Care Minister unites Parliament in the Dementia Friends Movement

Caroline Dinenage, Minister for Care, is now a Dementia Friends Champion. Here she shares why she feels it is important to shift perceptions around dementia

 Minister for Care, Caroline Dinenage – Dementia Friends Champion

Minister for Care, Caroline Dinenage In my role as Minister for Care I am responsible for dementia, but the issue runs deeper for me.

My grandmother had dementia and I, like so many, have seen first-hand how she was affected. I saw how she began to rely heavily on my mum who became her main carer. My uncle too lives with the condition and is very fortunate to be cared for by brilliant, knowledgeable care home staff.

The statistics around dementia are shocking. We often forget how far reaching dementia is – it’s now the UK’s biggest killer and someone develops it every three minutes. Still, people incorrectly believe that dementia is a natural part of ageing or an older relative is just becoming ‘a bit forgetful’. It is not. It is a disease of the brain.

That’s why, this week I have joined 10,500 others to become a Dementia Friends Champion - a volunteer who encourages others to become a Dementia Friend and make a positive difference to people living with dementia in their community.

I have long admired Alzheimer’s Society’s Dementia Friends programme and became a friend in 2015 as the MP for Gosport - I wish it had been around when my grandmother was alive. It really has been so helpful in shifting perceptions around dementia and helping those affected to stay feeling part of their community. In recent years the barriers around dementia have slowly begun to crumble and at last there has been a shift in society towards acceptance and inclusion of those affected.

Dementia makes front pages, it’s been the subject of major soap storylines and household names like Barbara Windsor, Carey Mulligan and Terry Jones – to name a few – have come out to talk openly about their experiences. But there is still a long way to go.

People with dementia often still feel isolated, or hidden, because of stigma from friends, neighbours or relatives who are frightened of the symptoms and don’t know how to react, or even what to say.

Minister for Care and Alzheimer's Society
Sally Copley (left) and Ele Yorke (right) from Alzheimer's Society, with the Minister of Care, Caroline Dinenage (middle)

Changing the way the world thinks

Alzheimer’s Society’s Dementia Friends and Dementia Friendly Communities are changing the way the world thinks and acts about dementia. There are 2.5 million Dementia Friends, making it the biggest ever social action movement to change perceptions of the condition. Incredibly, in every school, train carriage and even in the Government’s Cabinet, there is someone who is a Dementia Friend taking action to improve the lives of those affected. This is a huge achievement.

And beyond being a Champion, I am committed to delivering the Government’s Challenge on Dementia 2020 - to make England the best place in the world for people with dementia to live. We continue to make progress in improving diagnosis rates, ensuring better access to care and support, increasing public awareness and funding for dementia research. Just last week, we reached the milestone of over one million NHS hospital staff to have received dementia awareness training since 2012.

The Government continues to maintain a focus on dementia, prioritising support for staff education, training and development across all settings; dementia care and the provision of high quality, person-centered post-diagnostic support; and investment in research to develop new treatments, models of care and innovative technologies to enable people to live well with dementia.

I look forward to delivering my first session and will now make it my mission to encourage others to take action, so we can break down the barriers that still face people with dementia and their families and encourage all of you to become Dementia Friends too.

Next steps

Learn more about the Dementia Friends programme and sign up today.

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9 comments

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The minister needs to learn the meaning of 'action not words'.

Jack Stone

I have been a volunteer for the last 29years in supporting the Alzheimer's society when we first started in Shropshire and I have fund raised all this time, at the moment I'm organising the Memory Walk AT The British Ironworks at Oswestry we need to find a cure and keep helping people with dementia and their carers. We have formed a steering group in Oswestry and district to make the area dementia friendly and also have people with dementia in the group so we have their input.

The concept of a dementia friendly society is to be applauded BUT until there are enough troops on the ground to deliver, it is deceiving. In April, we were told that my husband could see his neurologist in November!! We had previously seen him privately but decided that we needed to use the NHS in future. The NHS is obviously stretched to its limits.

Thank you for sharing your thoughts, Margaret.

If you or your husband require any information, advice or support regarding dementia, we recommend calling our Helpline. Our Dementia Advisers are available on the phone from Monday to Wednesday from 9am to 8pm, Thursday and Friday from 9am to 5pm; Saturday to Sunday from 10am to 4pm. Please call 0300 222 1122.

We hope this is helpful.

Caroline thank you for your blog & becoming a Dementia Champion. I hope your high profile campaigning will provide long term benefits for the around 1 million people with this health condition.

You should be aware that a diagnosis of Alzheimer's Disease is a "Primary Health Need" as defined by NHS. If the overall health needs are complex people will be entitled to NHS Continuing Health Care benefits, which are not means tested & will fund a Personal Budget to pay for all the Care required. This will ideally be in their private home, or a Nursing Home if required.

However NHS appear to be rationing benefits due no doubt to limited funds available. If true this is a disgrace that our Health Service is not available to everyone with a health need in our country. As a Government Minister you should investigate the decision processes of your Clinical Commissioning Groups & the numbers of people routinely refused benefits.

Details on how to present a claim to NHS are on my website, giving our personal experience of an Assessment, on https://continuinghealthcare.wordpress.com/

Peter Garside

Hello Peter, thanks for sharing.

A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.

Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.

Tips on preparing your case for NHS continuing healthcare’ is available to download for free booklet to provide further information for those who need it.

I think Jack Stone has hit the nail on the head. For those who, having been looked after at home,have a fall and go into A.& E. where a decision is finally taken that the time has come for a care home, the discharge is not properly handled. The NHS says its Social Care which is incorrect. They have the responsibility for Continuing Health Care. This is not properly explained at the time. Discharge needs to be refused until CHC is confirmed. No ifs no buts...you fight tooth and nail for your loved one's rights against the barriers put up by the NHS. The Society is aware of many instances where CHC is wrongly refused and I think this disgrace is a priority...action not more words,please!... Bill Burrows.

I read with interest what Caroline Dinenage had to say.
She is right we do have a way to go to ensure EVERYONE is supported on their dementia journey. Sadly that is not always the case. As usual money speaks. People on low incomes or benifits quite often have limited choice as to how they proceed along their journey. I would love to meet up with Caroline and for her to see first hand how some of us struggle.
Having a diagnosis of dementia is devistating . But having a fear of what the future might hold !!

Yes the need to remove barriers being spiritual minded in the physical realms and outer body experience start with self being having a mean full life perceived encountering with like minded people need not be a stumbling block true too say healthy habits are key too change and evaluation re-energising being mindful and and activation self development brain health very important small gestures can help build momentum importance active census

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