Dementia Care

Judith Cummins Excerpts

Tuesday 3rd June 2025 Commons Chamber

[Several hon. Members rose—]

[Madam Deputy Speaker (Judith Cummins)]

Order. I am now asking Members to speak for no longer than five minutes.

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[Victoria Collins (Harpenden and Berkhamsted) (LD)]

I start by thanking my hon. Friend the Member for South Devon (Caroline Voaden) for securing this debate. I also thank the many Members from all parts of the House who have shared passionate stories, either of their own or of constituents. Far too many people across the UK are living with dementia, a cruel and progressive condition that robs them of their memory, speech and independence. For every person with dementia, there is often a family doing everything they can behind closed doors to hold things together. I have heard from so many, and one of them is my constituent, Claire.

Claire describes her mother, Christine, as a vibrant and sociable woman. She was a devoted mother, a church flower arranger and a proud Harpenden resident of nearly 40 years. However, in her early 60s, Christine started showing signs of confusion, withdrawal and mood swings. Her family noticed something was off, but like so many others, they did not assume it was dementia. Even medical professionals overlooked these signs. Christine’s story took a devastating turn in 2018, just four weeks after her daughter Claire had given birth to twins.

At what should have been a joyful and tender time in their family’s life, Christine suffered a cardiac arrest. That moment plunged her into mid-stage vascular dementia, a terminal diagnosis with no treatment or cure. After Christine’s diagnosis, the family was visited by a nurse once and then told they were being discharged. They received no care plan nor long-term guidance. From then on, care fell entirely to the family. Claire’s dad, a retired engineer, became a full-time carer overnight. He learned to administer insulin and to manage medicine, and he joined online courses alongside his daughter.

Support for the family came when Dementia UK got involved in March 2020, and that was great, but unfortunately it was too late to change the trajectory and was tragically interrupted by the pandemic. Admiral nurses, who provide expert guidance for families such as Claire’s, could have made all the difference, but demand continues to outstrip supply.

Through it all, Claire created something positive. She saw at first hand the extraordinary power music had to reach her mum, even in the late stages of her dementia, so she set up Sing from the Heart, a community singalong in care settings and online for people with dementia. It was a real pleasure to visit them in the Willow Court care home and to hear Claire play along and the residents enjoying it. It is now a lasting tribute to her mother, who passed away in April last year, aged 73.

Alongside Sing from the Heart in Harpenden and Berkhamsted, we also have the memory café at Harpenden Trust and Open Door. There are so many volunteers, as mentioned today, working to give that care in the community. Everyone with dementia deserves high-quality care whenever they need it. The Liberal Democrats want everyone to be able to live independently and with dignity, and to receive any care they need in their home whenever possible. That is why we have routinely called on the Government to act now. Their decision to quietly drop cross-party talks on social care and push the delivery of the Casey commission’s recommendations to almost a decade away will leave many with dementia, and their families, paying the price. Do the Government accept that dementia care is in crisis, and will they now commit to better funding, so that families in this country do not go through the same hardships of receiving care as Claire and Christine?

[Madam Deputy Speaker (Judith Cummins)]

I now ask Members to keep their comments to no more than four minutes.

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[Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)]

I thank the hon. Member for South Devon (Caroline Voaden) for securing this important debate. We have heard many moving speeches this afternoon, and it has been a great honour to sit and listen to them.

We must remember that dementia is not a fact of life, or something that everyone must face as they get older. It is not inevitable as a part of ageing. Dementia is a disease— a dreadful disease at that. Some 1.5 million people will be living with dementia in this country by 2040, so let us treat dementia with the same seriousness that we treat all other deadly conditions. Let us not neglect dementia simply because it disproportionately affects older people.

At present, we have a fragmented and complex health system that does not provide a clear enough route for people with dementia. Let us improve specialist dementia support in hospitals and in the community. It is simply our duty to do so. The estimated economic impact of dementia in the UK last year was £42.5 billion. By contrast, we learned yesterday that the defence budget is £58 billion. It is suggested that, by 2040, the dementia budget will be £90 billion, so something must be done.

Improving the treatment of dementia in our communities and in primary care settings will certainly help to free up hospitals and care systems, because, as we have heard, people with dementia occupy a quarter of all the hospital beds in the country. Let us move dementia treatment into the communities, with specialist nurses in communities to ease the pressure. Dementia is not inevitable. We must be bold, optimistic and forward-thinking, and prepared to deploy radical advances in science to tackle the condition. Let us support our scientists and researchers as they strive to develop more effective treatments and make progress towards curing the disease.

Let us support research by enabling the NHS to empower its clinicians to conduct research and to use patient data. That would help to facilitate medical research and increase the number of clinical academics, whose number has been declining for much too long.

I was delighted to hear my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) talk about hearing loss. Many members will know that I am an ear, nose and throat surgeon. Hearing loss is absolutely central to the problem of people withdrawing from the society in which they live. The simple testing of hearing and the provision of hearing aids will do much to help. I urge Members of a certain age to consider having a hearing test.

I am interested to know what we can do with patient data. If researchers across the country ran studies on 67 million people, we would accelerate progress towards a cure. Artificial intelligence could be set to work analysing datasets and providing rich sources of longitudinal data to inform future research and cures. Artificial intelligence already models the folding of proteins that cause the disease, so to secure those benefits, let us do something about the collection of medical information, and let us prioritise openness by giving patients access to their medical records, allowing them to see how the information is being used to support the NHS. That is something we could do to help.

[Madam Deputy Speaker (Judith Cummins)]

I call the Liberal Democrat spokesperson.

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[Sarah Dyke]

My hon. Friend shares his experience of losing his father. I lost my father in the same way, and he too was a proud farming man. I want to raise an issue from a constituent who contacted me about her father James. He is currently alone in a room in a hospital, and he is scared to mix with other violent dementia patients. He wants to be at home, and the family want him to be at home, but there are barriers in social care in Somerset at the moment. Does my hon. Friend agree that dementia patients should be able to live independently at home, with dignity, and receive the care—

[Madam Deputy Speaker]

Order.

[Dr Chambers]

Yes, I agree that empowering people to live as independently as possible is hugely important.

For me, there was guilt—for many years actually. I felt guilty about the moments of resentment at how my job and career were affected, and for losing patience when faced with the anger of someone you are trying to care for. I remember that my dad did not really understand that all we were trying to do was help. I want to mention the very insightful piece of advice from the right hon. Member for Wetherby and Easingwold (Sir Alec Shelbrooke) not to argue with people who have dementia. I wish I had understood when we were caring for my father that there was no need to correct his current understanding of the world. My grandfather was born in 1870, and my father kept asking where he was. We tried to explain that he would have been aged 130 if he had still been alive, but I wonder why we had those discussions. That was a hugely important and emotive piece of advice.

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[Dr Chambers]

I remember trying to explain to my father about the sheepdog, which he loved to train but which he did not recognise as his own any more. That is unusual for a farmer. There was no need to have that discussion; it was heartbreaking. The dog loved my dad and dad not recognising him any more was very upsetting. This all still feels very raw, but as we have heard today, my story is not in any way unique. There are so many families in Winchester and around the country who are experiencing that similar, heartbreaking journey.

Caring for my father is one of the hardest things that my family has ever done. I pay tribute to my mother, who bore the brunt of caring for my father for many years; to my sister Irene, who helped hugely for years and years; to my cousin Patrick; and to our neighbours James and Deborah Hodgson—we could not have managed without them. However, especially nearer the end, we could not have done without the extraordinary support of the care workers who came to help on a regular basis. Their compassion, skill and dedication helped get us through some of the darkest days.

That dedication was extraordinary. Dad loved singing and one of our care workers had printed out some of the songs that he knew—some old Methodist hymns, “The Old Rugged Cross” and “Danny Boy”, which was his favourite song and the song that I am named after. He might not have remembered our dog, but he could remember every word of “Danny Boy” when he was singing it. The dedication of the care workers, to find out someone’s favourite song and then sing it with them, was quite extraordinary.

Care workers, who are vital and skilled, are often underpaid, undervalued and stretched beyond endurance. We just cannot allow that to continue. That is why the Liberal Democrats call for urgent and meaningful reform of social care—reform that starts with recognising and properly rewarding and supporting the workforce who underpin it. We have been calling for a national social care workforce plan—not for the can to be kicked further down the road, but a real plan to address recruitment, retention and training, with practical steps to fix the staffing crisis. We want to establish a royal college of care workers to give care professionals the recognition and career development that they deserve. I pay tribute to Liz Blacklock from Winchester, who runs Lapis Care based in Bishop’s Waltham, where I went on some visits a few weeks ago. Liz has long been calling for a formal register of care workers, which would be one of the functions of any new royal college of care workers.

Liberal Democrats also call for a national carers register, so that all unpaid family carers can be better supported, for example with statutory respite care. We also call for a higher carer’s minimum wage, because paying poverty wages for such emotionally and physically demanding work is not only unjust but short-sighted and drives burnout, turnover and, ultimately, worse care.

Let us be clear: dementia is not going away. One in three people born today will develop dementia. The hon. Member for Worthing West (Dr Cooper), with her public health experience, was insightful in her advice on how we can help to prevent it from developing.

The financial pressures on local authorities, driven in large part by adult social care, are among the most urgent political challenges of this decade. In Winchester, the Chesil Lodge day centre provides essential care for older adults, including those with dementia, and importantly provides respite care for family members. Hampshire county council is threatening to withdraw funding. That could overwhelm unpaid carers, forcing loved ones into residential care, which in the end will cost the council and taxpayers more.

With the political will, proper investment and genuine commitment to value and care work, we can build a system that supports people with dementia with dignity and gives their families the help and hope they so desperately need.

[Madam Deputy Speaker (Judith Cummins)]

I call the shadow Minister.

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[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?

[Madam Deputy Speaker (Judith Cummins)]

I thank the hon. Member for raising that point of order. It is not a matter for the Chair, but she has put her point on the record.