Dementia Awareness Week
Members' business is a debate on motion S1M-952 in the name of Malcolm Chisholm.
Motion debated,
That the Parliament believes that the care of people with dementia represents one of the greatest challenges to health and welfare services throughout Scotland because of the prolonged and complex nature of the illness and the severity of its consequences for the large numbers affected and their families, and welcomes the initiative of Alzheimer Scotland—Action on Dementia during Dementia Awareness Week to highlight the need for better planning mechanisms to provide integrated and comprehensive health and social care services for this group of people.
Some members will have realised that this is not dementia awareness week, but I lodged the motion several months ago and I am pleased that it has been selected as the first members' business debate after the recess.
Until recently, I did not have much knowledge of dementia, partly because I have never known anyone with dementia. I accept that many of the people who speak after me today will have far more knowledge about it. I remind people that dementia is the fourth biggest killer in this country; it affects 60,000 Scots and that number is rising. About 55 per cent of that number have Alzheimer's disease.
Dementia is a devastating illness, which progressively destroys brain cells. It is extremely distressing for the person with dementia and for their carers. It affects memory, language, motor skills and behaviour and requires a vast amount of care. We should remember that 60 per cent of people with dementia are cared for in their homes.
I want to pay tribute to Alzheimer Scotland—Action on Dementia for all the work that it has done over the years in highlighting the issues and problems arising from dementia. I also want to congratulate Alzheimer Scotland on the important initiative that it launched in dementia awareness week, which is referred to in the motion.
I also acknowledge what has been achieved recently. I looked at Alzheimer Scotland's briefing to MSPs before the Scottish parliamentary election and noted the remark that
"laws relating to the management of money matters for those with dementia"—
and other incapable adults—
"date back to 1849 and laws relating to personal welfare date back to 1585."
I am sure that we are all delighted that one of the first acts to be passed by the Scottish Parliament was the Adults with Incapacity (Scotland) Act 2000, which addressed those problems.
I pay tribute to the many superb initiatives throughout Scotland for the care of dementia sufferers. Margaret Smith, Dorothy-Grace Elder and I visited Craw Wood in the Borders at the beginning of the recess and I believe that Margaret Smith and Mary Scanlon visited another project in Inverness this week, which they commended in the Health and Community Care Committee this morning. The Midloch project in Glasgow was also commended in the Health and Community Care Committee this morning, which, by coincidence, Alzheimer Scotland attended. Today, while we highlight the continuing problems that arise, we must remember all the excellent new initiatives.
A Scottish needs assessment project report on dementia in 1997 pointed out:
"The authors wish to emphasise that people with dementia and their carers are currently a significantly disadvantaged group in terms of both the number and quality of services. This shortfall is particularly serious in view of the continuing increase in the number of people with dementia."
In the view of Alzheimer Scotland, that is still the situation today. This morning, I asked the organisation what the main barriers to progress were on services for people with dementia. Three things were highlighted: lack of information and data about how services are provided, lack of understanding of the complexity of the needs of people with dementia and, of course, funding problems.
The first problem was highlighted in 1997 by the Accounts Commission for Scotland in "The commissioning maze: Commissioning community care services", which identified the fact that people with dementia are one of seven main care groups, but that data on services to meet their needs are extremely poor. That problem must be addressed, because our starting point must be what exists at present.
Even more important, however, is where we want to go, which is where the Alzheimer Scotland template is so important. In the template, which was launched in dementia awareness week, the organisation has admirably and definitively outlined the range and volume of services that should be available in every area of Scotland. The template highlights diagnostic and assessment services, early-stage therapeutic services including drugs, early-stage support services including information, counselling and advocacy, and community care services including intensive home support and long-term care. I cannot go through the template in detail, but I will pick out two or three of the main points.
First, Alzheimer Scotland emphasises the importance of early-stage support, because research indicates that early intervention can reduce morbidity and depression among people with dementia, reduce carer stress, reduce the need for crisis intervention and delay, or even prevent institutionalisation.
Secondly, the group emphasises the importance of integrated and specialised home care services, provided by the same, familiar team of care staff. Thirdly, the group feels that, when long-term care becomes necessary, people with dementia function better in small dementia units where they can be cared for by staff with dementia care training. That is exactly the kind of care that we saw at Craw Wood in July. Through all this, Alzheimer Scotland emphasises the importance of multidisciplinary working, with a lowering of the boundaries between professionals in health and social care services.
That leads us to the issue of funding and the Sutherland report in particular. Some members may wish to turn the whole debate into a debate about Sutherland. The report is clearly relevant, and many arguments in favour of Sutherland come from looking at the services for people with Alzheimer's. It is difficult to concentrate only on free nursing care when people with Alzheimer's gain more from personal care than from nursing care. The emphasis on multidisciplinary working also makes the formulation of free nursing care rather difficult, because people are not merely doing their traditional professional work. It is very unfair that people with Alzheimer's should pay for their illness when people with cancer and heart disease do not. However, it must also be pointed out that if money is put into eliminating charges for personal care, that same money, self-evidently, cannot be put into other services that dementia sufferers require, for example respite care.
We know that when resource transfers took place—they are still taking place—the beds used for respite were often forgotten. That resource was lost when long-stay national health service beds closed. We need new resources for new drugs. Several drugs, such as Aricept, are not available throughout Scotland. Sometimes there is a waiting list, and sometimes there is postcode prescribing. More resources are also required for the key early-stage services and for the specialised home support that I referred to earlier.
There are genuine dilemmas for the Executive and the Parliament when they address the Sutherland report over the next few weeks. Whatever the outcome, and whatever is charged for ultimately—we should remember that Sutherland himself advocated charging for housing and living costs, which is sometimes forgotten—we ought to have more consistency in charging for community services and reasonable levels of charging, with a maximum level for each service that is charged for. It would also be reasonable for more income and capital to be disregarded when considering charges for both community services and long-term care.
I have probably gone on too long, given the number of people who want to speak.
It is understandable that members get carried away when speaking on an important issue.
I could start with some statistics—for example, the fact that 61,000 people suffer from dementia—but it is important to focus on the individuals who are dementia sufferers and their families, and the difficulties that the state places in their way by not operating fairly. I will come to Sutherland's views on that in a moment. People who look after either their parents or their spouse at home are unpaid carers who carry great burdens. They do so with love and affection, but they carry great burdens, both physically and emotionally. If the parent or spouse reaches the stage at which they have to go into a nursing or residential home, we all know what happens: if the people have assets, their house is sold from under their feet to pay the bills for personal care. Like Sutherland, I have no problem with people paying for their housing or living costs, but I am talking about personal care. It is wrong that people should have to pay such costs.
Even when a house has been transferred several years before into the name of older children in the family, the family is affected. Such a transfer does not protect the home, which can be clawed back by the state if the transfer is considered to be an attempt to avoid paying for personal care. That causes stress to a family at a time when dreadful decisions are being made about putting a husband or wife, or a mum or dad, into a home. That is a terrible decision to have to make. We have all met anxious people with great concerns about such decisions, which they have deferred until, perhaps, they had no option.
I will focus on three matters—quickly, so that as many others as possible can speak. First, the Scottish Parliament must implement the Sutherland report and make personal care free at the point of delivery wherever it takes place. We owe that to the Scottish people and a just society depends on it. We are talking about only £110 million, a figure that must be compared with the obscene amount of money that is being thrown at the millennium dome. I know everyone thought that I might bring that up, but we must get our money priorities right. As Malcolm Chisholm says, it is unjust that only people with this illness pay for personal care.
The second matter is day care. I visited the Broomhill Day Centre, which integrates dementia sufferers with other elderly people who are there for respite. The centre has to grub around for funds from various sources such as the lottery, social work departments and voluntary organisations, but it performs a fundamental service in retaining elderly people in the community and sustaining their carers. I have lodged a question to ask whether the coalition will make a commitment at some point to make day care provision a statutory requirement and to underpin it with proper funding.
My third point relates to the carers who are faced with the dreadful decisions that I have mentioned. I want carers to be paid an allowance, the use of which would not be determined for them. It is a radical idea. They could blow their allowance on some clothes from Marks and Spencer or use it to take a week's holiday. That would give them a lift, a bit to themselves to keep them going while doing a task that they do with love and care but that often undermines their health, which can have an impact on their ability to care for their ailing relative.
On 14 September, a march of pensioners in Edinburgh will address not only the failure of the pension, which is another matter entirely, but the failure to implement the Sutherland report in England and the decision to refer to just nursing care.
I hope that Mr Gray listens to the pensioners and to the many cross-party voices in the Parliament and does the right thing by our older people.
I am not sure whether I should declare an interest in this debate. All of us should, probably, because anyone who is idiotic enough to enter politics is a candidate for suffering from mental problems or forgetfulness in later years. I have already qualified by standing up on one occasion to pay tribute to Johann Lamont and failing to remember her name.
Many voluntary groups that help people who suffer from Alzheimer's have suffered cuts in real terms in recent years. I keep in close touch with a group that I helped to start up in the ward that I represented as a councillor. Its small grant has stood still for the past five years, which has resulted in a significant real-terms cut. The issue is the funding of councils in general, as they fund many local groups.
Respite care and day care also involve funding by councils. Respite care is important. It has improved a little in some areas that I know about, but we must not forget the vital role that it plays and the fact that it can be assisted by relatively small sums of money. There is a national UK issue about carers. Some of my clever colleagues, such as Professor Steven Webb in Westminster, have made good suggestions about ways to help carers. However, the Scottish Parliament can do things to help respite care and day care.
The briefs produced by Alzheimer Scotland make clear the fact that no one has a grip on the issue. There must be a combined and joined-up government effort—this is a prize area for joined-up government. There have been numerous speeches on joined-up government, but practical examples of it are as near zero as makes no difference.
If someone suffers from dementia, they or their relatives have to pay for their illness, whereas if someone has a road accident and loses a limb or something, the state pays. That is just ridiculous. Dementia is a form of illness and disability like any other.
The Executive and the Parliament should go fully with the Sutherland report's recommendations as soon as possible. That would be a big expense, and the implementation of all the report's recommendations may not be possible in one year, but we must work hard towards that, because it is the only fair way to deal with the problem and to put resources into helping the growing aged population, which we will all join in due course.
I commend Malcolm Chisholm on securing the debate, which gives us the opportunity to ask whether dementia is treated on a par with other chronic illnesses under the national health service.
I quote from a leaflet on Alzheimer's disease:
"A person with dementia continues to be a person of worth and dignity and deserving the same respect as any other human being."
That is particularly important as far as this illness is concerned. Despite dementia care being person centred, a recent survey revealed that 80 per cent of social care workers, including care assistants, had no relevant training or qualifications. That is stated in Alzheimer Scotland's "Action on Dementia" briefing paper, which also states that 60 per cent of people who care for people with Alzheimer's suffer ill health or nervous problems as a direct result of caring.
As Malcolm Chisholm mentioned, Margaret Smith and I visited the Mackenzie Centre in Inverness last week, as part of our community care inquiry. The centre is a particularly good partnership between organisations, offering care and essential support for people with dementia and their carers. It is a day centre that provides respite and stimulation, and helps to keep the mind active. The project is funded jointly by the health and social work services departments of Highland Council, and is managed by Alzheimer Scotland. The paid staff have all had specialist training in dementia. The problems that are faced at that centre probably epitomise the problems that are faced across Scotland.
A pilot project, funded by the Clutterbuck bequest fund, was recently run at the centre. It was very successful, and provided up to 50 hours of home care to people in the early stages of dementia, when intervention is essential—a point that Malcolm Chisholm recognised. The home care is also aimed at people who do not want to go into day care.
The social work services department of Highland Council examined closely the success of the project, but simply has no money. I commend the good practice in such projects, which helps to keep people in their homes and to ensure that they get companionship, nutritious food, mind stimulation, and care and support. It also saves money on residential and hospital care and ensures that patients receive treatment that is appropriate to their needs. It is sad, in this day and age, that where a recognised, successful project exists, we cannot find the money to support it.
I hope that the recommendations of the joint futures working group, the Executive response to the Sutherland commission and the recommendations of the community care inquiry report will ensure that such good, sensible practice, which is backed up by empirical data demonstrating success, will be made available to people with dementia across Scotland.
I begin by declaring that I am the joint holder of a research grant from the Alzheimer Society, to test the education of general practitioners in dementia.
In the early 1980s, I sat on the mental health programme planning group in the Scottish Office, one outcome of which was the Timbury report. Professor Timbury was absolutely committed to the support of dementia patients and their carers, and it is regrettable that, 20 years on, the care and support provided has not developed as fully as he would have liked.
We should acknowledge that dementia has been recognised as a separate condition only for about 40 years, which is quite a short time in medical terms. We should begin with early diagnosis and proceed to effective management regimes, which can significantly slow the progress of the illness, and manage its most debilitating features. Early diagnosis must be followed by comprehensive support, which exists in some areas. If the mental health framework is developed—we have had a firm commitment to its development from Iain Gray in previous debates—we will be able to be proud of the support that we give dementia patients and their families in Scotland.
Last week, I met carers from Central region at a question-and-answer session in Falkirk, which followed a previous session at a carers forum attended by 120 carers from the region. They expressed a number of concerns, particularly about respite care. Those families and carers desperately need a guarantee of adequate respite. Day care provision is another aspect of respite care. A carer's ability to lead his or her own life and remain in good health is crucial.
The second thing that has been brought to our attention by carers, but which is not a matter for this Parliament to deal with directly, is the complexity of the benefits system as it relates to dementia sufferers and their families. There are some serious problems that need to be addressed. The UK Government's one-stop benefits shop should help, and the proposed stakeholder pensions should provide recognition of the debt society owes to carers.
The compact that the Scottish Executive has developed with carers, and the further £5 million that has been provided in addition to the previous £5 million, should be helpful. Dementia groups are watching expenditure in this area carefully. The Executive's support for the dementia centre at the University of Stirling is welcome, as is the other unit in that university, funded by the Scottish Higher Education Funding Council.
In responding to the Sutherland report "With Respect to Old Age", we have the opportunity to ensure that nursing care for dementia sufferers is recognised as an intensive form of personal care that is absolutely essential to those patients. We are faced with difficult choices about boundaries in personal care if we are not going to fund it fully, so I hope that the matter will be addressed very clearly in any Executive response to the report.
In the Health and Community Care Committee this morning, I highlighted the opportunity that I believe is presented to the Executive in responding to Sutherland to seek a much more radical solution embracing all long-stay care. I shall elaborate on that solution in the chamber and in other forums in the next week. We can be proud of the fact that this Parliament's first social legislation was the Adults with Incapacity (Scotland) Act 2000, which has been welcomed by Alzheimer groups.
Health is a mirage. As our predecessors dealt with infectious diseases, we have been faced with cardiovascular and cancer problems as our main priorities. As we tackle those—we are tackling them and treatment is improving—we will be faced with increasing numbers of patients with dementia. If this debate has helped to raise awareness, a start has been made. The start that the Executive has made in this area with the mental health framework is excellent; we must build on it.
I congratulate Malcolm Chisholm on securing this debate and thank all those who have spoken about different facets of the problems.
Richard Simpson, Malcolm Chisholm, Mary Scanlon and I heard evidence at the Health and Community Care Committee meeting this morning from Alzheimer Scotland—Action on Dementia. The witnesses sketched various examples of cases. One story that caught my attention was about an old lady who constantly went up and down stairs looking for the bairns. The bairns were grown up and long gone and were probably parents and grandparents themselves, but she kept on looking for them. That is an extremely difficult type of case for carers to deal with at home.
At the other extreme, as I have heard from many nurses, there can be violence against nurses and carers. General practitioners have told me of once loving mothers who, when they developed dementia, turned round and spat in the face of the daughters caring for them, and of loving fathers who suddenly started striking out with their sticks at their carers or close relatives. Those carers are most likely to break down completely, physically and mentally.
We are subjecting carers to double the punishment by the meanness of our provision for them and our lack of recognition of what they suffer. For so many of them, it is a quite terrible life. I know people who sometimes care for two or three elderly persons with various degrees of dementia. In the Scottish population, there are 36,600 dementia sufferers at home, which means that the lives of approximately 36,000 families are altered by the presence of a person who, through no fault of their own, has the condition. People have to stump up for care.
Furthermore, I ask the Parliament to pay attention to the generation that is most likely to suffer from dementia; the generation to whom we owe most and who went to work at the age of 14 and did not stop until they were 60 or 65. They have more than paid for their place in some good caring institution—and by good I do not mean one of those gigantic shelf-stacking hospitals hated by the elderly and visitors. We must fight for the retention of smaller community hospitals such as Blawarthill in Glasgow and for sensitivity in provision.
We saw examples of sensitivity in the Borders. An old car was beautifully restored in the garden of one particular nursing home, and the old people liked to sit in it and smell the leather, as it brought back happy memories for them. However, although we must move forward with such sensitivity, we must also spend the money. These people deserve it.
Before I call the minister to wind up, I would like to apologise to members whom I have not been able to call and thank the minister for agreeing to cut short his speech to allow other members to speak.
I congratulate Mr Chisholm on securing today's debate. I am pleased that so many members have signed the motion and have either spoken or sought to speak on it. That reflects the growing interest in dementia, which is a great and important thing. Dementia is a disease that many fear and misunderstand. We have to overcome such fear and misunderstanding.
The Executive agrees with the motion: the care of people with dementia represents one of the greatest challenges to health and welfare services throughout Scotland. As several members have said, there are around 61,000 people in Scotland with dementia, and as Dorothy-Grace Elder said, two thirds of that number have mild dementia and often live in the community at home or with family. The third who have moderate to severe dementia tend to be in a care home or hospital. That means that many agencies such as health boards and trusts, local authorities and the voluntary sector have a responsibility to improve the quality of care for people with dementia.
Care is a complex of early-stage service support, medication where appropriate, counselling services, respite care, home care, day care, adaptations to housing or special needs housing and sometimes long-term care, all of which have been mentioned by many members.
That matrix of services makes the "Framework for Mental Health Services in Scotland" very relevant, as Dr Richard Simpson pointed out. Launched in September 1997, its continuing aim is to focus the efforts of all agencies to ensure that the required complex of services is available. We have already said that there is still much work to be done on implementation of the framework, and the mental health and well-being support group continues to visit health board areas to push this work forward.
Furthermore, the proposed Scottish commission for the regulation of care will have a major role in ensuring and improving the quality of care available to people with dementia, in both day care and residential care. The importance of the quality of care was mentioned towards the end of the debate.
Indeed, the National Care Standards Committee is drawing up national standards by which all services will be regulated. The draft standards on care for older people have been prepared by a working group that has been chaired by Professor Marshall, who is the director of the Dementia Services Development Centre, and are out for consultation.
It is right that the motion should acknowledge that much of the progress in dementia care in Scotland has been driven by organisations such as Alzheimer Scotland and the Dementia Services Development Centre, which is based in Stirling. We should acknowledge Alzheimer Scotland's leading role in the Alliance for the Promotion of the Incapable Adults Bill, which worked so constructively with the Parliament in the passage of the Adults with Incapacity (Scotland) Act 2000.
The Dementia Services Development Centre has done much innovative work in areas that have been referred to, such as training, and it has done some extremely important work on dementia-friendly design. Its work in both of those areas can be seen played out in day and residential care throughout Scotland.
A range of community care policy developments by the Scottish Executive will contribute to better services for people with dementia. They include joint working between agencies, supported by the modernising community care fund; the carers strategy, which was announced in November, and the developments that will flow from that; and, as Mary Scanlon mentioned, the work of the joint futures group, which will be developing its recommendations this month in four seminars around Scotland. Many of those developments are recommendations of the Royal Commission on Long Term Care of the Elderly. As has been said, the recommendations that are relevant to funding care will be progressed in the forthcoming spending review.
Mary Scanlon made the important point that those who have dementia should retain their dignity. It is central to our community care agenda that care should be designed to what users want. That holds good for people with dementia. The Dementia Services Development Centre has nearly completed a two-year project seeking to develop ways in which people with dementia can be encouraged to express their own thoughts and feelings on the services that they receive and on how service practitioners and service providers listen and act on those views. That gives an important underpinning to the improvement of the quality of care.
Such innovative work is typical of the work of the centre and is one reason why we provide it with £133,900 a year. For some time, the centre has been planning a new building as the next stage in its development. More than £1 million has been raised by public appeal from individuals and from organisations in the Scottish financial and business community. I am glad to take this opportunity to announce that we are contributing £500,000 to allow the centre to proceed to the tendering stage.
We have hardly touched on a subject that has a broad range of aspects, but time is short. The Scottish Executive acknowledges that we can do much to improve the quality of care and services that is provided for people with dementia. We have begun the process of change, but we are only at the beginning. We will continue to support that process, to which this debate has contributed.
Meeting closed at 17:18.