Dementia Fund debate in Parliament: What was said?

Our campaigners visited Parliament last week for a 90-minute debate on improving the lives of people living with dementia. Read what was said and what it means for our campaign to Fix Dementia Care.

Last week (25 June), Debbie Abrahams MP led a 90-minute Westminster Hall debate titled ‘Improving the lives of people with dementia’. MPs from across most political parties attended the debate, which was great to see. 

We briefed all MPs with the key arguments of our Fix Dementia Care campaign, and many of them spoke positively of our campaigns and programmes – particularly of Dementia Friends and the Dementia Fund

Hilary, Tony and Pat

Hilary, Debbie Abrahams MP, Tony and Pat at Westminister Hall.

Our campaigners visit Parliament 

Three of our campaigners also came along to watch the debate: Hilary and Tony, who are both living with dementia and Pat, who is married to Tony. The group found it positive to hear MPs giving attention to dementia and considering the issues experienced by people living with the condition. They also met with Debbie Abrahams MP beforehand to talk to her about their experiences living with and caring for someone with dementia. 

'The debate was an extremely valuable introduction to all the work which is being done by various people and projects, which give us hope that in the future [dementia] will be dealt with more speedily and accurately.' - Tony

You can see a video of Tony speaking about the day below. 

What was said during the debate?

In the debate, we secured a new commitment from the Labour Party front bench in support of the Dementia Fund. 

Julie Cooper, Shadow Minister for Health and Social Care, called for the Government to 'Introduce a dedicated £2.4bn Dementia Fund to cover the additional cost of delivering specialist dementia care and end the inequity that currently leaves families affected facing astronomical care costs'. It is fantastic to hear our call for a Dementia Fund championed in parliament.

In response to the points made by MPs, Minister for Care, Caroline Dinenage, confirmed that she will push for dementia to remain a priority. She reiterated the Government’s commitment to publishing the adult social care Green Paper at the earliest opportunity. She also said that more short-term social care funding will be agreed alongside the rest of the local government settlement in the forthcoming spending review, which is now likely to happen next year.

Gaining momentum

It is encouraging to hear dementia being discussed in parliament, particularly in relation to our campaign work and calls for a Dementia Fund.

We were also pleased to be able to accompany some of our campaigners to watch the debate, and see some results from their campaigning work. The more MPs hear about dementia and the issues associated with it from their constituents, the more difference we can make. 

Together, we will Fix Dementia Care.

Stand with us to Fix Dementia Care

If you would like to join Hilary, Tony and Pat and stand with us to Fix Dementia Care, you can help make the Dementia Fund a reality by signing a public letter to the future Prime Minister. 

Sign now
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13 comments

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"Caroline Dinenage, confirmed that she will push for dementia to remain a priority. She reiterated the Government’s commitment to publishing the adult social care Green Paper at the earliest opportunity".

Did her tongue get stuck to her cheek? Only that Green paper was due at least two years ago.

The green paper will be kicked into the long grass once again. This government is not the least bit interested in dementia care and leave us, the carers to pick up pieces and carry on subsidising the dementia care in the community and in the care homes.

1 End the iniquity whereby self-founders subsudize Council claimants. We should ALL be subsidising those who can't pay.
2 End the worry that the surviving spouse may have to move out of the family home when savings for care are exhausted. 3Cut income tax paid by those who need dementia care.

I would be pleased to sign the letter if I am able to see it, and agree with it.
It is not good practice to sign anything without being able to read it first.
Alzheimers.org.uk should NOT be encouraging bad practice.

Alzheimer’s organisers should be scrupulous when asking for support if it is to keep respect and gain support for their essential work.
I have been diagnosed with the early stages of Alzheimer’s which was a great shock, I thought my memory was just not as good as it used to be after all I am nearly 80!

I hope you will treat my comment as a suggestion for supporting your efforts.
I want to see you succeed in your endeavours, for the sake of ALL affected by this disease?

I look forward to your reply.
With my best wishes and thanks for all you have done and continue to do to support those of us afflicted by Alzheimers.

I am afraid it is not just this government. New Labour walked on by in office and what exactly did the Liberals do in five years. Anyone any real idea what they are both promising right now, as opposed to the likely nothing they will actually do.

I use to think we lived in a decent country but my crash course involvement with Dementia, in a caring role, has cut back all the warm word rubbish and exposed a system of virtual total disregard. There is just total disconnect between the political class and the concerns of ordinary people. Same on climate change. All the words on getting to zero carbon emissions, yet at the same time a third run way at Heathrow.

I do not some soft, must not upset anyone, etc, but what happened to leadership in this country. In 40 adult years it has just got worse and worse. Finally remember we are talking about a Green Paper not a definitive White paper. Steady on Caroline no rush. People are only suffering who have done nothing to deserve such treatment.

My mother has had dementia for 5years . She has had multiple strokes and TIA’s . She has been paying £1250 per week for nursing care for the last 2 years , She had no savings so we had to sell her small 2 bed ex council house that our parents worked hard to pay for am maintain . Dad died when he was 65yrs old .... I would like late stage dementia to be more visible on tv to show what it is really like , Its fine to watch programmes about people living with the disease , joining choirs and running resteraunts but later stage is totally different and they need nursing care but NHS won’t class it as an illness so it’s passed over to social care which is means tested . If my mother was just old she would still be living in her own home and she could be cared for by myself but it got impossible due to my other family careing responsibilities, doctors at the hospital said she definitely needed to be in a nursing home as she neede to be hoisted. She cannot walk, talk, feed herself , We have tried three times for NHS Continuing Healthcare but was turned down . Mum doesn’t know us or anything that is happening around her ....£90000 of her money has gone all ready. So not much left now and we don’t know if the home she is in will keep her there . I really wonder if the goverment really understand late stage dementia .

My mother has had dementia for 5years . She has had multiple strokes and TIA’s . She has been paying £1250 per week for nursing care for the last 2 years , She had no savings so we had to sell her small 2 bed ex council house that our parents worked hard to pay for am maintain . Dad died when he was 65yrs old .... I would like late stage dementia to be more visible on tv to show what it is really like , Its fine to watch programmes about people living with the disease , joining choirs and running resteraunts but later stage is totally different and they need nursing care but NHS won’t class it as an illness so it’s passed over to social care which is means tested . If my mother was just old she would still be living in her own home and she could be cared for by myself but it got impossible due to my other family careing responsibilities, doctors at the hospital said she definitely needed to be in a nursing home as she neede to be hoisted. She cannot walk, talk, feed herself , she is doubly incontentment We have tried three times for NHS Continuing Healthcare but was turned down . Mum doesn’t know us or anything that is happening around her ....£90000 of her money has gone all ready. So not much left now and we don’t know if the home she is in will keep her there . I really wonder if the goverment really understand late stage dementia .

People with terminal cancer dont pay gor care . My mum has vascular dementoa whoch is terminal has to pay 550.00 a week for cate . Why ?????????

Unfortunately I don't think parliament will do anything. Dementia needs to have a much higher profile, earlier diagnosis and understanding of the general population before anything changes.

I,ve read all the comments so far, from all those who have to pay for the nursing home care, or home care, for their relatives with dementia, when other illnesses are treated by the NHS for free, as most would expect. My husband was hospitalised after i had cared for him on my own for 4 years, at home. He no longer recognised me or our children and had hallucinations and falls in our home. A TIA took him to hospital for 7 weeks. That is when he had his first assessment, after the doctors had told me he needed 24 hour care and that i was not able to care for him safely. They asked me to find a nursing home, but said that might be difficult as many homes did not take advanced dementia patients. Two nurses came to carry out an assessment for NHS Continuing healthcare. I had Power of Attorney over my husband's health and welfare and his finances, but i was not initially involved in this assessment. Having read leaflets from Alzheimers Society about NHS assessments i asked them to start the process again with me present. They did so, but the Full NHS funding was refused. He was allowed about £110 per week for nursing costs, out of a weekly nursing home fee of £950 per week. He went into a nursing home that i found for him and more NHS full care assessments followed at intervals, whilst my husbands life savings dissapeared,,like everyone elses in these comments. I began to research the whole NHS assessment process, starting from the information that AS publish. This enabled me to obtain all the NHS documents which contain guidelines for the assessors who carry out these assessments on our ill relatives. This reseach enabled me to challenge the assessors at the next assessment on their scoring of my husband's assessment. It also showed up the fact that the assessors were not following all the Govt guidelines in making my husband's assessment. As a result, i got full NHS funding for the remaining period of his life. I didn't appeal the earlier refusals as i was mentally exhausted. Despite the grant of full funding the regular re-assessment of my husband took place during his last two years of life. It is the Assessment process for Full NHS Funding that is the cause of all this distress and pressure on the families of dying individuals . Families in this position are mostly unable to challenge the process as it is couched in healthcare terms and uses diifficult concepts for lay people to deal with. Even my own GP asked me for advice on how to help one of his parents under the assessment process. The assessments are also carried out by some assessors, not all, who either ignore or do not know about the Govt guidelines. Get rid of these assessments and treat all those with dementia as ill people in need of NHS funding from the beginning. Save all the money by doing away with the conslderable administration units that have to carry out these tests on our ill relatives and which put pressure and strain on the families struggling to pay for private care fees!! However, like many other comment makers, i have no faith that my Tory MP is the least bit interested in this subject as he has never been heard or seen to mention it in his speeches or newspaper articles.

There are so many things that have already been stated which I totally agree with. The funding, the support etc etc. My husband has had mixed dementia for 7 years and I'm his sole carer. No support really and even our doctors surgery is a complete joke. The only improvement I've seen over the years is that people are aware of dementia now. I'm not sure that many of them fully understand what it entails on a daily basis though. But as for social care, funding of any sort, and support I find it all sadly lacking.
The other thing that worries me is that dementia is not always being quoted on death certificates. Even our own doctor told me that you didn't did from it.

Margaret Humphreys can you give us all the answer we are looking for. What are the Assessments not following, what are they doing wrong re scoring etc
We all are fighting for our loved ones

Margaret Humphrey’s
Please help us all. How did you win CHC

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