Making dementia part of the debate at the political party conferences

Our team were at party conferences talking to MPs about the state of dementia care. Anna Bailey-Bearfield, Policy Office, shares an update.

It’s been Party Conference season again and our team has been in both Brighton and Manchester to speak with the Labour and Conservative parties about dementia care. Anna Bailey-Bearfield, Policy Officer at Alzheimer’s Society, shares an update.

MPs at party political conferences
Wendy Morton, MP for Aldridge-Brownhills, at our drop-in event

Following the General Election earlier this year, and the public interest in dementia, it’s clear that social and dementia care can no longer be ignored.

There’s been widespread support for action to guarantee that people affected by dementia have the support and care they deserve in the future.

Many people debated the issue at conferences this year, including party members, fellow charities and members of the Care and Support Alliance. Along with us, they demanded that dementia care and reform of the overall social care system cannot be kicked back into the long grass again. These issues are out there now causing real public concern.

The Government must fix this for people once and for all.

Talking about dementia care

Rob Burley at political party conferences
Rob Burley, Director of Campaigns and Partnerships at Alzheimer's Society, sharing the experiences of people affected by dementia

As well as holding meetings with key ministers and shadow ministers to discuss the future of dementia care, we also held a successful fringe event at each of the main party conferences.

At both Labour and the Conservatives, the fringe highlighted the grave challenge that people living with dementia currently face in just getting basic support from the disjointed, complex and puzzle-like system that exists today.

Our drop-in style event enabled us to have these in-depth conversations with MPs and other attendees. Alongside the current state of care, our discussions looked at how we can all be involved in ensuring that the Government is held to account on social care reform.

To emphasise how fractured the current system is, we shared a range of powerful yet devastating stories from people living with dementia. Their struggles were all different, but essentially they all faced huge barriers to getting the care that they needed.

The response from MPs

Alzheimer's Society at party political conferences

MPs from across the country attended our Labour fringe event, including Shadow Home Secretary Diane Abbott MP, as well as people affected by dementia, health and social care professionals and local councillors. Together we had conversations about what is working well, and not so well, across the sector.

The resounding feedback from all attendees was that the Government must look at increasing funding for the care system as soon as possible.

At the Conservative Conference, there was a great interest in dementia shown by MPs. We met with Secretary of State Jeremy Hunt, offering a unique opportunity to speak with him. As a key decision maker, we shared the needs and experiences of people with dementia today and what should be included in the consultation on social care reform. This is critical if this Government wants to ensure a positive record when it comes to dementia.

Uniting to fix dementia care

It’s clear from the conversations we had throughout conferences that social care remains an important issue for people. We now wait to find out more about when reform will take place and what will be included for people with dementia.

Whatever the proposals put forward, we’ll continue calling on the Government and Opposition to unite with us to fix dementia care funding and improve the experiences of people with dementia.

If you’d like to help fix dementia care, become an Alzheimer’s Society campaigner.

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38 comments

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I could write a essay about what has happened over the last 12 years of caring for my mother in law, the shear frustration and heartbreak of trying to find help.
And the disappointment of the system that is supposed to suppose both the Alzheimer’s patient and you.
It’s not just a case of a lack of funds it’s a case of the funds not being managed well.

Your pressure is sooooooo important in keeping Dementia Care "on the boil" as a political necessity.

As above

Reluctantly i had to put my mum in a care home because she now needs 24/7 care and i couldnt pay for that unless i sold her home. How sad after working all her life she cant stay in her own home because of a terrible disease that the government dont support.

Health services and Conservative governments don't go hand in hand. Social care relies on those who actually do care and there are many of us. I hope that things will change but the outlook is grim. Hope is something I still have .Sadly people who have Dimentia don't know sad and cannot speak for themselves. It's up to us.

Nothing goes hand in hand with this government, unless you are stinking rich

I'm carrying out postgraduate studies in the subject of old age and dementia. Therefore, I would be interested in being in touch with all new development and research projects being carried out on the important social care issue.

Hi - you can keep up to date with dementia research on our website here: http://www.alzheimers.org.uk/info/20003/research At the bottom of the page, you can also sign up for our newsletter which is a monthly round-up of dementia research. Thank you!

Dementia is a cruel. devastating disease, not just the patient, but the carer, who suffers continued high levels of stress, eventually becoming exhausted and I'll themselves. This disease needs much more funding from the government, but because it affects mostly the elderly, it is largely ignored, who are blamed by certain sections of the media for living too long!!!!!?

Why didn't you go to the Green Annual Conference - that is the place you are most likely to find sympathetic ears [and hearts]. The Greens may not be in Government, but they can still influence policy as they have done in the past.

You should also check out Labour's Health & Social care policies - very much like the Green Party but far more likely to get into power and actually change things. No disrespect to the Green Party and members and supporters.

Hi Maren, thanks for getting in touch. We always attend the conferences of the Government and opposition, as we do have limited resources and have found this is the best way to ensure we get our message across to those with the most influence. We do, however, try to work with all MPs outside of conferences to make sure we engage with as many people as possible. We hope this helps answer your question. Thanks again, and best wishes.

Everybody now knows we will all live longer raising the amount of dementia patients to care for. This cannot be changed it cannot be hidden it has to be addressed and social care has to be financially healthy to deal with these patients who will have led good lives and who are struck down by this disease and then what ????? They almost appear to be a nuisance to the government, out of sight out of mind. Build expecnsive railways, send millions abroad to aid poor nations when we have this massive NHS catastrophe likely to implode at some stage and we don't hear a word about what the government intend doing about this shameful and disgraceful disregard for our elderly population who are suffering neglect just by being ignored. A devout christian leader would never allow this. Come on Mrs May where is your heart and the parties heart. Get rid of Jaguar cars to drive around in, new outfits each week, stop the disgrace of Chequers standing only to "entertain" visiting diplomats and The like. I could go on and on but the saddest fact is they don't care because these polititions are quite comfortable in their little worlds and have no idea what suffering their is in their own country because they DO NOT CARE. I know how my mother suffered with her dementia and her care, it was a disgrace, happy to add the facts if anyone would like to explain why her care was so dreadful. A sad indictment in 2017 in Great Britain

Yes count me in !

I asked for a simple thing that would make my life as a carer a little easier, and was turned down, all I asked for was a blue badge for parking, it is so difficult getting around with someone with dementia, and the blue badge would enable me to park nearer dentist, doctors, banks etc, however because my husband can walk 80 metres he does not qualify, surely the criteria should a include difficult behaviour which is so hard to handle, I would like to see dementia handicap be included for obtaining blue badge.

Blue badges which cost nothing at all are the most difficult aid to get for some reason
Contact homewise they will help you with your badge and lots of other things they are truly amazing

Thank you Patricia, I will try.

It should be totally on the agenda

When talking about a shake up of the Social Care system, one should not forget the Social Services themselves. I have had the unfortunate task with dealing with Social Service employee's over the last 12 months. I have never come across such a naïve, arrogant, and down right set of stupid people in my life.

When my wife was dying in hospital, all Social Services wanted to do was send her home. I had the full backing of the hospital who told me they had no authority to say who goes and who stays. From my experience with talking to other peoples about there experience with Social Services, we all agreed on the same verdict.

I do not think the government or the Alzheimers Society do enough to help people to have activities to stimulate and make their lives enjoyable. People with Dementia need fun activities with other people with dementia it is not easy for people with advanced dementia to join in others or go to restaurants. They need familiar understanding people around them providing a regular routine of activities with their loved ones

Contact Age UK they have lots of group helps they are also running a new government funded project for the next three years

Hi Anne, thanks for your message. We run lots of support services for people affected by dementia. Whether it’s a dementia café or a Singing for the Brain group, hopefully there is something that everyone might enjoy. You can read about the services we offer here: http://bit.ly/2ztBheu If you’d like to find ones in your local area, please use our service finder: www.alzheimers.org.uk/dementiaconnect Alternatively, if you’d prefer to talk to someone on the phone, please give our Helpline a call on 0300 222 11 22. Our team would be more than happy to talk through the different services available. I hope this helps! Thanks again, and best wishes.

What happens when services suddenly stop as in the London Borough of Sutton?

Did you answer the query about what happens when singing, entertainment etc suddenly stop?

As the answer to Jack Stone question had been stopped please can you tell me why social events for people with dementia have been stopped including singing for the brain as singing is so beneficial for them. As Sutton Council no longer are able to help funding why can’t the Alzheimers Society use some of the money that the general public donate?

Once diagnosed people with dementia will not see a doctor again unless they are one of the few offered medication. They will get no referral to a social worker or advice on any help available, they and their family are totally on their own. It is up to them to find out about the system and help in their area, if there is any.
A disgraceful lack of joined up care.
You are much better off with cancer.

I totally agree about social services, waste of time and money. All they were interested in when my ex husband had to go into a home was how much money he had and did he own his own home. I would urge anyone to get Power of attorney over their relatives finances. You will still have to pay but at least it stops social services coming in and taking over their finances. My children were able to rent his house out to help pay for the home's fees, SS would not be interested in that, too much hassle. Also, do people realise that anyone in a home who are charged high fees are subsidising patients who have no assets. Bad enough paying for yourself without being charged to keep other people

My mother had dementia, I stopped working in order to care for her full time as our family was not keen on the idea of placing 'mom' in a home. However, what happened next was I found was a lack of 'real' care and attention to detail,by that I mean, I sent documents, after documents, as requested by Lambeth Council in order to get additional support for 'mom' which was denied. Just simply paying the rent, council tax, other utility bills and feeding the family became a challenge! It took Lambeth Council 6 whole months before responding and that only came about with the aid of a company called DASL. A gentleman came to my home, wherein I provided him with copies of the 42 pages of documents I had sent to Lambeth Council who denied receiving them? I know, we were fortune that this gentleman, physically took my copies and handed them over to Lambeth Council. I believe he just saw my distress and tiredness in fighting. Hence, in the interim, 'no carer's allowance', 'no disability allowance' were being paid. We had to live off 'mom's' pension. It was absolutely dreadful. It would have been easier to gain unauthorised access into the 'Bank of England', than seeking help from a system that is non-existent! I was extremely, angry, frustrated and hurt as 'mom' had worked as an NHS nurse for over 40 years only to be treated in the manner in which she was. That is not to say if others haven't worked within the NHS they should not be treated with respect, equality and/or fairly, of course everyone should. We were refused a 'stair-lift' as it became increasingly difficult to get up and down some 20 plus stairs in the property, our housing association refused to change the locks as 'mom' would often try and leave the property, we were refused appropriate accommodation and not all of the essential adjustments could be made to the property thus, we were just left to COPE. What's happened to 'Great Britain'?

We are very fortunate in that our dad is in a marvellous care home, one of the very few unfortunately. I agree with all of the comments above re funding, my mum is in their home but we are very aware that when they both pass away the care home will come after their property for the fees, even though they have taken dad's pension every month too. One way to help this is we made mum and dad tenants in common with 50 percent share in the property. You have to do this before anyone goes into care. If mum passes first then mum's will leaves her half to the family, so only 50 percent will be taken for dads care. Much is talked about an insurance policy to cover everyone for care home fees but nothing seems to have come to fruitition. Aware that this is a very financial comment and totally agree that there are not enough care home places and help for those so in need. Until you live with an Alzheimer's sufferer you cannot imagine the stress and strain on all of the whole family. My mum nearly had a nervous breakdown trying to keep dad at home.

It breaks my heart to have read all the comments posted. After
a marriage that lasted 56 years I was aware that my Dorothy
was drifting into Alzheimer's. My G.P's response was to wait
"until she gets worse". He would not refer her for any preliminary investigations
for a whole year and this only happened after my family's pleads for him to respond to her needs. It did not take long afterwards for a psychiatrist to diagnose her as suffering from Alzheimer's and the community psychiatric nurse and the social workers became involved. They all decided she needed residential care. Within months of her going into a specialist care home she had experienced an acute stroke and on arrival at the hospital she was pronounced to be at the end of life. I resisted the hospital's request for her to go back from where she came and she died a some weeks later.
I valued the the support the Alzheimer"s Society's help and support.

As a front line worker in a Community Social Work team, I too share the frustrations and fears about the state of our current health and social care system, and the lack of support and recognition from the government in responding to what is a social care crisis.
I am able to share my opinion from a personal and a professional perspective, having had to make a heart-breaking decision for my grandmother to enter in a long term care home placement.
What better place for someone with Dementia to be than in their own homes, the place were they have raised their families, worked and saved for all of their lives, where there carers have exhausted themselves and all avenues to keep them.
As Dementia is not selective and can affect anyone, there has to be a time of change, so that carers are recognised and truly valued for their role, and that the care that is provided is not service lead but what is right for the individual.

Whilst I agree that the government should be doing much more, so should the Alzheimer's Society. With the reductions in funding via social services, I would suggest that the Society allocate funds to support social activities rather than just accepting that local councils' cannot support such helpful and beneficial activities like singing for the brain and memory cafes.

Dementia time bomb keeps ticking away a solution needs to be found on funding care all political parties should help addressing this issue. I sincerely hope one day a cure can be found for this devastating disease.

We were let down drastically by Social Services when my Mother was taken ill and eventually given a diagnosis of dementia over a very short period of 5 weeks. We were told by medical staff at the hospital that she could no longer go home but was medically fit and had to leave hospital. We had less than a week to find suitable care. When she was originally admitted to hospital A + E a psychiatrist liaison nurse arrived and whilst Mum was in the bed nearby crying out for us one of the first questions she asked was ' Does your Mother own her house?'. Completely insensitive since up to that point we hadn't even been told what might be wrong with Mum and had no idea of what was happening. Communication between hospital , ourselves and Social Services was almost non existent throughout her stay there and to this day I believe this was deliberate. There was absolutely no consideration given to keeping Mum at home for as long as possible and I know now that this was simply about money, not about her well being. We were totally vulnerable as her relatives and were put under enormous pressure to place her in a home that was totally unsuitable . Fortunately, my brother and I managed to bolster each other and stand our ground and did not allow her to be rushed to the nearest available place and we did eventually find a suitable placing for her. It is the worst experience of my life and dealing with all the guilt that is attached to such a situation was exacerbated so much by the care system. I am not a serial complainer but we did put in a formal complaint and the authority did eventually admit to certain failures. It is not an exaggeration to say that our experience has made us very suspicious of the intentions of authorities and those involved in the care system . It is through our determination that Mum is now suitably cared for( though she unfairly is paying for it because she owns her house through prudence and always living within her means. She was unable to ever make any savings). The Social Services can accept no praise for helping her. I could go on but enough. However, I do wish to state that the Care home, that WE worked so hard to get her into, have been very , very supportive and all the careers have earned our deep respect for the way they treat our Mum.

Tracy, thank you for your comments. Often the reality of experience informs and questions professional practice. I too was in the caring business for a large part of my life and when when I became an academic it was that experience that enabled me to evaluate the merits of some theories.
Ruth. I too had to face the question of money and property. It seemed to be the criterion of offering care for my late wife. Although I appreciated the professional competence of the initial visit of the visiting team I became aware of the complete separation of the carers and the local authority finance department. Neither understood the other's work.
I totally agree that the best place for the loved person to be is their own home, without
efficient community care this is very difficult if not impossible.

I find it very hard to see my mam with dementia and what makes worse when she go in to hospital patients have to wait so many hours to be seen mam went in at 13.30 then went to the ward the next day at 14.45 the next day then when she did go home and the ward staff handed over as no dnr that was very up setting for me as I had to go looking for that some staff need extra training working with elderly

Susan,
Hospitals these days are very hard pressed but this is no excuse for the way you were treated. When my late wife was first admitted to hospital two consultants diagnosed
her as being at the end of life which they considered would come within a day or two.
Even though the hospital management did advised me that patients at the end of life were not discharged. when death did come quickly enough they wanted to discharge her. I asked for a second opinion and the third consultant looked at the medical notes and scans and he declared that all the hospital was doing was to nurse her and this could be provided at a nursing home. I am eternally grateful to one nurse who ignored the consultants request saying she would not let her patient be put on an ambulance to die. The next day she died peacefully. There are nurses who care and I am very grateful to them

I would be very interested to know why McKee’s assumptions have any basis in reality when surely health professionals worldwide should be more than willing to share knowledge irrespective of financial/trade ties to other national bodies.

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