Dementia (Alzheimer Scotland Report)

– in the Scottish Parliament on 4th June 2019.

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Photo of Linda Fabiani Linda Fabiani Scottish National Party

The final item of business is a members’ business debate on motion S5M-17177, in the name of Richard Lyle, on the Alzheimer Scotland report “Delivering Fair Dementia Care For People With Advanced Dementia”. The debate will be concluded without any question being put.

Motion moved,

That the Parliament welcomes the Alzheimer Scotland report,

Delivering Fair Dementia Care for People with Advanced Dementia

; believes this to be an important contribution to the understanding of advanced dementia and the care needed by people in the Uddingston and Bellshill constituency and across Scotland who are living with the condition; is concerned that the report finds that, too often, they are not able to access the healthcare that they need, and acknowledges the view that they should receive the expert health care services that they need, on an equal basis with other progressive terminal conditions, which should be provided free at the point of use.

Photo of Richard Lyle Richard Lyle Scottish National Party

As convener of the cross-party group on dementia, it gives me great pleasure to facilitate the debate. I thank each and every member who signed the motion and those who will speak tonight.

I highlight the work of the cross-party group, which is doing an admirable job in advancing the debate—some members of the group are in the public gallery. Since its formation, the cross-party group has expanded the number of its contributors, pooling from a wide range of stakeholders including organisations and individuals. Particularly welcome is the committed contribution from the growing number of people with dementia and their carers, such as those from the Scottish dementia working group.

I commend and underline the courage of the people who have participated in our discussions despite the difficult and deeply personal nature of the contributions. We set aside time for personal stories, to which I listen intently. The group has been, and continues to be, the most helpful resource in aiding the Scottish Government to understand the needs of sufferers and their carers and families, and I thank the officials from the Scottish Government who attend our meetings.

I also congratulate Alzheimer Scotland on its excellent report, “Delivering Fair Dementia Care For People With Advanced Dementia”, which provides an accurate analysis of the current situation in Scotland. It is right that people in the early stages of dementia are supported to live as well and as independently as possible, with a focus on social and family support and on community connections.

More and more people with dementia are living longer and are therefore reaching the advanced stages of the illness. Advanced dementia is characterised by increasing, complex and rapidly changing needs. As the Alzheimer Scotland report sets out, we need to understand that dementia is a set of symptoms that are caused by an underlying illness. The most common cause is Alzheimer’s disease, but vascular dementia is also quite common, and there are more than 100 other dementia-causing diseases.

As the Alzheimer Scotland report shows, Scotland has made great strides in improving dementia care in recent times—most notably, since improving dementia care was made a priority by this Government in 2007. The progress has been forged by hard work and effective contributions at every level—the contributions of practitioners and policy makers have been pivotal.

However, there are people with advanced dementia who are not receiving the care that they need, which means that their families and even their committed care staff are struggling to support them appropriately. That is because the current system does not recognise advanced dementia as a health condition. Dementia should not be considered as a side effect of ageing, but as the degenerative disease that it is. We must try to seriously address that issue. Happily, reports such as Alzheimer Scotland’s “Fair Dementia Care” are now bringing together all the evidence, which informs us that dementia is a degenerative disease.

How can we respond to that fact? People with advanced dementia need to have the medical nature of their condition recognised and to be provided with the health and nursing care that they need. The harsh reality that we face is that the current situation creates inequality for thousands of people who are living with the advanced stages of the illness. They might not receive the care that they need, despite the fact that they would get such care if they had a recognised health condition. That means that not only are their needs not being met, but they are being charged under the banner of social care for any care that they get. Compared with people who have other progressive terminal conditions, people with dementia face a disproportionate financial burden.

As they are currently structured, such social care charges are confusing to service users. There is a lack of transparency, information on the charges is often not readily accessible on council websites, and the charges vary wildly from local authority to local authority. The lack of consistency and transparency in the financial assessment process is a major concern. Most people who seek information do not understand how the process works, how the charges that they are asked to pay are calculated, or why, unlike with other progressive conditions, they are subject to charges for the care that they need. I hope that the Scottish Government’s forthcoming adult social care review will address those issues, and I am sure that it will.

Many people will be wondering about the cost implications of achieving this most necessary social progress, but it seems pivotal to remind members that this important issue cannot, and should not, be discussed only in terms of pounds and pence. Behind simple considerations of the costings are the more than 90,000 people who live with dementia in Scotland, who, along with their carers, also need consideration.

For example, we must think of Elaine. Elaine’s mum, Pat, has been in the advanced stages of dementia since 2015. Her mum had been going to a day care centre and a nursing home for respite breaks, but such inconsistent changes to Pat’s environment were causing more harm than good by disrupting her mood and making her care even more difficult for Elaine at home. In the end, Pat had to move into a residential home and was there for 10 months, at her own cost. In that 10-month period, she had to visit accident and emergency departments 11 times because her care home could not meet her health needs. On her last visit to hospital, she was admitted for three weeks due to a fractured skull, but she still had to cover the cost of her place at the care home during that time, despite the fact that NHS Scotland was meeting her health and residential needs. Elaine says:

“If my mum had access to the free healthcare on the same basis as those with other progressive illnesses, she would’ve had a better quality of life which would have saved the numerous crisis interventions which were not only costly in the stress placed on her and her family, but financially to her and to the health and social care system. The emotional impact of being a carer and watching someone you love deteriorate is hard enough without the added worries of how they are going to pay for care.”

After hearing Elaine’s story—one of many like it in our country—it is clear that, as a nation, we need to stand up to address this important issue now and to ensure that all stakeholders understand its importance and the need for rapid action.

The time is no longer ripe for examining possible solutions, as the solutions have already been highlighted by the Alzheimer Scotland report. Now is the time to act and we owe it to our fellow citizens to provide a fair system that gives them the same care and security as sufferers of other illnesses, thus helping to improve the quality of their daily lives. As the motion states, people with advanced dementia should receive the health care services that they need, free at the point of use, as would be the case with any other health condition. Our health and social care services should recognise that the needs of people with advanced dementia are health care needs and put in place services and structures that enable those needs to be met.

Dementia, and advanced dementia in particular, will be a major challenge for our country in the coming years. As I pointed out earlier, the debate concerns many women and men who, thanks to the recommendations of the Alzheimer Scotland report, would see their living conditions improve.

It should be remembered that the right to a dignified life is a fundamental right for the elderly, which is the demographic most affected by dementia and advanced dementia. Article 25 of the Charter of Fundamental Rights of the European Union states:

The Union recognises and respects the rights of the elderly to lead a life of dignity and independence and to participate in social and cultural life.”

We must recognise the vital and imminent nature of the issue and do everything possible to meet the expectations of those who are directly or indirectly affected by it.

Photo of Jeremy Balfour Jeremy Balfour Conservative

I congratulate Richard Lyle on securing the debate on his motion. I welcome the Alzheimer Scotland report, which is very helpful and lays out where we are and where we should be going.

When I was a local councillor in Edinburgh, I had the privilege of being a director of the Corstorphine Dementia Project and I saw the effects that early dementia had on individuals and families. Richard Lyle helpfully pointed out the definition of advanced dementia, which many people have. In many ways, one of the encouraging things is that people are now living longer with the condition, thanks to medical science, better care and a better understanding of the condition. Although people are living longer, that brings greater pressure—not necessarily on the person who has this horrible condition, but on their family, friends and others who are supporting them.

Richard Lyle pointed out the crux of the issue that the Parliament and our society need to consider when someone has advanced dementia: the care that is required and the cost of that care. I was interested to learn that the report calls not for social care charging to be abolished, but instead for equality. That is the crux of the problem.

As a former councillor, I believe that local authorities should be able to make their own decisions. However, if we read the report and look at what is happening across the 32 local authorities, there is no equality—instead there is difference in both the type of care provided and its cost. We need to have a grown-up debate about the extent to which we should set national standards and guidelines and the extent to which we should allow local authorities to make local decisions. That will be a difficult question to answer. Surely, in a country that covers a large geographical area but has a fairly small population, we need consistency. Whether I live in Orkney, Shetland, Dumfries or Edinburgh, the type of care that I get and its cost should be consistent.

As Richard Lyle said, there is a lack of transparency on web pages about what people need to do and what services are available. It must be possible to make information easily accessible to families when someone gets to the point at which they need care. We need to look at all those issues, and we need to do so quickly. I look forward to seeing what the Scottish Government proposes later this year. A balance must be struck between what is set by national Government and what is left to the 32 local authorities.

As we continue to design our social security system, we need to ensure that people with advanced dementia are not left behind in relation to people with other conditions, particularly in the context of the attendance allowance and the personal independence payment.

I congratulate Richard Lyle again and look forward to the rest of the debate.

Photo of Kenneth Gibson Kenneth Gibson Scottish National Party

I congratulate my colleague Richard Lyle on securing today’s debate and on his years of work as convener of the cross-party group on dementia, which has considered how we support people in Scotland who are impacted by advanced dementia.

Both of my grandmothers died after suffering from dementia, and my mother has Alzheimer’s and has been in a care home for the past five years, so I have a personal interest.

I thank Age Scotland for its briefing and I thank Alzheimer Scotland for its excellent briefing and for establishing the fair dementia care commission, whose report forms the substance of Richard Lyle’s motion. The commission’s purpose was to establish how advanced dementia is defined and recognised in practice, to estimate how many people in Scotland are living with the condition, and to examine how advanced dementia care is financed. That is immensely important work, given that more than 90,000 people in Scotland are living with dementia, a condition that is often rooted in progressive illnesses, such as Alzheimer’s disease, which have no effective treatment and no cure.

The effects of dementia on the individual and their loved ones and carers are profound. Carers live daily with the physical, emotional and financial burden that the illness brings.

Advanced dementia is a frequently used term that is rarely consistently defined. To ensure that people with the condition get support, it is imperative that we recognise and respond to the healthcare needs that arise during the advanced stage. The fair dementia care commission proposes a concrete definition:

“Advanced dementia is associated with the later stages of illness when the complexity and severity of dementia-related changes in the brain lead to recognisable symptoms associated with dependency and an escalation of health care needs and risks.”

That is a robust definition, which should be incorporated into policy and practice. The commission goes on to say that healthcare needs and risks include

“neuropsychiatric symptoms, disorientation, communication problems, multiple functional impairments, immobility, incontinence and weight loss.”

Because advanced dementia has not been consistently defined, it is difficult to estimate how many people in Scotland live with the condition. It is possible that 35 per cent of people with dementia who are resident in care homes and about 7 per cent of older people who receive non-residential social care have advanced dementia.

The figures illustrate just how many people are affected by the inequalities in dementia care that the commission highlighted. The commission said in its report:

“People with advanced dementia do not have equal access” to healthcare, compared with people who are in the advanced stages of other illnesses. That is largely because advanced dementia is met with a social care response, which means that people with the condition are disproportionately subject to social care charges, despite their needs being largely health and nursing care related, as Richard Lyle said.

The approach is costing people with advanced dementia an estimated £50.9 million a year in social care charges. The situation is compounded by the variation in charges across local authorities and a social care system that can be complex to navigate.

The commission makes key recommendations in its report, to enable society more adequately and fairly to meet the needs of sufferers and accord them dignity. It is significant that it asks the Scottish Government to recognise that people with advanced dementia have not just social but healthcare needs, which should be met with health and nursing care that is free at the point of delivery.

I understand that Scottish ministers are examining the report and are keen to meet the commission to discuss its recommendations. I trust that the Scottish Government will respond fully to the concerns and questions that are raised by the report, with a view to implementing the recommendations. As the chair of the fair dementia care commission, Henry McLeish, highlighted:

“Scotland is internationally recognised as having some of the most progressive dementia policy.”

Indeed, Scotland is home to ground-breaking research in developing treatments to slow down dementia and improve the quality of life of people who are living with it.

We cannot afford to stand still in tackling this great medical and social challenge. Thankfully, work is well under way right here in Scotland. Just yesterday, we heard the excellent news that Alzheimer’s Research UK has awarded £160,000 to the UK dementia research institute at the University of Edinburgh to fund its investigation into the treatment of nerve damage caused by Alzheimer’s. We must ensure that the progress made in understanding advanced dementia and its symptoms is reflected in our policies and practices. Once again, I thank Alzheimer Scotland and Richard Lyle for pressing the Scottish Government to do just that.

Photo of Monica Lennon Monica Lennon Labour

Like colleagues, I congratulate Richard Lyle on securing this important debate and on the work that he leads on in the cross-party group on dementia. I looked on the Parliament’s website, and a long list of individuals and organisations are involved—well done to them all. I thank Alzheimer Scotland for its report, which we are debating tonight. The report gives us a much-needed and valuable insight. I also thank

Health and Social Care Alliance Scotland for its briefing.

There are more than 90,000 people living with dementia in Scotland, and the number is rising. There will be few families whose lives remain untouched by the disease. We have just heard about Kenneth Gibson’s family experience, and I know that the debate will be important to many people in my Central Scotland region who are living with dementia or caring for a loved one with the disease.

There has been fantastic work in recent years on living well with dementia. That is welcome and positive for people who have been diagnosed recently with the disease. With the right support, people with dementia can live well for months and years in their community and with their loved ones. However, when the disease becomes advanced and increasingly complex care needs develop, it is important that people are given the care and support that they need. Sadly, as we know from the Alzheimer Scotland report, that is not happening for people with advanced dementia.

It is simply unacceptable that people in Scotland are not getting the healthcare that they need, particularly for this terminal disease. Access to healthcare is not something that people living with dementia—or their families—should have to fight for. Everyone should have equal access to healthcare, free at the point of need. That is why Labour established the national health service more than 70 years ago. I agree with colleagues that the Scottish Government must do everything that it can to ensure that people always receive the specialist care that they need.

I know from my work as a councillor, when I held surgeries in Lanarkshire Carers Centre in Hamilton, and from working with organisations, that friends and families care for their loved ones for as long as possible, but with a progressive terminal disease such as dementia, there usually comes the difficult point when more support is needed from social care services. The impact of that decision for carers should not be underestimated; it can be truly heartbreaking for carers and families.

Social care can provide additional support or round-the-clock care when required, and that gives families lots of comfort, but it is not right that social care is being used when healthcare should be. Aside from the negative impact on health, it also means that people with dementia face a disproportionate financial burden compared to people with similar conditions. It is telling that one of the most common issues Alzheimer Scotland is asked about is the cost of care. As Richard Lyle described, social care charging policies can be confusing and lack transparency, and they vary across the country. That is understandably worrying and frustrating for families.

As we know, social care is quite a fragile and complex sector. There is a big role for the third sector and local authorities, but we find that they are surviving on short-term and often decreasing funding models. Social care needs a robust, long-term plan with real investment for a service that is increasingly needed across Scotland by our ageing population.

I thank Richard Lyle again for securing the debate. I believe that we all agree that urgent action must be taken in response to the findings in Alzheimer Scotland’s report. Seventy years on from the establishment of the NHS, it is unacceptable that one of the most vulnerable groups in our society is missing out on the healthcare that it needs.

Scottish Labour believes that there should be equal access to healthcare, free at the point of need. That especially applies to those with long-term terminal conditions.

Photo of Liam McArthur Liam McArthur Liberal Democrat

I join other members in congratulating Richard Lyle on securing the debate and setting the scene very well indeed. I add my thanks to Alzheimer Scotland for its detailed report, which, as others have suggested, shines a much-needed light on the issue of advanced dementia, helps with our understanding of the condition and, importantly, exposes where there are gaps in the treatment and care that are available to those who are affected by this horrendous condition.

As people are living longer, the numbers of people with dementia and advanced dementia are on the increase. The research that is being undertaken to improve our understanding of what can be done to reduce the risks, to slow down the progression of the condition and to find a cure is to be welcomed, as is the fact that Scotland is leading the way.

However, for now, we need to do more to ensure that appropriate care and support are available at the appropriate time. As Alzheimer Scotland points out in its briefing,

“it is right that people in the early stages of dementia are supported to live as well and independently as possible, with a focus on social and family supports, and community connections.”

As other members have done in their constituencies, I have seen that at first hand in Orkney, where the dementia hub that is hosted by Age Scotland Orkney offers a wide range of activities and therapies, as well as the chance to have a cuppa and a chat. It enables people to share experiences, companionship and, of course, gossip. Not just people with dementia but, equally importantly, their family and their carers get a tremendous amount out of the hub experience.

Dementia friendly Orkney runs a variety of events, including the dementia cafe and its famous singing group. As I know to my cost, the group is great fun, with the emphasis being on companionship. It has a song sheet that is a veritable back catalogue of numbers that participants cannot help but belt out lustily.

To mark dementia awareness week, shops and businesses in Orkney will be going purple, as will the iconic St Magnus cathedral. A busy week of events will take place, from dementia-friendly film screenings to singing, and from cream teas to purple planting. On Saturday, there will be a game of walking rugby. Gillian Skuse and Steph Stanger from Age Scotland Orkney are highly persuasive individuals, so in defiance of doctor’s orders, I will be putting on the boots. It remains to be seen whether I will be in any fit shape to take to the dance floor at the golden ball dinner at the Orkney rugby club later that evening. All of that shows the fun side of dementia awareness week, which will help to raise funds as well as awareness.

However, there is a serious message, too. As Alzheimer Scotland’s report highlights, too many people with advanced dementia are not receiving the care that they need, despite the best efforts of their families and carer staff. A lack of clarity or consistency on social care charges means that people with advanced dementia often shoulder an unfair financial burden, as others have said.

The McLeish report called for local authorities to accept and recognise that people with advanced dementia should have equality of access to free healthcare on a par with people who are living with other progressive and terminal illnesses. That is not an unreasonable ask, and I hope that the minister agrees and that the Parliament can commit to making that happen.

I again thank Richard Lyle for allowing Parliament to have the debate.

Photo of Mark McDonald Mark McDonald Independent

I congratulate Richard Lyle on securing the debate.

The issue that we are debating is one that has long been of interest to me. My late grandmother had dementia up until her passing in 2011. As my mother cared for her for a large part of that time, I have seen at first hand the work that goes into supporting an individual who has dementia, or advanced dementia, which, as I think most people would have accepted, latterly my grandmother had.

Alzheimer Scotland’s report is timely and necessary. It rightly calls for a definition to be provided of advanced dementia. If we accept that dementia is a progressive—or, as some would say, a regressive—condition that advances throughout its course, there will come a point at which the individual’s healthcare needs will become more complicated and will require different interventions. That requires a definition to be in place in order to support the health and social care services that wrap around the individual to be able to identify the point at which care needs to be provided.

One of the difficulties and challenges that have been faced—I think that Alzheimer Scotland recognises this—is the lack of research that has been on advanced dementia. For example, a Cochrane review in 2016, which was set up

“To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used” could find only two studies to include in the review, both of which were from the United States of America. They covered 189 people. The report noted that six further studies were on-going at the time of the review, but stated that there was

“insufficient evidence to assess the effect of palliative care interventions in advanced dementia.”

Therefore, there is a need to collect appropriate evidence in order to ensure that there is data to inform decision making and care.

It is also worth noting that, unlike any of the other diseases that are among the top 10 causes of death in the United Kingdom, there is no recognised cure for dementia or a recognised official treatment that is provided to slow its progression. If dementia is detected early, that is not a sign that the individual can be cured or that the dementia can be removed. It will be there, and it will advance throughout the rest of the individual’s life.

Consistency and charging merit consideration. A tension always arises between the need to respect the ability of local authorities and local decision makers to make decisions according to their local priorities and the need for us to ensure that people in neighbouring local authority areas are not treated wildly differently. We have to face that tension. Although it is possible that we do not have to move to a uniform model, given the variations between rural and urban communities, perhaps parameters need to be set in order to ensure that people have an understanding of the charges that they are likely to face.

Consistency also applies in other ways. I remember raising the concerns of a constituent of mine—Jeanette Maitland—back in 2012. Her late husband had been seen by 106 different carers in the space of a year as part of his social care package. Such an approach will have an extraordinary impact on an individual with dementia, who will often require, and indeed thrive on, familiarity and an understanding with the person who provides their care That level of turnover of carers, with an inconsistency in the approach of carers, can only be harmful to the individual.

Charging is absolutely an important issue when we talk about consistency, but there are other areas of consistency that merit consideration as well.

Photo of Fulton MacGregor Fulton MacGregor Scottish National Party

Like other members, I thank Richard Lyle for bringing an important issue to be debated. I, too, want to highlight the work of

Alzheimer Scotland and record my thanks to it. I did not plan to speak in the debate, so I appreciate your indulgence, Presiding Officer.

I want to come to the issue from a slightly different angle. A couple of members have mentioned the difficulty that exists with national strategies, local authorities and local decision makers. The national strategy that the Scottish Government has brought forward is really good, but in order for it to work, it needs to be implemented at the local level.

One of the reasons that compelled me to speak is a local issue that I have been involved in, which relates to East Stewart Gardens in Coatbridge. A service is currently provided there for dementia patients—but not for much longer. The decision was recently made to close that service. There was no consultation with patients, families, staff or politicians. The impact assessment that was provided after I had written to the Cabinet Secretary for Health and Sport—the Minister for Mental Health might be aware of that—was not very detailed, to put it very politely.

I do not think that the board will move on the issue, but I wrote to the cabinet secretary to make her aware of it. I do not expect the decision to be overturned, but it is important that the integration joint board in Lanarkshire knows that such decisions for that patient group cannot be taken so lightly in the future.

To give testament to that, I held a public meeting that was well attended and highly charged. A lot of patients and their family members turned up, and they were extraordinarily upset and angry—to say the least—about the way that the situation had been handled. There had been no consultation and they felt that they had been treated as an afterthought in the process. To people who do not know the place names, I apologise for the localism of the example, but the notion that the patients would just be moved to Coathill hospital in Coatbridge was a bit of a red herring to get them through a decision. The patients did not want to go there and it was not a like-for-like service, which is something that I have been taking up on behalf of my constituents.

One thing that came to me during that meeting, and through speaking to Richard Lyle and others about it since, is that that patient group seems to have been treated differently from others at that local level. That has been highlighted in the report that we are debating today. I wondered whether other patient groups would have been treated like that, with so little consultation, and, if not, what the reason was for that. I was surprised. I thought that something must have happened and that somewhere down the line I would be told that there had been a massive consultation. I thought that I must have missed something, but that does not seem to have been the case.

In another case, some families came to me about an issue with supported accommodation that underwent major changes through the local authority. That was at James Dempsey Court, which is also in Coatbridge. A lot of the families who came to me were really concerned. When I spoke to the council about it, I discovered there was a difference in that situation, because the council had, indeed, undertaken a detailed piece of work on the change. However, it become clear that the council and patients’ families had two opposing views on it. Both were probably technically correct, but there is a question about where things got mixed up and how we can make sure that we explain such decisions better to that patient group. As Richard Lyle and others have said, it is clearly going to become more of an issue.

To conclude, Presiding Officer, I thank you again for letting me speak in the debate, and I thank Richard Lyle, Alzheimer Scotland and everybody on the cross-party group for the work that they are doing. We all need to work together at various levels of government to make sure that we get this right.

The Deputy Presiding Officer:

The last of the open debate contributions is from Maurice Corry.

Photo of Maurice Corry Maurice Corry Conservative

I congratulate Richard Lyle on bringing this important debate to the chamber, and I welcome Alzheimer Scotland’s report, which has given us bold and worthwhile recommendations on which to act.

For loved ones and their families, a diagnosis of dementia, as with many other illnesses, can open the door to a host of worries and burdens. It spells the beginning of the difficult journey of a progressively worsening disease, and it takes individuals and their families where they do not want to go. I know from my time as chairman of Argyll and Bute integration joint board how difficult it is for them, so I congratulate Alzheimer Scotland on its centres and its use of art, music and singing, which are all most helpful in the lives of those people.

I have previously, in the chamber, touched on some of the consequences of the challenges that dementia brings. Financial scammers often capitalise on the vulnerability of people who are living with dementia. As I have said, initiatives that are sponsored by groups such as the Life Changes Trust raise awareness of simple solutions—telephone call blockers, for example—that can make the world of difference to people who are living with dementia.

The focus of today’s debate is how we respond to dementia when it reaches an advanced stage. It is at that point that sufferers are in critical need of reliable and helpful practices that will guide them along the right path of care. Every response should be founded on an accurate definition of symptoms, as the Alzheimer Scotland report suggests. Memory loss is, perhaps, its most significant symptom, but over time the condition sadly extends into greater and more serious health setbacks, including Pick’s disease. My brother-in-law, who was an armed services veteran, had it, and he received the most fantastic care at the Erskine care home during his latter days.

With advanced dementia comes a range of complex health issues and health needs layered one upon another. The demon of dementia is of a continuously changing and deteriorating nature, and the needs of a sufferer and their families change as they learn to grapple with the disease and its increasing challenges. That has not been translated into Government policy and practices, and the report seeks to change that.

It is right that dementia sufferers be encouraged to live as independently as possible, with help from their families and carers, but advanced dementia must be recognised as being more challenging and as deserving of clear policies and care that is free at the point of use.

The experience of living with advanced dementia does not look the same for every person, but it should be universally accepted that at the last stage of the illness the need goes far beyond social care—as has been highlighted already by previous speakers. A health problem must be met with the right solution—healthcare. In the past it was assumed that the health risks and worsening forgetfulness were down to the ageing process. Thankfully, with much greater awareness, we have come a long way from that mindset.

We have seen an increase in funding for Scottish researchers to find possible new ways of treating the condition, but we still see a gaping hole in Scotland’s policies when it comes to the advanced stage of the illness.

At the heart of the problem is the marked difference between dementia and other terminal and progressive illnesses, in terms of how they are viewed and the care that patients receive. While other illnesses, such as cancer, are quite rightly met with high standards of free healthcare and end-of-life treatment, for dementia those come at a considerable cost, and varying guidelines are in place. That is despite the facts that there is not a single treatment that can either cure or slow the deterioration of dementia, and that many other major illnesses are associated with it.

The estimated scope of the costs of social care for families with a dementia sufferer points to that inequality: every year, people with advanced dementia who live in care homes have to pay £49 million for the social care that they receive in response to their illnesses. The large sum speaks for itself and lays bare the burden and complexity of decision making that those people face. The approach to advanced dementia care needs to be redirected towards a transparent and specific model of care that is free from financial worry.

Life can be challenging enough for people who live with dementia. They neither need nor deserve the added complexities and burdens of the cost of social care. Their quality of life should not be hampered by confusing and varying procedures that do not recognise their health problem for what it is. They require expert healthcare services that are provided on a free and equal basis.

The Deputy Presiding Officer:

I call Clare Haughey to wind up the debate for around 7 minutes.

Photo of Clare Haughey Clare Haughey Scottish National Party

I add my thanks to Richard Lyle for lodging the motion for debate, and I thank all the members who have made valuable contributions.

I welcome Alzheimer Scotland’s “Delivering Fair Dementia Care For People With Advanced Dementia” report, and I agree with the motion that the report is “an important contribution” to the public debate on how we improve dementia care and services and in particular to our “understanding of advanced dementia”.

I also agree with the proposition in the report and the motion that it is crucial that people at all stages of the illness, including advanced dementia, have the right to equal access to the high-quality expert care and health services that they need, “on an equal basis” with other progressive conditions. That right is regardless of whether they are at home, in residential care, specialist NHS care or in acute settings, and, of course, I agree with the report and the motion that the healthcare interventions should at all times be

“free at the point of use.”

The Government has welcomed the “Fair Dementia Care” report. We are giving careful consideration to its recommendations and are engaging with Alzheimer Scotland, the Convention of Scottish Local Authorities and others on those. Many of the recommendations in the report are being considered as part of our work to change and improve adult social care support in Scotland.

As a mental health nurse with over 30 years of experience, I have seen many changes in how we deliver services. My first job as a staff nurse was in a long-term care of the elderly ward. Most of those patients suffered from some form of dementia, but most of them would now be cared for in their own homes with social care support and others in residential or nursing home settings—more homely settings that are closer to their own communities, family and friends.

Things have moved on greatly in that time and we know that the demand for social care support is growing due, in part, to our ageing population. Therefore, it is important that we have a social care system that fits today’s needs, that is well placed for developments and demands to come and, crucially, that focuses on the people who use the support, rather than the processes that deliver it. That is why we are working with people who use social care support—carers, COSLA and a wide range of partners from across the sector—to develop a national programme to support local reform of adult social care support.

Emerging priorities from the evidence include a shared agreement on the purpose of social care support; equity of experiences across Scotland; transparency of systems, processes and decisions; raising awareness of social care support and its value for individuals and for Scotland; and valuing and supporting the workforce.

The “Fair Dementia Care” report makes a series of recommendations on social care support charging, including consistency of charging. As part of the reform programme, we will also explore the cost of care and how it is paid for. We will develop a process for working collectively to consider alternative models for funding social care that will support Scotland’s people into the future. Our models must enable investment at both ends of the scale—in intensive care and support needs and in lower needs care and preventative support.

The programme is identifying some of the key areas for reform so that we can make smart and sustainable changes to ensure that our social care support is fit for the future. Delivering high-quality health and social care for people living with dementia at all stages of the illness and in all settings is a high priority for this Government and the foundation of our three national dementia strategies since 2010. Over this time, we have received international praise for our approach to dementia policy in Scotland, including our world-leading national approach to post-diagnostic support.

The fair dementia care report is concerned in particular with access to healthcare for people with dementia who are in care homes. I agree that it is important that an individual’s access to high-quality dementia care should not depend on where they reside. I highlight the major Care Inspectorate report of 2017, which focused on 145 care homes. It found good progress in particular in the provision and quality of person-centred care and personalised care plans.

Our 2017 to 2020 national dementia strategy continues to focus on key areas such as post-diagnostic support and integrated home care, with an additional focus on the advanced stages of the illness, including palliative and end-of-life care.

We are continuing to help to educate and train the workforce on the complexities of dementia care, including in its advanced stages. We also continue to take national action in support of people with dementia in acute care. We are working with Alzheimer Scotland and NHS boards to support the Alzheimer Scotland dementia nurse consultants programme. Those nurse consultants have been hugely important in driving strategic local change in acute dementia care. A report on the programme has just been published. It sets out the achievements of the nurse consultants over 2015 to 2018 in key areas such as helping to embed and lead expertise in dementia care and developing staff expertise. The range of actions led by the nurse consultants includes improved person-centred care, improved responses to stress and distress in acute care and improved linkages to other care settings and the community.

Photo of Liam McArthur Liam McArthur Liberal Democrat

I welcome everything the minister has said about developments. However, one of the concerns that was raised is that there is a lack of clarity and perhaps consistency in the charging regimes that are operated by local authorities across the country. What work is being done—alongside COSLA, perhaps—to try to create a greater degree of clarity and consistency?

Photo of Clare Haughey Clare Haughey Scottish National Party

Liam McArthur is absolutely right—the report highlights that point and he also highlighted it in his speech.

The adult social care reform programme is looking at a range of areas to promote greater consistency and clarity, to ensure that those who need the care and support understand what the system can provide and the costs that that may entail.

I was pleased to confirm yesterday that the Scottish Government will continue its funding support for the nurse consultants in this financial year. The successful integration of health and social care support is crucial for people with dementia, to ensure that more people with the illness can stay at home or in a homely environment for longer; to avoid unnecessary admissions to hospital; and to ensure that they are discharged when they are ready to leave hospital.

I was also pleased to announce yesterday, at Alzheimer Scotland’s conference, that we will be funding and working with Inverclyde health and social care partnership to test how we deliver high-quality, integrated dementia care at scale. In addition, we are taking a range of actions to support this agenda, including extending free personal care for everyone under 65—including for people with dementia, of course—and implementing the Carers (Scotland) Act 2016 and the living wage.

I thank members for their contributions in what has been a measured and thoughtful debate. I welcome the contributions from across the political spectrum, which I hope are an indication of the cross-party consensus that we can have on helping to improve the lives of people with dementia and supporting their families.

Meeting closed at 17:55.