Minister for Care Caroline Dineage speaks about Alzheimer's Society for Dementia Action Week - blog

How we’re supporting politicians to turn words into action

For Dementia Action Week 2018 we spoke to hundreds of politicians across Britain. Read how we're supporting them to take action on dementia.

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This Dementia Action Week we spoke to hundreds of politicians across England, Wales and Northern Ireland. Last summer’s General Election showed that dementia care is one of the biggest political issues across the three nations.

However, there is still much work to be done.

By meeting with political representatives throughout the week we want to ensure people affected by dementia are really listened to.

Action in Westminster

A big part of encouraging action on dementia involves making sure our politicians fully understand the issues facing people living with dementia today.

That’s why we held Dementia Friends Information Sessions across all levels of Government, from MPs to civil servants.

We even delivered sessions to the Cabinet and Shadow Cabinet in the same day!

During the week we also held a drop-in event in Westminster. Here, we spoke to 91 MPs about the problems with cost, quality and access to care that people with dementia experience.

Some MPs are already taking these learnings into their constituencies. For example, we supported Robert Courts MP to become a Dementia Friends Champion, so he can deliver sessions in his local constituency in Witney. This really highlights the importance MPs are beginning to give this issue, making a difference where possible.

Finally, we worked with Caroline Dinenage, the Minister for Care, to organise a range of activities across the week. As well as speaking at our Annual Conference (see image above) and at a Dementia Friends session we held in parliament, she also visited our researchers at Southampton University to hear more about what they are doing to help all those affected by dementia.

Action in the Senedd

In Wales, we launched our campaign to make the National Assembly dementia friendly. We’re aiming to make sure all 60 Assembly Members become Dementia Friends so they increase their understanding of what it’s like to be affected by dementia.

During Dementia Action Week we held a drop-in event where AMs could come and find out how they can support their constituents.

We had around 34 AMs come along, including the Cabinet Secretary for Health, the Minister for Social Care, four further government Ministers, Shadow Ministers, the Llywdd (presiding officer) and deputy presiding officer.

So far we have 32 AMs who have become a Dementia Friend, with 15 more pledging to become a Dementia Friend shortly, we’ll hold them to that!

This is one step towards our aim, and with the backing from the Cabinet Secretary of Health Vaughan Gething AM, we’re well on our way to having all AMs in Wales becoming a Dementia Friend by November this year. 

Senedd Dementia Friends - Welsh AMs during Dementia Action Week 2018

New Dementia Friends, Hefin David AM (left) and Vaughan Gething AM (right)

Action at Stormont

During Dementia Action Week we also held Dementia Friends sessions with MLAs in Northern Ireland, along with their constituency and policy personnel and many Assembly staff. Politicians in Northern Ireland are now better equipped to support a family member, friend, neighbour or constituent to live well with dementia. The sessions will help them stay connected to their communities and to tackle social isolation.

Dementia Friends during Dementia Action Week 2018

Turning political representatives into Dementia Friends helps make sure our voice is heard in Government

Families are struggling to get the care and support they desperately need. With no cure for dementia in sight, care is the only form of support people have. We’ll continue to work tirelessly to ensure the needs of people affected by dementia are addressed in all three nations.

How you can help

Sign up to take action in England, Wales or Northern Ireland and ensure people receive the care they need, the care they deserve

22 comments

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its had a massive impact on me social services just palm me off im sick of it itl take something to happen to my mum before they act caring for her 24 7 is wearing me out up most nights because of the wandering they know these issues but dont act shes not safe to be left alone for a minuit i feel like im coming to the end of my terror 4 different social workers within a year doesent help they all say things will change but never do they want to try living with it when you get attacked by your loved 1 and lack of sleep all they keep telling me if she wanders 4n the police rubbish they cant do nothing just being palmed off as usual where do i go from here please

i hope someone with some authority has replied to you before me
so sorry to hear your anguish - have been there , don't forget Alzheimers society have a help line for you to call , maybe if you can say which part of the country you are in someone may read this and help?

hi Julie
I'm sorry you're having such a hard,exhausting time looking after your mum:I know a bit what that's like,having looked after my partner,often 13-14 hours a day,for 20 months,first with mental illness then with advanced bladder cancer.she died last august,and I've been continually grieving until now.time does help,I'm feeling a little less sad now,but I will always miss her.you said about being at the end of your tether:I know just how that feels,how exhausted you must feel:looking back I realise that at the point of my exhaustion-and I'm sure you must have said to yourself "how can I go on?"--God took over and gave me the strength to carry on,I don't know if you believe in God/Jesus,but if you pray to Jesus he will give you the strength to continue to care for your mum,and you can pray for anything you want and need-caring help,healing,finances-whatever:that's not to say Jesus will always give us what we want,but he'll guide us to the help we need:trust your intuition.God bless you Julie,it would be great to hear from you if you wish to continue the conversation,at any rate all the best to you and your mum.

Marc (Roughan)

([email protected])

Lucky you even having a social worker. !

I totally agree with you there is less and less care for family living and caring 24/7 for a loved one. My mum now living permanently with us and as a result of being under the same roof the direct payments have been taken away so I now have no income whatsoever been caring for my mum 8years and now her care needs are very different she can’t be left alone.

Social care in this country for dementia sufferers is a shambles. So much needs to improve. My dear husband sadly passed away yesterday morning having fought so bravely for 7 years with young onset frontal temporal lobe dementia. The biggest battle I had was making professional services understand that because my husband was young his needs were so different from that of a sufferer in the twilight years of his life. I had to fight tooth and nail with everyone and everything to get him the care he deserved, it sound not be so, things need to urgently change. The profile of this incurable disease needs to be raised, a lot money needs to be given to fund research into eradicating this disease which is going to become a huge issue in the future. The he governments 'sticky plaster' approach needs to change. Let's hope they get the message and commit to doing something that will bring about a real change. It is too late for my dear darling husband but pray it is not too late for others suffering this dreadful disease.

Hello Julie

I am sorry you are feeling this way. I assume she’s had an ‘needs assessment’? Have you been offered any care package as a result of the assessment to highlight what is best for your mum? If so, your concerns should be adressed?
Do you have 6 monthly reviews by your local Memory clinic ? as part of the review they should be looking into a review of Mum’s medication, in order for her to sleep , so that you can sleep! There’s is nothing worse as sleep derivation.. I know and fully empathise with your situation. So her sleeping it may help with the wandering? My mum is living in her childhood in her stages of dementia and is wanting to go home to her mum each hour. I have a great imagination in terms of excuses as to why she can’t go.
Have you visited the Alzheimer’s society Forum, as find that very helpful and full of guidance for a variety of dementia issues, sometimes it’s just good to see others are experiencing the same as you.
If all the above has been advised to you I am sorry I don’t mean to ‘ suck eggs’. Maybe you could seek advice from an advisor at the society about how to approach the social services and get them to listen and take action to avoid anything demential happening to Mum.
I hope the above helps and i believe you are a special person: your Mum’s guardian angel

I do feel for you Julie. I know how hard it can be - physically and emotionally. In my experience nothing happens until there is a serious crisis. I got help when I had to go into Hospital for a recurring problem, of which stress is a contributor. At the time I was caring for my Mum who has dementia, and my partner who is elderly and infirm with mobility problems. This struggle went on for some time, but when I suddenly wasn't around to go and find my Mum in the middle of the night and put her back to bed, she was put into respite, with her dog, while I recovered. Social Services then were very helpful and decided long-term care was needed for her. She is now happily settled in a care home, with her beloved pet.

It is a shame that the help wasn't forthcoming before I got sick, but once the seriousness of the issue was recognised, the help did kick in very quickly. Don't give up - and don't feel guilty if you can't manage any more. Sometimes residential care is the only answer - and can be best for everyone.

I think it's time to speak to your G/p and ask him to arrange some respite for you on a regular basis so as you can have some time for yourself

Have you got your GP involved Community Mental Health Team may also have some input.
Just keep ringing social services on a daily basis,good luck

My wife's suffered with Alzheimer's for over 9 years and is now getting violent. The social services actually made contact with me on Monday, first question has she got more than £23,500 in the bank, 2nd question what money does she have coming in, 3rd question can she walk unaided, 4th question can she get out of bed by herself, 5th does she need a zimmer frame or a walking stick, next okay if you need us give us a call. This after 9 years. On Tuesday my next door Neighbour said her husband has just been diagnosed with vascular dementia and the social services have spent over 4 and a half hours discussing everything that he might need, this is after being diagnosed a few days ago. I'm the only carer,I do everything, wash cook, clean, shop, wash my wife, look after her every needs, the person in the previous letter said she hardly gets any sleep, what's sleep? a nurse in charge of my wife's case who we see twice a year did say I could get someone in to sit with my wife as I cannot go anywhere without her crying, even to the toilet, the cost would be about £18.00 per hour, when I said I care for my wife 24 hours per day 7 days a week 52 weeks of the year how come I don't get £18.00 per hour, because with my reckoning that's £315,360.00 over a two year period, which if I banked for the two year period with interest I could then put my wife into a decent home for a few years. The system stinks, I've actually had the Social Services contact and they have made an appointment to assess my wife and the Alzheimer's Society have sent out a form for me to fill in, this after my wife went for a taster session at a day care center, all this was down to the day care center manager making a few phone calls. I wait with abated breath.

Julie, so sorry to hear your plight. Everyone should have access to some form of respite care. You certainly need to have support, YOU need to keep well, else we have two people to care for in society. Have you no other family or friends that step in to give you a break?

I am Carer for my husband, and have been carer for parents and Uncle in the past.
I feel very privileged to be in Bedfordshire, as the care and support has got even better, with Carers in Bedford and The Alzheimer's Society. We
have drop in's for coffee, where you can have a massage, nails done and hair amongst the fellowship of others in caring positions.
There are support groups held around the county for both Patient and Carer. Also training sessions to support you and help you how to balance and handle things.
Recently many have tackled their MP's to highlight how patchy help is throughout the Country. Of course it is always down to man power and finance.
Hope and Pray help,will be on hand very soon, Julie.

Very best wishes Kathryn.

Hello Julie,
So sorry to hear how desperate you are and I can empathise. My wife does wander regularly, sometimes twice a day but only in the day so far and I've followed in the car and eventually managed to persuade to get in the car. Twice I've had to ring 999 and I can honestly say that the police were wonderful: prompt, efficient and caring. They came came in and chatted afterwards to check that I'd applied for all the help I could get.

Have you asked your GP to request a visit from an Admiral Nurse or spoken to the Alzheimer's Association Navigator for their assistance ? They've both very helpful and work together.

All you are offered is to go to dementia clubs, but some of us don't have the time or our partner doesn't want to go .when you ask for help you get Palmed off so what's the point..the carers are brilliant but they can only do so much.Our Alzheimer's lady Dawn has been the only one trying to help ,so a very big thank-you to her.

I think alzheimers still stays behind in news and propaganda and does not get enough priority in the news. It is so difficult when we see a lot of advances in treatments for cancer but extremely difficult in treatments for dementia. The difference between body parts being affected and the brain which is, in many ways, little unknown.

My M.P. Norwich North Tory Chloe Smith will not answer my respectful email about Dementia care however hard I try.

Enormous effect. It was a very difficult journey to even achieve this. Thankfully Dr Salt acted, as Dad was his patient, but Mum wasn't. She could have injected him with more insulin as he was type one diabetic & good easily inject again. But my experience of social workers. They were only interested in the cost - NOT were we were going through.

Hi Julie, i know just what your going through i had very little support from social services they just fob you off. As you say you have to work 24/7 with very little sleep my husband used to wake me up in the middle of the night and say he hadn't had any thing to eat all day he would shout and swear at me until i got up and cooked him a meal. my husband had the nasty type of dementia he didn't hi me but the verbal abuse was bad, my weight went down to 6stone ihad no help from anyone my two children even stopped coming.I kept him at home till the last two weeks of his life then he ended up in hospital.it was awful i feel for you.Margaret

I know how you feel. I have been there and it's hard,but they do not
Know and get very frustrated and it hard
The worst thing is they don,t understand what's it Like.
To just be there when you can ,and to leave him when you need to
do other things,
My husband would just walk down the corridors when I left him ,But I still miss him every day,just Love him because he does not understand
Bless you .

My husband has vascular dementia but we had a good life together until he got pneumonia and after returning home fell down the stairs. He became very agitated and they put him in hospital under the mental health act after we asked for respite. He then went downhill very fast and as he has emphysema had a lot of problems. He is now in a nursing home but what I want to know is how you can stop crying because you miss his presence so much and that gut feeling that hits you every time you see his things? No one tells you how to cope and I am lucky I have a very loving family but the feeling of aloneness persists.

Dear Maureen,

I am so sorry to learn of your husband's recent experiences living with dementia.

It is understandable that you are missing him so much but it sounds as if you could do with some support to manage these painful feelings. It’s important to look after yourself and to recognise your own needs during difficult times.

I would encourage you to call us here at the National Dementia Helpline 0300 222 1122 where I, or one of our other advisors will be happy to offer support, information or advice.

You may also find this information on our website useful:
https://www.alzheimers.org.uk/get-support/help-dementia-care/looking-af…

Kind regards,
Helpline Advisor

Hi All these are very sad comment's, but this is life I have worked with Dementia for approx 20 plus years and they are valuable adults who have rights and choice but these are taken away from them with this on going cruel illness my heart goes out to each and every one of these lovely people just do your best because this is getting more publicity and this is what is needed to get the help and support, I work at a Dementia centre we could fill this we have lots of availability but there's no funding this is people who have worked all there life even fight for there country oh please I could go on forever please keep sending me information Thank you Traceyx

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