Charter of Rights for People with Dementia and their Carers

– in the Scottish Parliament on 9th October 2019.

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Photo of Linda Fabiani Linda Fabiani Scottish National Party

The final item of business this evening is a members’ business debate on motion S5M-18709, in the name of Sandra White, on the 10th anniversary of the charter of rights for people with dementia and their carers. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that October 2019 is the 10th anniversary of the Charter of Rights for People with Dementia and their Carers, which was signed by all political parties in the Parliament; further notes that the Charter introduced a human rights-based approach to health and social care based on the UN PANEL principles; acknowledges that, for the first time in Scotland, the PANEL approach allowed people with dementia and their carers to participate in decisions, have accountability in their care and be empowered to access their rights without stigma; considers that the Charter has ensured that public and private bodies, voluntary organisations and individuals are held responsible for the care and treatment of people with dementia and accountable for the respect, protection and fulfilment of human rights; commends the importance of the Charter in underpinning three national dementia strategies and resulting initiatives working to improve people’s lives; applauds the ALLIANCE, Alzheimer Scotland and the University of the West of Scotland for ensuring that the voice of lived experience sets the agenda for the next 10 years; values the efforts made by organisations across Scotland, especially the Scottish Public Services Ombudsman, to use the Charter as a tool for empowerment, raising awareness of rights and improving quality of services; congratulates the Scottish Dementia Working Group, National Dementia Carers Action Network and Dementia Carer Voices for their awareness raising campaigns on the need for person-centred care; recognises that, while much progress has been made over the last 10 years, by 2031 it is projected that there will be approximately between 102,000 to 114,000 people with dementia in Scotland, and therefore welcomes discussions to date to make the Parliament more open, inclusive and dementia-friendly, and believes that dementia is one of the key issues now and in the future for people in Glasgow Kelvin and across Scotland.

Photo of Sandra White Sandra White Scottish National Party

I very much welcome the opportunity to host this members’ business debate on the 10th anniversary of the charter of rights for people with dementia and their carers in Scotland.

I will update members on what has happened. We had 40 members of a dementia choir here, who were going to sing, but unfortunately they could not wait for such a long time and have had to leave. I apologise to them and to members.

I see a number of people coming into the gallery now, including Irene Oldfather and Mary Scanlon, which is fantastic. I can now say the bit of my speech in which I acknowledge the people in the gallery who have championed the charter. I also thank members from across Parliament who have signed the motion and supported the debate. I think that Professor Miller and some other people have been here for quite a while, so I thank them very much for their patience in bearing with us. I am sure that Irene Oldfather, Mary Scanlon and others who have been elected members understand that Parliament can be unpredictable. I thank them all for staying on.

The Health and Social Care Alliance Scotland, Alzheimer Scotland and the University of the West of Scotland mark October 2019 as the 10th anniversary of the signing of charter of rights for people with dementia. There is an event later tonight in the Scottish Parliament, and it will be a great honour for me to speak then, too.

The charter of rights was an initiative of the cross-party group on Alzheimer’s and dementia, which was set up and convened by Irene Oldfather when she was a member of the Scottish Parliament. She had had experience of dementia in her family, and the charter was a response to the fact that, at the time, people with dementia and their rights seemed to be invisible. I thank Irene and others for taking up the issue and for championing people with dementia with such dedication and commitment.

In 2009, it was recognised that people who are living with dementia are entitled to enjoy the same human rights as everyone else. Nevertheless, at that time, people with dementia were still being denied their rights because of social and cultural barriers, including lack of understanding in the population about dementia, and lack of staff training on how to respect and protect the human rights of people who are living with dementia.

The charter adopted the United Nations-endorsed PANEL principles: participation, accountability, non-discrimination and equality, empowerment and legality. The approach focuses on people’s right to participate in decisions that affect their human rights; accountability of the people who are responsible for respecting, protecting and fulfilling those rights; non-discrimination and equality; empowering people to know their rights and how to claim them; and legality in all decisions, through an explicit link with human rights legal standards in all processes and outcomes. The aim is to uphold the human rights of people living with dementia in the community and in care facilities.

The charter and its rights-based approach have been fundamental in shaping the development of dementia policy and practice since its publication in 2009. The approach has driven commitments to provide high quality post-diagnostic support, to enhance education and training for health and social care professionals, and to improve care in acute hospitals, all of which are important.

The charter has brought to the fore the voices of people who have lived experience of dementia, or of caring for people with dementia, through the Scottish dementia working group and the national dementia carers action network. All national strategies have been developed in partnership with people with dementia, their carers and a range of organisations and professionals in health and social care.

It is estimated that 90,000 people in Scotland are living with dementia. With our increasing population of older people, that number will continue to grow. Dementia is a difficult condition for the people who live with it and for their families and carers.

I draw members’ attention to the Health and Social Care Alliance’s dementia carer voices project lead, Tommy Whitelaw, who is also in the gallery. Tommy has been at the forefront of awareness-raising campaigns in Scotland. His mother was diagnosed with vascular dementia and he cared for her for five years until, sadly, she passed away, in 2012. Tommy has continued to use his history to raise much-needed awareness of the charter. The dementia carer voices project has reached more than 170,000 national health service staff, care home staff and students, has secured more than 24,000 pledges from people, and has visited more than 900 locations—I think everyone in Scotland has met Tommy and heard his story. I congratulate him and thank him very much. [

Applause

.]

There is no doubt that Scotland has made much progress since 2009. As a result of the charter of rights, we have in place some of the most progressive dementia policies in the world. We should be proud of that. Since the charter was established, improving dementia care has been a priority of the Government, and it remains a priority.

Progress has been forged through hard work. Effective contributions at every level from practitioners and policy makers have been pivotal in moving us on. The Scottish Government should be recognised for working constructively to make progress: it has introduced three dementia strategies, with a fourth to come.

There has been great progress since a motion on dementia was debated in 2009, but there is always more to be done. For example, I thank the

Evening Times and

The Herald for their campaign to highlight the need for free healthcare for people who have advanced dementia. It is a very real issue that affects people who are very vulnerable. Whether the condition is assessed as being a matter for social care or healthcare is a huge question that the Government is considering at the moment. We know that care can be very expensive—it can be out of the reach of many people and their families. I ask the minister to address the issue when he sums up the debate, and to consider the issue with the Cabinet Secretary for Health and Sport.

Photo of Jeremy Balfour Jeremy Balfour Conservative

I thank Sandra White for securing this evening’s debate. I welcome the people in the gallery, and I apologise for the late running—although it is great to have everyone here.

As Sandra White has pointed out, about 90,000 people in Scotland are diagnosed with dementia, and the figure will be higher if we take those who have not yet been diagnosed. We have an ageing population, and the condition is likely to affect more people, as time goes on.

I was not here 10 years ago, but as I have read about the subject it has become clear to me that the charter has become a landmark in dementia and in how our treatment of dementia has progressed over the past 10 years. It introduced an approach to health and social care that is based on human rights. That is fundamentally important. It has helped to shape dementia policy in the Scottish Government and the Scottish Parliament and, I hope, within our political parties, as we try to work out how to help people with the condition. The charter has brought the issue of dementia carers to the forefront—it is a condition that affects individuals, but it affects their wider families, as well.

In my speech, I wish to look ahead. Where can we go now and in the next 10 years? I have three quick points to make. First—as Sandra White pointed out in her excellent speech—we have started to see people with dementia and their families as equal members of our community. There is still some social stigma attached to talking about dementia within the family, and some communities still hide it away and do not want to acknowledge it. We have to get to a place where families, individuals and communities can talk about it openly, and where we feel that people with dementia and their families are part of the community. I know that we all want that.

Secondly, we must ensure that people with dementia and their families have active voices and can participate in decision making on the policies not only of the Scottish Government but of local authorities, communities and Parliament. It is important that we have ambassadors pushing us politicians regarding the decisions that we make.

Thirdly, drawing from my constituents and the people whom I talk with, including my family, I think that we still need to ask whether the workforce is getting the appropriate training to deal with people with dementia. When I talk about the workforce, I use the widest definition—medical intervention, social care or help that is given in nursing homes and other such places. We have to prioritise, so that those who work with families and the people with dementia have the appropriate training. It goes beyond that: training needs to cover people in pharmacies and in various social settings, who need to understand that the language that they use and how they communicate and explain things must be appropriate.

We have come a long way in 10 years, for which we can take collective credit. There is still progress to be made, however, so I hope that the people in the gallery and others can keep pushing us, as politicians, to make the appropriate changes that will make easier the lives of people with dementia and those of their families.

Photo of Tom Arthur Tom Arthur Scottish National Party

I thank my colleague Sandra White for securing the debate, and I join Sandra White and Jeremy Balfour in welcoming our guests to the gallery. I, too, extend my apologies for the fact that we are beginning the debate only now, well past the witching hour for the Parliament.

I intend to make only a few remarks. I thank all those who were involved at the inception of the charter of rights, all those who have worked to deliver on it over the past 10 years and those who are committed to building on it.

I want to centre my remarks on the issue of participation. It is clearly important to have a high-level strategy, but ultimately what matters is the delivery of that strategy and how it changes the circumstances of those on whom such strategies are designed to have an impact. It is about what happens on the ground.

I have witnessed at first hand in my constituency some of the excellent work that has been undertaken to improve the wellbeing of, and opportunities for, those with dementia and those who care for people with dementia. I highlight two groups: dementia friendly Johnstone and dementia friendly Lochwinnoch. Both are relatively new, but they are already blazing a trail across Renfrewshire to improve the lives of people with dementia and their carers.

Earlier today I spoke with Karen McShane, who set up dementia friendly Johnstone. The group is pushing ahead, engaging with Scottish Opera and Scottish Ballet to offer day trips for people with dementia and their carers. The Lochwinnoch group, which has been established for about two years, is also making a profound difference. There are regular tea dances, where I am regularly shown up for not being able to do the slosh. The group also engages in a lot of activities that empower people with dementia and their carers.

Another aspect concerns those with dementia, and those who care for them, who are in employment. My understanding is that around 18 per cent of people under the age of 65 with dementia in the UK continue to work after diagnosis, and 93 per cent of working carers in the UK report that looking after someone with dementia has affected their capacity to work. As a result, I have tried, during my time in Parliament, to be a champion for the Carer Positive initiative, which is a Scottish Government-backed scheme delivered by Carers Scotland. It seeks to recognise and support those employers who have workplace practices that recognise the unique challenges that those who combine working with caring responsibilities face. I have tried to encourage as many employers as possible across my constituency of Renfrewshire South to become Carer Positive employers.

Once again, I urge members on all sides of the chamber to become, if they are not already, Carer Positive employers. I also ask members to engage with businesses and organisations across their constituencies and regions to encourage them to become Carer Positive employers. Let us look forward to the next 10 years of making the charter a reality for people.

Photo of Rhoda Grant Rhoda Grant Labour

I, too, congratulate Sandra White on bringing to the chamber this debate on such an important subject. I welcome former colleagues and campaigners to the public gallery.

The incidence of dementia will increase, because people are living longer and therefore more people are susceptible to developing the condition. That said, proportionally, the number of old people who are developing dementia is falling. Living longer is a good thing—we use life expectancy levels to demonstrate the economic and social wellbeing of our society and to measure our country’s progress against that of others. However, dementia care is treated differently from care for those with other health conditions. Care is seldom provided by the NHS, which means that patients often pay for their care in the care sector.

No one is suggesting that care should be delivered in hospital, but there is a disparity between conditions with regard to which aspects of their care a person must pay for. Most people who have dementia want to live and die at home, but that cannot happen without high-quality home care services being available to them. I have constituents who have been moved huge distances from home to enable them to access diagnosis and specialist services. That takes them away from what is familiar, which is really bad for someone with dementia. It also increases the strain on the family, forcing them to leave home for days just to be able to visit, not to mention the associated costs.

When it comes to treatment in our health service, there seems to be a hierarchy of conditions. If someone can be cured, no expense is spared; if they cannot, their experience is altogether different. While the NHS has had its funding protected to a greater extent, local authorities, on which dementia care falls, have faced severe cuts that impact on services.

I have spoken to care workers who specialise in dementia. They believe that, with the right interventions from care workers and the use modern technology, they can keep people at home, and safe, for much longer. With one client, they used a recording of her daughter’s voice telling her mother not to go out when the front door was open at night. Where family are present, they need support too. Unpaid family carers have told me that they are unable to get a night’s sleep because their loved one does not settle. They cannot leave them alone, so they have no time to themselves. In turn, they can become ill, which means that two people, rather than just one person, will need intervention. The right support can keep people at home longer, and that will provide them with a better quality of life.

Those who provide paid care for people with advanced disease need to know the person’s history. That was once described to me as a shoogly bookcase. The bottom bookshelf has the person’s values and early memories and, as they live, they begin to fill the higher bookshelves with their memories and experience. If they develop dementia, it is as if someone is starting to shake the shoogly bookcase. The first books to fall are the ones at the top—the most recently added new and short-term memories. As time goes on, more memories will be lost, the bookcase will shake more, and the contents of the lower shelves will be lost. At that point, a person will regress back to their early values and memories. The knowledge of a person’s history helps carers to identify their needs and values at that stage of the condition.

That was explained to me in a story about a woman who was in care and became very distressed and aggressive when she took part in activities in communal areas of the home. She was happy and placid in her own room, but she got very upset when she mixed socially. It transpired that she was of a generation in which a woman who went out properly dressed would always wear a hat. The home got her a hat, and she then thoroughly enjoyed social activities because she felt that she was properly dressed for the occasion. With regard to her knowledge and values, that was where she was.

That sounds simple, and in some ways it is, but that cannot be done unless people know the person who is being cared for and the care is patient centred. We need to find ways of providing such care so that someone’s welfare does not depend on their condition or—worse still—their wealth. A caring society must be able to provide care from the cradle to the grave, regardless of the condition.

Photo of Christine Grahame Christine Grahame Scottish National Party

I congratulate Sandra White on securing this debate and those in the gallery who have stayed this long.

I note what Jeremy Balfour said about 90,000 people suffering from dementia. However, I want to talk about only one case.

Unfortunately, as we get older, we sometimes see our friends succumbing to dementia. It is a dreadful, slow killer of personality. The first time that I noticed that a friend of mine was behaving slightly differently was when we were listening to jazz. She was semi-detached from it and smiled at all the wrong places. I thought that she was perhaps slightly deaf.

The second time that I noticed that she was behaving slightly differently was when I was having brunch in her house and they tried to make me talk politics against my will. She served up her home-made soup and forgot the cutlery. I did not really think much of that at the time but, gradually, other things happened. One day, when we were on the bus, she turned to me and said, “Christine, I’ve forgotten where you live.”

Dementia ate away at her a bit at a time. The blessing for her was that she was not distressed or aggressive; rather, she became childlike. When she did not remember where I lived, I simply said, “That’s okay. I’ll take you to it. That’s all right.” I just took it as it was.

She used to be a wonderful watercolour painter. I have some of her watercolours in my house. One Christmas, a few months before she died, she came to my house, and I said to her, “These are your paintings.” She said, “Are they?” and just smiled.

There was a funny side to it. All her life, she drank only wine. When I offered her husband, who was also a good friend of mine, a whisky, she said, “I’ll take one of those, too.” It was a great big whisky. Obviously, she had forgotten that she was only a wine drinker. However, that was the only light bit of it.

I did not see the bit when her good husband contained her behaviour in the bungalow and in the back garden, where they used to play tennis on a big lawn that they kept for that purpose. Her husband managed to cover up her behaviour and support her right up until the week before she died. She had to be put in a care home only then, and he found that very difficult.

The other tragedy for that friend of mine was that her mother suffered from dementia, too. Years before, she had said to me, “Christine, I hope what happened to my mother never happens to me.” I said, “Och, that’ll never happen to you,” but there it was. That is one story of one man and one woman and how dementia affected her.

The condition makes some people very aggressive. Recently, I went to a meeting in Midlothian of carers and their partners or husbands or wives who suffer from dementia. I met a woman there who I have known for a long time and who had been involved with me in a political campaign. She did not have the same politics as me, but the campaign was to save a community centre. I did not notice the dementia that was eating away at her at the time—her husband had to tell me that she was suffering. She said to me, “I’ve got dementia, Christine.” She became more and more aggressive as she picked up all the cups and saucers and piled them up while tidying everything up. I could see the aggression building up in her. Her personality had changed in a different way.

In that group, those with dementia were assessed while they were there but, after half an hour, the carers went into a room together, and I sat in with them. Nobody said much, but one woman began to talk about her husband and what she had to do, but she could not continue. Later, I got an email about it, which I will not share with members, because I do not like doing that kind of thing. However, I later saw that woman escorting her husband into the car like a child and taking his hand and I realised that, 24 hours a day, seven days a week, 52 weeks a year, she never has a moment to herself, apart from that little bit of respite.

It is absolutely right that we talk about the numbers, but we really must address the variance in how the condition attacks people. When someone has nobody to care for them, I do not know how they manage, but we really must support the carers who do that work day in and day out, and often discreetly.

Photo of Graeme Dey Graeme Dey Scottish National Party

I thank the members who remained behind to make their speeches, and particularly Christine Grahame for that moving contribution. I congratulate Sandra White on lodging the motion and on her commitment to the agenda over the past 10 years. As others have done, I acknowledge the patience that those in the public gallery showed in waiting for the debate to take place.

Members have made a number of important points. To pick up on Tom Arthur’s point about the Carer Positive initiative, I encourage members to follow his advice on that. I have certainly done what he suggests. I also encourage members to consider a dementia awareness course for them and their staff, which is something else that I did last year. It was certainly eye-opening and helpful for the way in which my office deals with the case load that comes to us relating to dementia. Let us be honest—it is an increasing case load.

More recently, as veterans minister, I visited the Erskine care home in Edinburgh, which is an absolutely wonderful facility that has a particular focus on dementia. In the course of that visit, I was asked to try on the dementia suit. The officials were a bit concerned about the minister doing that, as officials tend to be, but I wanted to try it to see what it was like. That was even more eye-opening. The sheer physical and mental effort to concentrate for a few moments simply to pour a cup of tea or take the top off a jelly carton was exhausting. That really brought home the debilitating nature of dementia and the strain that it must place on people suffering from it, particularly when they are older.

To return to the broad themes of the debate, the development and signing of the charter represent a great coming together of all the parties in the chamber—it has been a cross-party and external stakeholder effort—in recognition of the importance of the agenda and of not only improving care but ensuring the wider social inclusion and civic participation of people with dementia and, we must stress, their carers. In the past 10 years, we have been privileged to benefit from the experience, passion and expertise of people with lived experience of dementia—those with the illness and those who look after them. The Scottish dementia working group is a long-established organisation that has sought tirelessly to bring the experiences of its members, all of whom have dementia, to the development of national policy to effect changes in the design and delivery of services and support. However far we have come, we owe a lot to that contribution.

The national dementia carers action network and the dementia carer voices project have brought the experiences of carers to the forefront. In more recent years, they have been joined by the TIDE—together in dementia everyday—carers network and DEEP, the dementia engagement and empowerment project. I thank all those groups for their dedication and for giving their time to improve the lives of people with dementia. Without them, we could not develop truly meaningful action on dementia. Although we still have some way to go, there is no doubt that we have made progress.

A wide and growing range of organisations have been influential in supporting and challenging Government and the health boards, and now the integration joint boards, to make improvements in dementia care in accordance with the charter. The list includes Alzheimer Scotland, the Health and Social Care Alliance Scotland, the University of the West of Scotland and a range of academic research, charity and statutory bodies. I also highlight those organisations that are at the forefront of delivering innovation in dementia support, including the award-winning Kirrie Connections in my constituency, which really delivers on the ethos of living well with dementia.

In developing Scotland’s first national dementia strategy, we engaged with stakeholders on the human rights principles that are, as they should be, at the core of the charter. That strategy was produced in 2010, and the following year, when we produced the first “Standards of Care for Dementia in Scotland”, the charter rights were again crucial in underpinning all the key standards in that document.

The dementia standards still apply. They set out the entitlements for individuals, including the right to a diagnosis; the right to be treated with dignity and respect; the right to access all possible support services that are available; and the right to retain as independent a life as possible as part of the wider community. Kirrie Connections does good work in that respect—as do organisations like it—because it is at the heart of the community. People are not isolated because of their dementia—instead, they are part of the society of that town.

The standards also include the right of people with dementia to have carers who are well supported to carry out their caring role. The human rights principles that are set out in the dementia charter and in the dementia standards have informed all our policy initiatives, including the two national health and social care workforce programmes, our national dementia post-diagnostic service and our work on acute and specialist NHS dementia care. They have also helped to inform the inspection of services, such as the major Care Inspectorate report, “My life, my care home: The experiences of people living with dementia in care homes in Scotland”, and the work of institutions such as the Scottish Public Services Ombudsman.

Key to all those developments has been an embedding of principles that mean that people with dementia and their carers are central to, and active participants in, decisions that are made on care, treatment and support. That is how it should be. We recognise that dementia is, and will remain, one of our foremost challenges. It is well understood that more people are living longer, and that positive development means that more people will live long enough to develop Alzheimer’s disease.

Our big-ticket policies on dementia—the integration of health and social care, the Carers (Scotland) Act 2016 and now the social care reform programme—are designed to help to address that demographic shift. If we have not got it right all the time—which of course we have not—the intent and the drive are still there to make this happen.

We welcomed the Alzheimer Scotland report, “Delivering Fair Dementia Care For People With Advanced Dementia” earlier this year. To respond to Sandra White’s question, I say on behalf of the cabinet secretary that she is considering the report’s recommendations as part of the social care reform programme. We continue to work with all partners to support the implementation of “Scotland’s National Dementia Strategy 2017-2020”. That includes a commitment to improve referrals to enter dementia post-diagnostic support, as we recognise that the service has not yet reached enough people. We have also extended free personal care, which currently benefits more than 77,000 older and disabled people in Scotland, to those under 65.

The dementia charter of rights has also influenced the suite of carers’ rights that we have established under the 2016 act, including the right of each carer to have a personalised plan to identify what is important to them. As we all know, carers have the right to be listened to in assessing the needs of the cared-for person and in planning for when the person who is looked after comes home from hospital. We still have some way to go in delivering on that, but we are on the right track. Carers have the right to information about support, including through a carer information and advice service in every area. All those rights are summarised in the carers charter.

Earlier this year, we announced a review of mental health legislation in Scotland to improve the rights of, and the protections for, persons—including those with dementia—who may be subject to the existing provisions of mental health, incapacity or adult support and protection legislation, and to remove barriers to those who are caring for the health and welfare of those individuals. The review is focusing on how the views of people with lived experience can be part of the decision-making process.

Last year, we consulted on a number of changes to the Adults with Incapacity (Scotland) Act 2000, including changes to power of attorney and guardianship orders. We will incorporate ideas for the reform of the law on adult incapacity, including those that come from the review of learning disability and autism, into the findings of the mental health review in order to form an overarching review of mental health and incapacity law.

To build on all our partnership work on dementia, the programme for government says that we will consult on a fourth national dementia strategy next year. It is important that everyone with a locus in this area feeds into that process. As a Government, our commitment to this agenda is strong, as is the commitment of this Parliament, as we have heard tonight. That commitment is shared by every member in the chamber, as has been abundantly clear in this short and very late debate—again, I apologise for the lateness of the debate. I thank members for their contributions, and I thank those in the gallery for their contributions and for their presence here tonight.

The Deputy Presiding Officer:

That concludes the debate. I thank everyone involved, including our guests in the gallery.

Meeting closed at 21:15.