Dementia Care

Caroline Voaden Excerpts

Tuesday 3rd June 2025 Commons Chamber

[Caroline Voaden (South Devon) (LD)]

I beg to move,

That this House has considered dementia care.

I thank the Backbench Business Committee for granting time for this important debate and Members for supporting it, as well as the charities and organisations that have provided material. Dementia is undoubtedly one of the most urgent health and care challenges facing our society, and I know that most of us in this Chamber will know someone affected by it. My family is currently battling it on two fronts. My confident, witty, generous father-in-law is now almost unrecognisable as the man he used to be. He is lucky to be living in a lovely care home where he receives the best care possible, but the decision to move him there was heartbreaking. My brilliant, funny cousin, always the life and soul of family parties, was diagnosed far too early with frontotemporal dementia, which is likely to affect her ability to communicate over time—a particularly cruel diagnosis for someone so young. Watching people we love become confused by the world around them, unable to communicate and fading away from us while so physically present is heart-wrenching. Dementia has to be one of the cruellest conditions for those afflicted and for those supporting them.

As we are neatly placed between Dementia Week and Carers Week, it is fitting that we should discuss this condition with which 900,000 people in the UK are living, most over the age of 65. Dementia is now the leading cause of death in the UK, and while its scale is national, its impact is deeply local and personal. It is already widespread as our population ages, and that number is expected to rise sharply. According to NHS England, one in 11 people over the age of 65 has dementia, and that rises to one in six for those over 80. In Devon, which has one of the oldest populations in England, this issue is not just coming; it is already here. Unless we act now to improve diagnosis, care and support, we will fail tens of thousands of families in our communities.

A timely diagnosis is not just about putting a name to a condition; it is also the essential first step towards accessing care, planning for the future and, increasingly, receiving treatment. New disease-modifying drugs for Alzheimer’s offer real hope, but only if the disease is caught early and diagnosed accurately. In October 2023, the all-party parliamentary group on dementia published a report highlighting the significant regional disparities in dementia diagnosis across England. The findings were stark. While Stoke-on-Trent had the highest diagnosis rate, at 90%, the South Hams—much of which lies in my constituency of South Devon—had the lowest rate nationally, at just 44%.

[Rebecca Smith (South West Devon) (Con)]

As a fellow South Hams representative, I wonder whether the hon. Lady would agree that the Government’s lack of focus and targets for dementia diagnosis is having a particular impact on rural constituencies such as ours, given that treatment is so dependent on diagnosis. Does she also agree that the work of local groups such as the Dementia Friendly Parishes around the Yealm is going to be vital to increasing diagnosis in our communities in Devon?

[Caroline Voaden]

I thank the hon. Member for her contribution, and I agree that community groups such as the one around the Yealm are vital in caring for people with dementia.

Devon as a whole is falling worryingly behind. As of March 2025, our county’s dementia diagnosis rate stands well below the national average, placing Devon 39th out of 42 NHS systems in England. At the same time, demand for services is increasing sharply. Referrals to the Devon memory service have surged by 94% of the past five years, yet no additional investment has been made to meet this rising need. In Torbay the pressure is especially acute, with some individuals now waiting up to 20 weeks for an assessment.

A diagnosis can change lives. It provides clarity, access to support and the opportunity to plan for the future. It has proven to help people live well with dementia, but without investment people are being locked out of vital services, including support groups. One local dementia charity told me:

“Until there is a formal diagnosis, patients and their families cannot access our Memory Cafes, as our funding requires a confirmed diagnosis to provide support.”

I know from family members that this kind of support can make a world of difference, giving carers contact with others who truly understand the pressures and strain of caring for a much-loved relative who is slowly but surely losing themselves to this awful condition.

[Liam Conlon (Beckenham and Penge) (Lab)]

The hon. Member speaks about community groups and their importance. In recent months I have had the pleasure of joining and supporting lots of dementia support groups, including South East London Mind’s young onset dementia activists group, Beckenham dementia café, and Beckenham and Penge dementia café, and Angela from Bromley Dementia Friendly Community. Will she join me in acknowledging the incredible acts of kindness that such groups do every single day, so often motivated by their personal experiences of dementia?

[Caroline Voaden]

I absolutely commend all those groups—the hon. Member is lucky to have so many in his constituency.

Like many other diagnoses that can be equally shocking to receive, dementia has no cure. Approved medications offer limited benefit only in the early stages and not for everyone. For those in the moderate to late stages, the most effective treatments are access to information to navigate the social care system and good-quality care. That means personalised, respectful and consistent support not only for the individual but for their family too, and that family support is critical. Across Devon and beyond, unpaid carers bear the overwhelming weight of responsibility. There is a physical, financial and emotional toll from the moment of diagnosis, yet respite support is sparse and, in many places, non-existent.

[Paulette Hamilton (Birmingham Erdington) (Lab)]

I share the hon. Member’s deep commitment to ensuring quality care within our communities—something I saw at first hand last year during my visit to Warren Farm Lodge care home in Kingstanding. The dedication of the staff left a lasting impression. Does she agree that we need to work with the Government to urgently develop a blueprint for transforming dementia diagnosis?

[Caroline Voaden]

The hon. Member has beaten me to it—I absolutely agree.

The lack of respite support is pushing carers into crisis, and when that happens the result is clear: faster entry into long-term care, increased hospital admissions, more GP appointments and distress for everyone involved.

[Peter Swallow (Bracknell) (Lab)]

The hon. Member is absolutely right that respite care is important. In my constituency, Sandhurst day centre offers fantastic respite care, allowing people with dementia to stay as active and as social as possible for as long as possible, which we know also keeps people out of hospital for longer. Does she agree that we need to see more support for day centres such as Sandhurst day centre?

[Caroline Voaden]

I could not agree more—I am sure I will agree with most of the interventions in this debate.

This does not have to be the outcome. We know that with the right support at the right time, people can live well with dementia at home, and that reduces pressure on services and improves quality of life.

[Warinder Juss (Wolverhampton West) (Lab)]

One in four hospital beds are occupied by someone living with dementia, and there is a 50% higher hospital readmissions rate for those who have dementia than the general population, with one in three people living with the condition never receiving a diagnosis. Does the hon. Member agree that the key is to get that early diagnosis, so that help and support can come in early, which will have better prospects for the individual and their families?

[Caroline Voaden]

I absolutely agree that early diagnosis is one of the key things that makes a difference to anyone living with dementia.

We talk a lot about social care in this place, and the Liberal Democrats have championed the cause of carers—those thousands of people who quietly and lovingly dedicate themselves to caring for someone they love, often someone suffering from dementia. These carers are, because of the nature of this disease, often elderly themselves and, because of a postcode lottery, are sometimes left to just get on with it themselves without the vital support and advice that they so desperately need.

[Anna Dixon (Shipley) (Lab)]

I echo the hon. Lady’s comments about the vital role that family carers and unpaid carers play in enabling people with dementia to live well at home. Does she agree that, in addition to formal respite care, community support from groups in my constituency such as the Wrose Dementia Friendly Community Support Group and Shipley Memories Group is vital to give carers little breaks, when they have an opportunity to get out of the house and meet other carers like them?

[Caroline Voaden]

Having regular, small chunks of respite is absolutely vital for carers.

[Sonia Kumar (Dudley) (Lab)]

A constituent has written to me to tell me the story of her mother, who was diagnosed with dementia in 2020. Her father was 86 and the primary carer. They spent over £7,000 on five weeks of respite. Does the hon. Member agree that we need to expand respite centres, day centres and home care to ensure that families are not left by themselves?

[Caroline Voaden]

I could not agree more. If we had little chunks of regular respite care, people would not end up having to pay for several weeks, just to recover from the care that they are providing.

There are some brilliant projects working to support families afflicted by dementia, and several of them have been mentioned already. One of the most inspiring examples that I have seen is the Filo Project, a community interest company that offers dementia support in Devon, Cornwall, Somerset and east Lancashire, and which has recently expanded to Bournemouth. The Filo Project takes its name from the pastry, referring to the many layers that make up a personality—the layers that are cruelly and silently stripped away by dementia. The project provides high-quality, community-based day care for people with early to moderate dementia, and what makes it so powerful is its simple approach: small, weekly group support in the home of a host, where people with dementia spend the day receiving the attention, care and companionship they need. That not only helps them, but provides their families with regular and crucial respite and support. I commend founders Libby Price and Dr Liz Dennis, who I believe is in the Gallery today. It is a model that works, and it has made a tangible difference to many families.

There is a critical need for more community-based initiatives such as the Filo Project, and one of my direct asks of the Minister today is that VAT be removed from such services. Although dementia patients can access goods and services exempt from VAT, they have to pay it on the care provided by the Filo Project and others like it. Families supported by the project have paid more than £700,000 in VAT for care since the group was set up 10 years ago, and the extra cost restricts who can afford to take part, so I urge the Minister to remove this burden. While the Government are facing mounting pressures from all sides to find additional funding, it is worth noting that investing in community-based projects is a fraction of the cost of the NHS, yet the impact is transformational, benefiting families across the country and ultimately saving money.

[Mrs Sureena Brackenridge (Wolverhampton North East) (Lab)]

Like every Member here, I have many constituents who have explained that navigating such a complex web of health and social care services is absolutely exhausting. For many families, it leads to crisis before help arrives. Will the hon. Member join me in calling on the Government to tackle the delays and disparities in dementia diagnosis, and to ensure that there is investment in diagnostic capacity, including the fantastic memory clinics that hon. Members have spoken about today?

[Caroline Voaden]

I absolutely agree.

In 2023, Devon saw the closure of its dementia advice service after 10 years because of a cut in funding under the previous Government—a decision that left a significant gap in community support across the county. The service offered vital information, practical advice, and tips and strategies on coping with dementia, as well as signposting to legal and financial support, and the closure was a blow to many families already struggling to cope. It is a scandal that Devon’s integrated care board has neglected older adults by cutting a service that was designed to prevent early care home and hospital admission, and to ease pressure on primary care.

However, there is hope on the horizon. Devon has recently developed a new countywide Devon dementia strategy, which aims to bring about real and meaningful change for those living with dementia and their loved ones. Written in collaboration with over 40 organisations, it sets out what is needed in dementia care today and for the foreseeable future, and I commend them for their work. This strategy is vital, and so is the funding to support the measures it highlights. Dementia prevalence in the area covered by Devon’s ICB is expected to rise by 54% between 2023 and 2040, and by then, over 33,700 people in Devon will be living with dementia. Now is the moment to act, to ensure that this strategy is not just a document that sits on a shelf but becomes a driving force for better services, earlier diagnosis and more consistent support.

I would like to briefly share the story of one of my constituents, Michael, to illustrate why this is so urgent. Michael’s wife began showing signs of dementia six years ago and was diagnosed with moderate to severe Alzheimer’s nearly five years ago. As her symptoms worsened, her condition became more difficult to manage, and she was eventually sectioned as being a danger to herself. At that point, the NHS took over her care, and she is now in a home where she is receiving very good care. Michael has nothing but praise for his GP, the older people’s mental health team and his local hospital for their support. However, his experience has highlighted critical gaps in the system. He recalls the complete lack of day care facilities to provide respite before his wife went to hospital and the overstretched system that was unable to assess people quickly or provide necessary help, either at home or in day care.

[Ben Coleman (Chelsea and Fulham) (Lab)]

I am most grateful to the hon. Member for leading this debate so effectively and raising these important issues. She will be aware that three in four dementia carers have no alternative plans in place if they are unable to provide care. Many of them are terrified about what will happen to their loved ones if they are no longer there to provide care, and nine in 10 have already reached crisis point, with burnout and depression. Does she agree that dementia carers need to be fully supported to put alternative care arrangements in place? May I urge the Minister to implement a carers strategy that sets out carers’ rights and what support carers should receive when it comes to alternative provision?

[Caroline Voaden]

So many thousands of people are doing this care for free, at home, living under this burden and worrying about what will happen if they are no longer there. They deserve recognition and help to put those plans in place, in case something happens to them—that is crucial.

For many families, accessing respite care is a huge challenge. Caring for someone with dementia is often a 24/7 job and is utterly exhausting, yet unpaid carers like Michael are saving the country billions of pounds and are often doing so without the support they need. Michael echoes the calls I have heard in my own family for the Government to do more to support carers by ensuring they have access to regular respite care. We must also urgently examine the funding and availability of care homes that can support high-needs dementia patients.

[Patricia Ferguson (Glasgow West) (Lab)]

I thank the hon. Member for taking so many interventions; it is very welcome. As she will be aware, health is devolved to the Scottish Government, and we Scots have a slightly different system. However, Alzheimer Scotland has called on the Scottish Government to commit to recognising that the needs of people with advanced dementia are healthcare needs and to ensure equality of access to appropriate health and nursing care that is free at the point of delivery, regardless of our geography. Does she agree that that is what we all want for our loved ones?

[Caroline Voaden]

There is a lack of equity, is there not? I looked at Hansard, and dementia has been mentioned 192 times since the general election last year, but cancer has been mentioned nearly 1,000 times—we have spoken about cancer five times more than we have about dementia. That shines a light on what a hidden problem it is, and yet it is not hidden, because we all have experience of it.

We must urgently examine the funding and availability of care homes and find a way to reduce the staggering costs, which can cripple family finances and local authority budgets. House of Commons Library research commissioned by the Liberal Democrats has shown that the cost of care in nursing homes increased by 61% from 2015 to 2022. That is why the Liberal Democrats are calling for the introduction of free personal care in England, based on the model introduced by the party in government in Scotland in 2002, so that provision is based on need, not ability to pay.

[Shockat Adam (Leicester South) (Ind)]

The hon. Member is being extremely generous with her time. Is she concerned, along with the Alzheimer’s Society, that more than 71% of carers for people with dementia have no formal training whatsoever, although dementia requires very specific care and training? Will she join me in calling on the Government to introduce mandatory training for all those who care for our loved ones with dementia?

[Caroline Voaden]

I thank the hon. Member for his intervention—I have not quite got there yet, but it is in my speech. We are also calling for a cross-party commission to form a long-term agreement on sustainable funding for social care in England.

Last week I met journalist John Suchet, whose wife Bonnie died of dementia. He is now married to Nula, who lost her husband James to a rare form of dementia known as Pick’s disease, diagnosed when he was just 57. John and Nula met in the care home where they were supporting their partners. They supported each other along a terrible journey and have both since written books about their experience. In Nula’s book she says:

“Dementia, dementia, what is it? I still know very little. All I know is, it’s a bloody cruel, sadistic disease, that has demolished my hopes, plans and dreams. It has taken away my life, twisted it and mangled it, and so it can claim another victim—two for the price of one…With absolutely no professional support—no-one at all monitoring his or my journey as they would, for instance, a cancer or Parkinson’s patient. I am entirely alone.”

It should not and must not be like that for the carers who give up everything to look after someone they love.

This is where the Government must step in. We need a clear strategy to support people with dementia and their families at every stage. That starts with an urgent review of NHS continuing healthcare, so that dementia-specific needs, especially cognitive and behavioural needs, are properly recognised, with specialists involved in assessments. No one should face dementia alone. Families must have access to a specialist dementia nurse, regular health and wellbeing reviews, and co-ordinated, joined-up care. We also need a national framework for young onset dementia, ensuring timely diagnosis, tailored support, and fair access to care. To relieve pressure on hospitals, every NHS acute trust should have a specialist dementia nurse service, backed by ringfenced funding.

Investing in dementia support will clearly save the NHS money in the long term. I am sure the Minister knows these statistics, but I will read them out: people with dementia visit the GP three times more often than someone without dementia; 25% of people with dementia living in their own homes are admitted to hospital with a potentially treatable condition; 25% of hospital beds are occupied by people with dementia, and they stay in hospital twice as long as other people aged over 65; and 43% of people with dementia in hospital are there due to urinary tract and chest infections, both of which are treatable at home.

A voluntary, community and social enterprise response to the closure of the Devon adviser service showed that dementia support workers are cost-effective, and that every £1 invested in dementia support worker roles results in almost £4-worth of benefits. Compare that with the cost of a hospital stay. Over 85% of dementia patients with a hip fracture stay for up to 14 days, and 34% for over a month, despite the national average length of stay being just seven days. The extra cost is estimated at around £6,000 per patient. The Alzheimer’s Society said between 2015 and 2020,

“almost 336,000 admissions costing almost £1 billion to the NHS were for chest infections, delirium, falls and UTIs, all of which can be prevented or managed well in the community.”

Clearly, this is a strong case for invest to save.

Clinical care must go hand in hand with long overdue social care reform. The Liberal Democrats are calling for a comprehensive social care workforce plan, the creation of a royal college of care workers, and a higher carer’s minimum wage to reflect the value of this essential work. Unpaid carers also need support, with paid leave, respite breaks, and proper recognition. Finally, we must expand dementia training across the sector, backed by a national care agency to uphold standards and register care workers. The Care Quality Commission has just published a report that underlines the importance of reform. Its findings were alarming, confirming that health and social care staff frequently lack understanding about the specific needs of dementia patients. The Alzheimer’s Society estimates that only 29% of paid carers have training in dementia.

Dementia is a growing issue and the system is already under strain. Right now, approximately 30% of general hospital beds in Devon are occupied by people with dementia, many of whom are there because of preventable conditions. A sustainable strategy for dementia care must focus on community-based support, early diagnosis, carer support and workforce training. That is not only the right thing to do; it will save money in the long run. It is time that we treated dementia care not as a burden, but as a vital part of building a compassionate and sustainable future for everyone affected.

--- Later in debate ---

[Caroline Voaden]

I do not think there is much to add, but I want to thank all the Members who have come here today and shared their personal experiences of dementia affecting family members and loved ones. I know it is not an easy thing to do, and we all have really difficult experiences. It has been very moving to hear those personal stories. We have a Minister who deeply feels these issues and understands what dementia means and the impact on the wider family.

I would like to see properly trained dementia nurses in every GP surgery and acute hospital trust in this country, so that we can keep these people at home, look after them, look after their carers, and support the people who love them and do an incredible job. I pay tribute to the hundreds of organisations all over the country that are doing amazing work, many of them on a voluntary basis.

Question put and agreed to.

Resolved,

That this House has considered dementia care.

[Debbie Abrahams]

On a point of order, Madam Deputy Speaker. In his response to my question about the dementia moonshot, I think the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), might have got his figures wrong. Could you advise me on how we can correct the record?