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A wellbeing economics prism to ‘dementia friendly communities’
There has been some startling consensus over the national political settlement, including as it applies to English dementia policy.
There has generally been cross-party agreement about personal budgets, even though the ‘direction of travel’ from the UK Labour Party is to favour a ‘rights based approach’ to advance choice and control rather than merely though a financial budget.
There are good reasons not to put many eggs into the personal budget basket for dementia; these include how the range of ‘products and services’ for dementia can be in places rather underdeveloped, and the formidable potential safeguarding issues for certain vulnerable individuals living with dementia.
Another consensus is to be found in wellbeing, or living well.
I was struck by a recent recommendation from the first ever report by the All Party Parliamentary Group on Wellbeing Economics, entitled “Wellbeing in four policy areas” (published September 2014):
“Health and Wellbeing Boards should bring together public health professionals, Clinical Commissioning Groups, GPs, and other stakeholders to develop strategies for ‘whole person care’ which effectively integrate mental and physical health.”
Unknown to me, they had been doing great work even prior to the last UK election. Their ultimate aim, unsurprisingly, is to make wellbeing into a pervasive policy strand that straddles across all areas of life.
This ‘wellbeing prism‘ has impacted on various areas of policy, I suspect, in the past, like ‘The Big Society’. I have always felt that the ‘dementia friendly communities’ policy in England, heralded in the Prime Minister Dementia Challenge, although clearly having some roots in the Japanese ‘caravans’ ‘befriending’, fits well into the ‘Big Society’ ethos.
One of the problems with both ‘dementia friendly communities’ and the ‘Big Society’ has been whether the civic sense of solidarity might diminish statutory obligations.
I have witnessed the problems with this, first hand, in writing my book ‘Living better with dementia: champions for enhanced communities’ which I hope to publish next year. The same tensions exist in statutory obligations in the form of equality and human rights law, and statutory entities, and non-statutory community-driven ones there too.
As the O’Donnell Report puts it, wellbeing:
‘leads us to place greater weight on the human factors that explain the big differences in wellbeing, but that tend to be pushed to the margins in traditional policy making’.
There has been some focus on how we need an ‘alternative measure to GDP’. Cynics unsurprisingly argued that such a measure might inevitably gather political momentum given the problems we have had with economic growth in the last few years.
But the general arguments from the APPG on wellbeing economics make an enormous amount of sense to me. Julian Huppert is the current MP for Cambridge, and I dedicated my current book to his mother Prof Felicia Huppert, Professor of Wellbeing at Cambridge. Julian is, to my knowledge, on the APPG on wellbeing economics.
The next parliament, I hope, will see a continuation of a focus on wellbeing in policy. As pointed out in their first report, there is considerable overlap with the wellbeing field and that of the ‘social determinants of health’.
In my next book, I continue with analysing this overlap, using housing as an example. Housing is clearly an area which impacts upon the quality of life of people living well with dementia, not just from architectural perspectives of design, but also how spaces are organised to facilitate personal interaction.
Similarly, planning in the built environment is important, with considerations of inclusivity and accessibility.
These are all ‘desirable’ (or even ‘essential’?) attributes of the ‘dementia friendly communities’.
Unpaid caregivers and paid carers, like professionals, are vital in the social capital of these communities too.
It is said elsewhere that while there has been a strong focus on GDP-style economics the lack of focus on wellbeing means that we do not touch upon many policy areas, such as strife caused by marital breakdown.
I feel that this touches upon another tension of dementia policy, this time at a global level.
We know, for example, loneliness is an important source of emotional morbidity for people who have received a probable diagnosis of dementia all around the world.
Also, jurisdictions have been encouraging the aspiration of people living with dementia to live independently; in other words, not institutionalised in some form, as long as possible. This, I think, is intuitively right, so long as it is not perceived as a ‘failure’ if somebody does need the support and care provided from an institution.
There are some people who believe that the ‘successful ageing’ and ‘ageing in place’ movements have overplayed their hand; with cynics pointing out they fit nicely into the ‘small state’ narrative, a rather individualistic narrative, which takes little account of our cohesion as a society.
But this I genuinely think would be to analyse the issue too much but with one important proviso.
That proviso is that I don’t think you can value people simply in terms of their economic productivity.
I refer to this ‘equality of wellbeing’ even in my Introduction to my new book. Such equality of wellbeing throws a different light on equality driven by a purely economic sense.
In summary, in reference to the first ever report from the APPG in wellbeing economics, as the next Government and the Civil Service turn their minds into thinking about wellbeing and health policy, it will be forefront in their minds that we are about to embark on a huge behavioural change bringing together the NHS and social care.
This transformative change to ‘whole person care’ will bring great opportunities, I feel, as well as formidable challenges, not least funding considerations at a local and national level.
But I feel like the current Government, and like future ones hopefully, that a focus on wellbeing is desirable. O’Donnell is reported to have said, “If you can measure it, cherish it!”
Ideally, it would be nice to have some form of metric to see whether wellbeing interventions have any effect. I am mindful of the excellent work by Prof Sube Banerjee and colleagues on DemQoL, but others exist. And of course we should not want to end up where we started: in a target driven culture which hits targets but misses the point (as famously phrased by Sir David Nicholson).
There might be desirable effects of such metrics, though. They could be formally put into grants for research for living well with dementia; to see whether some activities are more beneficial in care homes, where there is a high proportion of people living with dementia often, than others.
The Baroness Sally Greengross asked me to put in a chapter on arts, music and creativity in my current book; so I did.
But, as the new APPG report on dementia this year rightly discusses, such a metric could be used to incentivise the use of the arts and creativity to improve the quality of life of individuals in society. And I have no doubt whatsoever that arts and creativity are a linchpin of dementia friendly communities too.
The APPG in dementia earlier this year, under Sally’s leadership, urged the importance of high quality commissioning in post-diagnostic support for dementia.
If we have more a ‘joined up’ approach to commissioning and policy, in parallel with the breaking down of silos needed for ‘whole person care’, I think England can consolidate its formidable lead in the ‘dementia friendly communities’ policy in the world.
Other jurisdictions might even follow suit.
Recommended reading:
Gus O’Donnell (Chair) – and Angus Deaton, Martine Durand, David Halpern and Lord Richard Layard(2014). Wellbeing and Policy. London: Legatum Institute. Accessible at: http://www.li.com/docs/default-source/commission-on-wellbeing-and-policy/commission-on-wellbeing-and-policy-report—march-2014-pdf.pdf?sfvrsn=2
Wellbeing in four policy areas: Report by the All-Party Parliamentary Group on Wellbeing Economics (September 2014). Accessible at: http://b.3cdn.net/nefoundation/ccdf9782b6d8700f7c_lcm6i2ed7.pdf
All-Party Parliamentary Group on Dementia assesses progress of the National Dementia Strategy for England
2014 report: The National Dementia Strategy: Change, progress and priorities
Accessible at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1447
Life all good selfies, co-production for research into dementia might not be as it appears
This was the famous selfie from the Oscars which went viral all over the internet, partly thanks to social networking sites such as Twitter.
But this snap photo explains why Liza Minelli was unable to make it.
That things might not be quite as they first appear is nothing new.
Kate Swaffer (@KateSwaffer), living with dementia in Adelaide, has remarked in the past how she feels like a duck all serene on the surface, but paddling really hard underneath.
The co-production of public services has been defined in a variety of ways – e.g. “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours” (New Economics Foundation).
Or in the alternative, “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” (Governance International).
Research into dementia, more so following the G8 Dementia Summit, has been dominated by analysis of Big Data genetics with a view to ascertaining risk pools and personalised medicine, possibly means for asymptomatic screening or early detection, and new pharmacological interventions.
The amount of resource allocation put into this some might say has not been matched by the successful outcomes from this research, though the corporate capture in the large charity, politics and media are well known.
But I believe strongly research into quality of care, or indeed living well with dementia in support settings, should not be regarded as ‘inferior’.
Careful research attention should be put into assistive technologies, assistive living, the innovation culture, design of wards and homes, and, of course, how you measure living well in the first place.
Co-production, however, offers a chance for people with early dementia to be able to shape the services for care, as well as to shape research.
I have latterly become involved in a crowdfunding campaign where I explain the critical importance of decisions for a person with dementia in the science of dementia as well as the implications for our law on mental capacity.
But I also want this to initiate a dialogue between people with early dementia and other interested parties with the law and neuroscience, and other possible stakeholders such as the NHS.
I’m mindful that my book ‘Living well with dementia’ does look through the “personhood lens” – a lens which has done much to challenge the stigma and discrimination associated with dementia – and some people don’t like that.
Darren Gormley (@mrdarrengormley) immediately pointed me to an area of work, in particular a paper called “From personhood to citizenship: Broadening the lens for dementia practice and research” by Ruth Bartlett and Deborah O’Connor in Journal of Aging Studies 21 (2007) 107–118.
“One of the main boundaries of personhood is its lack of political dimension. In cognate literatures, including social gerontology, critical psychiatry and disability studies, a citizenship lens is used to promote the status of discriminated groups of people to that of an equal citizen, with the same entitlements as everyone else.”
“These disciplines use citizenship to understand and expose discrimination against marginalized groups such as people with physical disabilities and to reframe and politicize understanding of the experiences of people with mental health conditions; the scope of this work is wide ranging and goes beyond care issues to include discrimination in the workplace and communities generally.”
The need to promote citizenship, as well as personhood, is beginning to be recognised within the dementia care literature, and I am hoping that this with an emphasis on living well with dementia will percolate into the research arena too.
A result of this shift is that, gradually, research has begun to emerge aimed at capturing the perspectives of persons with dementia. This body of research now clearly documents that persons with dementia are often quite aware of their situation, and can contribute important and unique insights about their experiences and needs.
I have often whinged about the word ‘sufferer’ so I was particularly interested to see the authors make the following remark.
“In addition, people with dementia were generally regarded as a ‘sufferer’ lacking insight into, and ability to articulate, their situation. This discourse silenced people with dementia. However, since attention was drawn to personhood and the exclusion of the perspectives of persons with dementia in understanding and influencing the dementia experience the focus has shifted to incorporating the voices and understandings of persons with dementia into both research and practice.”
However, my own particular interest is research for dementia, so this intrigued me massively since, if you pardon my phraseology, some of my best friends live successfully with dementia.
“The importance of making the shift to citizenship is further evidenced when one considers the potential direction of dementia care research. Currently, Alzheimer’s Society, UK has people with dementia on its research review panel, and there is a small (growing) body of literature to help academic researchers involve people with dementia more creatively in the research process.”
“People with dementia are clearly seen and treated as important players in the research process. However, little of the research looking at user perspective has gone to the next step of either pulling together or examining what happens in research projects in a way that is political.”
“For example, in most user perspective studies, individual needs are spoken of and contextualised using themes or general categories related to care provision; data are not generally seen in the wider political context of the need for social change.”
“Additionally, people with dementia are rarely involved in the early formulation and planning of projects, which raises questions about the relevance of current research to people with dementia. The point is not to criticize user perspective studies but to highlight how a shift to citizenship would ensure people with dementia were seen and treated as people with power, specifically people with the power to instigate and shape the research agenda.”
And that for me is the issue of a two tier nature of who decides research agendas in practice.
Kate Swaffer and I often discuss behind the scenes our concerns about ‘tokenism’, both from quite different personal viewpoints but with similar themes.
How things appear might not actually how they are in reality.
Ruth Bartlett, to her credit, has also developed a ‘toolkit’ draws on my experiences of using diaries for research into the lives of people with dementia who campaign for “social change”.
Like the famous selfie at the Oscars.
And I’m clearly bound to be very happy that currently there’s a massive ESRC grant looking into this.
“Finding that people with dementia are willing and able to campaign, and presenting this at national and international conferences, has captivated academics and improved their understanding of people with this condition.”
This also has profound implications for service development for dementia consistent with the current trajectory.
A rhetoric of ‘user involvement’ became a central part of NHS policy during the establishment of the Community Health Councils in 1973. This had continued through the proliferation of “New Public Management” principles and the growing importance of measures of satisfaction in the 1980s. The NHS and Community Care Act [1990] established a formal requirement for service user involvement in service planning.
From 1997, patient and public involvement were a central tenet of New Labour’s NHS modernisation agenda, and the NHS Plan was committed to creating a patient-centred NHS with user needs at the centre of service design and delivery.
I dare say all of this will be known to Simon Stevens, incoming head of NHS England and one of the key-architects of the NHS Plan.
Arguably, the roots of the phenomenon of ‘experts by experience’, potentially an abreaction to the medicalisation of mental illness, can be found in a history of mental health activism as far back as 1620, when inmates at “The Bedlam Asylum” petitioned for their rights.
After some initial disgruntlement, I’ve now decided I would never dream myself of being an ‘expert’ in anything to do with dementia, but rather a well-informed enthusiast.
People living with dementia and all carers including unpaid caregivers are the real experts.
The somewhat political term “survivors” refers to those who have survived not only their mental health difficulties, but also experiences of psychiatric services, and/or the accompanying general social exclusion.
Or you can the viewpoint, particularly if you’ve been influenced by some, that ‘users’ of mental health services are ‘consumers’ and help to design them.
This is of course all very timely. The Kings Fund have recently published its interim report from the “Independent Commission on the Future of Health and Social Care in England” by Kate Barker and colleagues.
A lack of co-production possibly caused the problems in entitlement and funding which meant Sally (@nursemaiden) was at the receiving end of a bad experience of services looking after her father who was living with dementia.
@RichardatKF @legalaware Thank you Richard I still feel at times I let him down that I should have fought harder against the system.
— Sally-Ann (@nursemaiden) April 3, 2014
In fact Sally has written about this in the Foreword to my book.
What unites both the consumerist subject position of service user and the position of “survivors”, is that they are both legitimised by virtue of their experiences of mental distress and/or of service (ab)use, and seek progressive developments in the treatment, perception and governance of the experiences of mental health.
I’m one such survivor, as I’m in recovery from alcoholism for seven continuous years now. I also live with physical disability.
It’s not enough merely to ‘involve’ carers though; carers patently need to be involved in research as without them the entire service would collapse. And carers themselves often need support, over all sorts of health issues, legal or financial matters.
It’s also essential to ‘involve’ people actually living with dementia who may or may not have some similar concerns, and some different.
But ‘involving’ is not enough.
I feel passionately that people with early dementia should be given the power and control to shape the research agenda in their interests, such as the brilliant work by Ruth Bartlett. This may or may not include living well with dementia: that’s not my choice, but I’m pretty sure I know what the answer might be. Otherwise, ‘co-production’ is merely an illusion of involvement, and as regards living well with dementia is not at all what it seems. Suffice to say, I am not afraid about shouting loud about this on behalf of people living well with dementia.
I intend to promote the need of high quality wellbeing research at the SDCRN 4th Annual Conference on dementia in Glasgow today
This is the programme for today which I’m looking to enormously today.
I will be promoting heavily the cause of living well with dementia, to swing the pendulum away from pumping all the money into clinical trials into drug trials for medications which thus far have had nasty side effects.
In keeping with this, I have been given kind permission to give out my G8 Dementia Summit questionnaire to look at delegates’ perception of what this conference was actually about.
We need also not to lose sight of the current persons with dementia, to ensure that they have good outcomes in the wellbeing.
This can be achieved through proper design of care environments, access to innovations including assistive technology, meaningful communities and networks for people with dementia to be part of and to lead in, and proper access to advocacy support services and information which empower choice and control.
There’s a lot to do here – and we need to have high quality research into all of this arm of research too.
Coming back home to Scotland is like travelling back in time for me.
I was born in Glasgow on June 18th 1974, and my lasting memory of leaving Glasgow for London 37 years ago was how relatively unfriendly Londoners were in comparison.
Of course the train journey through the beautiful England-Scottish border countryside brought it back to me. There’s a lot to be said for getting out of London. It’s an honour to be here back in Scotland.
I had absolutely no idea I would have such a warm welcome here in Scotland. Still feeling incredibly emotional I’m here at all in Glasgow.
— shibley (@legalaware) March 24, 2014
@legalaware @tommyNtour @theRSAorg @PeterDLROW Enjoy the #SDCRN conference tomorrow all. I will be watching for tweets 
— SJ (@YeWeeStoater) March 23, 2014
@legalaware @YeWeeStoater @RealTaniceJudge Peters & Lee welcome home you’ve been gone 2 long come in& close the door http://t.co/LHQvVMprcc
— youcanmakedifference (@tommyNtour) March 23, 2014
Burst into tears on arriving home in #Glasgow just now @tommyNtour @YeWeeStoater @realtanicejudge pic.twitter.com/UG64xKc4GK
— shibley (@legalaware) March 23, 2014
@legalaware Lucky you. You will get a warm Scots welcome I’m sure!
— alison eaton (@doctorsnoddy) March 23, 2014
Penultimate stop in Carlisle. In my 40th year returning to #scotland at long last. pic.twitter.com/og6OAGSc66
— shibley (@legalaware) March 23, 2014
@legalaware @BarbaraACannon @Johnrashton47 Glad there are blues skies to greet you Shibley! Have a great conference!
— Dr ShirleyLockeridge (@DrShirleyLock) March 23, 2014
@legalaware welcome up north! Anything exciting?
— #hellomynameis Paul (@pauljebb1) March 23, 2014
At Penrith – nearly back home in Scotland @YeWeeStoater @tommyNtour pic.twitter.com/ZLpchE3YxE
— shibley (@legalaware) March 23, 2014
@DrShirleyLock @BarbaraACannon @Johnrashton47 now waving (not drowning) at Lancaster pic.twitter.com/ubphOxFF4W
— shibley (@legalaware) March 23, 2014
Welcome to Preston! pic.twitter.com/LQ1i67Dgx4
— shibley (@legalaware) March 23, 2014
Warrington still England surely? 3 hrs til Glasgow @BendyGirl pic.twitter.com/XFhyOKw5Ku
— shibley (@legalaware) March 23, 2014
Surprise surprise this Virgin train left on time from Euston at 1228 pm @SocialistHealth
— shibley (@legalaware) March 23, 2014
My book ‘Living well with dementia’ is here.
Contents
Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia • Dementia-friendly communities and living well with dementia • Conclusion
Reviews
Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’
Professor John R Hodges, in his Foreword
‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword
My name is Shibley, and I’m addicted to buying my own book ‘Living well with dementia’
I’ve sat in more recovery sessions than you’ve had hot dinners….
.. possibly.
So I get a surge of dopamine whenever I receive yet more copies of my book from Amazon.
Worth every penny.
I am Shibley. and I’m addicted to buying my own book.
But I also have a weird habit of getting people I know to sign my copy of my book.
I get withdrawal symptoms from not having enough copies.
I also get tolerance – I need to have an increasing number of copies to get the same “kick” from my book.
Thanks enormously to the following ‘well wishers’, though, who have signed my book.
A huge thanks to Gill (@WhoseShoes) for her unflappable support of me and my book.
Here’s Gill’s blogpost.
And here we are!
I felt very happy to give a copy of my book to Prof Sube Banerjee, newly appointed Chair of Dementia at Brighton and Sussex Medical School. Sube has in fact been the lead for England for dementia – his work is quoted in my book, and I think he’s made an enormous contribution to the living well with dementia literature.
And what does the future hold for ‘living well with dementia’?
Other ‘signatories’ include:
I’ve known Lisa for yonks on Twitter. Lisa is one of the few people who’ve supported me through the bad times too.
But now you can ‘Look Inside’ to get a flavour of my book – as there is now a Kindle edition (thanks to Alice in my book publishers @RadcliffeHealth)
Here it is on Amazon.
Here is a sample chapter from my book ‘What is living well?’
‘Living well’ is not some bogus mantra for the hell of it. It is an ideological standpoint which serves to promote the dignity of our fellow citizens who happen to also have a clinical diagnosis of dementia.
And here are the “beautiful people” who came to my book launch at the Arlington Centre, Camden, one afternoon in February. I can’t believe that this wasn’t even a month ago now!
One of the happiest days, as well, was giving Joseph a copy of my book as a gift.
Joseph was in fact my carer when I could hardly walk or talk, when I was in physical recovery from meningitis on ITU (where I was unconscious in 2007).
And those were the days…
And THIS is the famous poppy.
This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.
After I said I was buying my own copies, @KateSwaffer asked:
But Kate has read a copy of my book from cover to cover:
And as @Norrms says – how can ‘living well with dementia’ fail?
Sure, it’s about dementia research stupid, but don’t forget about wellbeing.
The famous aphorism of Carville is: “It’s the economy stupid, but don’t forget about healthcare.”
This is the way I feel about certain dementia campaigners who unashamedly wish to sideline wellbeing, in the search for a ‘cure’ via well funded biology labs.
Australia will host the next meeting of the Group of Twenty (G20) in November. We ask our Prime Minister, Mr Tony Abbott, to place dementia prominently on the G20 agenda. A petition entitled, “Australian PM Tony Abbott: Make dementia research and prevention a priority agenda item at the G20″ has been created by Professor Perminder Sachdev (Co-Director), from the Centre for Healthy Ageing.
The campaign banner is here.
Firstly, let me say it would be impossible to write this article without acknowledging Kate Swaffer.
Kate is here on Twitter, @KateSwaffer.
Kate is Chair of the Dementia Advisory Committee at Alzheimer’s Australia.
I firmly believe that there is a clear priority for researching good quality dementia care, and wellbeing approaches, as well as funding research into basic biology and applied treatments; and possible preventions, acknowledging that vascular dementias are probably are our best bet for initially reducing the prevalence.
These are potentially exciting times. See for example the recent work on GSK-3 inhibitors which has much promise, if they can tackle ‘known issues’ including potential side effects.
There’s a whole plethora of issues why dementia modifying-drugs have been found to be turkeys not to fly ultimately. These don’t just include a modest effect on benefits and outcomes, but also an inability of the drug to cross the barrier between the body and the rest of the body, and their prohibitive initial price of retail. Notwithstanding, dementia biological research is exceptionally vital to support, and the petition above must be supported for those reasons alone possibly.
But it really is about the quality of life ‘stupid’.
For example, the Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.
There is much to be gained by investing in understanding wellbeing and wellbeing improvements for people living with dementia, allowing greater independence where possible and appropriate. This involves a dialogue about the value that people with dementia bring to the community, along with us all, adaptations and innovations to improve vastly quality of life, design features in a person’s home, ward or external environment, greater choice about care services and better provision of information, promotion of leisure activities and techniques already proven to be of benefit (such as life story or reminiscence approaches).
For research to be moral, we should consider whether it’s moral that Pharma should have the lion’s share. The last decade is littered with failures, with the people should shout loudest, not necessarily anyone with formal academic qualifications in medicine, nursing, social care, or specifically dementia, not acknowledging that the cholinesterase inhibitors do not slow progression in the majority of individuals with Alzheimer’s disease. The modest effects of these drugs on many comes close to being an offensive scam, though the drugs are clearly of benefit in some.
“At the recent G8 summit, the leading economies of the world made a commitment to developing a cure for dementia by 2025. The UK said it would double its annual research funding for dementia to £132m by 2025. The USA has increased its funding for dementia recently by 12.5%. However, all this comes from a low base, with research funding for cancer currently being about 8 times, and for cardiovascular disease about 6 times that for dementia in high income countries (HICs). A huge imbalance will continue to exist.”
Otherwise, we get stuck in the same old tired language of the pharmaceutical industry.
Please do sign the petition, but please do not tolerate these messaging devices which are designed to induce panic and fear. People with dementia do not deserve that.
“[Abbott] will follow the lead of the British Prime Minister who recently hosted the G8 Dementia Summit, and called dementia “the disease that steals lives, wrecks families and beaks hearts” and recognised it as “an increasing threat to global health”.”
This language of “burden” not value has been pervasive in many charities’ attempts at raising money for dementia historically:
“Of course, dementia is a global problem, currently costing more than $600 billion annually, and growing exponentially. The greatest growth is in low and middle income countries (LMICs). Already, there are more dementia patients in LMICs, and by the middle of the century, more than 70% of dementia patients will be in these countries, which are ill-equipped to deal with the burden of dementia.”
Without unpaid carers in the UK, the NHS care for dementia would collapse. And yet they are totally invisible in this narrative.
Certainly, globally low rates of dementia are unacceptable, but also unacceptable is the medical profession not talking about wellbeing at all with their patients preferring to stick to the rubric of “treatment”
If, like me, you’d like to give carers a voice, please support the work of Tommy Whitelaw (@TommyNTour).
“In many countries, there is a lack of awareness of the problem, dementia is poorly diagnosed and facilities for treatment and care are rudimentary. ADI estimated that 3 out of every 4 of the 36 million people worldwide living with dementia have not been formally diagnosed and are not receiving treatment and care. The “treatment gap” is most significant in developing nations. In Australia, the average delay between the onset of noticeable symptoms and a firm diagnosis is 3.1 years. Putting dementia on the G20 agenda and getting a commitment from the leaders of countries like China, India and Brazil is likely to have a remarkable impact on dementia awareness, care and research around the world.”
And the bottom line is..
“More funds are needed for the diagnosis, treatment and care of dementia patients. An investment into dementia research is urgently needed from all countries, led by but not restricted to the rich nations. In many parts of the world, research into dementia is non-existent. This, combined with the relative neglect of dementia research in rich countries, has created a major gap between the disability and suffering attributable to dementia and the research investment into its diagnosis, treatment and appropriate care. Greater research funding will help develop new treatments, but more importantly, exploit the current knowledge to develop strategies to prevent dementia or delay its onset. The G8 has set ambitious targets. We ask Mr Abbott to take the lead and make it a truly global fight against the dementia time bomb.”
Arrrgghh.
It is now more essential than ever to ask persons or ‘users’ of the NHS, and those of jurisdictions beyond such as in Australia, what they want from a strategic response to dementia. This could include, justifiably, better support for carers who include unpaid family caregivers working under considerable stress.
More than ever we need to have research funds to be allocated correctly. It’s going to be vital to have persons with dementia on these research funding allocation boards. For example, shouldn’t we know about the cost/benefit analysis of GPS trackers for people with dementia at risk of wandering?
With all the much trumpeted talk of ‘doctors being in the driving seat’, it cannot be acceptable that persons with dementia, if they are there at all, are tokenistically placed on funding boards.
Persons with dementia and carers should be empowered to tell the people with the money what matters to them the most. This could of course be the noble search for a cure, and much more parity for dementia research as compared with other conditions.
Sure it’s about dementia research stupid, but don’t forget about wellbeing.
#G8summit: Hazel Blears MP (@HazelBlearsMP) praises patients and carers, and calls for research into living well with dementia
On Thursday 28 November 2013, MPs debated the G8 summit on dementia. The debate was chosen by the Backbench Business Committee following a representation from Tracey Crouch. The application for debate was also sponsored by Hazel Blears and Paul Burstow.
This discussion, by parliamentarians, was in fact a very fair and balanced consideration of the practical issues facing the contemporary scene of dementia.
A lot has hopefully moved on from the attitude that, “Dot has gone a bit dotty”.
Diagnosis of the dementias is only part of the story.
The subsequent ‘treatment’ and ‘cure’ for dementia have been actively debated, but this parliamentary debate acknowledged that we have come on ‘leaps and bounds’ for enabling individuals with dementia potentially to live positively with dementia.
There’s clearly a complex parapluie of factors at play here. Does a current lack of cure for dementia lead to more stigma, or does stigma contribute to a current lack of cure for dementia?
The UK is leading the discussion of dementia for the G8, but embarrassingly does not have a strategy yet for 2025 compared to some of its international colleagues.
There has been an increase in investment in dementia research, but this has come from a very low base, representing less than 1% of the annual science budget. It is hoped that this budget will increase, including funding for prevention as well as quality-of-life and wellbeing.
A great thing about this debate was its acknowledgement that not all dementia is Alzheimer’s disease; this is crucial for us to consider how best to allocate monies for research into other types of dementia too, such as the frontotemporal dementias.
Another brilliant aspect was an appreciation that there needs to be support for carers, for avoidance of ‘crises’ – including support for the ‘Dementia Action Alliance’ – in the run-up to the #G8 dementia and beyond.
You can watch this excellent debate here.
Hazel Blears (@HazelBlearsMP) is the Labour MP for Salford. Her submission to the #G8 debate, as provided in Hansard, is as follows. Hazel is well known to be a ‘champion’ for dementia.
Hazel Blears (Salford and Eccles) (Lab): It is a great pleasure to follow the hon. Member for Chatham and Aylesford (Tracey Crouch), my colleague on the all-party group. It is also a great pleasure to see you in the Chair, Madam Deputy Speaker. This is my first opportunity to contribute to a debate under your chairmanship, and I would like to congratulate you on your election.
While I am handing out congratulations, I would like to congratulate the Prime Minister, too, on the personal commitment he has shown on dementia. [Interruption.] Credit where it is due. Those who have the presidency of the G8 have an opportunity to name a subject around which they would like to mobilise the international community. In playing his card at the G8, the Prime Minister has chosen dementia. I commend him for taking that action. I believe that international collaboration will be the way to achieve the next big leap forward, particularly on the research agenda. I support what the Prime Minister said at Prime Minister’s questions yesterday—that this issue is not a matter only for world leaders, important though they are; it is a matter for every single person in the community, whether they be a world leader, a health Minister or an ordinary citizen. Everybody has a role to play.
I shall start with the people who have dementia, along with their families and their carers. When we promote policy, do collaboration or talk about international research, we must constantly remind ourselves that the people with the disease and their carers and families are usually the most expert people in the system. Therefore, the services that we provide, the quality of care and the innovations we develop have to be shaped and guided by those people. We must empower them to make their voices heard in this debate. When we bring together our creativity, our imagination and the huge brain power in the research community, we must always bring to this issue, too, our own humanity. We must remember that people with dementia are valuable and loved human beings. If we can keep that at the forefront of our minds, we will make progress and be doing absolutely the right thing.
During Question Time yesterday I mentioned a lady called Joy Watson. I met her a little while ago. She is only 55, but she has early-onset dementia. Her family was devastated. When she went into shops, she might be a little confused over her change or what she needed to order, and the shops—and sometimes the customers—would be irritated with her, tutting and asking her to hurry up. She took to wearing a badge, which she designed herself, saying “I have got Alzheimer’s; please be patient with me”. She should not need to do that. Nowadays there is a scheme—I think it is called the purple angel scheme, and Joy is promoting it—so that people can wear a purple angel on their T-shirts as a means of raising awareness in every single part of our community.
In Salford, we have worked on this agenda for a number of years. We have just formed our dementia action alliance, with 30 organisations now committed to action plans to make us, I hope, the first dementia-friendly community in Greater Manchester. As well as health, education and housing bodies, we have the Lowry arts centre and our shopping centres included in the scheme. I think we have the first private-hire taxi firm in the country to be involved in this, Mainline Sevens taxis. It has trained 400 drivers and has an account system so that people with dementia do not have to fiddle with their money when they get in a taxi. All those groups are now dementia aware. That shows the really practical things that can be done.On the research side, I am delighted to say that tomorrow, Salford university will launch the Salford Institute for Dementia, bringing together the faculty of health and social care with departments dealing with the built environment, computers, IT, arts and media—showing the multidisciplinary approach that will apply. That group will draw together and disseminate research on living well with dementia. I think this is a fabulous academic development.
Hazel Blears therefore congratulated the Prime Minister for choosing dementia as a topic he wished to talk about.
It is noteworthy that patients themselves and their carers are the most expert in these complex conditions, and their voices must be heard.
Few will disagree with this.
Resilience in the midst of austerity: a challenge for dementia wellbeing
In Prof. Felicia Huppert’s latest chapter entitled, “The state of well-being science: concepts, measures, interventions and policie”s, to appear in Interventions and Policies to Enhance Well-being (Huppert, F.A. and Cooper, C.L. (eds.) ), Prof. Huppert re-establishes the perspective that it is possible to demonstrate wellbeing even in the presence of a label of a clinical diagnosis. This aligns itself nicely with the argument which I have been advancing, that it is the possible to enhance the wellbeing of an individual with dementia through careful consideration of his or environment. For example, one could attempt to make the home or ward better designed, attempt to involve the individual with leisure activities or general activities (such as reminiscence therapy), seek to encourage adoption of assistive technologies or assisted-living technologies, or try to encourage more social activities including participation in a wider community. However, Huppert and So (2013), to establish what components comprise well-being, have examined carefully the internationally agreed criteria for the common mental disorders (as defined in DSM-IV and ICD-10) and for each symptom, listed the opposite characteristic. This resulted in a list of ten features which represent positive mental health or ‘flourishing’. These are: competence, emotional stability, engagement, meaning, optimism, positive emotion, positive relationships, resilience, self esteem, vitality.
Just as symptoms of mental illness are combined in specific ways to provide an operational definition of each of the common mental disorders, they proposed that positive features could be combined in a specific way to provide an operational definition of flourishing. The diagnostic criteria for a mental disorder do not require that all the symptoms be present; likewise, the operational definitions of flourishing (Keyes, 2002) do not require that all the features of positive feeling and functioning be present. There is currently a relative paucity of literature on the efficacy of psychological techniques such as “mindfulness” in enhancing wellbeing in individuals with dementia, but it is possible that innovative ways of improving any aspects of the multi-dimensional construct could be developed through such a technique. Among the reported benefits of mindfulness training in other populations, which are related to subjective well-being, are: reductions in stress and anxiety, increased positive mood, improved sleep quality, better emotion regulations, greater bodily awareness and increased vitality, and greater empathy (Huppert, in press.)
Clearly, ignoring the economic climate of an individual with dementia is not going to be possible, although I have thus far successfully managed to avoid such a discussion. The data reported in Huppert and So (2013) are from 2006/07, two years before the severe economic recession from which many countries have since suffered. Huppert (2013) argues that it would be very interesting to know if the recession has changed the prevalence of flourishing or its component features within and between countries, and the extent to which country rankings of the prevalence of flourishing may have altered. Relatively recent data from the Gallup World Poll show almost no impact of the economics crisis on subjective well-being in the UK (Crabtree, 2010). However, one clearly has to acknowledge the ‘social determinants of health”, famously described by Marmot (2012) as: “Mental health and mental illness are profoundly affected by the social determinants of health; psychosocial processes are important pathways by which the social environment … impact [s] on … physical and mental health … ” Indeed McKee and colleagues (McKee et al., 2012) make a constructive but profoundly depressing link between illbeing and austerity:
“For many months, the political and financial aspects of the crisis have filled the headlines. However, behind those headlines, there are many individual human stories that remain untold. They include people with chronic diseases unable to access lifesustaining medicines, persons with rare diseases who are losing income support and forced to care for themselves, and those whose hopes of a better life in the future have been dashed see no alternative but to commit suicide. So far, the discussion has been limited to finance ministers and their counterparts in the international financial institutions. Health ministers have failed to get a seat at the table. As a consequence, the impact on the health and wellbeing of ordinary people was barely considered until they made their feelings clear at the ballot box.”
More optimistically, Huppert and So (2011) argue that this parcellation of the positive wellbeing multidimensional construct may be useful for developing targeted interventions:
“If a population group is high on some features of well-being such as positive relationships, but low on others such as engagement or resilience, it is clear where interventions should be targeted.”
Psychosocial resilience is a dimension of wellbeing which perhaps will be worth considering in detail, of how an individual and immediates might be able to cope and adapt to future adversity. This indeed is reflected in a definition of psychosocial resilience as provided by Williams and Kemp (in press) as “a person’s capacity for adapting psychologically, emotionally and physically reasonably well and without lasting detriment to self, relationships or personal development in the face of adversity, threat or challenge.” Reaching a logical conclusion, whilst there might be aspects of life which encourage illbeing, a reasonable strategy might be to strengthen components which can help to improve specific aspects of wellbeing. This would not have been possible had it not been for the work of Prof. Felicia Huppert and colleagues emphasising that wellbeing is a multidimensional construct, in the same way that it is widely acknowledged that it is unhelpful to think of dementia as a unitary diagnosis.
The Department of Health (2012) policy document, “No health without mental health: implementation framework” very nicely produces a backdrop for emphasising the importance of wellbeing in dementia. Their core principles are set out “a clear and compelling vision, centred around six objectives: more people will have good mental health, more people with mental health problems will recover, more people with mental health problems will have good physical health, more people will have a positive experience of care and support, fewer people will suffer avoidable harm, and fewer people will experience stigma and discrimination“.
Notwithstanding this, it appears that the analysis of ‘living well in dementia’ is now benefiting from an approach which has led to an appreciation that no dementia is clinically the same; nobody’s wellbeing is exactly the same, because of the way in which all the contributing parts have come together. This approach is elegant, holds incredible promise for the future.
References
Crabtree, S. (2010) Britons’ wellbeing stable through economic crisis Gallup, November 24, 2010. Available at: http://www.gallup.com/poll/144938/Britons-W%20ellbeing-Stable-Economic-Crisis.aspx
Department of Health (2012) No health without mental health: implementation framework, available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/156084/No-Health-Without-Mental-Health-Implementation-Framework-Report-accessible-version.pdf.pdf
Huppert, F. (in press) The state of well-being science: concepts, measures, interventions and policies, to appear in Huppert, F.A. and Cooper, C.L. (eds.) Interventions and Policies to Enhance Well-being, Oxford: Wiley-Blackwell.
Huppert, F.A. and So, T.T.C. (2013) Flourishing across Europe: application of a new conceptual framework for defining well-being, Social Indicators Research, 110(3), pp 837-861.
Keyes, C. L. M., (2002) The mental health continuum: From languishing to flourishing in life, Journal of Health and Social Behavior, 43, 207– 222.
Marmot M. (2012) Health inequalities and mental life, Advances in Psychiatric Treatment, 18, pp. 320-322.
McKee, M., Karanikolos, M., Belcher, P., and Stuckler, D. (2012) Austerity: a failed experiment on the people of Europe. Clin Med, 12(4), pp. 346-50, available at: http://www.rcplondon.ac.uk/sites/default/files/documents/clinmed-124-p346-350-mckee.pdf.
Williams, R, and Kemp, V. (in press.) Psychosocial resilience, psychosocial care and forensic mental healthcare. In: Bailey S, Tarbuck P. (eds.) Adolescence Forensic Psychiatry, Cambridge: Cambridge University Press.
Related articles
- People with mental health issues ‘waiting 10 years for diagnosis’ (irishtimes.com)
- Foreword by Prof Facundo Manes (livingwelldementia.org)
- What is “living well”? (livingwelldementia.org)
What is “living well”?
Before contemplating approaches to ‘living well with dementia’, and how you could even measure it, we need to have an understanding of what “wellbeing” might be, and why it is currently considered important in public health policy circles and beyond.
Definition of wellbeing
The first thing to think about is: what does it actually mean to live well, in other words wellbeing?
Historically, Jahoda (1958) is usually regarded as the first person to have promoted the idea of positive mental health, which she defined in terms of six elements of positive functioning: ‘attitudes of an individual towards his own self’, ‘self actualisation’, ‘integration’, ‘autonomy’, ‘perception of reality’ and ‘environmental mastery’.
Huppert, Baylis and Keverne (2004) for their Royal Society meeting in 2004 further propose a definition of “wellbeing” as follows:
For the purposes of the Discussion Meeting, we defined wellbeing in broad terms as ‘a positive and sustainable state that allows individuals, groups or nations to thrive and flourish’. This means that at the level of an individual, wellbeing refers to psychological, physical and social states that are distinctively positive. Positive psychological states are exemplified by emotions such as happiness and contentment, attitudes such as generosity and empathy, and mental processes such as cognitive capabilities, interest and motivation. Positive physical states are characterized (sic) by vitality and physical capabilities, while positive social states include satisfying social bonds and loving relationships. Our definition of wellbeing also encompasses human resilience—the ability to survive and thrive in the face of the setbacks inherent in the process of living.
Wellbeing can be used to describe an objective state as well as a subjective experience. Objective wellbeing refers to wellbeing at the societal level; the objective facts of people’s lives, in contrast to subjective wellbeing which concerns how people actually experience their lives.
Wellbeing as a goal
Wellbeing has become an important goal in itself, both here and in the U.S. among many other jurisdictions.
Wellbeing is truly a concept that crosses across a number of different subject disciplines, and for many there are common attractions in using it as a national policy goal. Quoted by Juliet Michaelson (2012) of the New Economics Foundation Cente for Wellbeing, the head of the USA’s central bank, Federal Reserve chair Ben Bernanke, offered that:
“The ultimate purpose of economics, of course, is to understand and promote the enhancement of wellbeing. Economic measurement accordingly must encompass measures of wellbeing and its determinants.”
There are currently at least four good key reasons at least for a focus on wellbeing:
- Wellbeing indicators directly capture information about human lives. There is now substantial evidence showing that we may be able robustly to measure how people ‘feel’ about their lives, using indicators that converge with a whole range of other types of data. These have also been shown to predict future behaviour.
- Measuring wellbeing broadens the scope of an overly narrow politics. It is widely argued that politicians have become so used to their success or failure being judged according to the headline measure of economic growth that their scope of action (the gross domestic product or “GDP”) has become rather narrow. This may indeed have contributed to apathy and disenfranchisement with the contemporaneous “political process”.
- People support wellbeing as a goal for governments as well as themselves. There has long been evidence that people think wellbeing is an important goal for governments to pursue. For example, a BBC poll of 1996 found that 81% of people in the UK supported the idea that government’s prime objective should be the ‘greatest happiness’ rather than the ‘greatest wealth’.
- Measuring wellbeing is a fundamentally democratic approach. Directly measuring how people feel about their lives avoids the need for others making decisions about what is important to then: this is the much respected ‘no decision about me without me’ approach. In principle, then, this brings people’s voices into the heart of policy.
According to Norton, Matthew and Brayne (2013), population ageing over the first half of this century is likely to lead to dramatic increases in the prevalence of dementia. This will affect all regions of the world, but also (it is said) particularly developing regions. Dementia projections have been used extensively to support policy. It is therefore important these projections are as accurate as possible. By the middle of this century, around 1 in 5 of the estimated 9 billion world population are expected to be aged over 60-years, compared to around 1 in 10 in 2000 (United Nations, 2004).
Furthermore, according to Luengo-Fernandez, Leal, and Gray (2011), dementia was estimated to cost the EU €189 billion in 2007. 68% of total costs were due to informal care, 26% to social care, 5% to health care and 1% to “productivity losses”. Therefore, dementia has posed a significant economic burden to European health and social care systems, and society overall, and it is extremely likely that it will continue to do so. The EURODEM consortium found that among European studies, using similar methodologies and diagnostic criteria, there were only trivial differences in the age-specific prevalence of dementia (twelve studies) and DAT (six centres), concluding that ecological comparisons were unlikely to be informative about aetiology (Rocca et al., 1991).
Helpful sources
Jahoda, M. (1958) Current concepts of positive mental health, New York: Basic Books.
Huppert, F.A., Baylis, N., and Keverne, B. (2004) Introduction: why do we need a science of wellbeing?”, Phil Trans R Soc Lond B, 359, pp. 1331–1332.
Luengo-Fernandez, R., Leal, J., and Gray, A.M. (2011) Cost of dementia in the pre-enlargement countries of the European Union. J Alzheimers Dis, 27(1), pp. 187-96.
Michaelson, J. (and the New Economics Foundation) (2012) The importance of measuring wellbeing http://www.neweconomics.org/blog/entry/the-importance-of-measuring-well-being.
Norton, S, Matthews, FE, and Brayne, C. (2013) A commentary on studies presenting projections of the future prevalence of dementia, BMC Public Health, 13, pp. 1.
Rocca, W.A., Hofman, A., Brayne, C., Breteler, M.M.B., Clarke, M., Copeland J.R.M., Dartigues, J.F., Engedal, K., Hagnell, O., Heeren T.J., et al. Frequency and distribution of Alzheimer’s disease in Europe: a collaborative study of 1980–1990 prevalence findings. The EURODEM-Prevalence Research Group. Ann Neurol 1991;30:381–90.
United Nations (2004) World population to 2300, available at: http://www.un.org/esa/population/publications/longrange2/WorldPop2300final.pdf.
Foreword to my book 'Living well with dementia' by Prof John Hodges
This is the Foreword to my book entitled ‘Living well with dementia‘, a 18-chapter book looking at the concept of living well in dementia, and practical ways in which it might be achieved. Whilst the book is written by me (Shibley), I am honoured that the Foreword is written by Prof John Hodges.
Prof Hodges’ biography is as follows:
John Hodges trained in medicine and psychiatry in London, Southampton and Oxford before gravitating to neurology and becoming enamoured by neuropsychology. In 1990, he was appointed a University Lecturer in Cambridge and in 1997 became MRC Professor of Behaviour Neurology. A sabbatical in Sydney in 2002 with Glenda Halliday rekindled a love of sea, sun and surf which culminated in a move here in 2007. He has written over 400 papers on aspects of neuropsychology (especially memory and languages) and dementia, plus six books. He is building a multidisciplinary research group focusing on aspects of frontotemporal dementia.
Many posts like this have originally appeared on the blog of the ‘Socialist Health Association’. For a biography of the author (Shibley), please go here.
Shibley’s CV is here.
Wellbeing in dementia: Norm McNamara's interview for 'Dementia Awareness Day'
The ‘Wellbeing in Dementia’ initiative
To follow this initiative on twitter, please follow @dementialives here
To read about the importance of wellbeing in dementia care, please look at the blog here.
Who is Norm McNamara, and what is Dementia Awareness Day?
Norm McNamara (tweet: @Norrms) was diagnosed with early onset Alzheimer’s around 4 years ago and since then has dedicated his life to raising awareness. Last year he organised the first Dementia Awareness Day in the hope of raising as much awareness as possible with DAD events being held up and down the country. This year, Dementia Awareness Day will take place on September 15th and the charity chosen to benefit this year is the Lewy Body’s Society UK.
Interview
1. What is the motivation behind Dementia Awareness Day?
My biggest motivation has to be my family and eleven grandchildren! How could I possibly give up when I see the hope in their eyes and the smiles on their faces, what kind of example would that be if I just gave up and didn’t fight this awful illness?
2. What do you hope to achieve from D.A.D?
We hope to raise as much awareness as possible; awareness about this disease is the key to everything. It will first of all reduce the stigma that’s attached to it, and as people start to talk about it openly and not in whispers, funding will follow and things will improve tenfold.
3. What will be happening on the day?
This year is bigger and better than ever!! We have balloons being released all over the world at 3pm. The Lewy Body’s Sunshine Coast of Australia is also holding a HUGE event in the name of DAD day so it truly is a global event. Here in the UK we are holding a huge event in Torquay and Torquay United are having a collection the week after at a home game. Widdecombe House Torquay is also holding a garden party on the day and coffee mornings are going on in care homes across Torbay. In my home town of Boton they are holding a DAD day awareness event and some homes in Gloucester, Cornwall and others places are celebrating it!
4. How can people get involved?
There are lots of ways to get involved. Head down to your nearest event, support the cause, raise money and most importantly, spread the word. I would just like to state at this point I am just one man, on a computer , in my bedroom, I am disabled and do not work, and we now live in a supported living scheme. If I (as just one ordinary Joe) can organise so much raising awareness about dementia, can you imagine if we all shout “I Can I Will” and “Stand Up and Speak Out” what can really happen?
5. What aspect of dementia awareness needs most attention?
Acceptance, and when I say acceptance I mean not only by the person with a dementia diagnosis but also their family and friends.
6. What are you looking forward to the most on D.A.D?
I am looking forward to raising awareness, meeting new people, sharing the knowledge of this disease and dispelling the myths that surround it.
7. What is the future for D.A.D?
I would like to see D.A.D day recognised as a national dementia awareness day by all dementia related charities and maybe even become a registered charity itself one day helping to install admiral nurses all over the country.
You can find out more at the D.A.D blog
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