Dementia and Politics

Governments across the world are more and more focusing on setting strategies for dementia.

In the UK the Welsh Government has committed to producing a new strategy for dementia by the end of 2016, the Scottish Government is planning for the launch of their 3rd National Dementia Strategy for 2016, Northern Ireland published a strategy in 2011, the British Prime minister has set a challenge for dementia for 2020. Looking around the world from the USA who updated their National Plan to Address Alzheimer’s disease in 2015 to countries like Denmark which is working on a new strategy to be published in 2016 there is an increased acknowledgement of the need to set policy in this area.

In 2015 DSDC hosted the masterclass Dementia and Politics, with the aim to reflect on how politics is shaping and reacting to dementia in the world today.

Key Points

The masterclass identified 14 points which are not being talked about:

Solutions to “the dementia problem” are only likely to be partial
The big demographic numbers are a problem
The media framing of dementia is damaging people
The charity sector is compromised
Not enough resources is a Catch 22 which needs to be broken
Dementia is about hard economics as much as social values
Drugs can only offer false hope
Old ways of working will not deliver what is needed
The limits of Involvement
Dementia is a feminist issue
Dementia friendly communities need to become less bland and more political
Euthanasia is in fact not a problem
Dementia is a human rights issue
The need for activism

Listen to the masterclass here.

Speakers Quotes

"that to say anything against Dementia Friends would be like being against people with dementia"

June Andrews

"we can’t diagnose dementia at the moment, in the early stages, not unless you’ve been following somebody sequentially and I don’t think people grasp that, they really don’t. "

Claire Nichol

"so it’s how or what’s the chain between people like you and you and this immense expertise, through to the politician who’s sitting there with the in-tray with all the pressures on them, they need to win the next election, how do we get those messages across?"

Jane Salvage

"that’s why it’s fantastic that we have the research community doing really good research because it gives us the arguments to go to the politicians and say – this is the situation, for instance world-wide dementia is going to go from 44 million to 235 million by 2050, and the cost is going to sky rocket. What are you going to do about it?"

Johan Vos

"Now you know obviously we need to make money, everything needs to make money, I don’t totally disagree with that but I think it is skewed the research agenda and it means that those aspects of care that don’t make money, and can’t be seen obviously to make money, again the point you were making earlier about early diagnosis, you know I’ve never understood why we are so obsessed with early diagnosis"

Harry Cayton

"but I think by about 2040 there’s sort of there will only be two people available to care for every older person, I mean the ratio’s just going to change out of recognition"

Claire Nichol

"somebody needs to tell all the people who are about to be twenty, that thirty years from now they better have made provision for looking after their old people. There’s a range of provision from approving a euthanasia bill all the way through to buying insurance policies so you can afford to pay for somebody to look after your Mum. So there’s a whole range of things that I don’t hear that conversation now that young people - ….who’s talking to our children, grandchildren about the fact that a solution needs to be found."

June Andrews

"So we’ve got to find a way of proving that it actually is stupidly costly not to do something now about some of those things"

Alan House

"Yes, for example in the literature, you’re starting to see lots of reports about elder abuse in countries like India, where once upon a time, maybe it happened, but it wasn’t thought to happen, and of course that is always part of the problem. But it’s the issue that of course women in all of these other countries now are going out to work to improve their own prospects which is good, and to improve the economics of the family, which is good. But then, you do end up with this huge difficulty of the provision of care, so I don’t know the solution to it. But it’s very difficult for families to provide traditional care in that scenario"

Claire Nichol

"There is an interesting dishonesty about the way things are portrayed publicly and what goes on in private. If you talk to anybody you know personally, like a health professional, or a health academic about somebody in their family who is ill, you’ll say, ‘what did you do about it?’ …. You organise a family rota to make sure they are not in the care of the ward they’re in without a family member for more than a couple of days……And yet we don’t say that to people in general do we, because it frightens, the politicians are afraid to say “actually it would be a really good idea, when your relative is in hospital if you spent quite a lot of time in there’, ‘because if you form a partnership with the hospital then things are likely to go better’. "

Alan House

The key findings and points have been summarised int the accompanying Iris Document, Masterclass 2015.

Participants

Professor June Andrews
Professor June Andrews has had a significant impact on healthcare in the UK. Her book, Dementia: The One-Stop Guide, gives comprehensive advice to really make a difference.

Johan Vos - Deputy Executive Director Alzheimer's Disease International
Johan is responsible for developing new strategic partnerships, updating policies and strategies, implementing new projects and leading ADI’s regional development and advocacy programmes. Johan also deputises as Executive Director.

Claire Nichol - Consultant Geriatrician, Addenbrookes Hospital Cambridge Claire has been a consultant since 1986. First of all at the Hammersmith Hospital when it was the Royal Post-graduate Medical School. Major interests in medicine, apart from the clinical service, has been teaching and training. Claire is a great believer in change and applied for a consultant’s job at Addenbrook’s in Cambridge where a new challenge was going to be teaching undergraduates. Claire has always been part of the British Geriatric Society, so clinically she has worked in community hospitals, teaching hospitals and in the interface with primary care she was on the Professional Executive Committee of the local PEC

Harry Cayton CBE
Harry is chief executive of the Professional Standards Authority for Health and Social Care, formerly the Council for Healthcare Regulatory Excellence. Harry was previously National Director for Patients and the Public at the Department of Health; and from 1992 to 2003 he was chief executive of the Alzheimer’s Society and director of the National Deaf Children’s Society (1981-1992). From 2007-2011 he was chair of the National Information Governance Board for Health & Social Care.

Mark Butler
Mark is an independent expert in organisational strategy, governance and change. He calls on over 25 years’ experience as chair, chief executive and director in health and social care, in the arts, in higher education, and in senior government roles. He remains closely linked to all these sectors through his work with the Good Governance Institute and others. He is also a Visiting Fellow at the University of Stirling and Director of the Dementia Festival of Ideas.

Jenny Salvage - Nurse
Some highlights from Jenny's work includes running a national development programme for nursing at the King’s Fund, from there she went to the World Health Organisation as World Matron. Jenny is approaching the age that her mother was reluctantly diagnosed with some form of dementia. So she comes at it from a potential service user perspective very much as well as one who’s been with family members.

Luciana Berger - MP
Luciana is a British Labour politician who has been the Member of Parliament for Liverpool Wavertree since 2010. She was appointed Shadow Minister for Public Health on 8 October 2013, before becoming Shadow Minister for Mental Health on 14 September 2015.

Alan House - Professor of Liaison Psychiatry, Leeds Institute of Health Sciences
Allan is a Professor of Liaison Psychiatry, the sub-specialty of psychiatry concerned with psychiatric practice in non-psychiatric settings. He is interested in applied health research. His personal research interests include: the overlap between physical and mental disorder, medically unexplained symptoms, suicide and self-harm. Allan chairs the Yorkshire and Humber Research Funding Committee of the National Institute for Health Research's Research for Patient Benefit programme. He has served as a member of the HTA Commissioning Board and is a member of the NIHR Panel of Experts.

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