Dementia Carers’ Voices
The final item of business today is a members’ business debate on motion S4M-05522, in the name of Jackie Baillie, on dementia carers’ voices. The debate will be concluded without any question being put.
Motion debated,
That the Parliament understands that there are currently 84,000 people in Scotland living with dementia, a figure that is expected to double over the next 25 years; acknowledges that caring for someone with dementia can be a difficult experience; values the contribution made by families and carers of people with dementia in the Dumbarton constituency and across Scotland who, on a daily basis, provide support to loved ones with the illness; recognises the importance of carer support and respite where appropriate; notes the importance of raising awareness of dementia and ensuring that people with dementia are treated with dignity and respect, and welcomes the work of a number of key stakeholders and organisations who give a platform to the views and experiences of carers of people with dementia across Scotland including the Health and Social Care Alliance’s Dementia Carer Voices Project and Alzheimer Scotland’s National Dementia Carers Action Network.
17:07
I think that members will agree that there should be a welcome change of tone in this debate.
I consider myself extremely privileged to lead this debate on dementia carers. Let me start by acknowledging and welcoming the support for this issue that exists across all parties in the Parliament, as is evidenced by the members who have remained in the chamber this evening. I also very much want to welcome to the public gallery Tommy Whitelaw, whose work—and his journey with his mother Joan—led to the Scottish Government providing funding for the dementia carers’ voices project.
The dementia carers’ voices project recognises the central importance of the carer’s voice in informing the future shape of services and in ensuring that the needs of carers are recognised in that process. Members will recall that, almost two years ago, Tommy Whitelaw started his tour of towns and cities across Scotland—walking much of the way, I suspect—to raise awareness both of the impact of dementia on families and of the difficult but vital role that is played by carers.
I never met Tommy’s mum, but I know that she was not defined by her dementia. She was a daughter, a sister, a wife, a friend, a workmate, a neighbour and a valued member of her community. I know that she was a much loved mother and, clearly, a very special lady. Tommy was at his mum’s side when she received her diagnosis of dementia, but they went home without support. At a later stage of her condition, they were told that there was not much more that could be done and it was time to consider residential care. For much of their journey in dealing with dementia, they did not have access to a wide range of support. Certainly, there was little support for Tommy himself to help with the isolation and loneliness that he felt as a carer, which I know is felt by many carers in my constituency and throughout Scotland.
Despite the much-lauded carer and dementia strategies that successive Governments have put in place, the experience of Tommy and Joan is repeated by other people. We know that from the stories that Tommy has collected and continues to collect, which are at the heart and foundation of the dementia carers’ voices project.
Something is not working well at a local level. There is a postcode lottery of care, some of which involves gaps in health provision and some of which is about differences in services between local authority areas. However, irrespective of where the problem lies, the challenge for us in this chamber is to ensure that the best possible standard of care is provided wherever someone lives in the country.
In that regard, the dementia carers’ voices project will be not only helpful but extremely useful to the Government because it will use the stories that Tommy has collected on his journey to shape thinking about services, which I hope the Government will take and use; highlight the role and importance of carers, which I know the Parliament recognises; and consider how we empower carers by using the charter of rights for people with dementia. I think that virtually every member in the chamber signed up to the charter, but it is not yet real.
We need to ensure that the isolation and loneliness that Tommy experienced is not felt by others and that there is a much better understanding of dementia and the carer’s journey among health and social care professionals. Important and helpful messages are already emerging, and I think that we should learn from them now rather than simply wait until the end of the project. One of the messages is that we do not currently ask about the person inside the dementia, but if we are to provide the best possible person-centred care we need to know about their lives, about what they do and do not like, and about them as individuals so that we can put the individual very much at the centre of their care.
We know, because carers tell us, that there is no consistency of care staff, and yet we know that familiarity and a routine is so important to somebody with dementia. We heard a story from a carer in the Highlands—I think—about someone having 104 different care staff in a short space of time. That is not the way in which we want to treat people with dementia. We also find experiences in the project that suggest that people need a friend and somebody to talk to who has been there before as a carer—that is something quite simple. Above all, there is the whole question of awareness.
I will give members just a couple of quotes from carers who described to Tommy the issue for their becoming aware of services and being able to access them. One said that it is
“like trying to crack a secret code.”
Another one said that it is
“like trying to break MI5.”
That should not be the case; we should be much more engaged in providing information to people. Another carer said:
“I now know that help is there but you have to know where to look, no one comes to you with information or instructions.”
Some of that is easy to resolve.
I very much welcome the Scottish Government’s guarantee of at least a year’s worth of post-diagnostic support, which I think will be helpful in changing the landscape. It has huge potential to assist people and to prevent carers from falling into crisis situations. It would be significant if the minister could signal that the support will be implemented in all care settings, including care homes and continuing care. There are 86,000 people who have already been diagnosed who might not have access to that kind of support. I strongly urge the minister to ensure that they are included.
All members in the chamber recognise the importance of carers and the amount that they save the state. There are good strategies in place, but it is evident from the experience of Tommy on his tour that we need to do so much more. I commend Tommy’s journey to members because what he has done is critically important for informing us what is truly happening out there. Let us use his journey as a driver for change.
17:14
It is traditional to thank and congratulate the member who brought the subject of a members’ business debate to the chamber. In so congratulating Jackie Baillie, I would like to add a few personal thanks of my own.
I thank the Bearsden resource centre of Alzheimer Scotland. On a personal level, the staff there have supported me in my journey as a carer, and the carers group that they hold on a Tuesday evening is incredibly important to my constituents.
I also thank Tommy Whitelaw, whose journey has very much reflected mine. I will try hard not to cry at this point, because the first two times I met Tommy he moved me to tears. When he came to Parliament in 2011 to present to Nicola Sturgeon—then the Cabinet Secretary for Health, Wellbeing and Cities Strategy—the letters that he had collected on his journey, I ended up crying in a toilet because I had become quite upset. On our second meeting, a few weeks later, when Tommy came along to talk to the annual general meeting of Carers Link East Dunbartonshire, I once again ended up crying in a toilet, because it is incredibly difficult, emotionally, to read those letters and hear about the difficult journey that people who care for people with dementia go on. I think that my getting upset at the time had to do with the fact that, at that point, I was at a difficult place in my personal journey as a carer, which is no longer the case.
My third meeting with Tommy was much more joyous. It was in Bellahouston park, on a sponsored walk that had been organised by Kris Rodden who works for the Bearsden resource centre of Alzheimer Scotland. I went along with my Dalmatian, Rhona, and we had a nice day out.
Those thanks from me are personal. However, as the MSP for Strathkelvin and Bearsden, I say that looking after and supporting people who care for people with dementia is incredibly important. It is estimated that, by 2035, the number of people aged 75 and above in Bearsden will have risen by 88 per cent, from 9,000 today to more than 17,000. Given that more than 6 per cent of people aged over 75, and 20 per cent of those in their late 80s, are likely to have dementia, it is clear that a lot of people in my constituency will be caring for a lot of people with dementia.
That support for carers is absolutely vital. Someone who cares for someone with dementia is often that person’s voice, as they are the one who can delve inside and remember what the person with dementia would want to happen, even though they cannot say what it is.
Carers Link supported me as a carer and also had the courage to employ me as a peer support worker for nine months. Carers Link supports 932 carers. In recent years, it has realised that 44 per cent of those carers look after someone with dementia. Already, in my constituency, we can see the numbers rising.
I want to highlight Carers Link’s day cafe, where people who are caring for folk with dementia can come together every month to get support from each other and learn from each other’s journeys.
I will conclude by making a suggestion that I have made before during debates on dementia carers. We have talked about creating a card that young carers can use, because it is often difficult for a young carer to be recognised as such. Once again, I suggest that we have a dementia carers card because, no matter how many times I turned up in the accident and emergency ward, waving my power of attorney, I was not always recognised as the voice of the person who could not answer for themselves, especially in an accident and emergency situation. A wee card that says “I am caring for this person with dementia” would perhaps give us a bit more access to health professionals.
17:19
I congratulate Jackie Baillie on securing debating time for this important issue. I commend Irene Oldfather for the immense amount of work that she did as a member of this Parliament to raise awareness of dementia, and for her continuing commitment to all those who live with dementia, and their carers, in her new role with the Health and Social Care Alliance, as programme director of the dementia carers’ voices project.
While preparing for the debate, I found myself travelling far down memory lane to the days—which must now be more than 60 years ago—when my granny stayed with us for the last two years of her life. Granny was fondly described as a bit “dottled”. She treated me as one of her school pals, entertained the family with her favourite songs from the past and, once, embarrassed us hugely when she walked into the house where she lived as a child and told the current occupant in no uncertain terms that she had no business being there.
I remember the funnier incidents from granny’s final years, but I was quite unaware of the stress that her dementia caused to my parents—particularly my mother, who had to cope with regularly soiled bedding and clothes at a time when easy care materials and washing machines were not available, while trying to keep granny happily entertained and safe. That included making copious amounts of tea and snacks for the many visits from her large family, most of whom were quite content to sit and chat and leave mum to do all the work.
All of that was against a background of very little sleep, because granny regularly got up at night to collect her young laddies from school. To cope with that, my mother slept with her with the bedroom key hidden under her pillow. I do not remember where dad slept, but probably on a sofa in the living room—all that for two whole years.
In those days, there was no recognition of carers and no organisation to give support or advice, just the occasional chastisement of some family members by the general practitioner, who recognised that my mother’s own health was suffering from hard work, sleeplessness and lack of practical support.
Thankfully, things are improving for carers, but there are still many people in Scotland who look after loved ones with dementia without recognition or proper support. That is why projects such as dementia carers’ voices are so important because they raise awareness of the impact of dementia on the families affected by it and of the difficult but vital role played by the carers of the 86,000 people currently living with dementia. That figure is already up from 72,000 two years ago, and it is set to double over the next 25 years as the population gets older.
The unremitting commitment by Alzheimer Scotland and the cross-party group led by Irene Oldfather when she was an MSP to help people with dementia and their carers led to the development of a charter of rights for those people, which was followed by the dementia strategy published by the Scottish Government in 2010. That recognised the need for quality support and information to be made available immediately after diagnosis, for better understanding of dementia by health and social care professionals in both hospital and community settings, and for better planning for discharge back into the community aimed at delaying the need for residential care through improved home care and support.
As we all know from our work locally, three years on there are still many people who do not receive the community support that they need and are entitled to, with delayed assessments and unreliable provision of home care. We all hope that the developing integration of adult health and social care will improve the situation for those not adequately provided for.
The efforts of Tommy Whitelaw, following the death of his mother from dementia, have built up a large body of evidence from people who have cared for relatives with dementia, illustrating the problems that they have faced—from isolation and the emotional rollercoaster of the caring experience, to health, housing and financial worries. His work has led to a recognition of the importance of the voice of the carer to inform future service provision and to empower carers. Like Jackie Baillie, I sincerely congratulate him.
If the project leads to a better understanding of dementia and its related issues among health and social care professionals, an increased awareness of carer rights, better support and information on sources of help, and less isolation of carers, it will have been very worth while indeed. I commend the project and Jackie Baillie for bringing it to our notice.
Before I call John Pentland, I am minded, due to the number of members who still wish to speak in the debate, to accept a motion that the debate be extended by up to 30 minutes.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Jackie Baillie.]
Motion agreed to.
17:24
The statistics on dementia tell only part of the story. We also need to hear the personal experiences of those with dementia and the carers and families who support them. That is why the project is so valuable and why I thank Jackie Baillie for lodging the motion. I also thank Tommy Whitelaw, the dementia carers’ voices champion, and others who provide a platform for carers’ views on the work that they are doing.
I recently met people with dementia and their carers in my constituency when I attended a living well with dementia cafe that meets monthly at Motherwell Football Club’s Fir Park stadium with the aim of raising awareness of dementia in the community. It is a fantastic service that provides a regular meeting point for people with dementia and Alzheimer’s and their carers, giving them the opportunity to meet healthcare professionals and stakeholders in dementia care to discuss any concerns that they have. I was struck by the activity that the cafe brings to the community. I am certain that the vibrancy of that meeting made people feel welcome, comforted and understood. No one was excluded, and staff did an excellent job in providing reassurance and advice to all 60 people who attended. The service is invaluable to our community. With the increasing prevalence of Alzheimer’s and dementia, it is vital that people do not feel alone in their concerns. We need many more such services.
Hearing what my constituents had to say made it clear to me that we need to enhance the services that are available to support them and to look carefully at the Scottish Government’s policy on the development of those services. Carers—whether of people with dementia or people who require care for other reasons—contribute an enormous amount to society, but that contribution is not easy to measure and is not generally recognised by the bean counters, statisticians and economists. It is only when we look at what it would cost the state to provide the support that they give—about £10 billion for the Scottish economy—that we realise just how much we are in their debt. The health services and central and local government should take that on board in their policy making and activities.
Dementia carers and other carers deserve a network of support that can address their specific needs, whether from day to day or in a crisis. They need to know how and where to get help, and that help must be available when it is needed. They need support in maintaining their own health under the pressures of caring, and they need support as they struggle with fuel and food poverty. The 250,000 carers who work need the understanding and support of their employers so that they can combine work with their caring responsibilities, and young carers need the support of their schools and colleges as they combine study with their caring role.
I welcome the project, which is contributing to meeting that need through visits, talks, publications and social and other media. The project also makes clear the need for those providing services to know more about the person with dementia and the linked need for consistency in who provides the services. I thank the project for delivering those messages and sincerely hope that they are taken on board.
17:28
I congratulate Jackie Baillie on securing a members’ business slot to bring this important topic to the chamber and I pay tribute to the contributions that have been made so far by Fiona McLeod, in particular, and John Pentland.
We cannot underestimate the size of the challenge that Scotland faces from dementia. As Jackie Baillie has pointed out, it is expected that the number of people suffering from dementia will double in the next 25 years. Alzheimer’s Scotland predicts that, by 2031, there will be 127,000 dementia sufferers in Scotland. Any mental illness is challenging to deal with, not least for the sufferers but also for those who care for them—doctors, husbands, wives, children, parents, partners, friends or neighbours. Given its prevalence among the elderly, in particular, dementia poses a whole extra set of difficulties for both sufferers and carers.
Carers are the unpaid army of volunteers without whom we simply could not ensure that those with dementia get the support and attention that they deserve. Testament to that were the diverse stories and experiences that we learned about when people from all walks of society came to speak in the carers Parliament a few months ago, including some from my constituency who have sacrificed careers to the greater need of looking after family members.
My 92-year-old mother is a dementia sufferer who can live at home with my 90-year-old father only because of the network of support that she has from great care assistants and family members.
Dementia is a real issue for all classes of people from all backgrounds. It knows no boundaries. I pay tribute to the work of volunteers such as Tommy Whitelaw and to the new dementia carers project. I recognise that Irene Oldfather has a major contribution to make outwith the Parliament and I wish her well.
It is clear that providing the services and frameworks that our health service and unpaid carers need to cope with the effects of dementia has been a priority for the Scottish Government since 2007, but much more needs to be done. As a recent report by Alzheimer Scotland said, service provision needs to be consistent at all times and in all places, not least in increasing the availability of specialist day care that is suited to dementia sufferers; increasing training for professional home carers and allowing them more contact hours with dementia patients; and improving respite options, among other things. If we can build on that, we will improve the lot not only of sufferers but of the spouses, children, friends and neighbours who care for their loved ones.
Respite is a key issue for carers. We need to be clear that respite care does not have to mean sending a sufferer to a care home overnight. Respite can be delivered in the home environment, too. We need to accept that dementia sufferers and carers often very much appreciate the relatively low levels of stress that are involved when respite is delivered in a familiar setting with minimal disruption to the lives of sufferers and carers, which is of paramount importance in dementia care.
Respite outside care homes accounted for only 2.2 per cent of all respite nights for the over-65s in Fife in 2006-07. That figure is very low, and there certainly seems to be scope for replicating the much higher figures in East Ayrshire and Inverclyde, where approximately one quarter and one fifth respectively of all respite nights are provided outside care homes. I hope that we can do more to end that lottery across the country.
I hope that the Scottish Government’s next dementia strategy, which will apply for the next three years—until 2016—will be as innovative as the previous one. We need to maintain the dialogue with all carers, such as Tommy Whitelaw; with patients; with stakeholders, such as Alzheimer Scotland; and with others, such as Professor June Andrews, whom I was fortunate to visit at her base at the University of Stirling a couple of months ago.
We need to build on things such as the strong diagnosis rate in Scotland, which is the highest in the UK, and we need to take on board the comments that Jackie Baillie made about that. We also need to meet the important HEAT—health improvement, efficiency and governance, access and treatment—target for post-diagnostic support.
From the draft strategy, I am convinced that the Scottish Government recognises the importance of the problem. In the whole problem, let us not forget the role of carers. Without carers, the consequences for wider society would be grave indeed.
17:33
I, too, congratulate Jackie Baillie on securing the debate. I welcome the opportunity to highlight the extraordinary work of Scotland’s dementia carers.
There can be no doubt that the whole of Scotland owes a debt of gratitude to our carers. Daily, they selflessly care for the most vulnerable members of our society, for reasons of duty and love. It is estimated that Scotland’s 657,300 carers provide annual savings of £10.3 billion. Of course, not all those carers provide support for dementia sufferers.
Dementia is a dreadful illness whose grip extends far beyond the sufferer who is afflicted by the disease. The illness tragically robs a family of the person whom they know and love long before death occurs. That makes the illness uniquely cruel; the loved one is still physically there but, mentally, they can no longer engage with people as they once could. I, too, know that—my father suffered from the illness and it was not until my mother passed away after a short battle with cancer that I realised that she had hidden his early dementia. That reflects what I think is meant by the stigma of dementia.
Dementia must always be viewed beyond the mental illness that attacks the sufferer’s memory, because it also affects the sufferer’s loved ones. In that environment, people’s hearts break while they watch their loved ones deteriorate. A person’s life is suspended while they act as their loved one’s carer. That is the life for tens of thousands of people in Scotland who find themselves in that position on a daily basis.
Until the tragic death of his mother last year, Tommy Whitelaw was one of those carers. I want to pay my own tribute to him tonight. Tommy is an inspiration. Frankly, I do not know where he found his energy and drive to do his campaigning while caring for his mother, but I am glad that he did. I had been aware of Tommy’s exploits from media coverage, but it was not until January this year that I had the pleasure of meeting him, thanks to my old colleague and friend Irene Oldfather. He told me of his work with Alzheimer Scotland touring the country and collecting letters from other carers, of the short film that he had made to raise awareness about dementia and of his role as a carer for Joan. I was so moved by Tommy’s experiences that I asked him to speak at my regional conference for Lib Dems last month. He is doing an incredible job raising the public’s awareness about dementia, and I was honoured that he could join me at that conference. I am also pleased that he has joined us in the public gallery this evening.
The dedicated strategy for carers that the Scottish Government published in 2010 was a good start, particularly as local authorities and the third sector had the opportunity to inform the strategy. The meetings of the carers Parliament have been outstanding forums for discussing and raising awareness of the great job that is being done by carers. However, we must not be complacent. We should strive to build on that good work to strengthen further the support network that is afforded to all carers
I am glad that the Presiding Officer accepted the motion to extend the debate. That is quite a rare occasion, but it emphasises the issue’s importance. Let me end not with my words but with Tommy’s, from an interview that he did with the Daily Record as he embarked on his tour two years ago. When asked to describe the life of a full-time carer, he said:
“It’s hard emotionally, mentally and financially and it can leave me feeling lonely.”
He speaks there not just for himself but for all who have cared for parents and loved ones. Let us all work towards a Scotland in which no carer feels lonely.
17:37
I am pleased to speak in this evening’s debate and I congratulate Jackie Baillie on bringing forward the issue.
Dementia is a condition that impacts on many families and individuals across Scotland and one that is expected only to increase among the Scottish population. Those demands will impact on our health and social care services, so we must ensure that we develop services that will respond to those rising demands. When I met Royal College of Nursing clinical leaders from Fife in the Parliament a few weeks ago, they identified the growth in more complex health needs as one of the pressures facing the health service.
Of course, the issue is not just about our health service or the structure or frameworks that we create to work with dementia. What strikes me in reading the briefing from Health and Social Care Alliance Scotland is the human response to dementia, how people are treated, how they are understood, how they are supported and how they are talked to. We can get the structures right, but how people are treated will be the key to a successful dementia strategy.
Carers must be at the heart of our strategy. With an estimated 86,000 people in Scotland living with dementia, there is an army of carers out there looking after their loved ones. That experience can be difficult and challenging—it is certainly exhausting—and is also an act of love and care. My family, like many across Scotland, has had the experience of caring for a family member at home with Alzheimer’s. No one expects a medal or recognition for caring. Carers care from a sense of duty, because it seems like the right thing to do and because they feel that no one else will do it or because they worry that no one else will be able to provide the kind of care that they personally can provide. They may have 100 different reasons, but the heart of the matter is that they love the person that they care for.
Caring can take over the carer’s life and become a 24-hour-a-day job. Someone may become a carer over a period of time, as a spouse or parent gradually becomes more dependent, or it may be a sudden change when a decision has to be taken about care and a relative moves into the family home. Some people make the decision to be a carer whereas, for others, particularly spouses, it can be a role that they just increasingly fulfil.
The Fife Carers Centre in Kirkcaldy, which offers support and advice, is supporting an increasing number of people all the time. That work should be recognised. Carers often worry about the person they care for, about the level of care that they are able to provide, about the treatment that the person will get from others, about the effect on the wider family and also about what will happen in future. That responsibility places a burden on carers that affects their physical, mental and emotional health. In addition, carers often experience added pressure on their finances, sometimes as a result of incurring extra expenses and sometimes as a result of their income being reduced because of a need to cut their working hours or give up work altogether.
Those are some of the reasons why the dementia carers’ voices project is so valued. I welcome the extent to which the debate has recognised the work of Tommy Whitelaw, who has been raising awareness of the impact of dementia on families. The collection of life stories demonstrates that carers of people with dementia often feel isolated and that there is insufficient recognition of the complex issues that they have to deal with, which range from legal and financial matters to health and housing. Those letters and stories are a valuable resource that should be used to inform future policy and service provision.
One of the identified outcomes of the project is to gather information that will support family and person-centred approaches to health and social care. The briefing that we have received makes it clear why that is important. Many of the carers’ comments are about the person for whom they are caring not being recognised as a person—they express a feeling that the person inside the dementia is forgotten—and they call for greater recognition of the carer role among health and social care professionals. One carer described the need to recognise the value of the trust that the person with dementia has in the carer.
The letters that have been collected are powerful and are testimony to the valuable work that carers do across Scotland, but they are also about the human experience. Being a carer is not a job; it is about being part of a family. The letters demonstrate that, although people do it for the best of reasons, they cannot and should not have to do it alone.
17:41
I add my congratulations to Jackie Baillie on securing the debate. As members will be aware, dementia is an issue that is close to my heart—I will say more about that later. In addition, I have an interest in it as co-convener of the cross-party group on carers and of the cross-party group on dementia.
I met Tommy Whitelaw in June 2011—on my birthday—in Aberdeen’s St Mary’s cathedral. It was quite a birthday present, Tommy. It is good to see him here in Parliament today. While we were there, we spoke about his campaign and I shared with him my family’s experience. My mother was carer to my grandparents. My grandmother had dementia for 11 years and lived with my mother in my mother’s home for six of those years, along with my grandfather, although he passed away in 2010. My grandmother passed away in October 2011.
I agree with Jim Hume that dementia is a horrible, cruel illness. I have often said that my view is that dementia is an illness that kills a person from the inside out, in the sense that what you are left with is, essentially, a shell that looks very much like the person you know and love, but one from which the essence of that person, which made them the person you know and love, has long since disappeared, although occasional glimmers reappear. That was the case with my grandmother.
I am deviating from my notes, but what was interesting with my grandmother was the way in which she would react to my children and my brother’s children—her great-grandchildren. She seemed to have an enormous affinity with babies and small children. She would always light up when they came to visit her, whereas she would treat my mother and her siblings as strangers, despite the fact that they were the children whom she had raised. I was always struck by that when I visited my grandmother.
I saw at first hand the many difficulties that my mother faced as a carer. In the initial stages, she tried to juggle sustaining employment with her caring responsibilities. Eventually, she had to leave her job and focus fully on caring. Difficulties are created by the pittance that carers receive as a carers allowance. Jim Hume mentioned the £10.3 billion annual savings that the state accrues as a result of carers doing what they do. Despite that, the Department for Work and Pensions deems it not to be a job and pays a pittance by way of the carers allowance. That is extremely regrettable, and it certainly does not help carers to do the very tough job that they do.
My mother received great support from Alzheimer Scotland throughout the process, for which she and my family remain grateful. Indeed, my mum is currently fundraising for Alzheimer Scotland, despite the fact that my grandmother has not been with us for more than a year, because we recognise the work that that organisation delivers across our communities.
Jackie Baillie mentioned a carer in the Highlands who had been assisted by 104 care staff. Using my Poirot-esque powers of deduction, I concluded that she was referring to Jeanette Maitland of Kingswells in Aberdeen, who had 106 carers visiting to attend to her husband. I met Mrs Maitland at a carers event in Aberdeen and visited her at her home to discuss the issues prior to their becoming public. Jackie Baillie’s comments on that jogged my memory. That issue highlights the importance of continuity of care, particularly for individuals with dementia. One noticeable point is how such people react to familiarity and having the same person visiting them. Constant change upsets individuals with dementia, so it needs to be avoided.
It is important to ensure that adequate and appropriate support is in place for carers. I note from a briefing that was provided for the debate that three quarters of carers say that their health is worse because of their caring responsibilities. We must address that; otherwise the people who are today’s carers will become the people who are tomorrow’s cared for.
17:46
I, too, congratulate Jackie Baillie on bringing the motion to the Parliament’s attention. I associate myself with members’ comments about Irene Oldfather and Tommy Whitelaw.
A significant number of people in Scotland live with dementia, and the number is likely to increase. At the same time, there is a significant number of carers, who provide vital services to their loved ones and, as members have said, save the taxpayer significant sums of money.
I come from a fairly long-lived family. My grandmother was 95 when she died and her mother was 93. Uncommonly for someone of my age, I am lucky enough to still have both my parents alive, and very much so. I am even more fortunate in that I have never had to suffer the particular pain of watching a loved one succumb to dementia. Touch wood, but I have never had to suffer losing the person that I love while at the same time having to care for the person that they have become. I take my hat off to the members who have had to go through that experience. It is tragic that people who are suffering that bereavement have difficulty finding out about the condition from which their loved one is suffering or about services that are available to help them.
In October last year, I was honoured to accept an invitation to open Alzheimer Scotland’s dementia resource centre in Gordon Street in Dumfries along with Mrs and Mr Crouch, a dementia sufferer and her carer. Mr Crouch described to me what the centre offered and how it gave him some respite while his wife enjoyed and benefited from the services. There is a day centre, access to a dementia adviser for carers and the award-winning fortnightly musical minds group, which has been so successful that it has had to move to larger premises and has recently set up a similar programme in Moffat. For those who prefer sport to music, there is a monthly football reminiscence club, members of which recently visited Alzheimer Scotland’s national resource at Hampden, along with similar clubs from across Scotland.
The centre is decorated to a high standard, with objects and photographs that are designed to stimulate memory. In fact, my grandparents had possessed similar objects when I was a young girl, so they stimulated my memory, too. They included a stone hot-water bottle, which when I was a wee girl we always referred to as “the pig”. I think that that was because it was cold. I do not know whether that was a particularly Fife expression, but my grandparents had one of those and I was excited to see it.
People with dementia and their carers can be supported in a number of ways. Some of them are fun and involve things such as sport and culture; others involve uplifting people even while suffering from this dreadful disease. Members might have visited the exhibition of quilts entitled “Yes we can—together!” in the garden lobby at the end of last month, which was exhibited by my constituent Ann Hill, who is Alzheimer Scotland’s quilter in residence. She creates quilts for people who are suffering from dementia, after speaking to them and their carers about the things that were important in their earlier lives. The quilts have a variety of themes, but they mean special things to the dementia sufferers who receive them. They help by stimulating the memory and reminding people about the things that they love. Ann is encouraging other quilters to take up the Hampden challenge of covering the pitch at Hampden with these quilts during dementia awareness week in June. If anybody is handy with a needle, I encourage them to help Ann in her efforts.
Many older people are terrified that they might succumb to dementia. Often, in old age, people are more frightened of that condition than of many other killer diseases that are prevalent in Scotland. However, when I spoke at the event in October, it struck me that we do not talk about dementia enough. There used to be a similar attitude towards cancer; people would not refer to cancer. Fortunately, we are over that but we need to take the same view of dementia and talk about how dementia can be treated medically and therapeutically and about how carers can be supported. Events such as tonight’s debate help to raise the profile of dementia and will, hopefully, encourage people to talk about it.
17:50
I thank Jackie Baillie for securing the debate and pay tribute to Tommy Whitelaw and the others who are in the public gallery today. The Tommy on tour campaign was fantastic at raising awareness of what dementia means not just for the sufferers but for the thousands of carers out there and the organisations that have put it at the top of their agenda.
I had written down some words, but I think that the best thing that I can do is just to hold up the dementia carers’ voices leaflet on “Supporting Rights and the Carer Voice”, which tells us everything. What I really like and admire about the organisation is the fact that it is very much a grass-roots organisation that is built from the bottom up and that listens to the people at the coalface, not necessarily the professionals who receive from the coalface. It mentions various issues to do with carers’ experiences, which the organisation knows about from people writing back to it. It says that there needs to be greater understanding, particularly among professionals, of the national dementia strategy and the right to dignity and respect—an issue that Fiona McLeod raised. As she said, when someone is caring for a person with dementia it is difficult for them to get through the maze of paperwork and bureaucracy to find exactly what is right for them. The national dementia strategy offers that, but we need to push it out more to professionals, who are the ones that we need to speak to and tackle.
Mark McDonald talked about the amounts of money that carers receive each week through their benefits. As Claire Baker and others have said, it is not about the money, but if someone has a family with a couple of kids and they have to give up their job, they need something to support them—particularly with the increase in utility bills—and £58.45 is not a lot of money. In some cases, people cannot take another job. I know that, unfortunately, benefits are outwith the scope of the Scottish Parliament, but we need to look at that situation.
I am the convener of the cross-party group on older people, age and ageing—Nanette Milne is the deputy convener, as Jim Hume was—and dementia has been raised on many occasions within the group. There are many fantastic organisations and individuals out there, including Alzheimer Scotland and Tommy Whitelaw, who give their all to ensure that people who have dementia are put to the forefront. We always look forward to someone coming along to give us advice on the best way forward.
Today’s debate is a fantastic opportunity to hear about individual cases. We did not realise that my mum had dementia until my dad died and, when we went to visit her, we found that the sink was overflowing, the pot was burned and the gas was left on. Similar to the case of Jim Hume’s parents, my dad had protected my mum from anyone knowing that she had dementia. Fortunately, as we are a big family, someone was able to stay with her every night—that is not the case for everyone—until she became so ill that she could not stay in her own home and, unfortunately, we had to put her into a care home. Such personal experiences, which come through the carers’ voices, mean so much; it is about the grass roots and the people who have suffered.
We talk about suffering but, as Nanette Milne said, there are sometimes humorous moments or moments of great joy when the sufferers hear music that they remember or when they see kids, as Mark McDonald said. In my mother’s case, such moments were when she saw her grandkids and great-grandkids. However, at times, she thought that I was her sister and said that I was not to go out because I was bad or something like that—obviously, my auntie had done something wrong in her past life. For us, that time was joyful as well as sometimes sad.
I commend what is being done, which we have heard about in the debate. To have a grass-roots organisation talking upwards to professionals is the best way forward. I thank Jackie Baillie for bringing the debate to Parliament.
17:55
Like others, I congratulate Jackie Baillie on securing time for this important debate. I thank all those members who stayed and have contributed to what has been a powerful debate, and I particularly thank those who shared with us some of their experiences with their loved ones and the impact that dementia has had on their families.
I also pay tribute to Tommy Whitelaw. I have met him and I follow him on Twitter. He does extremely important work, including with the Health and Social Care Alliance’s dementia carers’ voices project. I also pay tribute to the work of Alzheimer Scotland’s national dementia carers action network.
What is unique about the dementia carers’ voices project was highlighted by Sandra White in her speech. It seeks to capture those moments of experience that come from the carers of those who look after someone with dementia, which can be an extremely powerful tool in helping both us, as policy makers, and others to understand the challenges and the issues that need to be addressed in helping to support individuals who have dementia and their carers. It is a valuable project that will help to shape how we do things in future. It provides an opportunity to ensure that we are well aware of the, at times, intensely challenging experiences for carers who live with someone with dementia and that we can support them as they go through their illness.
A number of members mentioned the increasing challenge that we face as a society, given the demographic shift that is taking place in Scotland, as in many other western European countries, and the likelihood that it will lead to an increasing number of individuals within our population having dementia. It is important that we recognise the challenge that exists here and now, which is a challenge that we will also face in the years to come. We need to take appropriate action to address the challenges both now and into the future.
That is why the national dementia strategy for Scotland is important. It has started that process in a strategic way. It focuses on meeting two challenges, and we have made good progress in those areas. One of the key challenges was the diagnostic test for individuals with dementia. Scotland has met that challenge extremely well and has outperformed England and Wales in that key area, but we need to ensure that we build on that in moving forward.
The other key challenge was around implementing the standards of care for dementia in Scotland and the skills framework, “Promoting Excellence: A framework for all health and social services staff working with people with dementia, their families and carers”. Both are underpinned by the key principle that family carers should be equal partners in care. We have supported the work that Alzheimer Scotland is taking forward in appointing dementia nurse consultants to boards across Scotland. We now have 300 trained dementia champions, with more to come. However, we also know that it is important that professionals who work in healthcare and social care settings recognise the role of family carers in helping to support a loved one when, at times, they require a period in hospital or another care setting.
From April, there will be our national guarantee that everyone who is diagnosed with dementia will receive a minimum of one year’s post-diagnostic support, co-ordinated by a named worker. That is very much about trying to do what Jackie Baillie highlighted, which is to ensure that we develop comprehensive, person-centred plans for the on-going and future care of individuals, and that we develop them in a way that is suited to the person’s particular situation. The post-diagnostic guarantee is not dependent on setting, whether it be a social care setting or a person’s home.
We will also take forward work with the Life Changes Trust, as it administers grants from the Big Lottery Fund to the tune of some £25 million from this year for initiatives that will benefit people with dementia and their families and carers.
As members have said, we are in the process of looking at bringing forward the second phase of our national dementia strategy. We have had an engagement process that has allowed the whole sector to get involved and express its views on how we should move forward. Our proposition paper outlines how we will build on the progress that has been made as we move forward to 2016 and ensure that we continue to upskill the workforce in both health and social care settings. We also want to help to sustain performance in early diagnosis and improve post-diagnostic support and care in hospitals. In all those areas and more, we want to engage with and involve people with dementia, their families and carers as equal partners in care.
A number of members have referred to some of the challenges that carers can often face, particularly those who care for someone with dementia. It is extremely important that we continue to ensure that we do what we can to support carers in facing their many challenges. Some of the work that we are taking forward is about trying to ensure that we improve identification of carers, who can often be challenged in getting access to the services and support that might assist them—for example, the Fir Park service to which John Pentland referred. It is important that carers have the skills to allow them to do that, so we are funding NHS Education for Scotland and the Scottish Social Services Council to work on carer workforce development initiatives to help in that regard.
One group that is particularly important in acting as a gatekeeper to support services is general practitioners. So far, we have taken forward a number of initiatives with them to help with access to support. The general medical services contract agreement for 2013-14 includes, for the first time, a specific carers indicator. That means that GP practices in Scotland must have systems in place to identify carers and a mechanism for referral of carers to services that can assist and support them.
Fiona McLeod raised the dementia card. We are taking forward the young carers card and I have no doubt that that will develop into a carers card, which I think will help to address some of the issues that she mentioned. John Pentland raised employment for carers. One thing that we must do is to engage with the employment sector to ensure that it recognises the role of carers and the value of supporting them. That is something that I have already started, and we are just about to appoint a project worker with Carers Scotland to take forward an employers’ kitemark, which is about helping to ensure that employers have carer-friendly policies in place.
There is certainly more that we can do and I am determined to ensure that we do it alongside our carers’ rights charter, carer training initiatives, the funding of the voluntary short breaks fund and the carers Parliament, which will meet here again this year, allowing carers to come together. I hope that I can assure Jim Hume that there is certainly no complacency on the part of the Government in trying to continue the process that we have been taking forward in recent years to help to support carers and to work with organisations that have an important role in supporting carers.
Another area that I think is worth mentioning is the value that self-directed support can have for individuals with dementia and their carers. We ran a self-directed support project through Alzheimer Scotland in Ayrshire that proved to be very beneficial for families and individuals in finding ways and solutions that were best suited to them. I believe that the introduction of the Social Care (Self-directed Support) (Scotland) Act 2013 is an opportunity to build on the work that Alzheimer Scotland is taking forward to ensure that more carers of individuals with dementia and dementia sufferers can benefit from self-directed support.
The integration of health and social care provides us with a unique opportunity to ensure that services operate in a much more co-ordinated fashion, that we recognise carers’ roles and that services are much more aligned to individuals’ needs rather than those of organisations. I have no doubt that, as we move that forward, it will help to provide greater certainty across the country that services will be delivered in a much more joined-up fashion.
Again, I congratulate Jackie Baillie on bringing the debate to the chamber. The Government regards this area as a key priority, and we will continue to build on the progress that has been made over recent years to ensure that we continue the momentum that has been gained and that it makes a real difference to the lives of both those in Scotland who have dementia and their carers.
Meeting closed at 18:05.