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

As 2019 gets underway, our National Campaigns team will be working harder than ever to push forward dementia as a priority in Parliament. In the first of a two part update we round-up our campaigns work in 2018

In part two, we share our plans to make sure the voices of people with dementia are heard by decision-makers in the year ahead.

Our campaigns team

Our National Campaigns team had a busy but successful 2018, ensuring that dementia remains a political priority.

The team have been focusing on the Fix Dementia Care campaign. The campaign calls on the Government to address the issues with cost, quality and access faced by people with dementia in the care system.

Katie, Ele and Alia

Our campaigns team members, Alia, Katie and Ele.

How we campaigned to fix dementia care in 2018

We asked MPs to show their support

2018 began with a burst of activity from our campaigners, who asked their MPs to sign up to show their support for the Fix Dementia Care campaign.

With a Green Paper on care reform in the works, 150 MPs signed up to declare this as a key opportunity to make big decisions about how we care for older, vulnerable people.

We made lots of new Dementia Friends

We also spent the year making sure that Parliamentarians had a good understanding of what dementia is, and how it affects people. We held regular Dementia Friends sessions, with attendees including the Cabinet and Shadow Cabinet, Ministers across Government, and the Health and Social Care Select Committee.

Craig Tracey MP

Craig Tracey MP

We campaigned at Party Conferences

In September, we attended both Labour and Conservative party conferences. We ran a stand demonstrating the issues with care that people with dementia face every day.

We were accompanied by campaign volunteers Sandy, Tommy and Paul, who have each been affected by dementia. With them, we spoke to nearly 100 MPs, including the Prime Minister. We gained support for our campaign calls and made sure that they were fully understood by parliamentarians.

Conservative Party conference

Talking to Theresa May at the Conservative Party Conference

‘Care’ on the BBC sparked a national dementia care discussion

In December, the BBC aired the drama ‘Care’ starring Sheridan Smith and Alison Steadman. This gave us the opportunity to raise the profile of the issues at the heart of our Fix Dementia Care campaign to a wider audience.

The programme shone a light on how difficult and expensive it can be to access good care, and was viewed by thousands of people across the country.

We asked our campaigners to take action to ensure the specific needs of people with dementia are considered in the upcoming Green Paper. With the help of our campaigners, we made sure hundreds of people tweeted the Secretary of State for Health and Social Care, Matt Hancock. Thousands of supporters also emailed their local MPs. 

Making an impact

All the amazing things we have achieved with our campaigners in the last year have made sure that dementia has remained a key political issue.

Next year we will need to work even harder to keep the pressure up. We are looking forward to expanding our campaigns work to look at new issues, so keep an eye out for upcoming activity and new campaigns. 

Read part two - find out how we plan to make sure the voices of people with dementia are heard in 2019.

11 comments

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My best wishes to all those “angels” who give their time and kindness to people who, like myself, are living with Alzheimer’s.
Thank you all

THANK YOU FOR ALL THE INFORMATION THAT IS SENT TO ME
WHICH I AM HAPPY TO CIRCULATE TO SEVERAL GROUPS.
I BELONG TO A LADIES LUNCHEON CLUB IN DOVER AND WE HAVE INVITED A SERVICE MANAGER TO COME AND TALK TO OUR CLUB
OF 80 LADIES ON ALZEIMERS /DEMENTURE,TO INVITE OUR
MEMBERS TO BE MORE INFORMED WITH THE PROGRESS MADE
ON THIS SUBJECT.

Goverment NEED lesrn and understand this desise that strips people of there lives and dignity

It's took along time for all to get to this stage let's keep fighting for more aware Ness and let's hope the government starts to realise this is an illness and people out there still need help

I'm not sure if carers out there know.my husband has altzimers. I have an app on my phone and his called life360 it pinpoints where your partner is if he wanders off. It's a free app and very useful for people and carers to keep track of there loved ones.

my husband as Altzimers he 84 yrs old how and i am 77 yrs i am is wife i have be looking ofter my husband now over 4yrs now on my own but hnow how i can not show him and all as some think wrong with back and to pain full do it all on my own so can you tell me where to get some help as my husband gone right back to when he was kid he eats lots of sweets and he sleep lot now

Dear Jacqueline,
The first thing you need to do is see his/your GP & ask the GP to arrange for the Social services to visit you. Please do that immediately before you become ill yourself.
Also ring Age UK or Alzheimer’s society and ask for help. They should send someone to see you and your husband.

I can’t get retrospective payment for council tax as I was unaware of Attendance Allowance.I cared for my husband alone did not join clubs as I did not want him to realise his dementia. Wonderful Close loving years but it has left me both heartbroken and broke.Please give support and advice to new sufferers.

My husband has had dementia for five years I have looked After him myself day and night it is so very much hard work our life is very lonely l can not do or go any where he will not let me out of his sight.His tv music and iPad he has it very high shouts and gets very angry if the family come From a plasid man he has changed so much and his language is terrible he is not the man I met 48 years ago as much as I love him

Dear Pauline,
Thank you so much for your comment. We are so sorry to hear that things are so challenging for you both at the moment.

May we ask whether you are receiving any kind of help or support from social services? If not, it sounds like it would be a good idea to contact them and ask for a care needs assessment for your husband, and a carers assessment for yourself. If this has been done in the past, you can always ask for a reassessment and say that you both need more help. Here is a link for a directory of all social services departments in the country: https://adults.ccinform.co.uk/local-contacts-page/

Also, may we ask whether you are getting any help from us? Have you been in touch with your local office? Here's a link to our service finder. Just insert your postcode and you can see all the available services in your area: https://www.alzheimers.org.uk/find-support-near-you

Lastly, we would love to speak to you and have a chat about all of this. We are here 7 days a week, on 0300 222 1122. Please call us, or message us with your number and one of the team will get back to you. We look forward to hearing from you, please don’t go through it alone.

Best wishes,

Helpline team

My 97 year old mother has Alzheimer’s disease, which has progressed to the point that she no longer remembers how her TV or gas cooker works. She has one care visit a day, to make sure she has food with her meds. She has to pay for her care because she and her husband worked hard all their life and saved their money. The health service insist she is better off living in her own home, on her home. She is confused scared, and vulnerable to being fleeced out of what little income she has, because people that know Alzheimer’s know that she would have no recollection of how much she had or how much she should have left. She is also a risk to herself and her neighbours. She could easily set her house alight, kr even blow herself up if I had not disconnected her gad cooker. This is unacceptable. The u k has its priorities all wrong, it pays to keep the criminals iwarm safe and fed, with access to medics, dentists, and education. Yet it won’t take care of those that worked hard, pulled this country up by its boot straps after the last war, and steadfastly paid their dues.

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