Vlog on @KateSwaffer’s “What the hell happened to my brain?” (pub Jan 21, 2016)

I received this morning my copy of “What the hell happened to my brain?” written by leading international advocate in dementia, Kate Swaffer. This book is due to be released by Jessica Kingsley Publishers on January 21st 2016. I received an advance copy as I wrote one of the Forewords. The other Forewords have been written by Dr Richard Taylor Ph.D. and Glenn Rees AM Chair of Alzheimer’s Disease International.

Kate is Chair of Dementia Alliance International, the international stakeholder group run by people living with dementia. I feel this book will be incredibly useful for a diverse audience, including doctors – especially those completing specialist training in medicine (general medicine, neurology, psychiatry, surgery especially) – as well as members of the public newly diagnosed with dementia.

I know Kate Swaffer held Dr Richard Taylor Ph.D. in very high esteem. I found the chapter dedicated to him, and his Foreword, very moving.

This book is all about living ‘beyond a diagnosis of dementia” – Kate’s phraseology TM. Kate was the first to articulate and explain the phenomenon of ‘prescribed disengagement’ how people at the point of diagnosis are often put into a process of managed decline when they could be given opportunities for an enriched life. This of course goes together with essential practical help, such as things you can do such as driving. It also explodes myths out of the water – and ignites a provocative debate on the ‘big money’ in dementia, disability discrimination, an urgent need to rework the medical label of ‘challenging behaviours’, early vs late diagnosis, stigma, loneliness, inclusion, and guilt.

It’s not hyperbolic, nor puffery, to claim that you won’t be able to put this book down. It’s an outstanding book, and I strongly commend it to you.


Dr Shibley Rahman  London : 15 January 2016



It’s not the word ‘dementia’ itself which is stigmatising, but the words which are used around it

“the truth is dementia now stands alongside cancer as one of the greatest enemies of humanity”

Living longer, living better? Lessons from the Australian jurisdiction for dementia policy.

In a missive from the Australian Government, Department of Health, it is stated that,

Dementia is predicted to become the leading cause of disability in Australia by 2016. For these reasons, the Government will take a proposal to the next meeting of Commonwealth, State and Territory Health Ministers that dementia be added to the existing list of eight National Health Priorities.”

Indeed, their Government is introducing a new Dementia Supplement to provide additional financial assistance for dementia care in recognition of the additional costs involved. There will be a significant increase in the number of people eligible for additional assistance as a result of this measure.

This year, at the #ADI2104 conference currently being held in San Juan, Puerto Rico, Noriyo Washizu from the Alzheimer’s Association Japan described how people with dementia can need support and “care in all areas of life 24/7. To achieve Living well with dementia, both of the social resources to meet the special needs of PWDs and their families and case managements ability to utilize them with a sense of ethics are crucial. Along with the development of an aging society, case management in dementia is required to focus more on the whole community and to be more integrated.”

Considering dementia as a form of disability is an important policy issue. In the English jurisdiction, a disability has to be sustained for a certain arbitrary period of time to satisfy the case law. For a chronic progressive irreversible dementia, i.e. the vast majority of dementias such as Alzheimer’s disease, this is likely to be the case. This therefore throws the legal onus onto one of equality, as disability is a protected characteristic, and away from the more gimmicky offerings popular in the English jurisdiction which in reality offer no additional financial support for people with dementia or their carers.

Kate Swaffer, affiliated in this context to the University of South Australia, Adelaide, Australia, had a chance to present her ‘prescribed disengagement’ thesis on September 3 May 2014.

Kate described in November 2012 the following:

Following diagnosis, my specialists all told me ‘to give up work, give up study, and go home for the time I had left’! I quickly termed this prescribed disengagement, and thankfully I eventually chose to ignore it. Why is it that one day I was studying a double degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give up work, and give up life as I knew it, and start ‘living’? This prescribed dis-engagement sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.

She yesterday then described two models of care, one experience supporting continuing engagement, including employment for people with younger onset dementia; the medical model of Prescribed Disengagement versus the disAbility model of Continuing Engagement used in universities.

Following a diagnosis of younger onset dementia, Kate was advised to give up work, give up tertiary studies, and go home to live for the time she had left. It was at this time she termed this Prescribed Disengagement.

Kate writes in her abstract,

“The medical model of care prescribed disengaging from my pre-diagnosis life, which supports and exacerbates social inequality, stigma, isolation and discrimination. If I had been advised to use the disability model of care beyond my university campus, I would have been able to remain in paid employment, and if the symptoms of dementia were seen as disabilities, my employer would have been legally obliged to support continuing employment.”

This is significant from a policy perspective. If there were a system of ‘care coordinators’, perhaps who had especial expertise in advocacy for issues concerning the dementias, it might be that such coordinators could lobby local authorities for financial support so that they could meet their legal obligations in making ‘reasonable adjustments’ for people with dementia. This should not be something that people with dementia should be expected to ‘fight for’. It should be an essential aspect of dementia care and support provision.

Kate also briefly discussed a volunteering project in Adelaide South Australia which supports “the disability model of care.”

Kate writes,

“Treating the symptoms of dementia as disabilities rather than managing them in ways that restrict are vital to well-being, quality of life and motivation. The significant and positive social and financial impact on the person with dementia, their families, and society of being able to stay meaningfully engaged, as well as choosing to remain employed, and its impact on a person’s quality of life, is the final topic of this presentation. ”

And this, ladies and gentlemen, is what I believe policy should be heading to.

Not ‘counting the cost’ of people with dementia, framing the article as a financial burden we should all resent paying for, but valuing the contribution of people with dementia and close caregivers for what they can bring to society in a whole manner of ways.

And of course people with dementia need to be recognised as individuals, with diversity. The massive problem with the term ‘dementia friendly’ is that it encourages a notion of dementia as a homogeneous mass with all one big diagnosis, label and severity, and encourages a ‘them against us’ approach. Being inclusive and integrated are not necessarily the same.


Kate Swaffer’s “Prescribed Disengagement”, “the sick role” and living with dementia

“Re-investing in life after a diagnosis of dementia” was a blogpost written by Kate Swaffer on January 20th 2014.

Kate’s experiences are fairly typical unfortunately.

“Following a diagnosis of dementia, most people are told to go home, give up work, in my case, give up study, and put all the planning in place for their demise such as their wills.”

“Their families and partners are also  told they will have to give up work soon to become full time ’carers’.  Considering residential care facilities is also suggested.”

“All of this advice is well-meaning, but based on a lack of education, and myths about how people can live with dementia. This sets us all up to live a life without hope or any sense of a future, and destroys our sense of future well being; it can mean even the person with dementia behaves like a victim, and many times their care partner as a martyr.”

Kate Swaffer has termed this “Prescribed Disengagement”, and it is clear  to Kate from the huge numbers of people with dementia who are standing up and speaking out as advocates that there is still a good life to live even after a diagnosis of dementia.

Kate, who herself is a person living actively with a dementia, has suggested quite, at first sight, startling advice.

She advises everyone, “who has been diagnosed with dementia and who has done what the doctors have prescribed, is to ignore their advice, and re-invest in life.”

“I’m not talking about money, but about living well and continuing to live you pre-diagnosis life for as long as possible. Sure, get your wills and other end of life issues sorted out because dementia is a terminal illness, but there is no need not to fight to slow down the deterioration.”

“Alzheimer’s Disease International have a Charter that says “I can live well with dementia”, and this is not a joke, it can be done. They are serious about, and I am serious about it.”

And this advice from a person with dementia poses severe difficulties for the traditional narrative of dementia, needing medicalisation as a long-term condition.

In the 1950s, a founding father of medical sociology, Talcott Parsons, described illness as deviance -as health is generally necessary for a functional society – which thrust the ill person into the sick role (Parsons, T. The Social System. 1951. Glencoe, IL: The Free Press).

This role afforded the afflicted certain rights, but also certain obligations, which were described by Parsons in his four famous postulates:

  1. The person is not responsible for assuming the sick role.
  2. The sick person is exempted from carrying out some or all of normal social duties (e.g. work, family).
  3. The sick person must try and get well – the sick role is only a temporary phase.
  4. In order to get well, the sick person needs to seek and submit to appropriate medical care.

It is worrying that people with dementia should be forced to adopt an ‘out of sight out of mind’ position in society. This may be a reaction to the stigma and discrimination that people with dementia can experience.

These postulates, and societal attitudes towards illness, were vividly captured in the films such as Doctor in the House and Carry on Doctor.

The patient, in gown or pyjamas (thereby identifying and labelling them as ill), listened anxiously to the dispassionate words of the august surgeon who kindly attended their bedside, desperate for any clue as to when he or she might be released from hospital back into ‘normal’ society.


Dr Kate Granger (@KateGranger) recently described the powerful effect of pyjamas here.

Dementia is not on the whole  ’caused’ by a ‘bad lifestyle’ – many individuals with dementia have had a strong genetic component of sorts. However, changes in the environment can be helpful for a long term condition such as dementia.

Marked environmental change for a person with dementia can of course be extremely unsettling, causing both physical and mental distress. However, appropriate signage in the environments, attractive design of homes and wards, and supportive built environments, can all, for example, improve wellbeing in dementia.

The medical profession has accordingly had to adapt to the demise of the traditional sick role. We no longer expect the subservient patient to submit to our bedside capture.

Subjecting persons with dementia to a whole variety of drugs that do not work that well for many, such as potentially anti-depressants, anti-psychotics or anti-memory loss is a subtle attempt at medicalisation capture, but is indeed living on borrowed time as other professions take over where the medics have failed.

Whole person or integrated care will do a lot here to help.

Assistive technology and internet technologies can in combination encourage independence as well as participation with wider social networks, but criticially may now bee at the convenience of persons in coming with health and illness services, rather than the convenience of the service.

Kate Swaffer advises other people with dementia that they should consider empowerment perhaps through groups who genuinely care.

I’m of course proud that the Scottish Dementia Working Group is serious about it. The European Dementia Working Group is serious about it. The Alzheimer’s Australia Dementia Advisory Committee is also serious about.

People with dementia make up the membership of these groups. And please don’t forget the Dementia Alliance International  group, plus Kate’s page here which also highlights how to help with their important fundraising initiatives at a practical level.