Championing the voices of people affected by dementia in Parliament and beyond – part 2

This year, we need to keep pushing forward, to make sure that the issues faced by the 850,000 people in the UK with dementia and their families cannot be ignored. Here is a look at our campaign plans in 2019.

In part one of this update we looked back on 2018, a busy year for our Fix Dementia Care campaign.

This year, with the unrelenting focus on Brexit, we will need to work even harder to keep the pressure up. People affected by dementia are spending everything they have on essential care. It will take bold reform to put an end to this unfairness.

This will be no mean feat – but with your support we have demonstrated the scale and urgency of this issue, and will continue to do so. 

A woman in a care home

Campaigning to fix dementia care in 2019

Green Paper on adult social care coming soon

Unfortunately, while the Government promised that the Green Paper on adult social care would be published last year, we have not yet seen it. The Government have said to expect publication by the end of this month. It has already been too long to wait for people who are spending all their savings on a care system that does not support their needs.

We will continue to work alongside our campaigners to keep the pressure on the Government. People affected by dementia use homecare and care homes more than anyone else.  We'll make sure the Government understand that it is vital that their plans consider people with dementia and their carers. 

NHS Long-Term Plan published

The NHS Long-Term Plan, which was published earlier this month, outlines plans for the NHS over the next 10 years. It has created a fantastic opportunity for the Government to address the issues faced by people with dementia. We were delighted to see our growing Dementia Connect service referenced, signifying the Government’s commitment to supporting people with dementia and their families following a diagnosis.

It is essential that dementia is given the same attention and resource as the other leading causes of death within the plan. We are not yet convinced this is the case from the initial document. This is, however, something that can be addressed in the approach and implementation of the plan. We will taking action to ensure the voices of people affected by dementia are listened to and acted upon.

How can you help?

We will continue to work to ensure the voices of people affected by dementia are heard at every level of Government and beyond. But, we can’t do it without your help. 

This year, in our packed political climate, it will be particularly hard to draw attention to our cause. With this in mind, we need to make sure the voices of people affected by dementia are louder than ever.

Fix Dementia Care

Join our campaign and help us create a social care system that works for the people who use it most.

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Add your own

I am a 56 yr old woman with the early onset of Vascular Dementia. It is very hard for me to get around, I have to use a taxi to make sure that I get to the right place. My memory is terrible & if I don't do what I'm thinking straight away it doesn't get done. Also I now need a walking stick because I keep falling over. I don't leave my house much anymore.

I (Tanya Turton) was diagnosed with Alzh. Dementia in Feb. 2016.My suggestion is that I f eel there is not enough information about the symptoms and "feelings" of those affected...The many leaflets and papers from Alzh. Soc. describe general statistics etc. BUT not the personal effects of the disease. I have had disturbing dreams but no mention if that is a side effect? To be suffered silently????. Alone?

I think it would be a good idea to keep Advertising on television more to make people aware of the problem of Dementia. We all work to better our lives. People who unfortunately get Dementia is a slient killer they dont know whats happening to them. Whats the point of working in life if its going to be taken away from them. There are people whom have saved their hard working money only to find out its all been taken away from them and nothing left to give to their family. Whats the point of saving. People with Dementia shouldn't have to sell their property. There should be more programmes on television to make people aware of Dementia and stand up for their rights. The younger generation should also be aware of whats happening it effects us all. My dad has Dementia and Alziiemers and partly sighted. He had to sell his own property to fund his care in a Dementia home all of his savings are nearly gone he is 91. Its heart breaking . Whats going to happen to him. The Government need to do something now.

I hope we also take this opportunity to press for greater support for YOUNGER PEOPLE WITH DEMENTIA. The total absence of age appropriate care and support for this group risks families losing not one, but two incomes - impacting the life chances of all family members including children.

Heard the good news today that someone who has followed my advice achieved NHS Continuing Healthcare funding for their Relative at an Appeal. Our Politicians could try & persuade NHS to be more sympathetic when faced with a Primary Health Need, & provide funding to achieve adequate Care when asked rather than forcing people to Appeal their decisions!
My help is on the website
Best wishes.
Peter Garside

I may have written this once before---but worth repeating!- I've received much interesting information from Alzheimer's Association. However- could you please include some on the characteristics, or feelings that people with dementia feel and/or experience. I was diagnosed with Alzh. Feb 2016. Have lost much memory, now have had halucinations, what else is common? I'd like to know what might be a "common"ill, that I might have??? Thank you! It would be good to know!

My darling husband was diagnosed with vascular dementia in 2005. Since then we have found ourselves having to pay for any sitters we had, for the daycare centre he went to etc and then when he had to go into care I realised that we still had to pay. Having worked hard all our lives we have lost all of our savings; I have had to downsize twice and now live in a small one bedroom flat. I am desperately trying to find a way to keep my husband in his care home once I can no longer afford the top up fees. All this on top of the normal emotional stress that carers feel as they loose their loved ones day by day. Everyone should be galvanised to change the current social care system to make the way people living with dementia are treated is fair and equitable. Free at the point if need! Financial advice should also be free and available so young people can organise their finances so that they don’t have to loose everything if they are diagnosed with dementia. This problem is not going to go away. It needs fixing. Fixing now

we have just been in a gruelling nearly 5 hour meeting for Nhs continuing health care funding . Mum has no understanding of whats going on .. she has severe dementia ..double incontenent, very little speech which is ineligible. she has to be fed and all personal hygiene done by at least 2 cares . she cant walk . We were turned down ?? .I do not know how anyone gets this funding ? I would like someone to read the questions and the tool decision and work out how it is worded as its the most confusing document I have ever read ? Mum has spent nearly all of her house money and savings on her care and she doesnt even know it ? there are other residents in the care nursing home that dont pay anything because of various rules that apply . Good luck to anyone trying to get through this maze . I would like also to see politicians really understand the late stages of dementia when the person is not here anymore and which can last for years .

Hi Tracy, I'm very sorry that you have had trouble with Continuing Care Funding. If you would like to talk to one of our advisers about it you can call us on 0300 222 11 22.

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