull the plug on a national care service altogether?

A recent report by Unison found that 71 per cent of social care staff believe that the changes to social care as proposed would be bad, with 77 per cent having concerns about the implications for their job security and 64 per cent concerned about the impact on their pension. That is from people who are putting in a power of work, who are very uncertain about their future beyond a national care service.

The Scottish Government must urgently review its approach to dementia care to put those living with dementia and their families at the heart of that approach. It should divert money away from its plan for a national care service towards much-needed dementia care in Scotland today.

17:07  

The first cross-party group that I joined when I was elected in 2016 was on dementia. More than 90,000 people live with dementia in Scotland but, as we have heard, that number is set to rise by 50 per cent in the next 15 years.

Dementia touches the lives of so many of our constituents, and I was always immensely grateful for the contribution made at meetings of the cross-party group by those living with dementia and their loved ones, including Tony Worthington, whom Marie McNair mentioned. Their experiences were invaluable, and at times heartbreaking. I do not think that I fully appreciated the challenges that they faced until a loved one was diagnosed with Alzheimer’s and I became their carer. I realised just how unpredictable, how frustrating and how utterly cruel dementia is, how helpless we can often feel and how precious every single minute of every single day is with those we care for.

Time is not on the side of those living with dementia, and a new strategy in the future, six years after the previous strategy was published, will come too late for many. Those people need our support now; the support given at the moment is not enough. We did not provide it during the pandemic for residents in care homes, 80 per cent of whom have dementia. We did not provide it when we failed to provide testing and personal protective equipment for care home staff and residents, when we discharged untested hospital patients into care homes and when we failed to do more to facilitate safe visits, especially for those with dementia, who were cut off from their loved ones and only able to hug them through plastic sheets.

We are not providing that support now, as another crisis engulfs our care services. A third of beds in my local hospital in Dumfries are occupied by patients whose discharge is delayed by a lack of carers and care home places. More than 3,000 hours of assessed care are not being covered, and the number of care homes and care home places in the region has been cut by a third over the past decade.

Instead of paying our care workers a decent wage, the health secretary’s sticking plaster is to pay health boards to discharge patients, not back into their homes, where they want to be, but into?care?homes, where they often do not need to be. In rural areas, a lack of care?homes means that those places are often miles from the patient’s family. Imagine how devastating it is for someone living with dementia if they are not able to go home to familiar surroundings where they feel safe, and are instead sent to a care home, cut off from their loved ones.

We are also not providing support for those living with dementia by failing to deliver on the existing dementia strategy commitments. Patients across Scotland are still waiting too long for diagnosis and, as we have heard, fewer than half of those newly diagnosed were referred for a year’s post-diagnosis support, despite the fact that that support is supposed to be guaranteed.

We are not delivering our commitments to deliver free personal care for under-65s diagnosed with dementia, secured through Frank’s law and the inspiring campaign by Amanda Kopel, never mind ending the scandal of the fact that people with advanced dementia still have to pay care charges when the only reason that they need that care is their health condition.

Unless we tackle the care crisis and unless we properly resource the commitments in the current dementia strategy, we will not be able to deliver the future strategy that we all want to see. That strategy needs to put those living with dementia—and, crucially, their carers—at its very centre. It must break down the stigma of dementia by supporting initiatives such as dementia-friendly communities, such as the one in Prestwick in my region, and it must enable us to recruit specialists in geriatric medicine, psychiatry and neurology, whom we need but are still short of. Ultimately, the strategy must ensure that everyone living with dementia can make the most of the precious minutes that they have, along with their loved ones.

Thank you, Mr Smyth. I call Jackie Dunbar, who is the final speaker in the open debate, after which we will move to closing speeches. Everybody who has participated in the debate should be present for those.

Jackie Dunbar, you have up to four minutes.

17:11  

Thank you, Presiding Officer.

Only those living with dementia, their loved ones and their carers fully know the complexities and nuances of dealing with it. The voice of experience is a crucial part of the Scottish Government’s policy-making process, and ensuring that that is factored into decision making as early as possible is key to improving services across the country. As such, that is the first step towards a new dementia strategy.

Folk living with dementia, their families and carers have been given the opportunity to spell out what is important to them, what needs to change and how to build on the first dementia strategy from 2010. As the minister has already outlined, the national conversation included a series of online and in-person discussions to make it as easy as possible to contribute, and the responses will feed into the new strategy to be published in 2023. That is being driven by the national dementia lived experience panel, which will provide tangible ways to improve the lives of those living with the condition.

We have a world-leading commitment to provide immediate support in the first year after people receive a dementia diagnosis. An estimated £2.2 billion is spent on dementia annually and, from last year, the Scottish Government allocated an additional £3.5 million to boost post-diagnostic services. In addition, the Scottish Government is investing £1 million over two years via Age Scotland to boost and expand community-based resources. That work is, of course, welcome, but, as we move forward with the refreshed strategy, we must continue to further enhance care and support.

Improving care and support for folk with dementia and those who care for them has been a major ambition of the SNP Government since 2007. Since then, dementia services have been transformed, with excellent contributions from staff working across health and social care, the wider public sector and the third and independent sectors.

The Scottish Government’s previous dementia strategy focused on the quality of care for folk living with dementia and their families through work on diagnosis. It recognised the importance of a person-centred and flexible approach to providing support at all stages of the dementia journey, through work on diagnosis and all stages of the illness, and in all care settings.

I will touch briefly on football and sport. The Scottish Government supports the Scottish Football Association’s stance and new guidance against heading the ball during practice sessions on either side of match day. The Scottish Government is aware of the Scottish FA’s on-going assessment of growing evidence of the link between head injuries and the earlier onset of dementia. Any action that can be taken to help reduce head injury and the potential increased risk of developing dementia is welcome. That is particularly important in rugby, and other footballing bodies, sporting bodies and nations need to look at what the Scottish FA is doing and make changes to support the health of their players. That should form part of the Scottish Government’s strategy.

Finally, I thank the Aberdeen dementia resource centre for all the work that it does each day to support folk and their families who are impacted by dementia in the city. The centre supports folk with dementia at any stage of the illness. The team are fantastic and deserve a huge thanks for all that they do.

I again welcome the debate and the Government’s dementia strategy.

17:15  

It has been truly moving to listen to so many insights and often heart-wrenching testimony from colleagues about the impact of this cruel disease, and to realise just how widespread it truly is in our communities.

I was reflecting on the numbers that were mentioned, with around 90,000 of our fellow Scots living with dementia. That is equivalent to a town the size of Paisley, and if we were to then factor in the people who have caring responsibilities, it would very quickly grow to a city the size of Aberdeen and Dundee combined perhaps. A very big number of our fellow citizens are living with the condition in one way or another, either directly or through having a caring responsibility.

We owe it to all those people to build the resilience in our healthcare system to support them through what can often be an extremely distressing, disorientating and difficult experience, as members today have mentioned. Stephen Kerr, a member for Central Scotland, described his mother as fading away. The member for Edinburgh Western referred to the long goodbye and the very difficult process of trying to come to terms with the condition.

One of the biggest challenges is being able to share that with someone initially and deal with the diagnosis. It was concerning to hear from Gillian Mackay, a member for Central Scotland, that the number of people who get that post-diagnostic support is so low. I think that only around 42 to 43 per cent of people access that support. We do not understand why that is. Maybe it is because the symptoms are mild at the initial stage of diagnosis, or perhaps it is something else—perhaps there is not the capacity in the system, for example. We need to understand more about what is going on.

We also need to improve people’s resilience, particularly when they are preparing for the future. Issues such as the lack of power of attorney often end up becoming an impediment to discharge from hospital, which causes further issues in the system. Those are areas of deep concern.

Capacity in our care homes has been mentioned, particularly in relation to workforce challenges, as my colleague Carol Mochan, a member for South Scotland, described. We need to pay care professionals appropriately in order to build capacity in our system and allow people to have a proper professional career, which will in itself build the network that is so sorely needed. It was reassuring to hear the member for Skye, Lochaber and Badenoch describe that as a key plank of her bid to become the next First Minister. I hope that the ministers sitting before us in the chamber today will agree with that endeavour; indeed, it has been a long-standing policy of the Labour Party.

Our amendment is intended to be constructive and to add extra depth to the Government motion. I hope that the minister will accept it in the spirit in which it is intended. Indeed, I believe that the member for Midlothian South, Tweeddale and Lauderdale mentioned that she was not a fan of strategies without clear constructive actions. We need to hold the Government to account on the delivery of clear and tangible benefits.

It is a symptom of our own progress as a nation that, as we see life expectancies increase and triumphs in medical science improve things in so many ways, other conditions, such as neurodegenerative disorders, become more of a challenge to deal with. We need to get to grips with that across our entire healthcare system. We need to change the centre of gravity of the traditional national health service model from a hospital-centric one towards one that is based on prevention in communities. That is the crux of what many members have said. The member for Glasgow Maryhill and Springburn, for example, spoke about the need to support community-based activity. I was particularly touched by his reference to musical memories in Springburn.

I have often heard it said that, when a person dies, a library is burned, but that can often be a very slow burn for people over many years. What a wonderful treasure trove of insights, knowledge and love we can share through that process. Although there is never really a good death in those circumstances, the idea is that it can certainly be much better than it is often experienced in Scotland today.

One example of that that has taken off quite remarkably in Scotland is the viral Facebook page, “Lost Edinburgh”, which was created by a gentleman in Edinburgh. It is widely viewed across Scotland. There is a similar page in Glasgow, “Lost Glasgow”, which is run by a friend of mine, Norry Wilson. The man who started “Lost Edinburgh” did so as part of an attempt to make a DVD of old pictures of Edinburgh so that his dad could talk about them with him. His dad could not remember things that he had talked about 10 minutes earlier, but he could talk in great detail about his childhood and his relationships. Through “Lost Edinburgh”, he got an amazing insight into his father’s younger years, which he would not otherwise have experienced. Building such a means of interaction is quite a powerful experience. It is an amazing, priceless archive of knowledge that we can share with one another, which will add great quality to relationships.

There is much that we can do to build community resilience and to support people well. Many members have mentioned the need for respite and support for the people who care for people with dementia. My mum told me about her experience, growing up, of the tragedy of her uncle, who had to care for her aunt, who suffered from dementia to the extent that he could not take it any more and ended his own life. To be constantly triggered by the loss of the person who is dearest to you in your life in front of your eyes every day must be a deeply distressing experience. It is essential that we provide the capacity to support people in that position.

We are prepared to support the Conservative amendment as well as the Government motion, and we hope that we can work together to build resilience in the Scottish healthcare system.

17:21  

I am pleased to have the chance to close the debate for the Scottish Conservatives. As we have heard, dementia is a debilitating condition that more than 90,000 people in Scotland live with. It has been among the leading causes of death in Scotland for several years, and research by Marie Curie found that, by 2040, the number of people dying from dementia, as the main underlying cause of death, is expected to rise by a staggering 185 per cent.

In his opening remarks, the minister reminded us that there is no cure for dementia and that people can live with it for decades. It is really important that we give those people the best possible quality of life. No one disagrees that people in social care with dementia have complex needs. We have heard testimony from members across the chamber who have direct experience of loved ones in that position. People in social care with complex needs must often pay more than other residents. Even though some Scots pay up to £69,000 a year for social care associated with dementia, the Scottish Government has taken no direct action on the issue. Marie Curie, the Alzheimer’s Society and Care Home Relatives Scotland have called for an end to that policy and the Scottish Conservatives have pledged to review the fees that people who are suffering from dementia have to pay for social care.

As well as sharing her personal experience, Tess White mentioned the fact that we have an ageing population in Scotland, but we also have a chronically underresourced social care system and a social care recruitment crisis. We hear that in many of the healthcare debates that we have in the chamber. She said that we are not equipped to deal with the situation, yet the SNP Government has cut £65 million from primary care and £70 million from social care, both of which offer crucial support to people who are suffering from dementia. My colleague Sandesh Gulhane talked about dementia link workers; that is a tangible, practical example of what that money could fund.

Statistically, one in three of us will be directly or indirectly impacted by dementia in our lives. People with dementia are still very much part of the community, and we must treat them with dignity and respect. I recognise the minister’s comments about the language that is used. However, the reality is that if we ask families about “living with dementia”, we find that they do not recognise that term. I am sorry, but they feel as though they are suffering with dementia due to the reduced hours of care, the shortage of care staff, the absence of overnight care, the lack of respite provision, which Alex Cole-Hamilton and Martin Whitfield mentioned, and the lack of local council facilities. The minister has stated that support should be person centred, accessible and available but, sadly, that is not the reality on the ground.

I have heard the terms “suffering from dementia” and “living with dementia”. The reason that I like to use the term “living with dementia” is that, in my personal experience, family members never know the memories that they have gained until their loved one is no longer with them. When we look back, we hold on to those memories of the last few months of their lives. When a loved one is no longer with us, it is vitally important for family members to have those memories of when they were living with dementia.

I recognise that that is what we want, but, unfortunately, what is being felt on the ground is some way from that. We need to accept what is actually happening.

My colleague Craig Hoy said that the final years of a person with dementia’s life should be years of comfort and support for them and their friends and families, which goes some way to addressing Mr Doris’s point. We have spoken about the changing roles in families in which a family member has dementia.

Mr O’Kane spoke about developments in his area that help communities to have inclusive spaces and allow people to stay in their own homes for longer, which is important.

Local initiatives are often vital for those suffering with dementia. I want to talk about a brilliant organisation in my region that is close to my heart. Dementia Friendly Pentlands is a voluntary organisation covering Juniper Green, Currie and Balerno, where we have an ageing population and an older demographic. It supports families who are living with dementia and it was set up by two inspiring people: Allister McKillop and Kay Latimer.

The idea was born out of a desire to give people who are living with dementia a stronger presence in their local communities by building communities that are safe, supportive, strong and resilient enough to support people living with dementia and their carers. Creating a community where all are included, where everyone can experience a sense of belonging and where all can express themselves is critical to the efforts of Dementia Friendly Pentlands.

Christine Grahame spoke passionately about many initiatives in the Borders.

Dementia Friendly Pentlands has a community cafe called the Meeting Place, which has just celebrated its one-year anniversary. Rather than placing those living with dementia in a dementia-only environment, the Meeting Place actively encourages all those aged 65 and over to drop in, which ensures that the cafe is truly inclusive. Although I am not over 65, I visited the cafe last summer for its platinum jubilee party, which was also attended by young people from the local primary school. There were lots of cakes and there was singing. On other occasions when I have been, there has also been curling. It is not played on ice but with little discs and things—it is good fun. The point is to make everyone have fun in the moment and forget some of the challenges that they are facing.

Let us not lose sight of the fact that serious action is needed to improve outcomes and boost research into this condition. The Scottish Government must review its approach to dementia care and pull out all the stops to tackle this horrible disease. We will support the Scottish Government’s motion, but having a world-leading commitment is not enough. Carol Mochan said that having strategy after strategy is not an alternative to action. Commitment is not enough; the issue is about delivery and helping those with dementia now.

I call Kevin Stewart to wind up the debate.

17:23  

I am grateful to all those who participated in the debate, and I thank the organisations that helped to inform it with their briefings.

In 2022, the World Health Organization declared dementia a global public health priority. As we have an ageing population, Scotland’s new dementia strategy will be everyone’s story, and that has been reflected in the range of contributions to the debate. Getting a new dementia strategy right requires us to listen and to take in all views on how we best do that. Throughout the process, we have sought to reflect what people have told us, and that will include today’s deliberations.

This is where I will stray, completely and utterly, from the remarks that I planned to make today. Some of the contributions were immensely important, and all of us here have to continue to listen a little bit more.

It is good to hear that the minister is listening. Significant concerns about a national care service have been expressed. Will the minister comment on the report that is on the BBC online at the moment, according to which stage 1 of the National Care Service (Scotland) Bill will be paused until after the SNP’s leadership election? If that is—

I think that I have got the gist, Presiding Officer—

If what is reported is the case, is it also the case that the national care service is a dead duck?

I will come to that in a minute. I want to make some important points about the strategy.

We have had a debate about the use of language. It is not me who is asking people to change their language here; it is people who are living with dementia and the organisations that represent them. I suggest to members that they might want to look at the dementia language guidelines on the Alzheimer Scotland website. It is essential that we get such things right.

I have a feeling that some folk might have been listening in to the conversations that I had the other week with the lived experience panel, because many of the points that members have made in the debate were made by folks with lived experience. For example, Gillian Mackay talked about an awareness-raising campaign, and one of the members of the panel said to me, “We need an awareness-raising campaign, similar to the one you recently ran on autism.” I agree. That meeting was last week. This week, I have been discussing with officials how we can go about finding the resource for and putting in place an awareness-raising campaign, so that communities and people out there understand dementia. That is important.

Members talked about other aspects that the panel raised. Emma Harper talked about young-onset dementia. We have a lot of work to do there. She also mentioned housing. I am glad to see Shona Robison here at the end of the debate. When I was housing minister, we worked on making changes in the context of specialised housing design to take account of dementia, and Ms Robison is carrying on that work, which is really important when it comes to keeping folk at home.

The minister talked about the importance of keeping people at home. Does he accept that, if we are to do that, there have to be good-quality care packages and we need to retain care workers in the system by paying them £15 per hour? Does he agree with the finance secretary’s current position, which is that she would support £15 per hour for care workers? He did not agree with the approach in previous exchanges with me in this chamber.

I believe in the collective responsibility of Government. What I will say is this: the Cabinet Secretary for Health and Social Care and I have done all that we can to increase resourcing for care workers and we will continue to do so. If we are to ensure that we have the right care system for the future, we have to go further on pay and conditions.

Will the minister give way?

I will finish my point.

We have to go further on pay and conditions, which is a reason for having a national care service, to allow for sectoral bargaining. A lot of the issues that have come up today are pertinent to what we are trying to do with the national care service. I wish that folk could have listened to the lived experience panel, who were very much in favour of the changes—or even joined me today at the Glasgow Disability Alliance meeting, which was attended by 100 to 200 folk who want to see the change that the national care service would bring.

Will the minister give way?

Will the minister give way?

I will not give way, because I am finishing this point, which Mr O’Kane brought up.

On a point of order, Presiding Officer. This afternoon, and not for the first time, the political editor of the BBC has released news on social media about a significant Government U-turn, which is apposite to the debate, which the minister in charge was asked a direct question about in an intervention from Craig Hoy and which he is singularly avoiding in the chamber of the Scottish Parliament. Will the minister take the opportunity to establish the veracity of the claims by the BBC that the National Care Service (Scotland) Bill will be delayed?

Minister.

I never ignore—

I will address Mr Cole-Hamilton’s point of order. The member refers to footage that I have not yet seen. I point out that it is a matter of courtesy and respect that responses should address the specific details of questions put.

Thank you very much, Presiding Officer. I have not seen the footage that Mr Cole-Hamilton talks of either. I have written to the convener of a committee of the Parliament outlining a number of things, but I do not know whether that is being reported. I always respect the Parliament and let Parliament know what we are doing.

Let me cover the other points about the national care service, because a number of the important issues that have come up today, including the right to breaks, which Martin Whitfield talked about, the right to visits, which someone else mentioned, and the end to postcode lotteries, are all part of the improvements that we propose as part of the national care service. If members want the right to breaks and the right to visits, we need to make those changes.

I am nearing the end of my time. [Interruption.] I will be here for a while in that regard—do not worry. [Interruption.]

Let us hear the minister.

We have had a fairly good debate, but politics has come into play at the last minute. I have to say that that is disappointing, because I had hoped to go over more ground on what the voices of lived experience have told us, and what the panel is doing to help make life better for everyone. I know that that panel will hold our feet to the fire and that it will work tirelessly with the Government and other partners to create and deliver a new strategy that befits the efforts of the group and beyond.

That concludes the debate on dementia strategy.