Charter of Rights for People with Dementia and their Carers

– in the Scottish Parliament on 28th June 2017.

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Photo of Christine Grahame Christine Grahame Scottish National Party

The next item of business is a members’ business debate on motion S5M-05935, in the name of James Kelly, on a 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, in October 2009, members of all political parties supported a members' business motion, S3M-04852, on a Charter of Rights for People with Dementia and Carers; notes the view that, while progress in rights-based approaches has been made, more can be done to increase visibility and access to rights; understands that there are 8,116 people who have dementia in Glasgow; notes the content of 3,000 letters from carers of people with dementia, which were presented in Parliament in 2011 and published in the Journal of Ageing University of Illinois, noting that feelings of loneliness and isolation are central to the caring process; values the work of the Alliance's Dementia Carer Voices project in reaching out to 80,000 people, resulting in 14,000 pledges across the UK to make a difference to the lives of people with dementia and their carers, based on the life experience of Tommy and Joan Whitelaw; notes that analysis of 6,000 pledges in Scotland describes the views of frontline staff regarding the importance of time for compassionate caring; considers that the experience and stories of over 90,000 people with dementia and their families are key to driving forward improvement; believes that dementia is everyone's business, and considers that the original sentiment of motion S3M-04852 and the importance of driving culture change and empowering people with dementia remains true, and that everyone can make a difference to drive that change.

Photo of James Kelly James Kelly Labour

I welcome the opportunity to host this members’ business debate on a charter of rights for people with dementia and their carers. I thank all the members from across the Parliament who have signed the motion and given support on this important issue.

The starting point is to understand the issue that we are dealing with. We have a growing elderly population in Scotland, and something that comes from that is that, unfortunately, we have a growing number of people who suffer from dementia. It is a difficult condition for those who suffer from it, and also for their families and carers. Suddenly, in the latter stages of their lives, people enter a vulnerable position. It becomes difficult for them to understand and difficult for those around them to give them proper support. In Glasgow alone, over 8,000 people suffer from dementia. That shows us the size and scale of the problem. From that point of view, it is important to reinforce the importance of rights for people with dementia and their carers.

In this debate, I want to pull together several strands that reinforce the importance of a charter of rights for people with dementia and their carers. As a starting position, it is important to look back and note a motion that was agreed to in the Parliament in 2009, which was put together by the cross-party group on Alzheimer’s and dementia. I pay tribute to the work that former MSP Irene Oldfather did in that group—[


]—and particularly on that motion on a charter of rights. I know that Irene Oldfather, who is in the gallery this evening, continues to champion the issue as a director of the Health and Social Care Alliance Scotland. That motion was the forerunner, as it flagged up this important issue and put in train a lot of important work.

No one personifies the campaign on the issue more than Tommy Whitelaw, who has done a lot of work with the alliance and has been at the forefront of its dementia carer voices project. Tommy’s mother was diagnosed with dementia and he cared for her for five years until, sadly, she passed away in 2012. It is a mark of the person that Tommy Whitelaw is that, even after his mother’s passing, he embarked on an intensive campaign to make people aware of the issue. Many parliamentarians will have come across him not just here in the Parliament but on his various tours throughout the country. He had 85 conversations with health professionals, enlisted 14,000 pledges from people and has been to 600 locations. It is important not just to pay tribute to that work, but to look at some of its key findings.

What Tommy found in speaking to people with dementia and their carers was that one difficulty they struggled with was loneliness as they tried to face up to the condition. They felt that they were on their own and not properly supported. There was also frustration. It is frustrating enough to have an illness, but with the illness of dementia there is a real frustration for people trying to come to terms with what is happening in their lives. There are also serious economic challenges as those people need to be supported. The reality is that care is not always consistent throughout the country and not always of the quality we would like. Those were some of the findings from Tommy’s work.

I also want to pay tribute to the work of Age Scotland, which has worked very closely with the Scottish Trades Union Congress in order to focus on the rights of people at work who have started to suffer from dementia. It is important to realise that dementia is something that people can start to suffer from at a younger age when they are still working, and that we have an older working population. People should be able to keep as much normality in their lives as possible, and continue to work. The work that Age Scotland and the STUC have done has reinforced that.

A rights-based approach is crucial, because it gives people with dementia a voice, it helps them to make a difference and it looks to maintain, build on and improve their quality of life. In looking at all of those strands, the Scottish Government has worked very constructively with the different organisations, and today it has published a new dementia strategy. That is a very welcome contribution. There are three points to the strategy: first, support for timely, person-centred care; secondly, making progress on the provision of support; and thirdly, responding to the fact that there is an increasing number of older people with dementia.

The strategy is very welcome, and a lot of progress has been made since the original motion was debated in 2009, which I mentioned earlier. However, I think that much more can be done to support people with dementia, and also their carers. A rights-based approach would help vitally in that area, so I hope that members’ contributions from across the chamber will not only inform the Scottish Government’s work but make a difference not just to on-going budgets and strategy, but to people around the country who are having to deal with the consequences of dementia.

Photo of Clare Haughey Clare Haughey Scottish National Party

I refer members to my entry in the register of interests, in particular to the fact I am a registered mental health nurse still in clinical practice, and I thank James Kelly for bringing the motion forward for debate in Parliament. I doubt whether there is a family in Scotland that has not experienced the loss of a loved one through dementia, and I mean loss in all meanings of the word. As many of us know, dementia takes our loved ones away from us little by little, day by day. It is estimated that currently, 855,000 people in the United Kingdom are living with dementia. That figure is expected to rise to 1 million by 2021.

Dementia is not a disease in itself; it is a word used to describe a group of symptoms that occur when brain cells stop working properly. That happens inside specific areas of the brain that affect how we think, remember and communicate. Over time it affects a person’s ability to make judgments and to act in their own interests, and the condition severely compromises their ability to protect their rights.

That is why the rights-based approach taken by the charter of rights, together with subsequent policy work placing an individual’s rights at the core of a person-centred approach, are so important. We should remember that people with dementia are individuals first and foremost, and their care should take into account their unique personal circumstances, needs and wishes, as well as the needs of their family and carers.

The charter has taken the United Nations-endorsed PANEL approach, which focuses on the rights of everyone to P for participate in decisions that affect their human rights; on A for the accountability of those responsible for the respect, protection and fulfilment of those human rights; on N for non-discrimination and equality; on E for empowerment—for people to know their rights and how to claim them; and on L for legality in all decisions, through an explicit link with human rights legal standards in all processes and outcome measures.

It is good to hear from respected charities such as Age Scotland that progress has been made in recent years in promoting a rights-based approach but I am sure that, across the chamber, we can all agree that there is still work to be done.

Many years ago, when I was a young staff nurse, I saw at first hand the effects of dementia on people while working in hospitals and nursing homes, both here and overseas. Most of the people I nursed would be considered elderly—they were in their 80s and 90s—but dementia is a condition that affects not just older adults but those in their 60s, 50s and even 40s. It is projected that, by 2031, the number of 50-year-olds will have increased by 28 per cent, so juggling a career and a diagnosis of dementia will become a real issue for many people, families and employers.

We are seeing more relatively young people with the condition, and we need to be prepared to accommodate their particular needs. With a number of people still working when they receive their diagnosis, reasonable adjustments need to be made by workplaces to support a person with dementia to allow them to continue to work for as long as they want to do so.

As James Kelly did in his speech, I welcome Age Scotland’s work with the STUC to highlight the difficulties that many people experience with their employers following diagnosis. Dementia fits the criteria of a disability under the Equality Act 2010. As a consequence, employers are legally obliged to make reasonable adjustments to support someone with dementia to work, should they wish to do so. Employers need to be more aware of the charter of rights for people with dementia.

Dementia friends is an Alzheimer Scotland initiative aimed not only at raising awareness about dementia but at reducing stigma around the illness. My staff and I have registered with the initiative, and I encourage other MSPs and employers to do so as a first step in being more understanding about dementia and how we can make our communities more dementia friendly.

When we value and embed the experience of those with dementia and their carers, as has been done through the Scottish dementia working group and the national dementia carers action network, we can ensure that the voices of people with dementia are heard and that their rights and concerns are heeded.

I welcome today’s launch of the third dementia strategy, which will respond to the increasing proportion of older people with dementia, continue to deliver person-centred treatment and support those with a dementia diagnosis. It is that focus on improving standards by listening to those with dementia, putting them at the centre of their care and working in collaboration with their carers and third-sector organisations that will help us to improve their quality of life.

Photo of Jackie Baillie Jackie Baillie Labour

I start with an apology, because I will need to leave the chamber before the conclusion of the debate.

It is fitting that we are debating the charter of rights for people with dementia and their carers on the day on which the Scottish Government has launched its third dementia strategy. Politics is all about timing, of course, so let me join others in thanking James Kelly for his foresight in lodging his motion for members’ business on this day.

Let me go back at least four or five years, to when I first met Tommy Whitelaw. Tommy cared for his mum, Joan, as we have heard. She had vascular dementia until she passed away in 2012. His story is a moving one, but it is what Tommy did next that was so inspiring. I have to confess that I thought he was cool anyway, because he was a tour manager and had been a band assistant. What he did next, however, was even cooler. He used his knowledge, his understanding and his experience to help others.

Tommy kept a blog and, to connect with other dementia carers, he started collecting letters. Those were their stories—the carers’ stories of isolation and loneliness, stories of lack of support and information, but also stories of hope and love.

So began the Tommy on tour campaign, as he crossed Scotland collecting letters demonstrating people’s lived experience to present to the Government. How powerful that was, and it led to action in the form of the dementia carer voices project. Run by the Health and Social Care Alliance Scotland with Government funding, which is always welcome, the project is all about people. It builds on Tommy’s tour and captures the experience of carers across Scotland to shape future policy and provision.

The project is about raising awareness with health and social care professionals. I recommend that anyone who is on Twitter should follow Tommy. If they do, they will learn that there is nowhere that he has not been—hospitals, care homes, universities and colleges all over the place—and, aside from Tommy being one of the most prolific tweeters that I know, the comments from health and social care professionals are truly impressive. After a talk with Tommy, they understand the challenges that are faced by carers, and just how important a person-centred approach really is, and they recognise that carers are the experts. If we are honest about it, who else knows better? Carers bring huge value to society, but they also provide care for their loved ones with dementia. As James Kelly said, 80,000 people have been spoken to, which has resulted in 14,000 pledges across the UK. That is an awful lot of talking.

Tommy has, of course, been aided by many people, and I want to mention just one or two. The first is Irene Oldfather, who is a former member of the Scottish Parliament and is now a director of the Health and Social Care Alliance Scotland. For those who do not know, Irene set up the cross-party group on dementia and she championed the charter of rights for people with dementia and their carers, but she did not do that alone—I see two other former colleagues sitting in the gallery with her.

There is something that former MSPs can do that is really useful. Mary Scanlon was also a member of that cross-party group. She was recently awarded a CBE in the Queen’s birthday honours, which was very much deserved. With Mary and Irene is my former colleague Richard Baker, who now works at Age Scotland and has always had a keen interest in the issue. I hope that he will forgive me for saying this, but with such formidable women behind the campaign, it is no wonder that the charter was agreed. It is about driving culture change and empowering people with dementia and their carers. Taking a rights-based approach is essential, but there is much more that we still need to do to raise awareness, increase visibility and ensure that people can access their rights.

Finally, Presiding Officer, I want to make a very small plug. There is a dementia carer voices event in committee room 2 at 2 pm tomorrow. Come along and join us if you want to hear from Tommy and Irene and others. To be frank, it will be so much better than listening to us.

The Deputy Presiding Officer:

I certainly would not say that of your speeches, Ms Baillie.

Photo of Miles Briggs Miles Briggs Conservative

I congratulate

James Kelly on securing today’s debate. I also thank the organisations that have contributed useful briefings, including Age Scotland, Alzheimer Scotland, the Health and Social Care Alliance Scotland and dementia carer voices. It was particularly important to see representatives of those organisations in the garden lobby this week, and I know that many members had a great time chatting to them about some of the personal stories to which Jackie Baillie referred. I am pleased that James Kelly’s motion has attracted broad cross-party support, because it is right that all of us in Parliament speak up for and promote the rights of people with dementia and those who look after them.

The charter of rights for people with dementia and their carers is a very positive initiative, so I pay tribute to all who have helped to produce it, including colleagues on the Parliament’s cross-party group on dementia who led on the development. I am particularly pleased to see three former MSP colleagues here this evening—Irene Oldfather, Mary Scanlon and Richard Baker. Some may say that they have, having left Parliament, now entered politics, but I would not go so far as to say that.

The motion highlights the Health and Social Care Alliance Scotland’s dementia carer voices project, which I commend as an important platform for the voices of health and social care staff who work with people with dementia and their families. As has rightly been said, Tommy Whitelaw is to be congratulated on his efforts and his passion in campaigning to ensure that no family in Scotland that includes a family member with dementia goes through the caring journey experiencing loneliness and isolation. As James Kelly said, there is much work to be done to increase people’s awareness and understanding of the rights of dementia sufferers and of their families and carers. Integration joint boards need to take the lead in ensuring that all staff who work with people with dementia are aware of the charter of rights and of the imperative for person-centred and rights-based care.

As has already been mentioned, the increase in the number of people under 65 with dementia is an issue of concern in this country. Figures indicate that the number of people under 65 in Scotland who are being treated for dementia has risen by a third in the past six years and, in 2015-16, 808 people aged between 15 and 64 were recorded as having the condition. That is one of the many reasons behind my support for Frank’s law. I am pleased to announce that I will lodge my members’ bill proposal on that issue later this week, and I look for the support of members of all parties in taking it forward.

In its briefing for today’s debate, Age Scotland is entirely right to highlight that dementia is increasingly an issue for the workplace, and not just among older and retired people.

The Scottish Government’s 2013 commitment to ensure that all who are diagnosed with dementia receive support from a link worker for one year after diagnosis was widely welcomed, but the delivery of that has been patchy around the country and many people still fail to receive it. With the number of people who are diagnosed with dementia being expected to continue to rise in the years ahead, the staffing and resourcing of that pledge and of dementia care in our national health service are very significant challenges for which we need to plan now.

Again, I very much welcome today’s debate and the cross-party support that exists for promoting the rights of dementia sufferers and of their families and carers. I welcome the publication of the Scottish Government’s third dementia strategy, and the recognition in the strategy of the critical importance of working with, and listening to, those with dementia and those who care for them.

Photo of Colin Smyth Colin Smyth Labour

I thank my colleague, James Kelly, for lodging his excellent motion, which gives members the opportunity to highlight the importance of a rights-based and person-centred approach to the care of the growing number of people living with dementia, and to their families and carers.

Today in Scotland, 90,000 people live with dementia, but it is estimated that, by 2020, there will be 20,000 new diagnoses each year. It is a condition that often leaves the person who has been diagnosed, their family and their carers feeling increasingly powerless and as if they are losing control of their lives. A rights-based approach must be at the centre of dementia policy so that we can give that control back, give those living with dementia and their families and carers the ultimate say in the care that they receive, and ensure that that care is of the highest standard possible.

The charter of rights for people with dementia and their carers in Scotland has been fundamental in shaping the development of dementia policy and practice since its publication in 2009. It has underpinned key dementia policy developments since its agreement and, like James Kelly, I pay tribute to the work of Irene Oldfather and the former cross-party group on Alzheimer’s—now the CPG on dementia, of which I am proud to be vice-convener—in implementing the charter.

James Kelly and others have rightly focused on the excellent work of the alliance’s dementia carers voice project and Jackie Baillie, in particular, spoke about the amazing experiences of Tommy and Joan Whitelaw.

My brief comments are focused on the next step. That is the long-awaited third dementia strategy, which was published today. The strategy will shape policy until 2020, and its vision is of a Scotland

“where people with dementia and those who care for them have access to timely, skilled and well-coordinated support from diagnosis to end of life which helps achieve the outcomes that matter to them.”

Everybody in the chamber shares that vision, but we need to turn it into a reality.

In one of the forewords to the new strategy, Alzheimer Scotland said:

“The gap between the policy commitments found in all three strategies and the real life experience of many people is far too wide.”

“Older and wiser” was published in 2008, “Remember, I’m still me” was published in 2010 and “Dignity and respect: dementia continuing care visits” was published in 2014. Although there has been significant progress, we cannot still be sitting here at the end of 2020 repeating Alzheimer Scotland’s words because yet another policy initiative has not been fully implemented. People with dementia do not have that time.

There is much in the strategy that Labour agrees with, from the missing persons initiative to the commitment to improve palliative and end-of-life care, but the positive words must be backed up by adequate Government resources. That means scrapping the cuts to local councils that have impacted severely on social care, ensuring that social care staff have the time to provide the compassionate care that is needed and ending the scandal of 15-minute care visits.

The implementation of the new strategy must also be properly monitored. If there is a working group to help to do that, I hope that the minister will ensure that there will be regular reports back to Parliament on progress.

As the strategy is implemented, it is also crucial that policies are constantly reviewed. There is no doubt that the commitment to one-year post-diagnosis support for people who have dementia is very laudable, but it lacked flexibility. The figures speak for themselves, with only two out of five people benefiting within the Government’s own target. A key role of the working group and parliamentary scrutiny of the new strategy must be to detect any problems with commitments at an early stage, and not wait for three years.

Disappointingly, there is no reference to care charges in the 26 pages of the new strategy. It is 14 years since the Labour-led Government introduced free personal and nursing care to everyone over the age of 65. It is now time to take that policy to the next step. To use the words of the Frank’s law campaign website,

“no disability, illness, condition or disease waits until a person reaches the age of 65, then strikes.”

Of the 90,000 people who are living in Scotland with dementia, 3,000 are under the age of 65. Those people face the prospect of having to pay for their own care. The publication of the strategy is a positive move forward. I know that much progress has been made, but there is an awful lot more still to do.

Photo of Sandra White Sandra White Scottish National Party

I welcome our guests to the public gallery. I will mention them shortly.

I congratulate James Kelly on securing a debate on the charter of rights for people who have dementia and their carers. I believe that, as the motion says, “dementia is everyone’s business”. I also welcome the publication today of the third national dementia strategy for Scotland and I look forward to working with the cross-party groups that the former MSPs who are in the gallery were members of as well as with my own cross-party group on older people, age and ageing, which has a particular interest in dementia.

As other members have done, I thank former MSP Irene Oldfather and Tommy Whitelaw for the fantastic work that they have done and what they have achieved. It is important to mention what they have achieved through their work. I also welcome Mary Scanlon, a former MSP and member of the cross-party group, and Richard Baker, who has also led on the topic. I thank them all for what they have achieved.

One of the cross-party groups’ aims has been achieved: they have pushed the issue of dementia to the top of the political ladder, which is no mean feat. The group’s work has been informative, and professionals such as doctors have become much more aware of the condition. Clare Haughey mentioned employers, and recognising dementia and providing training for their staff is a huge issue for employers. As has been mentioned, the cross-party groups have pushed for that and they must be proud of achieving it.

From working with Irene Oldfather and Tommy Whitelaw, I know that a lot of what they did came from a personal perspective. It says something about what they went through that they have pushed dementia to the top of the agenda.

My mother had dementia and my experience is that it is difficult. Sometimes, people do not know what to expect. Although employers and other professionals now know about it, lots of families did not know what to expect from dementia and were left to sink or swim without information. The people and organisations that I have mentioned gave us information so that we knew what was going on, but some families are still not quite there.

I am proud of my city of Glasgow, which aims to become a dementia-friendly city. It will—not just on one day or through the launch of a project but throughout people’s lives—encourage the development of resilience in communities while recognising the impact and effect that dementia has not just on the people who have dementia but on their families. It will enable people who have dementia to enjoy the best quality of life in their communities and ensure that they are treated with dignity and respect. That development has come out of the work that has been done by many groups and by people like Irene Oldfather and Tommy Whitelaw.

Photo of Peter Chapman Peter Chapman Conservative

I am glad to speak in the debate, particularly as the Scottish Government’s third national dementia strategy was published today.

I thank Alzheimer Scotland and Health and Social Care Alliance Scotland’s dementia carer voices project for supporting the production of the charter alongside all the important work that they do to support local communities and those who are affected by dementia in any way.

I recognise the work of Alzheimer Scotland in providing community support in my region, where it runs dementia resource centres, dementia cafes and musical memory groups. Alzheimer Scotland continues to drive change and empower people with dementia.

It is fair to say that there is increasing understanding and awareness of the support that people who are diagnosed with dementia require. The charter of rights for people with dementia and their carers has influenced the policy and practice that we have seen implemented in the past six years. However, there is still a lot that we can learn from it.

An estimated 90,000 people in Scotland suffer from dementia, yet only two in five of them received post-diagnostic support in 2014-15. That leads to the question: the Scottish Government can boast impressive diagnosis rates, but why are post-diagnostic care waiting lists so long? Although the new strategy continues to pledge a minimum of one year’s post-diagnostic support, there is no indication of how the Government plans to improve the waiting times.

Henry Simmons, the chief executive of Alzheimer Scotland, has commented on that inconsistency and the fact that the gap between policy and practice is far too wide. More needs to be done to ensure that strategies are carried out fully and that the appropriate support and care is a reality for those living with dementia.

As we know, dementia does not discriminate and can strike at any age. Around 3,200 of those who are currently diagnosed with dementia are under the age of 65. However, at present, anyone under the age of 65 who requires personal care for dementia or any other degenerative brain disease must fund the cost of care themselves.

Given that the charter is based on real-life experiences, it is appropriate to mention Amanda Kopel, who lost her husband, Frank Kopel, to dementia in April 2014. In addition to caring for her husband and losing him to the disease, Ms Kopel had to face the discriminatory policy that saw her husband ineligible for financial help with care. Frank’s condition deteriorated and his need for personal care was evident, so Amanda paid nearly £300 every week for the support that he needed. Frank died just four weeks before he was due to reach the qualifying age for free care.

That experience has led to Amanda bringing her campaign, Frank’s law, to the Scottish Government. Frank’s law calls for a fairer charging system and the provision of free personal care for anyone suffering from a degenerative brain disease, not just for those over the age of 65.

The seventh point of the charter is based on non-discrimination and equality. It states:

“People with dementia and their carers have the right to be free from discrimination based on any grounds such as age, disability, gender, race, sexual orientation, religious beliefs, social or other status.”

Amanda’s story shows that such discrimination is currently happening.

We must look at the impact that dementia has not only on those suffering from the condition, but on their carers, too. Family members are often the chosen carers for those suffering with dementia and, when dementia happens at an early age, not only will the person suffering with dementia have to leave their job but so, too, will their carer. That can lead to the loss of two incomes when neither person is of pension age.

The Scottish Government’s national dementia strategy for 2017-20 follows the two previous strategies in mentioning no further plans to provide personal care for those who are aged under 65. The new strategy outlines that the first main challenge to be addressed is to offer timely, person-centred, co-ordinated and flexible support, which should be consistently available to every person living with dementia and their carers. Surely, that means that those aged under 65 who are suffering from dementia should be entitled to the same free personal care.

Given that around 7,780 people in my constituency suffer from dementia, I fully support the charter of rights for people with dementia and their carers.

The Deputy Presiding Officer:

May I ask you to conclude, Mr Chapman?

Photo of Peter Chapman Peter Chapman Conservative

I am almost there, Presiding Officer.

It is safe to say that every community in Scotland is affected by dementia. I agree with the charter that dementia is everyone’s business and that more must be done to provide consistent post-diagnostic support for people of all ages.

Photo of Maureen Watt Maureen Watt Scottish National Party

I, too, thank James Kelly for bringing the debate to Parliament and for his welcome for the new strategy. I acknowledge Irene Oldfather, who is sitting in the gallery. When she was an MSP we used to share stories about how our mothers’ dementia was progressing. We have heard powerful stories today about how dementia touches the lives of so many families across the country, including my own. Clare Haughey talked about the loss that we experience prior to death, which I am sure resonated with everyone.

It is absolutely clear from all the speeches that a rights-based approach can make a fundamental difference to people living with dementia and their carers.

In preparing for the debate, I read the

Official Report of the debate that Irene Oldfather led in 2009. I recognise Mary Scanlon, who was another contributor to that debate, sitting in the gallery; I read her speech from that debate, too. I am sure that Irene Oldfather and Mary Scanlon would both acknowledge, as others have done tonight, what a long way we have come since 2009 in improving care and support for people with dementia. That includes the introduction of what we should not forget is our world-leading post-diagnostic support for everyone who is newly diagnosed with dementia. We have improved the skills and capacity of staff working across health and social care services through our promoting excellence framework, embraced the principle of personalised dementia care in acute and specialist NHS dementia care settings, and extended carers’ rights and support through the Carers (Scotland) Act 2016.

All that has been achieved in no small part through the commitment of our partners and health and social care staff working together to improve outcomes. That work has been informed by our listening to people with dementia, their families, carers and staff. Their experiences, like that of Tommy Whitelaw who cared for his late mother, Joan, have helped us to identify what was working well and what could be improved.

Although much of the work in Scotland, particularly around post-diagnostic support, is recognised as being world leading, there is a shared view that we can go further. Over the past two years we have worked closely with people who are affected by dementia and our partners to develop Scotland’s third dementia strategy for 2017-20. I am very grateful for the contributions and support of all those who have been involved, including the national dementia carers action network and the Scottish dementia working group among others whom I have met over the period.

Our strategy sets out 21 commitments that are, as the previous strategy was, underpinned by a rights-based approach. They focus on improving the quality of care across the whole care pathway, from diagnosis to provision of person-centred care for people at the end of their lives. Importantly, it focuses on the needs of carers at every stage of the journey. It also stresses the need for earliest possible diagnosis, so that the person with the diagnosis can be at the centre of decision making about their on-going care, which is very important.

Our shared vision is of a Scotland where people with dementia and those who care for them have access to timely, skilled and well co-ordinated support, from diagnosis to end of life, that helps to achieve the outcomes that matter to them.

Together with our national and local partners we will work to ensure that the ambitions in the strategy are realised, but the approach is not about the strategy in isolation. Improving care and support for people who are affected by dementia is everyone’s business, so we are committed to implementing a range of other related policy ambitions that reinforce our vision and strategy.

Improving support for carers is one such area. From next April, the Carers (Scotland) Act 2016 will bring new rights and support for carers, ensuring that they can continue to care—if they so wish—in better health, and to have a life alongside caring. Carers will have a right to an adult carer support plan or young carer statement to identify their needs and personal outcomes. Local authorities will have a duty to support carers, based on their identified needs that meet local eligibility criteria, and to consider whether that support should include a break from caring. There will be new requirements for carers to be involved in decisions about discharge from hospital of the person whom they care for, and for carers’ views to be taken into account in community care assessments. We will shortly consult on a carers’ charter, which will set out all the rights for carers under the 2016 act, to be published before the act takes effect next April.

I know that integration authorities and carer organisations are working hard to prepare for the act. I also want to acknowledge some of the other initiatives that we are supporting, such as “respitality”, which involves hospitality businesses gifting short breaks for carers, co-ordinated by local carers’ centres and Shared Care Scotland. We are also committed to increasing carers allowance to the same level as jobseekers allowance, from April 2018.

More widely, I am pleased that the dementia carer voices project, which is managed by the alliance, has involved more than 70,000 NHS staff, care-home staff and students on the make a difference pledge campaign. The campaign supports the objectives of the charter of rights for people with dementia and their carers, which seeks to ensure participation, accountability, equality, empowerment and legality across services.

I am pleased that there have also been considerable advances in local areas in developing and embedding dementia-friendly community initiatives, including those in Motherwell, the Highlands, Stirling, Edinburgh and Prestwick. Such initiatives bring people from across communities to work together to help people with dementia to remain a part of their community. I was particularly pleased to see some such initiatives in supermarkets: for example, in Forres in Moray, a supermarket has piloted a relaxed checkout to support people with dementia and others who need extra time at the till.

Several members have talked about meeting post-diagnostic support needs. Earlier today, I visited St Triduana’s medical practice in Portobello in north-east Edinburgh, where I met staff who will test the value of delivering post-diagnostic support in primary care, which we hope will improve accessibility for people with dementia and their carers. Improved accessibility, with joined-up care with a link worker, will mean quicker diagnosis and, thereafter, support being put in place more quickly.

Members have also mentioned Frank’s law. As most members will know, the Government is carrying out a feasibility study that is looking at how to extend free personal care to everyone under the age of 65, regardless of their medical conditions—not just people with dementia. The study, which is being carried out by Scottish Government officials, is due to be completed this summer. We will share the findings with Parliament. We are seeking views to inform the feasibility study and officials are holding meetings with stakeholders to feed into it. We are also working with the Convention of Scottish Local Authorities and we have issued a questionnaire to local authorities in order to gather up-to-date information to inform the study. I am sure that we will all be interested in seeing what that work produces.

Today’s debate has provided another opportunity for us all to recognise the importance of a rights-based approach to improving the lives of people who are affected by dementia. I reiterate the Government’s continuing commitment to adopting such an approach, as we work with partners and people who are affected by dementia in realising the ambitions of our third strategy.

Meeting closed at 17:55.