Welcome back. The next item is item 5, a Member debate under Standing Order 11.21(iv). I call on Luke Fletcher to move the motion. 

Motion NDM7773 Luke Fletcher, Rhun ap Iorwerth, Paul Davies, Janet Finch-Saunders, Jenny Rathbone, Jack Sargeant, Delyth Jewell, Altaf Hussain, Jane Dodds, Rhys ab Owen, Joel James, Peredur Owen Griffiths, Mabon ap.Gwynfor, Sioned Williams, Gareth Davies

To propose that the Senedd:

1. Notes:

a) the significant impact of the COVID-19 pandemic on people living with and affected by dementia in Wales;

b) the importance of unpaid carers in ensuring that the social care system in Wales was able to operate during the pandemic.

2. Further notes the necessity of an accurate dementia diagnosis to allow for unpaid carers, the health and social care systems and other bodies and service providers to accurately plan person-centred services, as stated in the national dementia action plan.

3. Calls on the Welsh Government to:

a) fund research into developing accurate diagnostic tools to ensure that people who receive a diagnosis of dementia can access the correct support immediately post diagnosis;

b) fund post diagnostic support for all types of dementia across Wales;

c) establish a national dementia data observatory to ensure accuracy in dementia data and to collect, analyse and disseminate data on dementia to all service providers wishing to access data to help plan and deliver dementia services across Wales.

Motion moved.

Diolch, Dirprwy Lywydd. I'd like to start by thanking the Business Committee, as well as colleagues across the Senedd, for their support in facilitating this debate. Today I look forward to Members' contributions to this debate, which is very clearly a cross-party issue. In tabling this motion in this Senedd, I've done so whilst remembering two women in my family who lived with dementia towards the end of their lives: Dorothy Walker, remembered affectionately as Dot, who was my great-grandmother, and Sandra Lewis, my grandmother, who passed earlier this year.

Dementia is a broad term that is used to describe a number of conditions that affect the brain. The most well-known type of dementia is Alzheimer's. However, each condition associated with dementia affects a person in different ways, which means that each dementia patient's needs can vary from condition to condition quite drastically. My grandmother, Sandra Lewis, was diagnosed with dementia with Lewy bodies, a little-known variant, which is closely related to both Alzheimer's and Parkinson's. Dementia with Lewy bodies means that a patient presents with difficulties of movement, concentration and alertness as well as hallucinations. For my family, knowing and receiving the correct diagnosis was all-important, given the specific care she needed. However, this is easier said than done, and, for some time, there was uncertainty as to what my grandmother was living with. I'm only a layman when it comes to medicine, and in fact calling myself a layman is probably being a bit too kind to myself, but to get to a stage where there have been multiple diagnoses indicates to me that there is room for improvement. There were, indeed, several diagnoses, ranging from Alzheimer's to calcium and thyroid issues, and in the meantime, my grandmother was not receiving the care that she needed and her quality of life was deteriorating rapidly. 

Figures provided by the Alzheimer's Society point to the current diagnosis rate for dementia being around 50 per cent. With this diagnosis rate, we only know of about 25,000 people living with dementia, when it is suspected that the actual figure is closer to 50,000 people, meaning that half of people living with dementia in Wales are missing out on the support and access to services that they desperately need. If you look at what my grandmother's condition was, around 5 per cent of patients are diagnosed with dementia with Lewy bodies, but, again, it is estimated that the figure is closer to 20 per cent. 

As many dementia charities rightly point out, research will beat dementia. In Wales, it is only fair to acknowledge the work that the Welsh Government is already undertaking in this field. On this point, I would like to thank the Deputy Minister for her engagement on this issue. I do truly mean it when I say this: from our meetings together, I can see the personal drive that you have to tackle this issue and I am immensely grateful. We have seen in Wales an offer of PET scanning, which from what I understand has led to more accurate and timely diagnosis, and the dementia action plan does make provision for the Government to react and fund services when needed.

But it is important that we now build on this, and we can build on this through the creation of a national dementia observatory, similar in scope to the one already established by the World Health Organization. As Members are already aware, my main focus as a member of Plaid Cymru is the economy, and in the economy, in a similar way to health, data is all-important. The establishment of an observatory will allow us to disseminate and analyse data relating to dementia, which will inform decision making and could provide the information needed in relation to the dementia action plan that would keep it as a plan that is ever evolving based on our most recent data.

As I've already mentioned, care needs vary significantly from one condition to the next. They can be physical or mental. Therefore, a correct diagnosis means that those living with dementia, their families and their carers can provide the care that they need. An important part of this care relates to language. Those living with dementia can forget their second language, so Welsh speakers for example can forget their English. When quality of life is mentioned, there is nothing more fundamental than the ability to communicate. It's important that we don't forget this in moving forward, and the importance of getting a correct diagnosis in order to create a personal care plan.

As we all get older and live longer, cases of dementia will only increase, so this is an issue that we need to get to grips with sooner rather than later. We have a long way to go before dementia services are where they need to be, but I hope that my motion can go some way in helping the Government get there. I encourage all Members to support this motion.

I'm pleased to have an opportunity to contribute to this debate this afternoon and I'm grateful to Luke Fletcher for leading the debate. I'm pleased to join Members in all parts of the Chamber calling on the Welsh Government to help to support people living with dementia more effectively. At the moment, it's estimated that some 1,300 people are living with dementia in Preseli Pembrokeshire, and whilst those people live in the community, many of them feel that they aren't part of that community. Many people aren't confident enough to leave their homes and to engage in their locality, so there's a very real problem here, and that's why it's so important that Governments at all levels as well as local communities engage better with those living with dementia.

Indeed, as a society, each and every one of us has a responsibility to help to create a community where current services are more inclusive of people with dementia. In my constituency, there are memory cafes in places such as Milford Haven and Fishguard, which provide a friendly and supportive environment where people can meet, talk and learn more about dementia and access information about the support available. This is the kind of initiative that we must promote throughout Wales. It's crucial that Governments at all levels empower community activity and collaborate more effectively to promote awareness of dementia in our communities by promoting awareness in every shop and business, so that staff and volunteers can better understand dementia. This will certainly help customers living with dementia to feel more confident when they're out and about in the community.

I'm sure that Members are familiar with the dementia-friendly communities initiative, which aims at creating communities across the UK that are more friendly to those living with dementia, and more accessible to those living with dementia. This can be anything from being more patient with a customer as he or she pays, or communicating more clearly over the phone, and this makes a huge difference to people living with dementia. I'm pleased to see places like Solva and Haverfordwest as being registered as dementia-friendly communities, and it's encouraging to see organisations such as Dyfed-Powys police and the fire and rescue service in mid and west Wales also being promoted as being dementia friendly.

I'm aware from previous discussions that the Welsh Government is supportive of the dementia-friendly communities. But perhaps in responding to the debate, the Deputy Minister could give us an update on what outcomes have been achieved since the Welsh Government gave its support to this campaign. I appreciate that there is no one-size-fits-all solution to dementia, because people are affected in different ways, and also what works in urban areas won't necessarily work in more rural areas.

We know that there are challenges in providing appropriate support and care to those living with dementia, particularly in the rural communities that I represent. We saw a report on people's experiences of living with dementia published back in 2017 that said there were specific challenges in relation to transport, general awareness of dementia, and access to Welsh-medium support. However, I can't see any specific steps that have been taken to tackle some of these challenges, and perhaps, once again, the Deputy Minister will take this opportunity today to note what support is being provided to those living with dementia in rural areas, and also those who want to access services through the medium of Welsh.

Now, there are also challenges facing carers of those with dementia. We know that it has a destructive impact on personal relationships and family relationships, and for some carers, living with dementia can be very difficult, and can lead to problems with depression and anxiety. In July, the Carers Trust published a series of recommendations for Welsh Government to help people to have a life alongside being carers, which looked at respite care. I would be grateful if the Minister would give her assessment of that piece of work, and how that has actually fed into the ministerial advisory group for carers delivery plan, which is expected to be published in the autumn.

So, in conclusion, Deputy Presiding Officer, there are some excellent examples of local initiatives that have been established by a number of groups in supporting and improving the lives of those living with dementia in Wales, and we need to disseminate that good practice. I encourage Members to support this motion this afternoon. Thank you.

I'd like to thank Luke Fletcher for proposing this debate, and the level of interest indicates that we are all aware of just what an important subject this is. We face a veritable epidemic of dementia—that's not my assessment, but that of a leading expert in older people's medicine. We need to do research as a matter of urgency into the link between air pollution and dementia. We need to understand—. We know that chronic obstructive pulmonary disease is caused by air pollution, but what about the impact of particulates inhalation into the bloodstream, ending up in the brain? Last week, the Deputy Minister for Mental Health and Well-being spoke about our obesogenic environment, and the dominance of junk-food advertising, which means people are not eating enough of the things that nourish their brain, rather than clogging up their arteries.

During the lockdown, we've seen a huge impact on people with dementia, but particularly those who are caring for people with dementia, because all the normal support services that were previously there have simply been collapsed, in most cases. This has been confirmed by research done both in Wales as well as in other parts of Europe. This has been a really terrible time, and of course has caused levels of stress both to people with dementia and their carers. I'm aware that, since the pandemic struck, Swansea Council has had to withdraw two key dementia care and support services, admiral nursing and the dementia service support team. So, there's now a significant gap in provision for carers and those living with dementia there. Carers report the impact of the severe domiciliary care staff shortage in the area, which means that their care packages are also being reduced or cut completely. So, families are having to fall back on other family members, or neighbours, to get any sort of respite at all, and this is really, really serious.

Amidst this perfect storm, I was devastated to be told that the Alzheimer's Society was choosing, just last month, to decide that they would not be reopening the day-care centre in Oldwell Court in my constituency, which had been closed since the beginning of the pandemic. This was just terrible timing, for the carers and for the people who used to enjoy going there. There's been no opportunity to discuss what the alternatives are, and indeed, at the moment there are no alternatives. Cardiff, at the moment, is confined to one day centre, where they are assessed as being safe to take seven service users on any given day. That's for the whole of Cardiff, and the place to which people with the most acute problems go—those who wander, those who occasionally become violent because they are so confused—that's closed because there's asbestos in the building. You couldn't make it up. This is just so terrible, and the burden on carers and the boredom and lack of stimulation, particularly for those with the most profound confusion, is really terrible. It is not just language that's so important to grab hold of, but also food is incredibly important. When I visited the Minehead day centre in Llanrumney recently, there was a wonderful chef there. The service users were actually writing these letters of appreciation because of the wonderful home-cooked food they were getting. So, that's wonderful too, but also music is such an important part of what people don't lose. Why is it not possible to do music sessions over the phone, over video, even if we can't yet have services back in person?

But frankly, for the long term, we need dementia-friendly services in all our community activities, both in our community hubs that we have in Cardiff, but also our gardening clubs, our bowling clubs, our darts—all the other things that older people enjoy doing need to be available to people with dementia, because we are talking about a huge spectrum of need. For some people, it's impossible to engage at all with ordinary activities but, for others, it's perfectly possible so long as we are aware of the particular needs they have and where they might occasionally get confused, and how we can bring them back to it. So, this is a massive job and a really important debate. 

I thank Luke for bringing this debate before us today, and I'm very pleased to take part in the debate. 

Dementia is a cruel, cruel disease that has a huge impact on thousands of families across Wales. I know about its devastating impact through my own family as my great aunt had dementia. We will hear many personal and powerful stories shared during this debate, so to complement that, I wanted to focus on what the third sector organisations had to say about what could be done to help improve people's lives and soften the blow that dementia delivers. 

The Alzheimer's Society Cymru estimate that there are around 50,000 people in Wales living with dementia, and this is only a best guess since the current diagnosis rate, as we've heard, is only 50 per cent. That figure is expected to double by 2050. Having such an inaccurate picture of dementia in Wales means many people are not receiving the support they need or deserve. It also means that many who are receiving support are receiving it later than they should, resulting in poorer outcomes for all those concerned.

Anecdotal evidence suggests that around 4,000 people in Wales are waiting for an assessment by the memory assessment service due to the COVID backlog. As well as improved and earlier diagnosis, Alzheimer's Society Cymru are in favour of a national dementia data observatory, as we heard from Luke earlier, to collect, analyse and disseminate information on dementia to all those agencies and service providers that need accurate data to help them plan and deliver dementia services across Wales.

Many families with experience of dementia know that the burden of care often falls upon them. We know from the first coronavirus lockdown that family and friends spent an extra 92 million hours caring for loved ones with dementia. Since the pandemic began, it is estimated that unpaid carers have provided £135 billion-worth of care across the UK. Unpaid carers have been taken for granted, but at what cost to them? It cannot continue. 

Existing difficulties in accessing appropriate support services, carers' assessments and respite care have been magnified by the pandemic. The chronically underfunded social care system left many with nowhere to turn. Dementia symptoms worsened for many due to the lack of expert help during the pandemic. It is vital that we learn the lessons from the pandemic. The pandemic exposed the flaws in the system, and it is incumbent on those with the responsibility and the power to rebuild the system be better equipped to deal with the kinds of extreme stresses and strains that we have seen over the last 18 months.

I will now turn to the social care system in Wales—a matter I have raised already this week with the First Minister, during First Minister's questions, due to the actions of the Labour-controlled Caerphilly County Borough Council and the devastating plans for social care for disabled adults. There is so much to improve on, and until we see some radical policies in this field, patients, their families and the staff that work in this sector will continue to suffer. That radical change should be in the form of a merger between social care and healthcare. We have been calling for this for the best part of a decade, yet we seem no closer to it. If care was free at the point of need and if there was a culture change that saw care workers respected and valued in terms of pay and conditions, then there would be a step change for workers in the sector, and also the patients that need this vital service. A merger would not just benefit those with dementia, but everybody in need of social care. I urge this Government to do what is right for the people in Wales. Diolch.

I would like to declare an interest, as I am the chair for Brynawel Rehab Wales. 

I am pleased to have signed this motion for debate and thank you for calling me to speak this afternoon. Dementia is a cruel disease: cruel for the individual and for their families. It is also one that is going to place more pressure on public services to reform to meet people’s needs, where higher quality, more adaptable care will be needed as more people face this illness.

We are ageing. Dementia is on the increase, and to live a good life becomes a big challenge—a challenge we must meet. Our motion rightly calls for the need to ensure an accurate diagnosis of someone's condition and the right package of support to be identified quickly. We must also recognise that around one in 10 people with dementia have some form of alcohol-related brain damage—that is called ARBD—especially in younger people under the age of 65, where ARBD affects about one in eight people. It is reversible and has a better prognosis if diagnosed early.

The Welsh Government's dementia action plan for Wales expires next year, and whilst I welcome many of the sentiments and the commitments from here on in, we need to be more ambitious in how we provide a good quality of life for those with dementia. The plan said that because of the actions contained within it, more people would be diagnosed earlier, enabling them to plan and to access early support and care if needed. I look forward to the Minister outlining how this plan has worked for individuals and what evidence there is that more people have been diagnosed earlier.

When people are diagnosed, some experience a fear of what it might mean for them. Many people want to be cared for at home, close to their families and neighbours, remaining part of the community. This is something we all value, and for those older people with dementia, we can never underestimate the importance of family and familiarity with surroundings and locality. Sadly, many people end up in a care home, not because their condition cannot be responded to in their own homes, but because it becomes a matter of finance. For some people it's not about what is best for them, but best for the state and the convenience of others. That saddens me and we need to think more creatively in helping people to remain at home for longer.

Our care sector is struggling, and the pandemic has exposed weaknesses in our ability to sustain a sector based on high quality. The First Minister has previously campaigned on a policy of shifting care provision towards the not-for-profit sector, to realise more investment. This is sensible, but we need to think about what types of homes we build, how they are designed, located, and connected.

It's also about the service we provide, the lives and daily experiences we can support. The Government's plan rightly talks about developing links between homes and the community, but we need to pause and reimagine what these homes should look like in the future, and the environment that they provide. It is also about the way that families can remain involved in their loved ones' care and in their lives. 

I would like to see a faster pace in securing the integration of services, including health, social care and housing partners. Fundamentally, however, we need to work through how we build the capacity in care to respond to the likely increase in those who will live with dementia into older age. We need to understand from people and their families about the sorts of things that will make a difference to them, what matters to them in their lives and how we, together, can help them achieve it. I would like an assurance this afternoon that there has been some progress and a commitment to be more ambitious in how we approach the delivery of care and services for those with dementia. Thank you.

Clearly, there is real resonance across the Chamber in term of what people are saying. I've been here with my pen, actually, striking out quite a bit of what I'm going to say, you'll be very pleased to hear, Dirprwy Lywydd. I also want to acknowledge that many of us in this Senedd have been directly affected by dementia. My mother actually died of dementia and my father died of Alzheimer's. I want to pay tribute to all of those who cared for all of our family, and my mum and dad, up in north Wales; thank you—diolch yn fawr iawn ichi gyd.

It is extremely complex, attempting to reduce the number of cases of dementia. Many of them are undiagnosed, due to those challenges right now as well in COVID, so I do welcome this debate that, Luke, you've brought forward—thank you—as an opportunity to reaffirm our collective commitment to this important issue.

I would also welcome clarification from the Deputy Minister, as has been said, as to whether the further dementia action plan will be extended beyond 2022, and look forward to that, as has been said, being more ambitious, in terms of focused improvement in dementia care in Wales.

I want to say a little bit as well about dementia in rural areas. Support in rural areas for dementia is particularly challenging.

Will you take an intervention?

Of course I will; thank you.

Thank you very much indeed. On Monday, Darren Millar and I visited the Carers Trust North Wales Crossroads Care Services at their new north Wales dementia centre in north Wales. We heard that this is unique in Wales, contracted and funded via Betsi Cadwaladr health board but run on a charitable basis. We heard about their plans to create a best-practice hub in central Wales, hopefully with satellite hubs in the east and west. Will you join me in urging the Welsh Government to look at this as a best-practice model? 

Thank you, Mark; thank you for that intervention. Of course I will join with you; anything that improves and enhances the delivery of services to both those who suffer from dementia and their carers in a rural area such as Mid and West Wales—I'd be very happy to join with you and others in supporting that moving forward.

Over 17,000 people are affected by dementia in rural Wales, yet there are huge difficulties in accessing specialist support. Poor public transport networks in rural areas lead to social isolation and loneliness for those affected, as they are unable to access those specialist services.

As we've also heard, it's really important that carers must not be forgotten as part of this debate too. Difficulties in accessing respite care, especially, once again, in rural areas, makes carers' lives more challenging as they struggle with the pressures of caring responsibilities and a shrinking support network after COVID. And there is the embarrassment and sometimes shame that can come with a diagnosis or the potential of a diagnosis of Alzheimer's and dementia, and I can speak about that as somebody personally affected.

The work that our unpaid carers do is underestimated, and it's important that we properly support their work. My party has proposed a £1,000 increase in the carers allowance in order to ensure that we recognise their contribution, and I'm sure that others also want to ensure that that contribution is recognised.

I finish once again by thanking Luke—diolch yn fawr iawn ichi—for bringing forward this debate, and I hope that we can all work across parties to ensure that there is dignity for those we love, for their carers, and continued gratitude and the right rewards and recognition for the staff who look after them so expertly. Thank you—diolch yn fawr iawn.

I am pleased to contribute to today's debate, and I thank my fellow Member from Plaid Cymru for South Wales West, Luke Fletcher, for raising this important issue about the need to develop and improve diagnostic approaches and to fund support in order to support the tens of thousands of people in Wales affected by all kinds of dementia. I say tens of thousands, because, as we've heard, rather than a specific figure, the truth is we don't know the exact number. According to the Alzheimer's Society Wales, more than half of the 50,000 people suffering from dementia are undiagnosed. My father died of Alzheimer's six years ago. He was one of the ones who didn't get a diagnosis or the medical or practical support for too long, and, indeed, even after he was diagnosed, my mother had to cope with what she described as a very difficult process—such a difficult process, too difficult—in terms of finding information and having access to clinical support and practical support. The expectations and the requirements of unpaid carers in this sense, people who are often vulnerable and at the end of their tether emotionally and physically, are unreasonable and create great frustration and concern. We need to create a much better system of providing dementia services and the correct support for people living with dementia and those who care for them.

Knowing what my parents went through, the difficulties that we experienced as a family in terms of having access to support services and the assessments that were needed to access that support, I can imagine entirely how terrible the COVID period is and the impact that it has already had on an unacceptable situation for too many people. Four thousand people, according to the Alzheimer's Society, are waiting for a vital memory assessment that opens the door to treatments and support. I support the call of the Royal College of Psychiatrists in Wales that specific funding is needed to increase capacity and to ensure equitable access to diagnostic infrastructure and to create a clinical pathway that's much better in terms of access to treatments.

During the pandemic as well there were great demands on unpaid carers, as Jenny Rathbone and others said, and the lockdown has exacerbated the symptoms of dementia and the terrible lack of investment in our social care system, leaving people without the support that they needed. Our care homes, where so many people who live with dementia live, they were left wide open to the pandemic. That is a scandal that the Welsh Government will need to account for. But we need action now to try and light the flame of hope in this very dark period, which has had a disproportionate impact on people with dementia.

Due to the complex nature of dementia, the need for quality, long-term data is high, and I am therefore glad to support the call in the motion for the Welsh Government to establish a national dementia data observatory to improve the planning and delivery of dementia services. As a former staff member, I'm proud that Swansea University in my region is playing a key role in world-leading multi-disciplinary dementia research. We have expertise here in Wales that we can and must develop further. Unfortunately, too many of you will, like me, know first hand why this motion is important. You can never ever be prepared for the effect dementia will have on you when it strikes your family, but we as a nation can be more ready, armed with knowledge, with proper support and with care.

When I was elected, I told Beti George, who lost her husband, David Parry-Jones, to dementia, that I would do everything possible to improve the support for people like her and her husband. 'There's been plenty of talk in the Senedd, Sioned', she said. 'We need action.'

I would like to place on record my thanks to Luke Fletcher for going around seeking support for this debate today, and I was really proud to co-submit.

Now, there is no denying that the COVID-19 pandemic has had a massive detrimental impact on people living with and affected by some form of dementia. Ninety-five per cent of carers, in a survey conducted by the Alzheimer's Society, reported a negative impact on their mental or physical health. And really sadly—you know, it's hard to read these statistics out, but over a quarter of people who died with COVID-19 from March to June 2020 in the UK had dementia. So, it does bother me when the dementia action plan for Wales states:

'We need to further develop the links between care homes and community services and will expect the dementia "teams around the individual" to provide specialist and regular in-reach support to care homes. We are also encouraging GP practices to offer a new enhanced service for residential and nursing care in Wales.'

Now, that stemmed from—. Seventy-five per cent of care homes surveyed said that it's difficult because GPs are reluctant to actually visit residents there. So, the evidence indicates that care homes have not been receiving an enhanced service from GPs. So, I will be pleased to learn what steps the Welsh Government will take to address this.

This month, Meddyg Care has become the first care home group to establish an admiral nurse service in Wales. So, while other organisations have dementia advisers, who offer valuable guidance to people with the condition and their families, admiral nurses go beyond advice—they offer comprehensive specialist support and expertise for families and those living with the complexities of dementia. And reading on, I was further surprised to find that there are no admiral nurses in north Wales. So, Minister, I just wonder what review you could do as a Government to maybe help registered nurses become admiral nurses. This would be in line with the following outcome in the dementia action plan that says:

'Staff have the skills to help them identify people with dementia and to feel confident and competent in supporting individual's needs post-diagnosis.'

Admiral nurses can also help unpaid carers, as such nurses can equip them with stress-management techniques and coping strategies that can then help to make contact with respite services and provide specialist carer education and training. In fact, really, we shouldn't be seeing any delays now in implementing any steps that might see greater support offered to unpaid carers.

The sad thing is that 40 per cent of those feel unable to manage their caring responsibilities. Seventy-two per cent have not had any break during the COVID-19 pandemic, and 73 per cent have reported being exhausted as a result of caring during the pandemic. So, I agree with Carers Wales, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness, who have called on the Welsh Government to ensure that our unpaid carers providing significant hours of care to patients with dementia—that they get the breaks they need.

Now, whilst I welcome the fact that the Welsh Government is providing £3 million this financial year to support emergency respite care and the development of a short breaks fund, I am aware that some unpaid carers are taking on further responsibilities. So, again, it's all down to this data—this important data we need—so that we can actually look—or you can look, as a Government—at how you can alleviate the pressures that they are feeling.

Finally, as Alzheimer's Society Cymru have highlighted, Wales is actually in a unique place, with access to dementia-specific funding and skilled researchers in the field. In addition to encouraging researchers to apply for funding under the dementia action plan, I want to see Welsh Government go further, such as by funding research into developing accurate diagnostic tools to ensure that people who receive a diagnosis of dementia can access the correct support immediately post diagnosis. I want to see the establishment of a national dementia data observatory, and also to ensure that post-diagnostic support for all types of dementia across Wales is funded.

I encourage you all to join with Luke Fletcher by backing what is an admirable motion. Thank you.

The human mind is a precious and vulnerable thing. We live with our memories and when we are robbed of them and a condition like dementia takes hold, it can be cruel and debilitating. As we've heard, it's estimated that 50,000 people in Wales are living with dementia, but it affects not just individuals, but entire families who have to deal with grief and loss every day, even though their loved one is sitting in front of them. 

My grandma, Doreen, had dementia. She lived into her hundred-and-first year, but the final years of her life were taken from her gradually, piece by piece. She'd been a keen cook and baker and she was baking Welsh cakes on her baking stone well into her ninety-eighth year, but she'd forget to add the sugar or the salt or leave them on the bakestone a moment too long. Those were some of the first signs.

She used to sew and crochet and she'd delight in telling people that when my father was little, she'd made his entire school uniform, even down to the grammar school blazer, with the barathea material she'd bought in Pontypridd market, and she'd bought the school badge and sewed it on. But that solace of sewing and using her hands had escaped her more and more in her final years. The postman would see her in the window, sitting there, no longer sewing, but looking out and watching the world go by.

My grandma loved to walk. When my sister and I were little, we'd go on walks on Nelson mountain, picking blackberries and blueberries, but more and more, as she got further into her 90s and the dementia was firming its grip, she'd think that she could walk further than she could, and would keep on walking on the uneven paths near her home, being totally oblivious to the danger of falling. I remember her calling my parents' house one day and I'd answered it and she asked me, 'Why is it that I can't do all of the things that I used to do?', and she wished that she could walk and walk. She'd get frustrated and she'd be lonely, and even though my parents visited her every day, as well as carers, she'd feel sad and forget that they'd been. 

When her condition deteriorated, she agreed that she'd be more comfortable and more safe in a home, though she did still fall, and after one fall, she went to Prince Charles Hospital with my mother and she was kept—a lady in her nineties; 99 years of age—on a trolley in a corridor for nine hours. This was not the fault of the doctors or the nurses or the ambulance crew; it was the fault of the system that underfunds its health service to the extent that a lady of 99 was left without specialised support in the middle of the night. We need dementia services across primary care and for hospitals and care homes to be integrated and properly funded. We need to invest and research into how to diagnose dementia more accurately and we desperately need more support for patients and their families after diagnosis so that they aren't robbed of yet more agency.

But, Dirprwy Lywydd, in spite of the sadness that marked her final years with us, my grandma had a very happy life. And although dementia robbed her of so many memories, she was singing until the end. She loved to sing. Her favourites were 'Danny Boy' and 'Mother Machree' and she sang both on her hundredth birthday. I've never known anyone else to sing 'Mother Machree', so whenever I hear those words, I think of her and I'll share some of those with you in closing, Dirprwy Lywydd.

'There's a place in my mem'ry, / My life, that you fill, / No other can take it, / No one ever will. / Sure, I love the dear silver / That shines in your hair, / And the brow that's all furrowed, / And wrinkled with care. / I kiss the dear fingers, / So toil-worn for me, / Oh, God bless you and keep you, / Mother Machree.'

I call on the Deputy Minister for Mental Health and Wellbeing, Lynne Neagle.

Thank you, Deputy Presiding Officer. Can I thank Luke Fletcher for tabling this very important motion today and for engaging with me so constructively ahead of this debate? Luke has spoken with such courage about his own family experiences of dementia. I hope that he won't mind me saying that, in my personal experience, true champions are rarely drawn from the ranks of the unscarred, and I know that people living with dementia will have a powerful champion in you in this Chamber, Luke.

I'd also like to thank everyone else who has spoken today and I recognise that these have been difficult contributions to make and painful for Members and very important it was for everybody to hear them.

These last 18 months have been incredibly tough for everyone, but for no-one more so than people living with dementia. The loss of routine, changes to support, uncertainty and the restrictions on care home visiting have made a challenging situation even more difficult. That's why I was pleased, last week, on World Alzheimer's Day, to be able to launch the 'Dementia action plan: strengthening provision in response to COVID-19' document. This document was developed with our partners to supplement the 'Dementia Action Plan for Wales', and reflects the priorities that came to the fore during the pandemic.

Several of these priorities align with the focus of the debate today, for instance, equity of access and evidence-based approaches, research and development and learning and development. We will be reporting against our progress as part of our update against the action plan. Colleagues will know that our dementia action plan was co-produced with people living with dementia, and likewise, our recovery plan was co-produced with members of our dementia, delivery and oversight board, which includes those living with dementia as well as third sector partners, and I'd like to take this opportunity to thank everyone involved in this vital work.

This motion before us today recognises the crucial role played by unpaid carers in the pandemic; I couldn't agree more. Welsh Government's new strategy for unpaid carers, launched by my colleague Julie Morgan on 23 March, reaffirms our commitment to support all unpaid carers in Wales to have a life alongside caring. This work has never been more important. Work is ongoing with members of the carers ministerial advisory group and carers engagement group to develop a detailed plan to be published this autumn, and this will be accompanied by a new carers charter. We established the carers support fund during the pandemic. This is managed by Carers Trust Wales and aims to support unpaid carers with financial pressures, and I can confirm that, to date, this support has already been accessed by almost 6,000 unpaid carers. We are also allocating £3 million in this financial year to meet the anticipated spike in demand for both traditional and innovative respite services as lockdown restrictions are eased.

Luke is absolutely right to be particularly concerned about the need for an accurate dementia diagnosis. Again, I couldn't agree more. I know from my own personal family experience just how vital getting prompt, accurate diagnosis is if families are to access the support they need. This, for me, is also a fundamental rights issue. We wouldn't just tell a cancer patient that they have cancer without telling them what sort they have, and the same should absolutely apply to those living with dementia.

The companion document I referred to earlier confirms that timely diagnosis remains a priority area for action. Digital Health and Care Wales and Improvement Cymru will be developing their ability to report on diagnosis rates monthly in order to support the improvement required in this area. Last year, we issued a circular to health boards in Wales requesting memory assessment and primary care services to record a person's dementia diagnosis against agreed Read codes to enable the provision of accurate information, and we'll be working with stakeholders this year to further embed this. These Read codes support the recording of different sub-types of dementia, including Lewy body dementia.

In the autumn, I'll be providing an update on progress against the actions within the dementia action plan. I'll provide further information on what support is offered to families, and more information about how funding is made available to RPBs and how that is utilised. I'll also update Members on how people are supported to access services in their preferred language, as I recognise that, for people who are vulnerable, this is a fundamental matter of need and not of choice.

In response to Jane's comments on the dementia action plan, can I confirm that the plan was always to have a new plan, but the current plan is subject to evaluation? That's currently being—. It was slightly delayed, but the field work is now about to take place, and that evaluation will inform our new plan going forward. And just to say to Altaf Hussain as well, in relation to alcohol-related brain damage, that we've consulted on that and I'll be publishing a new framework on that very shortly.

Turning to research and development, this has a key role in improving dementia care, and I think we have a good story to tell here in Wales on that. Cardiff University is one of six UK universities leading research as part of the UK Dementia Research Institute. The university is leading a major initiative that aims to help researchers worldwide to explore the risk factors that contribute to Alzheimer's. There are also project-level funding opportunities already available through the National Institute for Health Research programmes, in which Welsh Government invests, and we are taking a national and collaborative approach in Wales, offering FDG PET scanning with the aim of increasing the effective and timely diagnosis of dementia. This follows a successful pilot in Aneurin Bevan University Health Board and, as a result, the Welsh Health Specialised Services Committee has now commissioned FDG PET scans for dementia nationally.

Anyone living with dementia and their carers have the right to ask for an assessment. A personalised plan that addresses the issues that matter to the individual is a vital part of anyone's dementia journey. We will continue to develop our approach and learn from the good practice across Wales, for instance the Rainbow Centre in Penley, which has been recognised by the 2020 accolades and demonstrates the vital importance of listening to people living with dementia.

We have also recently published a new 'All Wales Dementia Care Pathway of Standards'. This promotes a whole-system integrated care approach, and we've made it clear that all projects in receipt of dementia action plan integrated care fund funding will need to align with the new standards. This includes a specific work stream focusing on developing data items for reporting and assurance. The work being undertaken to develop these data items is vital and will play an important role in shaping dementia services in the future, so I do recognise the Member's call for a national dementia data observatory and where it is coming from.

I hope that through the work I have outlined and by strengthening our links with academia, we can achieve the same outcomes. Certainly, from my perspective, this is entirely in line with our current policy intent. The data we establish on dementia assessment and support will be reported nationally and will be exposed to the same level of scrutiny as other NHS quality and performance data. Working with our knowledge and analytical services, this operational data will also be supported by ongoing monitoring of published research and evidence, and we'll continue to engage routinely with our royal colleges and clinicians, who play a key role in promoting the latest evidence to inform policy. So, I hope the Member will recognise that, although we may differ slightly on how to get there, we are both pursuing the same ends.

I hope too that he will accept my assurance, both as Deputy Minister and as someone who has also been a champion of those living with dementia in this Senedd, that I am committed to delivering this at pace. I'm absolutely determined to improve care and support for those living with dementia and their families in Wales, and I look forward to working with you, Luke Fletcher, and other Members across the Chamber, to deliver this agenda across Wales. Diolch yn fawr.

I call on Rhys ab Owen to reply to the debate.

Deputy Presiding Officer, as many in this Chamber will know, reforming the care sector is very important to me. Like for many others, it's a personal thing too. It was said yesterday in the Chamber that the word 'crisis' is overused. That's true, perhaps, but there certainly is a crisis in the care sector, and that crisis is just going to get worse. This is one reason why I am so proud to close this crucially important debate today.

As everyone else has done, I thank Luke for pursuing this, for tabling this debate. It was a hard debate to listen to—a very hard debate to listen to—you must have a very hard heart if you haven't been touched by the debate today, but I'm heartened to see cross-party support, to see us all willing to work together to tackle this important matter.

Paul Davies mentioned people with dementia not feeling like part of their community, and that's true even in an area like Preseli Pembrokeshire, where there are so many close-knit communities. I'm sure things are even worse in certain other areas. Paul mentioned the need for people to receive training on dementia. I've experienced on too many occasions responses that have been negative to people suffering dementia—people don't understand, people don't show patience, people ignore people with dementia, and people are treated as though they're stupid. Paul and many others—and Janet also—mentioned good practice in some areas. We must have a national strategy here. We have talked too much over the years about good practice here and there; we now need a national approach. Things shouldn't rely on individuals or individual organisations. 

Jenny Rathbone mentioned the need for more research—in this case, into air pollution and junk food. I can only give anecdotal evidence here, but out of three siblings, my father and his sister who lived throughout their lives in Cardiff had dementia, and their elder sister who is nearing 90 now and lived most of her life in a rural location did not. I think there's something in it, Jenny, in the link with air pollution, and it's something that needs to be looked into. 

Again, respite should not be dependent on the kindness of individuals or the work of some organisations; we need a national approach. Peredur said that the situation will only be getting worse. It's true. We need to do things right now. Adam Price, who also comes to this from a personal perspective, put a free national social care system at the heart of the Plaid Cymru manifesto. I hope other parties will do the same. That is what we need. Altaf Hussain again mentioned the need for research, and the need for quality of life. Dementia should not signal the end of a good-quality life. People can still have a good life with dementia. 

Jane Dodds paid tribute to the carers who assisted her parents. I can also attest to that, Jane. The work that they've done, especially during this pandemic, has been absolutely incredible, and they need to be valued so much more. You mentioned loneliness, and that is so true of the sufferer and also the unpaid carer—the wife, or the husband, or the child. They often feel lonely, they often feel, as Sioned mentioned, vulnerable without any support. Mark Isherwood, in his helpful intervention, again mentioned good practice in other locations, but that's not good enough, is it? It's not good enough.

Delyth mentioned the frustration and the loneliness, about not being able to do what they used to do. Yes, I saw that frustration, I experienced that frustration. She mentioned her mother singing; I can well remember my grandmother singing Welsh hymns well into the advancement of her dementia, and reciting like the old lady in Wythnos yng Nghymru Fydd psalm 23, 

'The Lord is my shepherd, I shall not want.'

Sioned Williams, it's true that there is huge pressure on people like your mother as she cared for your father. I remember reading a diagnosis letter for my father in 2013, and I had no idea what the future held. And that's entirely true; you are entirely right that nothing prepares you for life with dementia. We need early support, and we need to increase capacity, as you said, Sioned, in order to create that. 

Can the Minister, in the future, outline to us how she will address this, the increase in the capacity and the calls by the Royal College of Psychiatrists for this to be done? I am glad that the unique work in Wales aiding early dementia diagnosis is being spread out nationally. I'd like to know when that will take place. 

As mentioned by Sioned and by Luke, charities like the Alzheimer's Society would welcome further detail, would welcome the national dementia data. It's incredible that, in 2021, we don't have basic answers to basic questions about dementia, like how many people live with dementia, how many people provide unpaid care for people with dementia, how can these people be supported, how many people are diagnosed with different forms of dementia, how many people have early onset dementia, as Altaf hinted in his speech. These are basic answers, and we need to develop a plan for the future—an accurate plan, an evidenced plan, and a long-term plan. Unfortunately, as one who has experienced three grandparents, my father, and his sister with dementia, I can tell you, Dirprwy Lywydd, as Luke Fletcher stressed, that every case is completely different. We need a truly person-centred approach to this for policy making in Wales. To do that, we need as much data as possible.

Dirprwy Weinidog, I am pleased that you are in this role; more pleased than you can ever imagine, genuinely pleased, because I know for you, like others, this is personal, and there's drive behind what you're doing. I look forward to working closely with you, Luke and others within this Chamber to tackle this important issue, because truly, this needs cross-party co-operation, and it needs action now.

Because this is the forgotten sector, the care sector—defunded, undervalued, and its workforce and the carers being underpaid. As Members of the Welsh Parliament, we must send a clear message to people out there today. What's the purpose of us otherwise, unless we can tell families, carers, residents in care homes and everyone living with dementia that we are going to change things, that we are listening to you, and that we are willing to take action on your behalves? Too many Governments, here and in Westminster, and of different political hues, have neglected this important issue for too long. They've cast it to one side, kicked it into the long grass. I made a similar pledge to Sioned in speaking to Beti George and she regularly gets in touch to ensure that we're doing something. We have to take action now for people like Sioned's mother, for people like my mother, and for people like Beti George and those who they cared for, for the families represented here today and for families the length and breadth of Wales. Today, friends, we remember that forgotten sector, and we will take action on their behalves. Thank you.

The proposal is to agree the motion. Does any Member object? [Objection.] I will defer voting on the motion until voting time.

Voting deferred until voting time.