 The final item of business today is members' business debate on motion 17177, in the name of Richard Lyle, on the Alzheimer Scotland report delivering fair dementia care for people with advanced dementia. That debate will be concluded without any questions being put. Would those members who wish to contribute to the debate please press the request to speak buttons? I call on Richard Lyle to open the debate for around seven minutes, please. As convener of the cross-party group on dementia, it gives me great pleasure to facilitate this debate and I wish to thank each and every person who signed my motion in those members who are speaking tonight. I want to begin my contribution this afternoon by highlighting the work of the cross-party group on dementia, which is doing an admiral job in advancing the debate. I have some members in the gallery tonight. Indeed, since its formation, the cross-party group has managed to expand the number of contributors pulling from across a wide range of stakeholders, including organisations and individuals. The committee's contribution from a growing number of people with dementia and their carers is particularly welcome—for example, the Scottish Dementia Working Group. In fact, I would like to take this opportunity to commend and underline the courage of those who have participated in our discussions, despite the difficulty and deeply personal nature of those discussions and contributions. We have set aside time for personal stories, which I listened to intently. The group has been and continues to be the most helpful resource in aiding the Scottish Government in understanding the needs of sufferers, carers and families. I thank officials who attend our meetings from the Scottish Government. I would also like to congratulate the excellent report by Alzheimer Scotland, 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 community connections. However, more and more people with dementia are now living longer with it and so are reaching the advanced stages of the illness. Advanced dementia is characterised by increasing complex and rapidly changing needs. We need to understand, as Alzheimer Scotland report sets out, that dementia is a set of symptoms that are caused by an underlying illness. The most common cause has been Alzheimer's disease. Fast-gal dementia is also quite common and there are over 100 other dementia-causing diseases also. As the Alzheimer Scotland report shows, Scotland has made great strides in improving dementia care in recent times. Most notably, since dementia was made a priority in 2007 by this Government. That progress has been forged by hard work, effective contribution at every level and the contribution of both practitioners and policy makers has been pivotal. However, there are people with advanced dementia who are not receiving the care that they need. Their families and even the committee's care staff are struggling to support them appropriately. That is because the current system does not recognise advanced dementia as a health condition. In other words, it is not a side effect of ageing but rather a degenerative disease that it is. We must seriously try to address us. Gladly, now reports such as Alzheimer Scotland's fair dementia care are bringing together all the evidence on this and forming us of just that fact. How can we respond to that fact? People with advanced dementia need to have medical nature of their condition recognised and be provided with the health and care and nursing care that they need. The harsh reality that we face with today is that the current situation creates inequality for thousands of people who love them with the advanced stages of the illness. They may not be able to receive the care that they need, despite the fact that they would get it if they had a recognised health condition. That means that not only are their needs not met but that they are being charged under the banner of social care for any care that they do get, meaning that people with dementia are facing a disproportionate financial burden compared to the people with other progressive terminal conditions. Those social care charges as they are, currently structured, are confusing to service users. Their lack of transparency are often not readily accessible on council websites. The charges themselves vary wildly from local authority to local authority. The lack of consistency and transparency of the financial assessment process is therefore a major concern, and 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 other progressive conditions, they are often subject to charges for the care that they need. I hope that the Scottish Government's forthcoming audit social care review will address that. I am sure that it will. I know that many people will be wondering about the cost implications of achieving the most necessary social progress, but it seems to me at this stage pivotal to remind you that this important issue cannot and should not be discussed only in pounds and pens. Behind the simple consideration of the costings of more than 90,000 people living with dementia in Scotland who need consideration as well as their carers—for example, Elaine. Elaine's mum Pat has been in the advanced stages of dementia since 2015. Her mum had been going to day-to-day centre nursing home for breast-break breaks. However, those inconsistent charges to Pat's environment were causing more harm than good, disrupting her mood, making her care even more difficult for Elaine at home. In the end, Pat had to move into a residential home. She was there for 10 months at her own cost. In this 10-month period, she had to visit A&E 11 times because her care home could not meet her health needs. When her last visit to hospital, she was admitted for three weeks due to a fracture skull, but 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 during that period. Elaine says that if my mum had access to free healthcare on the same basis as those with other progressive illnesses, she would have had a better quality of life, which would have saved the numerous crisis interventions that were not only costly and the stress that was placed on her and her family but financially to her and to her 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 will pay for their care. After reading Elaine's story, one of many in this country like it is surely clear that we need a national stand-up to address this important issue now. This national stand-up must ensure that all stakeholders understand the importance of this matter and the subsequent need for rapid action. However, today, the time is no longer right to examine possible solutions, as the solutions have already been highlighted by the report. Now is the time to act, and we owe it to our fellow citizens to provide a fair system that lends them the same care and security as sufferers of other illnesses, thus helping them to improve the quality of their daily lives. As the motion states, people with advanced dementia should receive the healthcare services that they need, three at the point of use, as would be the case for any other health condition. I believe that our health and social care services should recognise the needs of people with advanced dementia are healthcare needs and put in place services and structures that enable those needs to be met. The issue of dementia, particularly advanced dementia, is a central major challenge to our country in the coming years. As pointed out earlier, this debate concerns many women and men who, thanks to the recommendations of the Alzheimer's Scotland report, would see their living conditions improved. That is a dignified life that should be remembered, a fundamental right for their elderly demographic, most affected by dementia and also advanced dementia. In closing, article 25 of the EU charter of Fundamental Rights states, the union recognises and respects the rights of the elderly to lead a life of dignity and independence to participate in social and cultural life. We must recognise the vital and imminent nature of this issue. Do everything possible to meet the expectations of those directly or indirectly affected by it? We will now move to the open debate. Speeches have up to four minutes, please. I have Jeremy Balfour followed by Kenneth Gibson. Thank you, Deputy Presiding Officer, and I congratulate Richard Lyle on his motion on securing this debate this afternoon. I welcome the Alzheimer's Scotland report, which I think is really helpful and lays out where we are and where we should be going. When I was a local councillor here in Edinburgh, I had the privilege of being involved with the Custafan Dementia club and being a director there. I saw the effect that early dementia had on individuals and on families. Richard Lyle has helped to point out the definition that many people have. One of the encouraging things in many ways is that people are now living longer with this condition. Thanks to medical science, better care and a better understanding of the condition, people are living longer. However, that comes with a greater pressure. Pressure may not be on the individual who has this horrible condition, but the pressure comes from family, friends and others who are supporting it. Richard Lyle has pointed out perhaps the crux of what we need to look at as a Parliament and as a society as we go forward. When someone has advanced dementia, the care that is required and the cost that that care comes with. I was interested when reading the report that it does not call for social care charging to be abolished, but it calls for equality. I suppose that that comes to the crux of the problem. As a former local councillor, I generally believe that local authorities should be able to make their own decisions. If you look at the report and look at what is happening across the 32 local authority, there is not that equality. There are differentials in regard to not only the type of care but the cost that that care will cost. We need to have a grown-up debate about how much we set national guidelines, national standards and how much do we allow local authorities to make local decisions? Often, that will be a difficult question to answer, but surely what we need to get in a country geographically large but population fairly small is consistency. If I live in Orkney or Shetland, if I live in Dumfries or Edinburgh, the type of care and cost that I am getting is consistent across our country. As Richard Lyle pointed out in his speech, there is often on webpages a lack of transparency about what I need to do, what I can get, what services are available, and it must surely be possible to have it easily accessible. Where someone gets to the point that they need this care, that it is accessible to them and to their families, we need to look at all those issues. I think that the debate needs to happen quickly. I am looking forward to seeing what comes forward later this year from the Scottish Government. We have to recognise that the balance that must be got between what national government sets and does, and that is left to the 32 local authorities. I also, in conclusion, think that as we continue to design the social security system, particularly for attendance allowance and for PIP, we need to make sure that people who have that condition are not left behind from others who have similar types of conditioning. I congratulate Richard Lyle and look forward to hearing the rest of the debate this evening. Kenneth Gibson, followed by Monica Lennon. I congratulate my colleague Richard Lyle on securing today's debate. For his years of work as convener of the cross-party group in dementia, which has also looked at advanced stage dementia and how we support those impacted by it in Scotland. Both my grandmothers died after suffering from dementia, and my mother has been in a care home with Alzheimer's for the last five years, so I have a personal interest. I thank Age Scotland for their briefing and Alzheimer's Scotland for providing an excellent briefing and 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 are living with a condition in Scotland and examine how advanced dementia care is financed today. This is an immensely important work, given that currently over 90,000 people live with dementia in Scotland, a condition often rooted in progressive illnesses such as Alzheimer's disease that have no effective treatment and no cure. The effects of dementia are profound on both the individual, their loved ones and their carers, who live daily with a physical, emotional and financial burden that this illness brings. However, when it comes to advanced dementia, it is a frequently used but rarely or consistently defined term. To ensure support for those with a condition, it is imperative that we recognise and respond to the healthcare needs that arise during this advanced stage. The fair dementia care condition report puts forward a concrete definition stating, and I quote, "...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 healthcare needs and risks." I believe that this is a robust definition and should be incorporated into policy and practice. The report states that healthcare needs and risks include neuropsychiatric symptoms, disorientation, communication problems, multiple function impairments, immobility, incontinence and weight loss. Because advanced dementia has not been consistently defined, it is difficult to estimate how many people in Scotland are living with it. Possibly 35 per cent of people with dementia who resident care homes, while around 7 per cent of all older people receiving non-residential social care, have advanced dementia. Those figures illustrate just how many people are affected by the inequalities in dementia care, highlighted by the commission's work. Indeed, the report found that people with advanced dementia do not have equal access to healthcare when compared to people in the advanced stages of other illnesses. That is rooted in the fact that advanced dementia is largely met with a social care response and disproportionately subject to social care charges, as Richard Lyle highlighted. Despite the fact that their needs are largely health and nursing care related, that approach is costing people with advanced dementia an estimated £50.9 million a year in social care charges, a situation that is compounded by the variations in charges across local authorities and a social care system that can be complex to navigate. The report outlines key recommendations in enabling society to more adequately meet the needs of sufferers with dignity and fairness. Significantly, the report asks the Scottish Government to recognise the needs of people with advanced dementia, have healthcare and not just social needs that should be met with health and nursing care free at the point of delivery. I understand that Scottish ministers are already examining this 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 raised by the report with the view to implementing the recommendations. A chair of the fair dementia care commission, Henry McLeish, highlighted that Scotland is internationally recognised as having some of the most progressive dementia policy. Indeed, Scotland is home to groundbreaking research and developing treatments to slow down dementia and improve the quality of life of people living with it. We cannot afford to stand still in tackling this great medical and social challenge. Thankfully, work is well underway 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 Edinburgh University to fund their investigation into treatment of nerve damage caused by Alzheimer's. We must ensure that advances made in understanding advanced dementia and its symptoms are reflected in our policies and practice. I thank Alzheimer's Scotland once again and Richard Lyle for pressing the Scottish Government to do just that. Monica Lennon followed by Liam McArthur. I congratulate Richard Lyle for bringing forward this important debate and for the work that he leads on in the CPG and dementia and everyone who is involved in that. I look on the Parliament website and there is a very long list of individuals and organisations who are involved, so well done to all of them. Of course, I thank Alzheimer's Scotland for their report. We are debating tonight for giving us much-needed and valuable insight and to Health and Social Care Alliance Scotland for their briefing this evening. We know that more than 90,000 people are living with dementia in Scotland, and that number is rising. There will be few families whose lives remain untouched by the disease, such as Kenneth Gibson, who we have just heard from in the debate about his family experience. I know that this debate will be important to many people in my region of central Scotland 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 recently diagnosed with the right support. People with dementia can live well for months and many years in their communities and loved ones, but when the disease becomes advanced and increasingly complex care needs are developed, it is important that people are given the care and support that they need. Sadly, as we know from the report, this is not happening for people with advanced dementia. That 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 with dementia or their families have to fight for. Everyone should have equal access to healthcare free at the point of need. That is why Labour established the NHS over 70 years ago. I agree with other colleagues that the Scottish Government must do everything that it can to ensure that all people always have the specialist care that they need. I know from my own work as a counsellor where I previously held surgeries in Lancashire carers centre in Hamilton and I know from my own work as a counsellor where I previously held surgeries in Lancashire carers centre in Hamilton and working with organisations that friends and family care for their loved ones for as long as possible. With a progressive terminal disease like dementia, there usually comes the difficult point when more support is needed from social care services. The situation is truly heartbreaking for carers and families. Social care can provide additional support around the clock care when required and that gives families lots of comfort. However, 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 are facing a disproportionate financial burden compared to other people with similar conditions. One of the most common issues that I was asked about in Scotland is the cost of care. Social care charging policies, as Richard Lyle has described, can be confusing and lack transparency across the country. I understand why that is providing worry and frustration for families. Social care, as we know, 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. In conclusion, I would like to thank Richard Lyle for securing the debate. We all agree that urgent action must be taken in response to Alzheimer's Scotland's findings in its report. 70 years on from when the NHS was established, it is not acceptable that we find that one of the most vulnerable groups in our society are missing out on the healthcare that they need. Scottish Labour believes that there should be equal access to healthcare, free at the point of need, and that applies especially to those with long-term terminal conditions. Liam McArthur, followed by Mark McDonald. Thank you, Deputy Presiding Officer. Let me join others in congratulating Richard Lyle, both in securing the debate and setting the scene very well indeed. I also add my thanks to Alzheimer's Scotland for its detailed report, which, as others have suggested, shine a much-needed light on the issue of advanced dementia. It helps in our understanding of the condition, but it also, importantly, exposes where there are gaps in the treatment and care that are available to those affected by this horrendous condition. Obviously, as people are living longer, the numbers that we are seeing with dementia and indeed with advanced dementia are on the increase too. The research being undertaken to improve our understanding about what can be done to reduce the risks, to slow the condition, potentially to find a cure are much to be welcomed, and so too is the fact that Scotland is leading the way. However, for now, we need to be doing more to ensure that appropriate care and support is available at the appropriate time. Alzheimer's Scotland pointed out in its briefing that 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. I have seen that first-hand, as others have in their own constituents. I have seen that first-hand in Orkney, where, for example, the dementia hub hosted by Age Scotland, Orkney offers a wide range of activities, therapies but also just the chance for a cuppa and a chat. It is about sharing experiences, companionship and, of course, gossip. Those with dementia but, as important, their family and their carers get a tremendous amount out of the hub experience. Dementia-friendly Orkney also run a variety of events, including the dementia cafe and the famous singing group, as I know to my cost. That is great fun, with an emphasis on companionship, where they have a song sheet, which is a veritable back catalogue of numbers that you cannot help but belt out lustily. To mark dementia awareness week, shops and businesses in Orkney will be going purple, as too will the iconic St Magnus Cathedral. A busy week of events from dementia-friendly film screenings to singing from cream teas to purple planting will take place. Then, on Saturday, there will be a game of walking rugby. I have to say that Gillian Skews and Steph Stanger from Age Scotland, Orkney, are both highly persuasive individuals. In defiance of doctors' orders, I will be putting on the boots, but it remains to be seen whether I am in any fit shape to take to the dance floor at the golden ball dinner at the Orkney rugby club later on that evening. All that shows the fun side of raising awareness as part of dementia awareness week. It will hopefully help to raise funds as well, but there is a serious message as well. As Alzheimer Scotland report highlights, too many people with advanced dementia are not receiving the care that they need, despite the best efforts of their families and indeed care staff. A lack of clarity or consistency in social care charges means that people with advanced dementia are often shouldering an unfair financial burden as others have alluded to. The McLeish report called for local authorities to accept and recognise that people with advanced dementia need a quality 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. I hope that the minister will agree and that this Parliament can commit to making that decision. I thank Richard Lyle again for allowing Parliament to have this debate this evening. Mark McDonald followed by Fulton MacGregor. Thank you very much, Presiding Officer. I congratulate Richard Lyle on securing this debate in Parliament. I say at the outset that this is an issue that has long been of interest to me. My late grandmother had dementia prior to her passing in 2011, and my mother cared for her for a large part of that time. I have seen first-hand the work that has to go into supporting an individual who has dementia and laterally advanced dementia, which I think most people would have accepted was the case with my grandmother. The report from Alzheimer Scotland is timely and necessary. I think that it calls rightly for a definition in relation to advanced dementia. If we accept that dementia is a progressive or some would say a regressive condition, which advances through its course, then there will come a point at which the healthcare needs of that individual are going to become more complicated and require different interventions. That, I think, requires a definition to be in place in order to support the health and social care services that wrap around that individual to be able to identify the point at which that care needs to be provided. One of the difficulties and challenges that it has been faced and I think is recognised by Alzheimer Scotland is the lack of work that has been done up until now around research around advanced dementia. For example, a Cochran review in 2016, which was set up to assess the effective pallet of care interventions in advanced dementia and a report on the range of outcome measures used, could find only two studies to include in the review, both from the United States of America, totaling 189 people. Although the report did note that there were six further studies on going at the time of the review, it did state that there was insufficient evidence to be able to assess the effective pallet of care interventions in advanced dementia. The need to collect appropriate evidence in order to ensure that the data is there to inform decision making and inform the kind of care that is taken forward is out there. One of the other things that is worth noting about dementia is that, unlike any of the other diseases in the top 10 causes in the UK, there is no recognised cure nor recognised an official treatment provided in relation to slowing progression. If you detect dementia early, it is not a sign that you will be able to cure from it or remove dementia, it will be there and it will advance throughout the rest of that individual's life. The point about consistency and about charging is one that merits consideration. There is always a tension that arises between the need to respect the ability of local authorities and local decision makers to set decisions according to their local priorities versus the need for us to ensure that people in neighbouring local authorities are not being treated wildly differently. That is a tension that we always have to face. However, I think that, while we possibly could not move to a necessarily uniform model given the variations that would exist between rural and urban communities, parameters need to perhaps be set in order to ensure that people have an understanding of what they are likely to face when it comes to charges. Consistency applies in other ways. I remember back in 2012 raising the concerns of my constituent, Jeanette Maitland, whose late husband had been seen by 106 different carers in the space of a year on the part of his social care package. That has an extraordinary impact on an individual with dementia who often requires and indeed thrives on the basis of familiarity and the basis of an understanding that exists between them and the individual who is providing their care to have that level of turnover of carer and that inconsistency in relation to the approach of carers can only be harmful to that individual. When we talk about consistency, charging is absolutely important, but there are other areas of consistency that I think merit consideration as well. I forgot my microphone, sorry. Fylter MacGregor, followed by Maurice Corry. Thank you very much, Presiding Officer. Like everybody else who says thanks to Richard Lyle for bringing this important issue to the debate. I also want to highlight the work out chambers Scotland and put on record my thanks to them as well. Presiding Officer, I wasn't originally planning to speak in this debate, so I also appreciate your indulgence in this. I want to come from a slightly different angle. A couple of members have mentioned the difficulty, if you like, that exists between national strategies and perhaps local authority and local decision makers. I think that the national strategy that the Scottish Government has brought forward is indeed a really good one, but in order for it to work, it needs to be implemented at local levels. One of the reasons that compelled me to speak was to speak about a very localised issue that I have been involved in, namely East York Gardens in Coatbridge, a service currently, but not for much longer for dementia patients. There was a decision recently made to close the service there with no consultation with patients, family, staff or with politicians. The impact assessment that was later provided after I had written to the minister that I know the cabinet secretary, that I know the minister might be aware of, was not very detailed to put it very politely. I think that the board are not going to move on this particular issue, and I have, as I said, already written to the cabinet secretary to make her aware of it. Not that I expect the decision to be overturned or anything like that, but I think that it's very important that the joint integrated board and Lanarkshire know that those decisions with this particular patient group cannot be taken so lightly in the future. To give testament to that, I actually held a public meeting that was well attended and quite charged with. A lot of patients and their family members turned up. They were extraordinarily upset and angry, again to say the least, about the way that the situation had been handled. No consultation, felt that they were kinder and afterthought in the whole process. I'm sorry for the localism, if that's what people don't know, maybe place names, but the whole notion that the patients will just be moved to Cote Hill Hospital and Cote Bridge as well, was actually a wee bit of a red hern to get them through a decision because those patients didn't want to go there and it wasn't a like-for-like service, so that's something that I've been taking up with these individuals on a constituency basis, but one thing that came to me during that and then speaking to Richard in others about it since and I think it's highlighted through the report that we're debating here today is that this patient group seemed to be treated differently than others on that local level and I did don on me there would all patient groups have been treated less with so little consultation and I do wonder what the reason for that is because I have to say, I was quite surprised and I did think, there's something that will happen to you, I'll get told somewhere down the line, there's a massive consultation, I must have missed something, but no, and it doesn't seem to be the case. And it was actually something very similar as well, some families came to me about a supported accommodation issue that also underwent major changes through the local authority, that was at James Dempsey Court, also on Cote Bridge and a lot of families came to me really concerned. Now when I went back and spoke to the councillor about that, there was a difference in the situation, the council had indeed undertaken quite a detailed piece of work around that, however what became clear is you had two really opposing views on it, families of patients in the council and I think both were probably actually technically correct but where had that got mixed up and how can we make sure that we're explaining decisions better to this particular population group and as I think Richard Lyle and others have said it's clearly going to be more of an issue as we go together. So to conclude, Presiding Officer, again I want to thank you for letting me in to thank Richard Lyle, thank you Algerino Scotland, thank everybody for all the work they're doing on the cross-party group but I think that the point I want to make is that we all need to work together at all various levels of government to make sure that we get that right. Thanks very much. The last of the open debate contributions is from Maurice Corry. Thank you Deputy Presiding Officer. I congratulate Richard Lyle on bringing this important debate forward and I too welcome Alzheimer's Scotland's report which has given us bold and worthwhile recommendations to act upon. For loved ones and their families a diagnosis dementia as with many other illnesses can open the door to a host of worries and burdens. It spells the beginning of the progressive and difficult journey of a worsening disease. It takes individuals and their families where they do not want to go and I know from my time as the chairman of Argan Bute's integrated joint board how difficult it is for them and I congratulate Alzheimer's Scotland on their centres and their use of art, music and singing which are all most helpful in the life of these people. I have previously touched upon the some of the consequences of these challenges in this chamber and indeed financial scammers often maximise on the vulnerability of those living with dementia. As I said then, initiatives sponsored by groups and Life Changers Trust raise awareness of simple solutions, telephone call blockers for example which can make the world of difference to those living with dementia but the focus of today's debate is how we respond to dementia and when it reaches an advanced stage and at this point the sufferers are in a critical need of reliable and helpful practices that will guide them in the right path of care but every response must be found upon an accurate definition of its symptoms as the Alzheimer's Scotland's report suggests that memory loss is perhaps its most significant label over time its saddest stems into greater and more serious health setbacks such as PICS disease as my brother-in-law and armed forces veterans had and 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 needs layered upon another. The demon of dementia is a continuous changing and deteriorating nature and the needs of a person and their families change as they learn to grapple with the disease and its increasing challenges. This has not been translated into Government policy and practices and this is what the report seeks to change. It is right that the dementia sufferers are encouraged to live as independently as possible with help from their families and carers but with advanced dementia their needs absolutely must be recognised as more challenging and deserving of clear policies and care free at the point of use. The experience of living with advanced dementia does not look the same for every person but what should be universally accepted is that at this stage of illness the need goes far beyond social care and has already been highlighted by previous speakers. A health problem must be met with the right solution healthcare and in the past it is assumed that these health risks and worsening forgetfulness were down to the ageing process. Thankfully we have come a long way on from that mindset with much greater awareness. We have seen an increase in funding for researchers to find possible new ways of treating the condition but we still seem to be gaping whole in Scotland's policies when it comes to the advanced stage of the illness. The heart of the problem is a marked difference between dementia and other terminal and progressive illnesses in terms of how they are viewed and the care they receive while other illnesses such as cancer are quite rightly met with high standards of free healthcare and end-of-life treatment and varying guidelines in place. That is despite the fact that there is not one treatment which can either cure or slow the deterioration of dementia and there are many other major illnesses. The estimated scope of cost in social care for families with dementia points to its inequality and every year those at advanced dementia living in care homes have to pay around £49 million for the social care they receive in response to their illnesses. The large sum speaks for itself and the complexity of the decision-making that those people face. The approach to advanced dementia care needs to be redirected into a transparent and specific model of care free from financial worry. To conclude, Deputy Presiding Officer, for those living with dementia care in Scotland, life can be challenging enough. They neither need nor deserve the added complexities and burdens of cost in social care. The quality of life should not be hampered in varying procedures that do not recognise their health problem for what it is. They require expert healthcare services provided on a free and equal basis. Thank you. I now call on Clare Haughhey to wind up the debate, please, for around seven minutes, minister. Thank you very much, Presiding Officer. I, too, would like to add my thanks to Richard Lyle for bringing this motion to the chamber for debate. I would like to thank all of the members for some very valuable contributions to the debate this evening. I welcome Alzheimer's Scotland's Fair Dementia care report. 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 our understanding of advanced dementia. I also agree with the proposition in the report and motion that it is crucial that people with dementia at all stages of the illness, including advanced dementia, have the right to equal access to 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. Of course, I agree with the report and motion that the healthcare intervention should at all times be free at the point of use. The Government has previously welcomed the Fair Dementia care report and we are giving careful consideration to its recommendations. We are engaging with Alzheimer's Scotland, COSLA and others on those. Many of the recommendations in the Fair Dementia care 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 to be a elderly ward. Most of those patients suffered from some form of dementia but most of them would nowadays be cared for in their own homes with social care support, others in residential or nursing home settings, but more homely settings and closer to their own communities, their family and their friends. Things have moved on greatly in that time and we know that the demand for social care support is growing due to in part to the population, so it is important that we have a social care system that fits today's needs and is well placed for developments and demands to come. Crucially, a system that focuses on the people using 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 and social care support. Emerging priorities from the evidence include a shared agreement on the purpose of social care support, equity of experience across Scotland, transparency of systems, processes and decisions and raising awareness of social care support and its value for individuals and for Scotland and valuing and supporting the workforce. The fair dementia report makes a series of recommendations on social care support charging, and, 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 healthcare 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 without relating national approach to post-diagnostic support. The fair dementia care report is concerned in particular with access to healthcare for people with dementia in care homes and I agree that it is important that an individual's access to high-quality dementia care should not depend on where they reside. I would highlight to members the major care and spectric report of 2017 which focused on 145 care homes. It found good progress in provision and quality of person-centred care and personalised care plans. Our 2017-2020 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, educate and train the workforce and 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's Scotland and NHS boards to support the Alzheimer's Scotland dementia nurse consultants programme. They have been hugely important in driving strategic local change in acute dementia care. The 2015-18 report was published yesterday and it set out the achievements by the nurse consultants over that period in key areas such as helping to embed and lead expertise in dementia care and develop staff expertise. The range of action led by the consultants includes improved person-centred care and improved responses to stress and distress in acute care and improved linkages to other care settings in the community. I was pleased yesterday to confirm. Liam McArthur. I'm very grateful to the minister. I welcome all of what she said in terms of developments but obviously one of the concerns was a lack of clarity and consistency around the charging regimes operated by local authorities across the country. I wonder what work has been done alongside COSLA to create a greater degree of clarity and consistency. Clare Haughey. I thank Liam McArthur for that intervention and he's absolutely right. The report highlights that and I think he highlighted that in his speech. Adult social care reform programme includes a range of areas to promote greater consistency and clarity and ensuring that those who need the care and support understand what the system can provide and the costs that that may well entail. Yesterday I was pleased to confirm 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 and more people with the illness can stay at home or in a homely environment for longer to avoid unnecessary admissions to hospital and ensure they're discharged when they need 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 of course we are taking a range of actions to support this agenda including extending free personal care for everyone under 65 including people with dementia and implementing the carers act and the living wage. I would just like to thank members for their contributions today. I think that this has been a really measured and thoughtful debate. I welcome the contributions from across the political spectrum and I hope that this is an indication of the cross-party consensus that we can have in the helping to improve the lives of people with dementia and their families. Thank you. That concludes the debate and this meeting is closed.