Dementia care needs fixing – and you can help

At Alzheimer’s Society, we believe that we must – and can – Fix Dementia Care. Sounds simple, doesn’t it? Three simple words but actually quite a daunting task.

You’ll have seen the stories in the news over the last few weeks about the enormous costs of care borne by people with dementia and their families. Our estimates put the figure at almost £15 billion over the last two years.

The money to pay usually comes out of the life savings of people living with dementia, the sale of treasured family homes and through families clubbing together to pay for the care their loved one needs, and deserves.

Daily Mail Friday 19th July 2019 Dementia Care front cover

Today's Daily Mail front page (Friday 19 July) highlights the appalling cost of dementia care.

For too long, the dementia care crisis has been hidden behind closed doors, lived by people who rarely have opportunities to be heard.

Highlighting the dementia care crisis

We are determined to bring these stories to decision-makers across the main political parties – and we recently did so by hosting a photo exhibition in Parliament, featuring the stories of 12 families affected by the dementia care crisis.

120 MPs attended the event, where they spoke with many of these families and took action in support of our campaign – strong evidence that we are building the cross-party support we need to tackle this problem.

We know that it means so much to people experiencing the difficulties of dementia care to have their stories told.

Sandra at home surrounded by paperwork

Sandra has not been told what will happen when her mum's savings run out.

Sandra, who was featured in the exhibition and whose mum, Jean, has Alzheimer’s, pointed this out after the event, saying:

“I was so pleased to be given the opportunity by Alzheimer’s Society to take my experience of the broken support system endured by my mum and myself directly to the MPs themselves, something I never thought I would be able to do. I hope this is the beginning of helping others who are facing the same challenges as ourselves.”

We also want to draw attention to these stories outside Parliament, and make sure that they get the media attention they deserve. The public needs to know about the challenges so many families face – and the families facing these impossible situations need to know that they are not alone.

The catastrophic cost of care

To that end, we have been working with the Daily Mail on their End the Dementia Care Cost Betrayal campaign. 

Every day we are contacted by people with dementia and their families who are struggling to access the care they need. They experience stress, anguish and exhaustion in fighting for appropriate support.

All too often, we hear of care that is of poor quality, or bureaucracies that stop people getting the care they need, and have to pay for at enormous – sometimes catastrophic – cost.

Our support of the Daily Mail’s campaign will ensure that we are shedding a light on these battles, which have been fought in private for far too long.

You can help fix dementia care

We want the public to know about the dementia care crisis, and we want them to take action.

You can help us by adding your name to our public letter to the new Prime Minister, demanding that dementia care is a priority for the Government. 

Tell the new Prime Minister that dementia care can't be ignored

We are standing with people affected by dementia by letting the new Prime Minister know that the dementia care crisis cannot be ignored any longer. Will you add your name to our letter to show your support?

Add your name
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108 comments

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It's sad that a person works all their life for a comfortable retirement only to get dementia which robs them of their faculties, then sufferers the indignity of the government robbing them of their wealth built up over 50/60 years paying taxes to the government purse ,then through no fault of their own end up with nothing,home sold,savings taken to fund care in homes, no Matter that taxes of thousands already paid by the individual.
Into the government's purse. The Government needs to wake up and tackle this degrading situation. Life does mean something.
If you've never worked you never paid taxes, but hey you get absolutely free care in a care home plus any expenses needed to fulfill that care,
Makes you think, be a lazy person all your life do nothing, get everything for free when you need help ,work hard pay your pay taxes buy yourself a good life and have it taken away when you need help,

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14

Yes so looking over all the comments on this blog it's what they all say that we work for a long time and get this bad thing and the government do nothing to help us at all they whant to see what they can take off us and save .They do not whant help us so if we die the is more money for them so they can get there big pensions and there big pay packets and there nice living and nice cars and there nice homes they have and the nice big holidays they have and some have got a nice hollydayhome they have got and if in low council tax they only pay the low one so what do we get off them not a lot they will take off us till the day we die

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13

In Scotland you get 30 Day Restbite free why not in the UK the careers need help

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18

My wife has been recently diagnosed as having "mild cognitive impairment" and is being monitored by her psychiatrist. As a family this situation has caused us to investigate how we should plan for the future should my wife's condition progress. This has led us to discovering how desperately managed Dementia is managed in the community. The most horrendous statement made in the literature we have seen so far is that if you have cancer and dementia you will be looked after but not if you suffer only Dementia your on your own.

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16

My lovely mum has Alzheimer's disease. I am sickened by the absence of help, support and care for people with this terrible illness and shocked by the injustice within the system. It is immoral. The party that stand up and tackle this issue get my vote.

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13

My mum has Alzheimer’s. At present she is cared for at home, she lives with my Dad. Luckily they moved into a bungalow the year before her diagnosis. My Dad has had 6 operations for cancer, which means I do a lot of the shopping, laundry and cleaning as well as taking them to all their appointments. I no longer work due to my own ill health. Apart from low level attendance allowance they get no other help either monitory or from carers. How much money are the many families like mine saving this country.

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17

My wife has vascular dementia. I alone take care of all her ever growing needs and I agree her illness is just as terrible as cancer and as such she should receive the same care under the N H S that other terminal patients get.

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18

Yes that's right we work a long time for our retiment and we are unlucky to get it and we what to have a good life what's left of it and then the government take it away from us .and they make us beg for what we should get and the bit of money we have saved for all our familys the government take back from us so the money we have put aside for them has gone back to them so we did we save for them at all.

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14

I find it difficult to understand why dementia is classed as a disease everywhere except social care. Housing off the agenda please, fair treatment.

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13

Ditto ditto ditto everything above - this cruel disease is robbing us of our parents / loved ones - if they had cancer everything would be free and the general public would not be able to say “quote and smugly - yes but they are completely ok upstairs ! Got all their marbles” -
as if there is a choice !!!

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12

Alzheimer's disease is increasing and covers a broad spectrum of the entire nation. Patients in hospitals who in addition have Dementia, are taking up beds that is needed for other illnesses and costs your government a drastic amount of cash. Research needs support to help to find a cure and consequently a reduction in the after care costs. thank you.

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14

Dementia is a disease that is increasing day by day. I am one of those whose spouse had this for 20 years up until her death from that disease 6 years ago. Many more persons of all ages have died since then and more diagnosed with it. Health Service needs to get on top of this and assist the research which will cut the future costs of hospital and care homes Please put at the top of your priority list and you will see a significant reward from the savings in after care.

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11

Please fix dementia care - this condition is challenging and worrying enough without having to worry about other things, such as losing your home!

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16

My mum didn’t have her own home , she was a council tenant. She was a single mum, bringing up two girls and worked full time until she retired. Not one did she claim benefits until she was unable to work anymore.
Now she is living in a care home. The council admittedly are paying half of the the £1000 per week fee.- but,, that isn’t enough . The rest has to be paid by me. I was about to retire myself , instead of that I’ve increased my days at work purely to cover her care costs.
What will happen if I become too old to work? !
This crisis is real, it needs sorting now!

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16

Yes let's have the health minister to a public meeting and let them see how it affects the person and there familys and then see how they do things

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18
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