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The Prime Minister’s Challenge on Dementia: What is happening and what comes next
This year will see a review of the Prime Minister’s Challenge on Dementia. We take a look at what has happened so far and what comes next.
This year will see a review of the Prime Minister’s Challenge on Dementia.
Arron Mattu, Policy Officer at Alzheimer’s Society, explains how this could help achieve positive change for people affected by dementia.
What is the Prime Minister’s Challenge on Dementia 2020?
The Prime Minister’s Challenge on Dementia 2020 was set up in 2015 by the previous Government. The current Government has recommitted to the Challenge. By 2020, the Challenge aims for England to become:
- The best country in the world for dementia care and support
- The best country in the world for people with dementia, their carers and families to live
- The best place in the world to undertake research into dementia and other neurodegenerative diseases
The Challenge includes over 50 commitments to help achieve these goals, 18 of which are ‘key aspirations’ in need of immediate action. This means they are considered of vital importance or a foundation for achieving the other commitments.
Why is a review taking place?
In March 2016, the Government published an Implementation Plan detailing actions for delivering the 18 key commitments by 2020. The Government said it would review the Plan in 2018.
The review was opened in February this year. It is looking at the progress made with the key commitments and what can be done to help deliver them by 2020. Alzheimer’s Society submitted a response to this review in partnership with the Three Nations Dementia Working Group in May.
What we said
One of our key calls was for the new messaging in the NHS Health Check, on how to reduce the risk of dementia, to be put into practice successfully. We said health professionals should receive resources and training to support them to deliver the new messaging.
This will help to raise awareness and understanding of the lifestyle changes that can help reduce the risk of dementia.
Another key call was for all NHS and social care staff providing direct care to people with dementia to receive a higher level of dementia training. You can see the negative impact that a lack of staff training can have in our Fix Dementia Care: Homecare report. In the report, we heard stories of people in soiled clothing and having urinary tract infections overlooked. Training standards need to be increased for people with dementia to receive more person-centred care.
Further key calls included;
- Better understanding of and action to address differences in diagnosis rates across the country
- Further work to increase the number of Dementia Friends and Dementia Friendly Communities
- More people with dementia having the chance to participate in research
- Dementia Statements to be upheld by Government and other national partners responsible for delivering the Challenge in their work.
How the review affects you
The Challenge is vitally important for improving awareness, care, support and research for dementia. It has the potential to deliver;
- More information about reducing the risk of dementia
- Higher levels of dementia training for staff in healthcare and social care
- More dementia-friendly communities
- More dementia research and more opportunities to be part of dementia research.
What comes next?
Later this year, we expect the Government to release a report explaining the progress with the key commitments so far. It will also detail the actions needed to deliver these commitments by 2020.
We’ll keep you updated on the outcome of the report, so keep an eye out on our website for more information. In the meantime, you can also sign up to hear about our campaigning and take action to achieve change.
Ingrid Amstell
saysDementia care MUST be state funded. It is a disease just as much as cancer. It is a national scandal that sufferers have to pay for themselves if they have assets. The State wants us to work and pay our own way in life and save for our old age and then penalises us when we do so. If we rely on the State and don't look after ourselves it rewards us by paying for our dementia care. It makes us Silver Surfers, want to spend all our hard won assets living the the high life and relying on the State if we get dementia!!
HaleyPetter39
saysVery well written and interesting and its full with information.
Debbie
saysIf more commissioners would consider the implementation of admiral nurses there would be more support for families. There is robust evidence ( dementia uk website) that where Admiral nurses have been commissioned, families have received better support, there have been less crises, hospital admissions etc. Every family living with dementia should have access to one post diagnosis - through to end of life. At the moment sadly it is just a select few. I deliver dementia awareness training in my organisation ( health trust) but we need more training for social carers and care homes
scott
says#dementiafraud the other plan the Government has already hatched.
Linda Robinson
saysIs there anything in the Prime Minister’s Review about support in the home to those with Dementia? I want to mention the quality of care companies/carers.
We are on to our sixth company. Standards are dire and although the CQC is ‘supposedly’ monitoring these companies, their reports don’t seem to match care being given. I’m not asking for too much am I? We pay for the care dad receives as he is over the threshold. I wouldn’t mind paying if the service was great but it isn’t . It’s stressful.
scott
saysThey simply just aren't trained or paid enough.
Alzheimer's Society
saysHi Linda,
Sorry to hear about your experience of care companies, it sounds really stressful.
The Prime Minister’s Challenge on Dementia 2020 makes reference to support in the home for those with dementia. In particular, it makes a commitment for ‘increased numbers of people with dementia being able to live longer in their own homes when it is in their interests to do so, with a greater focus on independent living’ (Department of Health, 2015: 31 – 32). This commitment aims to improve care at home to enable more people with dementia to live at home, with a focus on developing improved homecare services and using technology to help people remain at home. A key part of this commitment is also to increase the number of dementia-friendly communities. Alzheimer’s Society continues to make good progress with this and there are now 310 dementia friendly communities in England.
Alzheimer’s Society is aware of the high cost of care for people with dementia and that people with dementia often experience inadequate care compared to those without the condition. In our full response to the review of the Prime Minister’s Challenge on Dementia 2020, which accepted evidence until May 2 2018, we said that the Government needs to provide additional funding for health and social care. We also said that the CQC should take a more active role to encourage higher levels of dementia training in the care sector in order to help drive up standards. To Fix Dementia Care, we believe the Government must invest in a new care system that puts quality at the forefront and doesn't lump huge bills on families. This summer, we are calling on Government to stop failing people with dementia and plan for a system that works, once and for all.
Our latest State of the Nation report, ‘Dementia – the true cost: Fixing the care crisis’, highlights our calls on Governments in England, Wales and Northern Ireland to reform social care, to end the inequity and deliver the change that people affected by dementia deserve. One of the key findings from the report was that the cost of dementia care can be up to 40% more expensive than non-dementia related care. In addition to this, we found that more than a fifth of services that provide dementia care are rated as failing by the Care Quality Commission (CQC), a higher proportion than those that don’t (CQC, 2018). 1 in 3 homecare workers also told us they have had no dementia training. At our listening events for the report, people often shared their negative experiences of even basic care for their loved one.
In our report, we called for action on cost, quality and access. For cost, we said that the cost of extra care charges for a health condition such as dementia, must be covered by the state. For quality, we said that all health and social care workers must be given the training and support they need to deliver quality dementia care. The full report can be viewed here. We will be using evidence from our latest State of the Nation report and our wider work to prepare evidence to input into the development of the Government’s Green Paper on adult social care. Our approach to the development of the Green Paper and our work as part of the Fix Dementia Care campaign will help enable the Society to deliver the arguments, evidence and pressure required to realise the change that is needed in the social care system.
Hope this answers your question re: the Prime Minster's Challenge. If you need any advice and support with your dad, please do let us know or contact our helpline.
MC
saysI have recontacted the conduct marketing authority to raise the issue of dementia care costs and the average 37 - 40 % more they pay for care. Financial disincentives are definitely at play - local authority/nhs chc/ and private care home sector - all complicit in it!! and do everything possible to deflect from a person's right to be assessed, and then when are assessed, to marginalise the persons level of need so they don't meet the criteria for funding! Relates to budgetary deficits! nhs and social care and profit margins being squeezed and-care home sector - and sadly greed!
Discriminatory practices against persons affected by dementia and their families certainly exist. Still alot of subjective views and opinions - despite DDA / Mental Health Act / equalities act / and Mental capacity Act implications. Ignorance rather than evidenced based knowledge and experience from the dementia specialist professionals and organisations we thankfully have received support from. Still inadequate training for community/hospital/and care home staff.
As for Carers! - well we all get a raw deal frankly! again with the exception of support from organisations that understand dementia and its impact on families.
Where would we be without their support. Without the input from family carers and their largely unpaid contribution! to the care of their loved ones - nhs hospitals would become totally gridlocked by those labelled as bed blockers!! and the whole care system grind to an abrupt halt!!
All carers should unite and complete on mass the survey being sent out by the Alzeimer society goverment lead working group and say it as it is but make suggestions of how it can be sorted out from your own prospectives.
We need more dementia friends and specialist dementia nurses in the community private nursing and hospice sector - who can truly advocate for the person with dementia and their family.
We need a much fairer sytem of charging for families affected by dementia
and a recognition from chc funding bodies of the right to equal access to continued health care funding for the person with dementia as compared to other long term progressive degenerative conditions.
This is now long overdue to be sorted out! as the current care system is in crisis! - and the bank of mum dad or hus band or wife are well and truly bled dry!! and those amongst the most vulnerable in our society - the person with dementia
frankly between a rock! (the nhs that never seems to give when it comes to dementia!)
and a very hard up place!- adult social care - means tested - quantity(done on the cheap) versus quality approach!!
The person with dementia and their family deserve so much better than this!
In relation to chc decision outcome, and the insensitively worded letters that are sent to families, that frankly make your blood boil! by marginalising the individuals totality of need-
Be determined!! fight the cause! Appeal! Appeal!! and Appeal again!!! - till the light bulb moment! and the victory is won!!
Get your MP to help!
Don't give up! cos it could be any one of us in the future!
scott
saysThe Local Authorities/Social Services fail to tell families about Section 117 Aftercare.
peter
sayspeter I have dementia can I claim P.I.P for it and what rate please
Jane
saysSomething also needs to be done about NHS continuing healthcare payments to pay for care for oeople with dementia. Money is being wasted on hiring agencies to assess people and still most of the funding requests are being turned down without even having been seen by the assessor 😠
David Goodwin
saysI certainly agree, My partner was assessed about three months ago and they cannot even bother to reply and say that the assessment was be considered. The local dementia team and the local Alzeimers society are very good but this does not help for the rest of the week and my partner is getting worse day by day. There are good days but these get less and less all time. I will be 80 this year and struggle to cope more and more this means Veronica my partner suffers from neglect not intentional but still neglect.
Alan Hewitt
saysI totally agree. My wife died in September last year. I phoned the CHC office a couple of weeks ago and was told it would be possibly 6 months more before a decision is made. Not fit for purpose in my opinion.
peter
saysit took about 6 months for I new had weeks of tests at hospital then about 6 months got told I had it now cant get help
peter
saysI'm still paying council tax bedroom tax ect
Jack Stone
saysIn addition to Pamela's point, there is also a crying need for social activities for people with dementia and their carers.
Janet slater
saysAll I wanted for my husband who as Vascular Dementia was somewhere he could get exercise in a safe environment, I tried a gym not suitable, I went to the organisations who should be able to help nothing!! I have now found it myself, so I will not expect anything to Change, Dementia is the silent decease and loved ones are carring the burden, until they too become ill
peter
saysI have Dementia find it hard getting help I only want to know if I can claim P.I.P and what rate help cover my care can any one help me please
Alzheimer's Society
saysHi Peter,
Sorry to hear you've found it so difficult to get advice regarding PIP.
Have you tried contacting our helpline? You can reach them on 0300 222 11 22 and they should be able to offer some support.
We also have some information on our website about claiming benefits, including PIP: https://www.alzheimers.org.uk/get-support/legal-financial/care-mobility…
You may also be interested in this blog post about why we think PIP is failing people with dementia and some advice on taking a PIP assessment: https://blog.alzheimers.org.uk/dementia-insight/personal-independence-p…
Hope this is useful, please do get back in touch if you have any more questions.
peter
saysdo I need doctors or hospital letter stating I have Dementia will I have to pay if I need one please
Alzheimer's Society
saysHi Peter,
You may need to show a council tax exemption letter, but you should not have to pay your GP for this.
With regards to PIP, you may find it useful to have a benefits check. We know that the Citizen’s Advice Bureau and Age UK provide this and sometimes form filling services too. Please find links to their websites below where you will be able to look for your nearest branch.
https://www.ageuk.org.uk/
https://www.citizensadvice.org.uk/
Valerie Cranmer
saysDo not hold your breath springs to mind we are waiting and watching but there is only so long one can hold their breath and the suffering with help one can take remember your vote counts and remind them it can happen to anyone
Panela stones
saysWhat about the cost of care
Alzheimer's Society
saysHi Pamela, thanks for your comment.
Alzheimer’s Society is aware of the significant costs which can arise when people affected by dementia access care and support. In our full response to the review of the Prime Minister’s Challenge on Dementia 2020, we said that the Government needs to provide additional funding for health and social care. To Fix Dementia Care, we believe the Government must invest in a new care system that puts quality at the forefront and doesn't lump huge bills on families. This summer, we are calling on Government to stop failing people with dementia and plan for a system that works, once and for all. Our latest State of the Nation report, ‘Dementia – the true cost: Fixing the care crisis’, highlights our calls on Governments in England, Wales and Northern Ireland to reform social care, to end the inequity and deliver the change that people affected by dementia deserve. One of our key findings was that the cost of dementia care can be up to 40% more expensive than non-dementia related care. In our report, we called for action on cost, saying that the cost of extra care charges for a health condition such as dementia, must be covered by the state. We also called for action on quality and access. The full report can be found here.
We will be using evidence from our latest State of the Nation report and our wider work to prepare evidence to input into the development of the Government’s Green Paper on adult social care. Our approach to the development of the Green Paper and our work as part of the Fix Dementia Care campaign will help enable the Society to deliver the arguments, evidence and pressure required to realise the change that is needed in the social care system.
Hope this helps to answer your question.