Dementia Strategy

– in the Scottish Parliament on 27th January 2011.

Alert me about debates like this

Photo of Alasdair Morgan Alasdair Morgan Scottish National Party

The next item of business is a debate on motion S3M-7793, in the name of Shona Robison, on the dementia strategy.

Photo of Shona Robison Shona Robison Scottish National Party

I welcome this opportunity to update Parliament on the dementia strategy and the progress that we have made in implementing it since June.

I start on a sad note. Many members will be aware that Jim Jackson, who was Alzheimer Scotland’s first chief executive, died unexpectedly on 12 January. As well as being chief executive of Alzheimer Scotland, he was deeply involved in dementia research at an international level. I know that members will want to pass on their sympathies to his family.

Many people with dementia and their carers do not receive the services that they need or want, despite the level of resources already in the system—an estimated £1.7 billion—to support people with dementia. The number of people with dementia is expected to double in the next 25 years. That is why we said that we are not looking for more of the same services and that we need to reshape fundamentally the model of care for people with dementia.

We are working closely with our partners in health and social care in the statutory, voluntary and private sectors to work out which are the best ways of making the changes that we need in dementia care. At each stage of the someone’s journey in dementia there are things that we need to do better. We need to give better support after diagnosis; we need to improve people’s experience when they are in general hospital settings; and, at all times, we need to ensure that people are treated with dignity and respect. The strategy reflects our endorsement of the cross-party group on Alzheimer’s “Charter of Rights for People with Dementia and their Carers in Scotland”.

We identified two key areas on which we intend to focus: ensuring that people receive the right information and support after diagnosis; and improving the care and treatment of people with dementia in general hospital settings. To deliver on those objectives and on the strategy’s overall objectives, we are committed to a series of actions over the next three years. I will set out some of those actions and provide an update on our progress.

We are developing standards of care for dementia. One of the strongest messages from people with dementia is that all too often the nature of their illness means that they struggle to protect their rights. They do not always have access to the services that they need, and there is still too much stigma around and discrimination against people with the illness. Work on the standards is under way. We have commissioned the Mental Welfare Commission to develop the standards, and that work will be completed later this year.

We are developing a skills and knowledge framework for dementia. Staff who work with people with dementia need the right skills and knowledge if they are to deliver services in a way that treats people with dignity and respect. We, NHS Education for Scotland and the Scottish Social Services Council have started the first stage of that work, which is being led by a programme board that is chaired by the chief executive of Alzheimer Scotland, Henry Simmons. It will be completed this year.

We intend to provide funding of £300,000 to support Alzheimer Scotland to build on its pilot of specialist dementia nurses in national health service boards so that one such nurse can be introduced in each board area in Scotland. We have already seen the impact of dementia nurses, working to support other staff, on the quality of care and safety of people with dementia in care homes, at home or in hospital.

Photo of Hugh O'Donnell Hugh O'Donnell Liberal Democrat

I welcome the minister’s provision of that funding. Will she say how it will be protected from leaking into other areas of NHS activity?

Photo of Shona Robison Shona Robison Scottish National Party

Through our normal NHS performance management arrangements, we will ensure that there is a specialist dementia nurse in each health board area and that the resource I mentioned goes there.

We need transformational change across the health and care system that goes beyond changes to individual elements of the system. We invited partnerships of NHS boards and local authorities to test in one area how whole-system redesign of services for dementia could be achieved. I was hugely impressed by the number of partnerships that entered into that process and by the enthusiasm for tackling the challenges. We are providing funding and support for three demonstrator sites—Midlothian, Perth and Kinross and North Lanarkshire—and that work has started.

We will continue the work to increase the number of people with dementia who have a diagnosis. Getting a diagnosis of dementia is frightening, but it is also a way to access information and support. We set a target to increase the number of people who are registered by their general practitioner as having dementia. We expect to meet the health improvement, efficiency, access and treatment target across Scotland ahead of schedule and we will continue to monitor progress.

Last year, the Big Lottery Fund announced that it would invest a share of £50 million in supporting all aspects of the lives of people with dementia and their carers after diagnosis. Such person-centred early intervention is key to ensuring that people can live well with dementia and is a great example of partnership working between the voluntary and statutory sectors.

We need to promote positive care to prevent behavioural issues from arising or reaching a crisis point and we need to consider how we use psychoactive medication. We will do research to consider in more detail how psychoactive medication is used in dementia treatment across Scotland, to understand better the right level of prescribing. For some people, such medication is the right choice, but we must ensure that medication is used appropriately.

We will continue to support world-class research into medical treatments for dementia and into the delivery of care. We established the dementia clinical research network for Scotland in 2008 and have supported it with funding of more than £1 million. Alzheimer Scotland has highlighted that network’s importance. People with dementia and their carers have a major role to play in bringing about change by becoming partners in research and we encourage them to continue to do so.

I am clear that the strategy needs to deliver tangible results quickly if we are to achieve change on the scale that is needed to meet the challenges that we face. We have established a monitoring and implementation group that involves key partners who are ensuring that we continue to make progress. More important, the group is considering whether the care and treatment of people with dementia are improving. It will publish a report at the end of each year and will make recommendations on what needs to be put in place in 2013 as a successor to the strategy.

I am pleased to move the motion. We have no issue with accepting the amendment.

I move,

That the Parliament welcomes the progress being made by the NHS, local government, scrutiny bodies and partners in the voluntary and private sectors, including Alzheimer Scotland and the Scottish Dementia Working Group, in delivering the commitments set out in Scotland’s first dementia strategy, building on the Scottish Government’s establishment of dementia as a national priority and on the Parliament’s Cross-Party Group on Alzheimer’s Charter of Rights for People with Dementia and their Carers in Scotland, and further welcomes the Big Lottery Fund’s investment in support for people with dementia and their carers after their diagnosis.

Photo of Richard Simpson Richard Simpson Labour

I declare my interests as a fellow of the Royal College of Psychiatrists and a member of the Scottish Association for Mental Health.

I very much welcome the debate—this must be the fastest response to a parliamentary question calling for a debate that had been promised. I also welcome the Government’s good record on the issue.

Good health is a mirage. As soon as one treats one condition successfully, another becomes a problem. When I was a student, tuberculosis was finally being eliminated as a major scourge and cause of premature death through the introduction of vaccination, and heart disease was becoming the major concern. The rate of heart disease is now declining significantly in all western countries, and cancer is the current major concern, but dementia will be the next one. That was recognised as early as the 1980s by the programme planning group, of which I was a member, which resulted in the Timbury report.

The central message of that report was that 30 per cent of people over 80 would have dementia and that creating suitable domestic settings and reducing social isolation would help to ameliorate the condition. At that time, no treatment or cure was available. We now have some treatment, but we have no cure.

The number of people whom the report estimated would be affected was too low. We pitched numbers for the early 2000s at 55,000 to 60,000, but the estimated figure now is about 70,000. That reflects a significant increase in life expectancy.

What are the challenges, which are for all of us as politicians? Successive Governments have made contributions. In 2005, a commitment was given to an integrated care pathway, which was developed by 2007. Every health board had reached the standard of stage 1 by 2009. We have the new dementia strategy and the charter of rights, which are important contributions that underpin the progress that needs to be made on all fronts.

Those measures are important and worth while but, as the minister said, the challenges lie not in words but in actions. First, we must have the data and the evidence base to enable us to delay the onset of the condition, to reduce deterioration, to manage the condition and to treat it.

I should probably also declare that I still hold an honorary professorship at the University of Stirling, where I did research on dementia. The dementia services development centre at Stirling is celebrating its 25th year. It is a world-class, world-leading centre. Will the minister say whether its core funding will be maintained as part of the Government’s excellent work on dementia? The practical, evidence-based approach that the centre has promoted has made a major contribution to the knowledge, training and wellbeing of many Scots families and to the knowledge and training of health and social care professionals who provide support.

The second challenge is for health professionals to provide early diagnosis. I pay tribute to the Government and my GP colleagues for the increase of 5,000 in registered numbers in the past two years and for the potential for 40,000 of the likely 70,000 to be registered by the end of the year. That shows that we have a long way to go, but the challenge is being met.

The third challenge, which families have emphasised and which is underpinned in the strategy, is that of providing good-quality information. That is vital to allow families to adapt the domestic setting early for the dementia patient. Such adaptation is essential to reduce anxiety, distress, behavioural difficulties and deterioration.

Early assessment of and support for unpaid carers are important. Unpaid carers contribute about £1 billion of the £1.7 billion cost of dementia, but monetary estimates underrate carers’ true value. They provide continuity, which is a major challenge. If I had one wish, it would be for our services to provide continuity to dementia patients. Community care is hard enough for the elderly. We have seen the shocking “Panorama” programme that showed patients with 30 or 40 carers a month. Last month, a constituent of mine had 11 carers, and that was in an area where social care is regarded as being quite good. For people with dementia, continuity is fundamental.

Everyone prefers to remain at home, and two thirds of patients do so, but that means that we must create a new approach in which packages include a rapid 24/7 emergency response component. If elderly patients with dementia fall—even if they do not have a fracture—they are more likely to end up in hospital than are elderly patients with other conditions. We need much more of the intermediate and emergency services such as those in north-east Fife in my constituency and those in Lanarkshire. Rapid response and reablement services can prevent admission.

I am not content with the inspection of care homes that takes place. We need to set new standards for training requirements in care homes. We must ensure that every care home has an emergency response arrangement. Scotland has almost no community geriatricians, although England has them, yet 40,000 of our elderly are in care homes and 70 per cent of those people have dementia.

Our amendment says that we must consider the specific challenge of palliative care. Far too many patients with dementia enter hospital to die. The position is not good for people with dementia, their families or the health service.

We must develop reablement services for when patients leave hospital, such as the highly successful service that Peter Gabbitas runs in Edinburgh.

In the hospital setting—which I do not have time to deal with—dementia patients need good nutrition, better pain management and an end to boarding out, which must be banned. We must have dementia-friendly rooms for such patients, so that they have the potential to come out of hospital.

I have not had time to deal with alcohol-related brain damage, which is an important and growing problem; antipsychotic medicine, which the minister mentioned; telecare; assistive technology; or rights, which are important.

I commend the Government for its work and support its motion, along with the two additions on carers and palliative care that our amendment proposes.

I move amendment S3M-7793.1, to insert after “Carers in Scotland”:

“; recognises the crucial role played by carers both paid and unpaid; notes also the challenge of ensuring good quality palliative care for people with dementia”.

Photo of Mary Scanlon Mary Scanlon Conservative

On behalf of the Scottish Conservatives, I share our sympathies for the passing of Jim Jackson of Alzheimer Scotland, who was a well-kent face in the early days of the Parliament.

It is undoubtedly important for the Parliament to debate dementia—we have had Government debates as well as members’ business debates on the subject. The estimated 72,000 people in Scotland with dementia should expect no less.

Everyone assumes that dementia is Alzheimer’s, so it is important to make it clear that 62 per cent of people with dementia have Alzheimer’s; 17 per cent have vascular dementia; and 11 per cent have mixed dementias. There are other groups, too. Richard Simpson made a good point about alcohol-related brain damage, which can happen to young people.

The Government’s strategy was announced last June, and although it has taken seven months to secure the debate, it is nonetheless welcome. I welcome the information update that the debate has provided and I look forward to the first-year progress report, which is due this June.

The Conservatives very much welcome the strategy—there is really nothing to disagree with in it. However, we want better implementation through better training and a better understanding of the condition. The target to increase the number of people with a diagnosis of dementia to 39,500 by March 2011 is welcome, but more important than meeting that target is that each and every person with dementia, and their families and carers, benefit from the diagnosis. We do not want a tick-box approach that says, “You’ve had your diagnosis, hen. Get on with it.” We need to know that people have benefited from better support and care, better training for family carers and paid carers, and better understanding of the condition.

I appreciate that time is short and that the minister could not talk about everything, but I welcome what she said about psychoactive medication.

We also need to know that hospital discharge is being better planned. It is clear from people at my surgeries that we are not quite there yet in the Highlands. That is a critically important point.

In the most recent debate on dementia, in October 2009, Robert Brown and I both raised the issue of the shortage of psychologists for people over 65. That group makes up 20 per cent of the population but gets only 5 per cent of the psychology workforce. Again I ask why. What is being done to ensure that older people get the psychological support that they need? I fully agree about the importance of diagnosing people with dementia, but surely giving them the right support also includes addressing their psychological needs.

I understand that there is an excellent clinical psychology rehab service in Glasgow, which works with older people to reduce mental health problems that are preventing their recovery from physical illness or surgery. The service works with patients and provides training, advice and clinical supervision to non-psychology colleagues in hospitals and the community. The service has been able to recognise and overcome psychological problems in older people, which has resulted in quicker recovery for patients and a reduction in the need for aids, adaptations and home care. Surely that is the type of service in which we should be investing.

We cannot ignore the fact that behavioural challenges such as wandering and aggression can arise in the care of people with dementia. Those are most often treated with medication, commonly antipsychotics. Although medication is often seen as a quick fix for those problems and in some cases is the most appropriate solution, it does not always address the root cause of the behaviour and can also have problematic side effects. I understand that behavioural management can be an effective alternative in many cases. There is no doubt that investing in more posts in psychology for the elderly can improve outcomes and reduce the impact of depression, anxiety and dementia. Strangely, I could not find any mention of depression or mental wellbeing in the strategy.

Photo of Mary Scanlon Mary Scanlon Conservative

Despite those issues being raised in the most recent debate on dementia in 2009, we have fewer psychologists for older people in Scotland now than we had then.

I recently visited someone in hospital in Inverness who was very much a country woman—she had lived in the country all her life. She was not allowed to open a window or go outside; she was not allowed fresh air. If we are going to make progress we need to treat people as individuals, not as prisoners.

Photo of Jamie Stone Jamie Stone Liberal Democrat

I associate my party with the remarks that have been made about the sad passing of Jim Jackson.

On behalf of my party, I welcome the announcement that money will be directed to specialist dementia nurses. Multiple sclerosis nurses in particular are a success story of which we can be proud.

I emphasise Richard Simpson’s point about the continuity of care. I have met constituents who have had a change in the lady who comes to bath them, which can put them badly wrong. Richard Simpson talked about unfamiliar faces—that is a difficult issue, and we have to avoid it.

I illustrate that with my experience, which is nothing to compare with that of Dr McKee or Dr Simpson. In the 1970s, my grandmother started on that sad decline. She stayed with us at home, and it gradually got worse and worse. It reached a point at which my parents could not cope. Perhaps to my everlasting shame, my grandmother ended up in Craig Dunain in Inverness—everyone from the Highlands knows what that is. I am about to use unparliamentary language but I do so to illustrate the point. The hospital was known locally as the loony bin. My grandmother was in there with people with mental problems, schizophrenia and other conditions. Her further descent and her death were appalling and have haunted me ever since. I will say in our defence, though, that that was the early 1970s and there was no alternative. Medical science had not advanced to the stage that we are at today.

My first point, then, is that we should recognise the progress that has been made, which is hugely important to the dignity of not just the patient but the family. Let us chalk that up as a success story.

In 2007, Oliver Sacks wrote “Musicophilia: Tales of Music and the Brain”. This important quotation has stayed with me:

“I have seen deeply demented patients weep or shiver as they listen to music they have never heard before, and I think they can experience the entire range of feelings the rest of us can, and that dementia, at least at these times, is no bar to emotional depth. Once one has seen such responses, one knows that there is still a self to be called upon, even if music, and only music, can do the calling.”

There is a message there about the nature of dementia. We might think that someone with dementia is away with the fairies, but in fact there are human emotions and real feelings there. The best carers remember that.

We are grateful to the cross-party group on Alzheimer’s for the “Charter of Rights for People with Dementia and their Carers in Scotland”. The charter talks about people with dementia thus:

“The illness severely compromises their ability to protect their own rights; because of this people with dementia are often at greater risk of violence, injury or mental abuse, neglect or negligent treatment, maltreatment or financial exploitation.”

It goes on to say:

“Caring for someone with dementia can be stressful because of the complex, unpredictable and progressive nature of the illness and may have a profound social, emotional, physical and financial impact on carers”— this is the important point—

“including increased risk of stress related illness such as depression.”

If there is one thrust to my speech it is to emphasise, as other members have done, the role of and support for the carer. If we think about who a carer is, we can refer to the film “Billy Elliot”, in which, early in the story, Billy goes out looking for his granny, who has wandered away into a wasteland. That poignantly reminds us of what caring is all about.

The dementia strategy is a good strategy and this is an essential debate. My party will be associated with the work that is being done by the minister and the Government, and with the Labour party amendment, which I warmly welcome.

Photo of Ian McKee Ian McKee Scottish National Party

I welcome this debate on the dementia strategy for Scotland. The loss of cognitive ability in a previously unimpaired person has many ramifications in the field of not only health but social services, as well as in all those areas, social and professional, in which we interact as part of everyday living.

As dementia is an impairment with no obvious physical manifestations, the outsider encountering someone with dementia is often totally unprepared and may act inappropriately, thus increasing the perceived stigma of the condition. I welcome whole-heartedly the progress that has been reported today and support all the statements that have been made.

I turn to an important aspect of the strategy that Mary Scanlon ably developed and which has not received the attention it requires: the nature of dementia. Throughout the strategy document, the term “dementia” is used as if it is a disease entity—indeed, reference is frequently made to the need to diagnose dementia. The terms “dementia” and “Alzheimer’s” seem to be used interchangeably and yet, as Mary Scanlon said, the term “dementia” is a description of a condition that can have several causes. As the treatment and detailed prognosis depend to a certain extent on the exact nature of the condition that is causing the symptoms of dementia, the causative condition is as important a diagnosis to make as the simple diagnosis that the person is suffering from dementia. Certainly, most cases of dementia are caused by what we call “Alzheimer’s disease” or simply “Alzheimer’s”.

Alois Alzheimer was a German psychiatrist who spent some time at the University of Tübingen, as did our own Professor Christopher Harvie. I suspect that they did not meet, given that Alzheimer researched the subject at the beginning of the 20th century. [Laughter.] Alzheimer described the condition that afflicts those under the age of 65 as “pre-senile dementia”. For those over that age, it was known as “senile dementia” and considered an almost inevitable consequence of growing old. Indeed, as recently as when Richard Simpson and I were medical students, both terms were commonly in use. As I am now comfortably over the age of 65, I am glad that things have moved on a little in this respect. Although we now realise that all cases of dementia that involve certain degenerative changes in the brain tissue can be classified as Alzheimer’s, treatment to arrest the progress of the condition has so far been unsatisfactory and those with Alzheimer’s certainly need the help that is outlined in the strategy.

There is, however, another and not uncommon cause of the condition, the development of which we know a little more about. In multi-infarct dementia, as the name suggests, damage to the brain is caused by a number of small strokes. Although it is impossible to reverse the damage that has already been done, it may be possible to reduce the chances of further damage by paying attention to failings in the circulatory system. High blood pressure should be treated, smoking stopped, diabetes brought under control and anti-platelet or cholesterol-lowering therapy prescribed where necessary. None of those interventions, with perhaps the exception of smoking cessation, will help in Alzheimer’s. A positive diagnosis is therefore essential.

Dementia can also be caused by, among other things, taking drugs, having an underactive thyroid, alcohol excess and depression. I will say a little about the latter cause. It is quite common for those with Alzheimer’s to suffer from depression, which will benefit from treatment, but severe depression can cause dementia. In that case, treating the depression can improve the dementia. The diagnosis of depression and positive treatment of the condition is therefore most important.

I concede that less than 10 per cent of those presenting with dementia have a disease process that can be reversed, but without careful investigation we may well miss those we can help. That is why I contend that any dementia strategy must have careful investigation and accurate diagnosis as key components.

Photo of Irene Oldfather Irene Oldfather Labour

First, I associate myself with other members’ comments about Jim Jackson, who was a founding member of the cross-party group on Alzheimer’s. He made a significant contribution to this agenda. I apologise ahead of time for being unable to stay to hear all the wind-up speakers. I should have left for Brussels at six o’clock this morning, but I stayed because I wanted to contribute to the debate.

I welcome the strategy, which is a step forward, as well as the further information that the minister provided this morning. There is much to be commended in the strategy, including recognition of the difficulties that people with dementia and Alzheimer’s face in the hospital environment. There is also recognition of the need for improved access to diagnostic testing in the community. That builds on the first cross-party group on Alzheimer’s report on admission to accident and emergency. Developing dementia-specific standards of care is very important. The two measures that I have mentioned will alone improve outcomes for people with dementia.

Respecting people with dementia and their families as equal citizens and giving them the dignity that they deserve costs nothing, yet we still have a long way to go in that regard. Only last week, I was contacted by a family member—his sister is a dementia sufferer—who saw the charter of rights displayed on a notice board in her care home. He took it down, read it and found himself encouraged; he could see the implications for his sister. That is where the good news stops. He then asked the care home management and staff about the charter, including what status it had and how he could get more involved. Their response was that they knew nothing about it other than that it was displayed. Empowering people is key to improving outcomes for this vulnerable group. Adequate ownership and staff training is absolutely vital in that regard. As Mary Scanlon articulated, the distance between policy and practice is still significant. The reality of day-to-day life for families and individuals who are coping with dementia is nowhere near close enough to the aspirations, ambitions and policy on dementia.

Time is limited, but I want to say a few words on an issue that I have not spoken about in the past and which may make uncomfortable listening. It relates to the Labour amendment. Unfortunately, Alzheimer’s is a terminal illness. When I speak at conferences where people who suffer from the illness are present, I often find it difficult to make points on the subject because I do not want to sound too gloomy. In the chamber, we have rightly spoken frequently about the importance of early diagnosis, but we have shirked away a little from the difficulties around end-of-life care. This is a time when families need a huge amount of support and I have come to the conclusion that a lot of work still needs to be done in this area. The medical difficulties and dilemmas for the Alzheimer’s sufferer in terms of decisions on eating and drinking—including on feeding tubes—aspirating and choking and the use of antibiotics, for example, means that this time is a huge emotional rollercoaster for the families, given that their relative is a frail elderly person who, by the very nature of their illness, lacks capacity. It is important that we support people who have to make those end-of-life choices and decisions. I am happy that I took the opportunity to raise that today.

I turn to system failures. In every debate in which I mention them, I say that I hope that we can consign them to the dustbin of history. Unfortunately, yet another report has been published that underlines just how far we have to go. I refer to the Mental Welfare Commission for Scotland’s “Best of Intentions” report, which looked into the case of Mrs I, an elderly woman with dementia. On admission to hospital, she was described as suffering from malnutrition and having been severely neglected despite being known to health and social services. Lack of co-ordination and a single point of contact were identified in the report as contributing factors to Mrs I’s poor care and treatment. I truly hope that the work that is being undertaken on an integrated care service will finally address those challenges.

There are things that we can do that do not cost money, but which need real political backing. We can spend money better and target more appropriately the personalised care that helps to keep people at home and in their community for as long as possible. We also need to ensure that resources are made available and protected where necessary. For those at the end of this journey, whether at home or in care, we must ensure that their care is the best—it needs to be of the highest possible quality. The people we represent deserve nothing less than to live the best life that they can and to die with dignity.

Photo of Stewart Stevenson Stewart Stevenson Scottish National Party

Irene Oldfather described Alzheimer’s as a terminal illness. That reminded me of what Clive James said in his autobiography:

“Don’t take life seriously; you won’t get out of it alive anyway.”

In other words, we are all going to die; something will kill us. Laughter has a place in every care home.

We must ensure that we have environments in which quality of life includes the whole range of human emotions that people suffering from dementia are capable of enjoying. It will be different for each person, so care must be tailored to each person. If we are to do that, the focus must be on diagnosis—and early diagnosis.

Jamie Stone covered some of the range of difficulties that people with dementia and their families can experience. I suggest strongly that, while mental capacity exists, people should get the kind of advice that will enable them to deal with future mental incapacity. Like some other members, I guess, I have already made arrangements for my future mental incapacity—to which my wife refers from time to time—by putting in place a power of attorney, so that arrangements are in place if I get into a position of mental incapacity in the legal sense. Early diagnosis and good advice to carers and families helps them to do that and removes one of a wide range of burdens that they will experience during the progression of the condition that is dementia.

Ian McKee talked about the changing nomenclature and descriptions that have been attached to the condition. As someone who for at least 50 years has taken an interest in genealogy, I have probably read thousands of death certificates, because they contain a lot of information. The modern system of certification was introduced in Scotland in 1855. On certificates from that date onwards—including certificates for members of my family—you see the term “senile decay” or “senile dementia”, with an indication of the period of time over which the person concerned suffered it. The diagnosis is relatively imprecise and imperfect, but it is clear that dementia is not a new condition but has been with the human race for a long time.

We must also focus on the fact that the burden that we place on carers—the expectations that we may have of close family members—can create illness, especially psychological illness, in those carers. It is important that they get the right kind of support. The gamut of emotions that many carers experience is not dissimilar to bereavement, but without the opportunity to move to the final phase of bereavement—accommodation, which involves putting in place happy memories of the person who has been lost and coming to terms with that loss—because the loss of the person from their carer’s life is postponed by their condition, even though their mental capacity to interact with the carer may already have departed.

I have a dear friend whose wife is suffering from dementia. She distresses him so much that he has not seen her for four years; she has been unable to communicate with or to recognise him for well nigh 10 years. The condition of that very elderly gentleman tugs at my heartstrings whenever I talk to him about his wife.

My sister-in-law has just retired—at the age of 73—as a mental health nurse, working in a care home for the elderly mentally infirm, and my mother used to chair the local mental health services committee in Cupar in Fife, so I have had a lifelong interest in this issue. There are absolutely no easy answers to it, but the document that the Government has produced and the good heart that has been seen in all participants in the debate should give us great encouragement that we are on the right track.

Photo of Helen Eadie Helen Eadie Labour

I associate myself with the remarks that other members have made about Jim Jackson. I also pay a warm tribute to Irene Oldfather for the work that she has done. I hope that members agree with me that no other member has done more to champion the cause of people who suffer from dementia. I have always admired her enormously for that. I hope that she will forgive me if I mention the very recent loss of her mother. That is a painful loss for anyone, and she spoke particularly courageously this morning in light of her recent loss.

Although it is important to welcome the progress that is being made by all the parties that are mentioned in the Government’s motion, which celebrates—quite rightly—what has been done, there is, as always, much to be done, especially given the scale of the problem that we face. I welcome the new financial resources for specialist nurses that the minister announced this morning. I agree with and support Richard Simpson’s amendment, which underlines how critically important it is for us to support carers; Stewart Stevenson highlighted that issue particularly well in his speech. I am pleased that the minister has indicated that the Government will support Richard Simpson’s amendment; this has been and will continue to be a consensual debate.

The minister spoke of how world-class research will be supported. I am familiar with the work that other members have mentioned, especially the work of Professor June Andrews and the dementia services development centre at Stirling University, to which Richard Simpson referred.

Those who know me will know—I am sure that I will see a little smile on Ian McKee’s face in a minute—that my first port of call in any health debate is to ask what is happening across wider Europe and the European Union. When preparing for the debate, I was pleased to read that 20 countries are teaming up to study Alzheimer’s and other forms of dementia, in the first test of the new approach to research in Europe.

More than a year ago, the Commission outlined that the recommended measures will encourage EU countries to pool resources for research, so that they do not duplicate efforts and waste precious funds. That must be welcome news for us all. Nearly 85 per cent of public money for research in Europe is spent on purely national ventures, so it is interesting to see that the EU is taking this tack.

EU leaders endorsed the joint programming concept on condition that projects were voluntary and aimed at a European or global issue. Dementia, which is a permanent or progressive decline in mental ability, was seen as a good subject for a pilot project, because it is a growing problem in all EU countries and the costs of care are huge—about €30 billion across Europe in 2005. It is hoped that the project will inspire joint research in other areas, including climate change. The then Commissioner for Science and Research said that if countries co-ordinate their efforts

“we will see a major step ahead”.

About 7.3 million people in the EU have some form of dementia—a number that is expected to double over the next 20 years, as life expectancy increases. As other members have said, Alzheimer’s is the most common cause, accounting for 70 per cent of all cases of dementia. As we know, there is no cure for the disease, which robs people of their memory and ability to think. The pilot project is part of a broader action plan that the Commission has drawn up in response to the anticipated rise in incidence of dementia. I hope that the Government and civil servants will take a close interest and be involved in that research. I am sure that Professor June Andrews will.

Dementia has touched my life in a variety of ways. It affected my husband’s grandmother, my sister-in-law and my friend Mary, who died recently in a home in Dalgety Bay; she was a Labour Party member and the dearly beloved wife of Bob, who is also a close friend. As Stewart Stevenson described, it really tugs at the heartstrings to speak to such people when one knows what impact the condition has had on their primary carers and wider family and friends, and the loss that is felt. My sister-in-law described losing her mother from dementia as the long goodbye, because it is never possible to have the grieving process and the relief from grief that others sometimes experience, although everyone’s form of grieving is different.

On a good note, as Jamie Stone said, progress has been made. Things have progressed hugely since my husband’s grandmother was in a Fife Regional Council-run home in the late 1970s and early 1980s. More recently, I visited the specialist new Benore care home in Ballingry, in my constituency, designed by June Andrews of the specialist dementia services development centre. Referring to what Stewart Stevenson was saying, environmental factors are highly important in the design of any unit. If we can make units in the sort of environment where the Benore care home is set, it can serve as a prime example for other such units across Scotland.

Photo of Rhona Brankin Rhona Brankin Labour

I very much welcome the debate. As many members have said, this is a hugely important subject and, given the changing demographics, it will continue to be hugely important for many years.

Like other members, I pay tribute to Jim Jackson of Alzheimer Scotland, who made a hugely important contribution, and to the work of Irene Oldfather and the cross-party group on Alzheimer’s.

I will focus on the inappropriate prescribing of drugs to people with dementia, starting with the potential dangers of labelling and treating dementia as just a medical issue. Rather like dyslexia or autism, the term or label “dementia” can help to explain what can be a range of often difficult behaviours. We can see a range of changes in people as they age—it is incredibly common for such changes in behaviour to occur as people get older.

The bottom line is that people with dementia are individuals with their own personalities and their own needs, and one of our biggest challenges is around how families and other care providers can meet those very individual needs.

We know what constitutes good practice in supporting older people with dementia as individuals, and we have heard about the work that has been done in Stirling, but we are still a long way from providing the sort of support that meets individuals’ cognitive needs, to which several members have referred.

There is a common medical response to dementia and some of the behaviours that are associated with it, and I wish to focus on the prescription of psychotropic, antipsychotic drugs.

In 2008, the all-party group on dementia at Westminster concluded that

“the widespread inappropriate prescribing of antipsychotic drugs is an unacceptable abuse of the human rights of people with dementia”, and that the “time for action” was therefore now. I very much support that conclusion.

It is no coincidence that many members who have spoken in the debate have discussed their own personal experiences of the failure of our system to meet the needs of family members. My own mother was prescribed antipsychotic drugs in a hospital setting. She was a 90-year-old with mild vascular dementia and had been admitted to hospital following a fall overnight, and she was rendered absolutely senseless by those drugs. The prescribing of those antipsychotic drugs was done with no reference to her family and it was a real struggle to get her taken off them. When she did come off them, she immediately regained her cognitive function—and retained her status as Scrabble champion in our family.

A 2010 study by Guthrie, Clark and McCowan stated:

“Antipsychotic prescribing to people with dementia in the United Kingdom is ... common and much of it is likely to have little benefit and cause harm. Stopping antipsychotics is not associated with significant increase in behavioural and psychological symptoms in dementia”.

There has been updated guidance on inappropriate prescription, but we know that it is still widespread. That is simply not good enough. There is an urgent need for medical reviews for older people across the board. Prescribing antipsychotics will stop only if GPs stop it. Work is being done on that by the Government, and I very much welcome that. We now know enough about the damage that is caused and the lives that are lost through the inappropriate prescribing of drugs.

It is time to stop talking and to take real action on the matter. I call on the Government to step up its actions, as that could make a very real difference to people’s lives.

Photo of Hugh O'Donnell Hugh O'Donnell Liberal Democrat

Not unexpectedly, this has been a very consensual debate. The dementia strategy that was prepared and published in June last year was warmly welcomed and continues to be warmly welcomed by people across the community. That has been reflected in the speeches that we have heard in this morning’s debate—in which we have heard the medical and clinical expertise of Dr Richard Simpson and Dr Ian McKee and about the involvement of other members in the cross-party group on Alzheimer’s over a long period.

Mary Scanlon made a particularly useful contribution, reminding us that Alzheimer’s, which is the most common term that we hear bandied about, is not the only cause of dementia. Rhona Brankin has just referred to vascular dementia in her speech. There are other related diagnosed and labelled conditions that we might not speak about—there has been no mention of Korsakoff’s syndrome or other issues. Generally, there is recognition across the Parliament that the dementia strategy and the co-ordinated working of all the partners involved has gone at least some way towards resolving some of the challenges that we have faced in the past and towards addressing the ones that we will continue to face. We have a growing elderly population. Consequently, the challenges relating to dementia will continue to grow.

As other members have said, there will not be too many of us who do not have a connection to someone who has been touched by the condition, whether in our family or a friend, and whether historical or contemporary. I am no different in that regard.

Periodically, my young daughter and I, like many fathers and daughters, have a difference of opinion. She is wont to say to me, “You have to be nice to me, daddy—I’m picking your care home.” By coincidence, I worked in a care home in 1994, and I am afraid that it was an oxymoron to refer to either “care” or “home” in that regard. My concern is that, notwithstanding the progress that we have all been speaking about, the provision of training, support and inspection has not yet reached a level where we can all be comfortable about any of our children saying such a thing and know that it is not a negative observation.

We need to address this, because challenges exist. Many care homes, particularly in the private sector, have a high level of churn among staff, with inadequate training. As Richard Simpson said, it is critical to maintain continuity and for relationships to build up between carers and people who suffer from the condition. If regimes are not rigorous or professional enough, there is a danger of not improving the living environment.

The minister reinforced her view on funding, and that is welcome, but I hear anecdotally—as do other members, I am sure—about what is happening with the range of specialist nurses who have been provided for various conditions throughout the health services. We are getting the message that they are under increasing pressure to move into more general areas of practice, with those working in acute care returning to wards, for instance—away from the very purpose for which they were recruited. I ask the minister please to ensure that pressure is brought to bear on health boards such that, notwithstanding the pressures on board finances, such things are not allowed to slip in the way that they seem to be doing.

Photo of Nanette Milne Nanette Milne Conservative

I well remember, from when I entered Parliament in 2003, the strenuous efforts that were being made then by the late Jim Jackson of Alzheimer Scotland, and by the cross-party group on Alzheimer’s, led by Irene Oldfather, to raise awareness of this devastating condition and to achieve better support and care for those people across Scotland who are affected by it.

The cross-party group’s commitment to helping people with dementia and their carers led to the development of the “Charter of Rights for People with Dementia and their Carers in Scotland” and to the acceptance by political parties that dementia must become a national priority. The Scottish Government’s publication of Scotland’s national dementia strategy was therefore warmly welcomed as a first step towards improving dementia care and support.

Dementia has always been around and has always caused stress and turmoil—for sufferers in the early stages of its development and for friends and families as the disease progresses. However, as the population ages, dementia is becoming more common. There are 72,000 people with dementia in Scotland and the figure is predicted to double in 25 years. As families become more dispersed and more elderly people live on their own, caring for people with dementia becomes a significant problem for society, which must be faced up to.

It is difficult and bewildering for people who are in the early stages of dementia and their families to come to terms with the gradual loss of memory and skills that leads to a loved one becoming a mere shadow of their former self, often lacking confidence and becoming depressed as they lose their ability to cope with the pace of modern living. I am pleased that Mary Scanlon and Ian McKee stressed the need to deal with depression in dementia sufferers, which is important.

It is key to patients’ welfare that their condition is diagnosed as early as possible, so that they and their carers can get access to the information that they need and the support services that can help them to live as normal as possible a life at home and delay, or indeed avoid, the need for admission to residential care.

If we are to achieve the best care for dementia sufferers, there must be an act of partnership between national Government, local government, the health service and the voluntary and private sectors. The skills and knowledge of staff in health and social care settings need to be improved, to ensure the dignity and respect to which people are entitled, as we heard from Hugh O’Donnell. As of right, people should have access to services that provide the appropriate support, care and treatment.

In the implementation of the dementia strategy, two key areas on which we need to focus are the availability of quality support and information for people with dementia and their carers following diagnosis and the need to respond better to dementia in the general hospital setting by considering alternatives to hospital admission and by better planning for discharge into the community, as Mary Scanlon said.

On the latter point, Conservatives think that there would be significant benefit if Lord Sutherland’s recommendation that health and social care budgets be merged were implemented. A single budget for health and social care and a common commissioning policy, to eliminate duplication, would lead to better continuity of care between the hospital and the community, which is important. It would reduce delayed discharges from hospital and ensure a better service for people and a faster response to addressing their needs. Such a joined-up approach would potentially lead to savings in administration costs, which could be ploughed back into front-line services.

We are happy to note the progress on the implementation of the dementia strategy. We particularly welcome the announcement of funding for specialist nurses and support for continuing research into the condition. Of course, all that is work in progress. Demands on services will continue to grow and it is important that scarce resources achieve best value in dementia care. It is proven that admission to residential care can be delayed if there is better support at home for patients and their families, and even a short delay can release resource to improve home care and support.

Careful monitoring of how the strategy operates during the next two years will feed into the review that is planned for 2013. I hope that the strategy will evolve after that, as progress is made on meeting the needs of people with dementia and their carers. The work that has been done so far is commendable, as members have said, but it is not complete. I hope that future Scottish Governments will continue to regard dementia as a national priority and focus on the needs of sufferers and their carers.

We will support the motion and the amendment in Richard Simpson’s name.

Photo of Richard Simpson Richard Simpson Labour

Let me begin by talking about success in early diagnosis. An additional 5,000 people have been registered during the past couple of years and we are likely to meet the target by the end of March. However, as Mary Scanlon said, if registration is simply a tick-box exercise to record diagnosis, it is not sufficient. We must use the opportunity that is presented by having a cohort of newly diagnosed individuals to ensure that research is undertaken into which non-pharmacological interventions, such as self-help and carer action, work. I hope that such studies will be part of the research that the minister said is being funded through the Scottish dementia clinical research network.

Members talked about legality and consent, and Rhona Brankin talked about the inappropriate use of antipsychotic medication. People are regarded as having capacity under the Adults with Incapacity (Scotland) Act 2000; it is only towards the end that capacity is so impaired that people are unable to participate in decisions. We need to address the matter carefully. I welcome what the minister said about antipsychotic medication, the use of which remains widespread. We need to understand when it is appropriate to use such drugs and ensure that they are not used inappropriately. As Jamie Stone said, it is hugely important that we protect vulnerable people.

The dementia integrated care pathway, which started in 2007, is an important advance, but standards of care of the sort that the minister mentioned in relation to the Mental Welfare Commission are also important. Irene Oldfather talked about the need to ensure that the standards are applied throughout the area of care. From April, inspection will be undertaken by social care and social work improvement Scotland rather than the Scottish Commission for the Regulation of Care, but it is important that the care commission’s regime of inspection of the suitability of the care home environment for dementia sufferers is toughened and includes a review of the use of antipsychotic medication. There should be a tough regime in that regard. The MWC’s report, “Best of Intentions”, which has been mentioned, showed how far we still have to come. As well as monitoring and annual reports, we must have a close inspection regime.

Members talked about training. The joint training by NES and social services is important. When I lectured in social work at the University of Stirling, I found it difficult to get social workers and doctors to undertake training together. We must make the effort to improve multidisciplinary training.

Carers also need training. It is not just about providing good information, although that is a good start, which is stressed in the strategy. We need to go further and provide good, effective support to enable carers to develop the right approach. Carers need training, support and respite. The Government has done quite a bit on respite and that work needs to continue. Carers also need emergency plans, because a source of stress is their concern about what will happen to the cared-for person if they are ill. Stewart Stevenson talked about the importance of carers and their need for such support.

I welcome the funding for specialist dementia nurses and the pilots for the system—although I must ask what happened after the joint futures pilot in Perth and Kinross 11 years ago, which was supposed to merge elderly health and social care but proved incredibly difficult.

Big Lottery Fund funding will be important, as is the research network funding. Helen Eadie stressed the European dimension to collaborative research. In the current period of austerity we need research to be focused and to take place in a number of countries.

As Ian McKee and Mary Scanlon said, there are many types of dementia. Only 60 per cent of sufferers have Alzheimer’s. Members mentioned vascular and multi-infarct dementia. There is a form of vascular dementia that is known as Binswanger’s disease, which I do not know much about; there is also dementia with Lewy bodies and frontal lobe dementia.

I did a case study on a patient who had alcohol-related brain damage. The individual had 11 separate case records. Everyone was doing their best, but the person was trapped in the revolving door of increasingly frequent admissions to hospital, which were hugely expensive and never resolved the issue. By tagging all the notes and indicating that people should phone or come to me, I was able to get the patient into an alcohol unit pending a guardianship order. I regret that it took six months to get the order and the wait cost the taxpayer £60,000, because the patient would not agree to move to a care home. There is a problem that we need to deal with in that regard.

We have not talked about issues such as assistive technology and telecare, which are important. We talked a little about palliative care, which is the new challenge. The dementia services development centre at the University of Stirling will run new courses on the subject.

We did not talk about new treatments that are coming along, so I end on a note of hope, as a tribute to Jim Jackson. There is the potential for vaccination against dementia, and if research is successful it might lead to a repeat of the tuberculosis story. Our successors in the Parliament might come to the chamber to talk about the next disease on the list of health challenges that we must face.

I welcome the progress that has been made and the efforts of Government. I welcome the support for the motion and for the amendment in my name.

Photo of Shona Robison Shona Robison Scottish National Party

I welcome the many very good speeches that have been made during this important debate. The quality of debate demonstrates that members have taken an interest in dementia over a long time and share a real commitment to influencing a transformation of dementia care and support.

That commitment is also shared by the range of individuals and organisations throughout Scotland that contribute to the dementia strategy’s implementation. I have been impressed by local partners’ enthusiasm for the strategy. There is a real appetite for making the changes to which many members referred.

I also give particular recognition to people with dementia and their families and carers for their huge contribution to the dementia strategy in the working groups and consultations leading up to the strategy’s publication and, now, its implementation. We felt that it was really important to hear from those who are directly affected by dementia and from their carers.

I mention in particular the Scottish dementia working group for its huge role in all the work. All its members have a diagnosis of dementia and they have campaigned and raised awareness of the need for better dementia services since 2002. I was gratified by the amount of time that they devoted, and continue to devote, to that work. They bring valuable expertise to the agenda.

It is also appropriate to mention the MBE that was awarded in the new year honours list to James McKillop of the Scottish dementia working group for services to people with dementia. The honour reflects the considerable value of his contribution to that area of public life. It is great to see recognition of that.

I turn to some of the points that were made in the debate.

Richard Simpson mentioned the core funding for the continuation of the dementia services development centre. It receives section 10 core funding under the Social Work (Scotland) Act 1968, which will continue into 2011-12. Future years will be considered at the appropriate time, but our support for the centre has been made clear.

Mary Scanlon touched on depression and mental health and wellbeing. We are writing to boards with the applied psychology report, which identifies the need to increase the workforce, particularly in response to the needs of older adults, so we are picking up on some of the issues that she raised.

Jamie Stone gave a personal account of his family’s experience of dementia. He acknowledged that things have moved on a long way from the 1970s but, as many people said, there are still challenges. I think that it was Hugh O’Donnell who said that we still have challenges within our care sector.

Irene Oldfather has had to leave to get her flight, but it was good that she rearranged things to take part in the debate. I recognise her role within the cross-party group on dementia. She made some important comments on end-of-life care, which is incredibly difficult for families. Ian McKee also picked up on that point.

Irene Oldfather also mentioned the Mental Welfare Commission’s “Best of Intentions” report, which reminds us that, although huge progress has been made, there is still more to do.

Helen Eadie talked about the long goodbye. I have heard that phrase before, as I am sure we all have. It captures some of the difficulties in personal relationships. Stewart Stevenson laid out what that really means for partners or other family members who feel the loss even though the person is still alive. Those are difficult emotional issues to deal with.

Rhona Brankin talked about her family’s experience of the use of antipsychotic medication. The situation that she described is exactly what we want to avoid. She mentioned the updated guidance on prescribing, which is a good thing, but she indicated that more work needs to be done to stop inappropriate prescribing and I acknowledge that. Richard Simpson talked about this too. We need to research and understand where it is appropriate to prescribe antipsychotic drugs, because there will be cases in which it is appropriate, but we absolutely must stop inappropriate prescribing, and the case that Rhona Brankin described was one of those.

I thank members for their speeches in a very good debate. I will be happy to keep them informed of the progress that we make.