Living well with dementia

My final book on living with dementia: seeing the big picture

Shibley Rahman 0 Comments

The picture above was taken at Ljubljana in Slovenia where we had the 25th Alzheimer Europe conference on the theme of “Dementia: Putting strategies and research into practice”.

Perhaps one of the most overused terms of the century is ‘breaking down the silo’. I don’t know enough about the engineering of silos to comment, thankfully.

I wish to explain in my blogpost here the overall direction of travel for my final book to do with dementia. Like the previous books, it will be heavily guided by the current literature from the brilliant people doing dementia research around the world. This research comes from a number of different angles as usual: looking for therapies for particular dementias, as well as research which is more geared towards economics, law, psychology, or cognitive neuroscience. And crucially the lived experiences – great, good, and bad.

My final book will be on enhancing health in dementia. Health is not simply the absence of illness and disease, and the books will resume the social model of disability not the biomedical model. For my book, I will need to draw on current evidence and guidelines particularly from the medicine and nursing professions nonetheless, but only as relevant to “the big picture”.

The topics will mark a clear departure from my previous books ‘Living well with dementia: the importance of the person and the environment’ and ‘Living better with dementia: good practice and innovation” in some areas. There can be no denying that persons living with dementia in residential homes and at home are also living as part of “dementia friendly communities”.

I am particularly mindful of imminent developments in quality of post diagnostic support from the Alzheimer’s Society, Dementia UK, Care England, Care Quality Commission and NHS England.

Book 1

Details here

Bk1

Book 2

Details here

Bk2

Prof Sube Banerjee, Professor for Dementia at Brighton and Sussex Medical School, has kindly agreed to write the main Foreword for my third book. Sube will be joined by Lisa Rodrigues, formerly chief executive of Sussex Foundation Partnership Trust. Joining both Sube and Lisa will be Lucy Frost, clinical nursing specialist and campaigner.

They in fact join a great line up of brilliant people who have contributed forewords to my previous two books: namely, Kate Swaffer, Chris Roberts, Beth Britton, Prof Facundo Manes, Prof John Hodges and Sally Marciano.

The first book was written around the NICE Quality Standard 30 on “Supporting people to live well with dementia”. It was written just after the hugely successful Prime Minister’s Dementia Challenge, which coincided with a strong leadership drive to do with dementia around the world including the G8 and G7 legacy events. Another major event was the one hosted by WHO and Alzheimer’s Disease International in Geneva in March 2015.

My first book had a bias towards English dementia policy. My second book took a much more holistic view, and indeed included two chapters on global dementia strategies and diversity. In my second book, I introduced the importance of integrated care and whole person care in ‘seeing the person, not the dementia’.

In my third book, I will need to come back to recent service innovations in England, including the ‘vanguards’ and the ‘new models of care’. There is however a tendency though to be attracted to the ‘new and exciting’, and not to give proper scrutiny to on-running threads in policy.

It is going to be necessary to refer both to the developments in England’s policy, including also developments in system redesigns offering better value and system leadership, in my third book. I would also like to draw on best practice from other countries, for example the Alzheimer Society of Ireland’s anti-stigma campaign, or Scotland’s ‘Focus on Dementia’. The lead given on person-centred dementia care by ALLIANCE Scotland will be reflected.

There are a number of workstreams in Europe which are particularly relevant to this third book. I wish to address fairly addressing the health needs of persons living with dementia, whether in care at home or in a residential setting (such as a care home or nursing home). I should like this book also to retain the strong human rights theme developed in book 2, with discussion of how the UN Convention on Rights for Persons with Disabilities could be applied for dementia around the world.

My hope for the third book, like the previous books, will be that the content will be quite generic. It is hoped that I will showcase some of the outstanding work that has recently begun to emerge in journals and at conferences. I myself have been to, and spoken at, a number of conferences in 2015. This has been enormously helpful for me in weighing up the ‘hot topics’ for my book.

Quality of care is the overriding theme of my book. In keeping with parity of esteem, I wish to address aspects of mental health in a wide context (e.g. insight, effects of sleep hygiene, anxiety and depression) on a par with physical health (e.g. infections, frailty, fall, fractures).

 

I introduced rehabilitation and recovery in book 2, and I wish to elaborate on this work in discussion of life story, reminiscence, cognitive stimulation therapy, and wider approaches.

I wish to look at the overused phrase ‘meaningful activities’, and to think about the place of these activities in both care at home and in residential homes.

I will look at the importance of relationships not only between residents and others to improve quality of life and care but also between staff to improve leadership and staff skills. I will also consider intimate relationships and sexuality, and spirituality.

All patients in all care settings in this jurisdiction are entitled to the best standards of NHS and social care, and certainly free from abuse and neglect. Intelligent use of technology is paramount for integrated care, including electronic health records and mitigation against prescribing errors. Many persons with dementia live with important co-morbidity, and technology is an important consideration in self-management.

For an integrated health and care system to work, persons with dementia should attend acute care only when necessary, care transitions should be facilitated as should patient flow and appropriate use of other healthcare settings. Careful case management including dementia advisors, dementia support workers and clinical nursing specialists, will be extremely important.

I intend to devote a chapter to end of life, particularly drawing on high quality research from palliative medicine. I wish to consider advance care planning, difficult conversations, anticipatory grief, reactions of residents, place of death, end of life in residential care, and dementia as a terminal disease.

Finally, it cannot be assumed that all persons living with dementia ultimately wish to live in a care home. Therefore, I will consider care at home, respite care, living alone with dementia; as well as possible future developments in extra care housing, smart homes, and the implications for the ‘aging in place’ policy strand.

I am hoping to cover this all in thirteen chapters in about 300 pages. I do not wish to promote any particular chain of care homes, but I would like to provide case studies of great practice. It is my intention to continue consulting as widely as possible. As regulation is a pervasive theme in this book, I intend to meet up with Andrea Sutcliffe from the Care Quality Commission. I also intend to liaise closely with people who have experienced the services in different regions of the UK including Wales, through, for example, voluntary sector organisations such as Age UK.

Living better with dementia

Shibley Rahman 0 Comments

I had barely known Chris Roberts, new onto the Twitter platform, when he mooted that the title for the book which I had just published didn’t convey the right perspective.

rahman1_061113-2

At first, I wondered who this mysterious ‘Chris Roberts’ was. Chris didn’t seem like a troll to me.

It did however dawn on me, rather belatedly to the book production process, that Chris is absolutely right.

I’ve now met complete strangers all around the world who’ve enjoyed the book. One person even recommended the book to me, to which I replied that I had written it.

“Living well with dementia” sounds very much like somebody external decided what ‘standards’ are for living well (the term is actually the name of the 2009 English dementia strategy).

It has the potential to make people living with dementia feel bad if they have an “off” day (which we are all entitled to have).

At the very worst, it is setting up people to fail, as it is inevitable that there will be aspects of all our lives which are not “well”.

But, having said all that, I feel my first book was entirely justified.

It has even been called a ‘game changer’ by some, but I think I did want to send out a message to my colleagues in the medical profession that focusing on deficits all the time was bound to be demoralising.

It should be much more worthwhile to focus on what people can do.

It still remains one of the few books taking a eagle eye view of dementia, reflecting contemporary research evidence, embracing advocacy, design of homes and built environments, cognitive aspects, and dementia friendly communities.

I remember quite a bit of hostility from the medical profession as to why the book took such a multidisciplinary approach, but my own training has been multidisiplinary, and my personal political philosophy is one of equality and justice.

And this hostility was said with a twang of ‘we know best‘ – which was horrible.

I feel that my first book, published in February 2014, establishes for a wide audience why ‘Living well with dementia’ is more than a mere slogan, in that I hope ‘no decision about us without us’ is more than a chant.

Chris and I, as it happens, are just about to mount Ayers Rock, so to speak.

IMG_0393

I am honoured that Chris, Kate Swaffer and Beth Britton have all written forewords to my follow up book ‘Living better with dementia’, to be published by Jessica Kingsley Publishers on July 21st 2015.

image001

I think it’s only fair to warn you that it is a very different book to my first one. The full table of contents for ‘Living better with dementia’ is provided here.

I was profoundly influenced by the 24th Alzheimer Europe conference last year – 2014 – which took as its theme, “Dignity and autonomy in dementia”.

I was very much impressed by the listening to individuals living with dementia at that conference, and at the Alzheimer’s Disease International conference in Perth Western Australia where I was indeed on the international advisory board.

Dignity and autonomy are central to ‘rights based approaches’. All of us are entitled to human rights under the auspices of international law.

Across a number of jurisdictions there’s been a fundamental resetting of the compass from ‘friendliness’ to ‘inclusivity’, and inclusivity under human rights and equality law is a pivotal issue.

Furthermore, I feel strongly that any discussion of ‘dementia friendly communities’ must embrace fully the social determinants of health, or inequalities, in thinking about the ‘consumer experience’, such as housing, transport and education. These policy strands must be brought together at this point of time, I feel.

We are undoubtedly in a much better place than simply a few years ago, though there’s much more to be done.

It’s now patently obvious that in England health and social care need to be fully integrated, to further personhood and to avoid people languishing in hospital due to delayed discharge.

There now has to be an open discussion now about people being signposted to appropriate services too (for example speech and language therapy for a person living with a primary progressive aphasia-type dementia).

But it’s simply not good enough to have a lot of signposts with decimated services in reality. I don’t apologise therefore for introducing whole person care and dementia in my book.

I was struck by how other jurisdictions, particularly low and middle income countries, were trying best to help people living with dementia.

Equity in diagnosis and service provision is now a big deal.

Also, the appropriate allocation of resources is fundamental – and particularly so as regards the younger onset dementia population who may wish to find hope through appropriate services as well as through new therapies or ‘Big Data’.

I don’t deny the crucial rôle a dementia advisor can play, but the case now for a national network of clinical nursing specialists I believe.

They are best placed to produce personalised care plans (and we need consistent standards for this across jurisdictions), seeking out health and care problems before they happen.

It’s known that dementia co-exists with many medical morbidities such as frailty. So somebody who can offer continuity of care has much to offer the ‘year of care’ for dementia under the construct of whole person care.

Howeverso defined, there are clearly big issues with not seeing the big picture. Eating well with dementia is as much about the mealtime environment and attention to the senses as it is about the foods themselves. Incontinence is as much about the environment around the person with dementia as it is about a discussion of sanitary pads and embodiment.

The greater attention to dementia has not been without problems. Some people have inadvertently, by accident, introduced stigma by campaigning on dementia.

Language is important, for example in the overzealous use of the word ‘burden’. We are at last making ourselves familiar with the notion that remarkable talents in art and creativity are unleashed in some people as a dementia progresses.

Also, there is something especially remarkable about the perception of music, causing memories to be unlocked. I, for the first time in my book (to my knowledge), provide a cognitive neural architecture of how sporting memories are unlocked by structures in the human brain to retrieve a ‘gist’, and to improve wellbeing.

Whilst I continue to marvel at conferences including panel discussions on the ‘patient perspective’ without a representative living with dementia, “in my bones” I feel things are changing.

There was quite a huge backlash at the 2015 ADI Conference against some ‘person centred care’ not being person focussed at all, like a form of ‘prescription’.

There was a noticeable movement against “BPSD” and “challenging behaviours” as many of us pointed that dosing people up to the eyeballs to shut them up is completely offensive, when there is concomitantly no search for a root cause in a breakdown of communication.

One person’s ‘agitation’ and ‘aggression’ is how many of us behave when we’re simply pissed off.

But the fact that this narrative is changing is a huge cultural change which has been effected globally, and has had repercussions of the volume of antipsychotic prescriptions. I believe strongly further system change is desirable and possible with elected representatives of people living with dementia taking the lead on service provision and research.

My new book “Living better with dementia” is merely a snapshot of where we are in England at this particular time, at a time of great political and social upheaval.

Where now for the English dementia strategy? My views on policy. #kfdementia

Shibley Rahman 0 Comments

It is estimated that in 2015 there will be 850,000 people living with dementia.

Having decided at the beginning of last year that I would to any conferences on dementia, I found myself attending the Alzheimer’s Show in London Olympia and Manchester; the Alzheimer’s Association conference in Copenhagen of a book signing, Alzheimer’s Europe conference in Glasgow (which was themed on autonomy and dignity; and human rights), Alzheimer’s BRACE in Bristol on the future, Dementia Action Alliance Annual conference 2015 and the Dementia Action Alliance Carers’ Call to Action 2015. So, in other words, I utterly failed.

I will be a guest on a panel in the plenary discussion for “Leading Change in Dementia Diagnosis and Support: Actions to Inform Future National Strategy” to be held at the King’s Fund on Tuesday 24th February 2015.

Full details of this one-day conference are here.

The hashtag for this event is

#kfdementia

.

Details of our discussion are as follows.

3.40pm Panel discussion: shaping a new national strategyTake this opportunity to put your comments and questions to our expert panel about the key issues that need to be addressed when designing and delivering the next national strategy. George McNamara, Head of Policy and Public Affairs, Alzheimer’s Society in conversation with:

  • James Cross, Area Manager and National Lead for Dementia and Mental Health, Skills for Care
  • Rachel Niblock, Carer’s Call to Action Coordinator, Dementia Action Alliance (invited)
  • Gary Rycroft, Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
  • Beth Britton, Expert by Experience

Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger

  • Dr Shibley Rahman, Academic in Policy of Living Well with Dementia
  • Chris Roberts, Expert by Experience

Chris is in his early 50s and is living with young onset vascular dementia. Chris is a dementia friend champion and writes a regular blog to raise awareness.

The following are very familiar “mutual tweeps” to me, and I wish them all well for their involvement on the day too.

  • Professor Alistair Burns (@ABurns1907), National Clinical Director for Dementia
    NHS England and Professor of Old Age Psychiatry, University of Manchester
  • Jean Tottie (@Jean_Tottie), Chair of the Life Story Network and Former Carer
  • Jeremy Hughes (@JeremyHughesAlz), Chief Executive, Alzheimer’s Society
  • Dr Martin Brunet (@DocMartin68), GP, Programme Director, Guildford GP Training Scheme
  • Rachel Thompson (@raheli01), Admiral Nurses Lead, Dementia UK (invited)
  • George McNamara (@George_McNamara), Head of Policy and Public Affairs, Alzheimer’s Society
  • Richard Humphries (@RichardatKF), Assistant Director of Policy, The King’s Fund
  • Beth Britton (@BethyB1886), Expert by Experience
    Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger
  • Gary Rycroft (@garyrycroft), Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
  • Chris Roberts (@mason4233), Expert by Experience
  • Tony Jameson Allen (@SportsMemNet), Director, Sporting Memories Network, and Winner of the Best National Initiative Award at Alzheimer’s Society National Dementia Friendly Awards 2014

 Last year, I got off my backside and published my first book on dementia. Called “Living well with dementia: the importance of the person and the environment“, the aim of it was not to sell the ideology of ‘person centred care‘. It was instead a well meant introduction to the original work of Prof Tom Kitwood and personhood, which has been pivotal in double declutching away from the Pharma stranglehood on dementia postdiagnost pathways. My point was that a person living with dementia had a past and present which were going to influence his or her future, and an interaction with the environment (such as the outside world or ‘built environment’, assistive technology, design of the home, design of the ward, dementia friendly communities) were major determinants of a positive wellbeing.

The book was broad-ranging, and I felt signified a change in direction of the narrative away from ‘treatments for dementia’. I also tried to cover in a balanced and fair way how the National Screening Committee had arrived at their original decision not to recommend screening for dementia. This decision has now been upheld. As it happens, I agree with the conclusion of the National Screening Committee, but for slightly different reasons. I feel a lot of people focus on the lack of sensitive and specific inexpensive screening tests – and this must be correct. But I also feel that because of the minimal effort to build up an extensive coherent evidence base on the effect of psychosocial interventions on living well with dementia, you are never going to be able to satisfy the last requirement, of improving morbidity (if you cannot improve mortality).

I have previously written about this here.

I essentially don’t want to rain on the parade of wanting to find a cure or effective symptomatic treatments before 2025. But this expectation, I feel, has to be much better, as the track record in developing treatments thus far has been poor. It is now well appreciated that G8 dementia was ultimately contrived as a reaction to Big Pharma on dementia, and it must be acknowledged, I feel, resources allocated into Pharma should not be at the expense of relatively inexpensive methods for promoting living well with dementia for people who are currently living with a diagnosis.

My original contents were therefore as follows:

Foreword by Professor John R Hodges; Foreword by Sally- Ann Marciano;Foreword by Professor Facundo Manes; Acknowledgements; Introduction; What is ‘living well’?; Measuring living well with dementia; Socio-economic arguments for promoting living well with dementia; A public health perspective on living well with 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 that 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 and the innovation culture; The importance of built environments for living well with dementia; Dementia- friendly communities and living well with dementia; Conclusion; Index.

The essence of my emotions about ‘living well with dementia’ is that living well with dementia is not a slogan to sell a product or service. It is a genuine change in philosophy from the medical model, of diagnosis and treatment, to one which requires a long term care revolution.  As Prof Sube Banerjee said last year at the Dementia Action Alliance annual conference, we don’t need high volume diagnoses which are of low quality; although we all agree that it is unacceptable that people should be languishing for ages waiting for a diagnosis, and diagnostic rates of people who want to be diagnosed appear poor. We need high quality diagnoses. And even Baroness Sally Greengross, the Chair of the All Party Parliamentary Group for dementia, readily admits that the post-diagnostic care and support could and should be much better.

Against quite a lot of resistance from people in the medical profession which at best was complete indifference and lack of recognition of my work, I found many people in the general public who have thanked me for my work. I am completely independent, so I do not draw an income from any of my work apart from minimal royalties for the book. I paid my way to go to all conferences I went to last year. I will again be paying my own way for travel and accommodation to go to the 30th Alzheimer’s Disease International conference in April 2015 in Perth, on “cure, care and the lived experience“.

I was specifically asked last year by a panel representing the General Medical Council which people had benefited the most from my book. They expected me to say Doctors, but in all honesty I reported that the book had been extremely positively received by caregivers and people with dementia.

And I was staggered when a colleague of mine sent out this innocuous tweet which was well receive which had 151 ‘favourites’.

tweet

I do passionately want things to change for people with dementia and caregivers, but I don’t think of myself as a player in change. I don’t call myself anything in wanting change to living well with dementia; this is particularly because I really don’t believe in job descriptions or titles. I get fussy about the fact I am a person living well with recovery from alcohol, and physically disabled, but I am not ‘ill’ and as such I don’t see myself as a ‘patient’. I am on the medical register, but I do not feel defined by that (I have spent a few years not on the medical register due to consequences from when I was actually exhibiting symptoms of an illness). I have written numerous papers and two books on dementia, but I do not see my self as an ‘academic’. But I am hugely passionate about English and global policy.

I don’t want post-diagnostic care and support in my jurisdiction to be so haphazard. I totally sign up to the drive towards better inclusivity and accessibility for people with dementia, but I personally wouldn’t call this policy drive in this country or abroad “dementia friendly communities”. I would feel uneasy with a policy called “black friendly communities” or “gay friendly communities”, as these terms encourage division for me. Besides, I know from my personal experience with disability that all manifestations of disability are not necessarily evident to external observers. To take as an example, I see double all the time due to a problem with my brain, after my six week coma due to meningitis in 2007 when I was in a coma. But no-one, from looking at me, would know that. I understand that some people who are disabled, even if they fit the ‘criteria’ of the term, do not wish to call themselves ‘disabled’.

But the point is that there is now extensive legal advice about the relationship between equality and human rights law and mental health (for example chapter 3 in the new code of practice over the Mental Health Act just published). I have in fact been invited to be on a panel to review what I anticipate to be a very influential document looking at how the law is influencing dementia policy from the Mental Health Foundation early this year. Putting this stuff on a legal footing means that it’s a serious requirement for facilities to be more than aspiration in meeting ‘dementia friendliness‘; it then becomes a legal obligation. Under this view, one would provide adequate signage for people known to have spatial navigation difficulties from a dementia, in the same way that you might build a wheelchair ramp for employees who used wheelchairs in your company.

I feel that this narrative is moving my way, and in the direction away from being given your diagnosis and the conclusion ‘nothing can be done’. Kate Swaffer, in Australia, has elegantly articulated this in detail as “prescribed disengagement” (for an excellent article on this, please see here). Kate has also written a paper on stigma in the Dementia Journal, which is particularly interesting as Kate lives with a dementia herself.

It is a general ignorance of dementia that was thought to contribute to stigma and discrimination against dementia. I often ask London cabbies what they know about dementia; these individuals tend to be extremely well informed about many things, but I have found that unless they have a personal ‘connection’ with someone with dementia they can know very little (but are extremely regretful about not knowing more). The “Dementia Friends” in the UK jurisdiction had an aspiration of making one million ‘dementia friends’, a figure arbitrarily plucked out of nowhere, but presumably based on the successful Japanese “befriending” campaigns.

//www.youtube-nocookie.com/embed/VD3epu4SB2Y

They had a target of one million ‘dementia friends’ by March 2015 originally, but I understand that this initiative will now run for the whole of the year. And, at the time of speaking, they look as if they might just make it, according to their website:

friends

I am a “Dementia Friends Champion”. I did my own Ph.D. in dementia at Cambridge under Prof John Hodges. I was the first person in the world to suggest a cognitive method for diagnosing behavioural variant frontotemporal dementia and explain its rationale. This paper is even cited in the chapter on dementia in the current Oxford Textbook of Medicine. I quite enjoy my sessions. I invariably get asked tougher questions in these sessions, which are well received, than I have ever received in academic conferences.

I have no doubt whatsoever that England will have its second national policy soon for 2015-20. An influential report from Alzheimer’s Disease International looked at the value of national plans in an excellent report last year. I have no involvement with the formation of the new strategy, but the composition of the group has been clearly provided.

Members of the ‘Dementia Advisory Group’ are:

  • Chair Clara Swinson, Department of Health
  • Deputy Chair Lorraine Jackson (Deputy), Department of Health
  • Jeremy Hughes, Alzheimer’s Society
  • Tom Wright, Age UK
  • Helena Herklots, Carers UK
  • Bruce Bovill, Carer
  • Joy Watson and Tony Watson, person living with dementia and carer
  • Graeme Whippy, Lloyds Banking Group (representative from the PM Challenge Dementia Friendly Communities Champion Group)
  • Sarah Pickup, Hertfordshire County Council (representative from the PM Challenge Health and Care Champion Group)
  • Martin Rossor, UCL (representative from the PM Challenge Research Champion Group)
  • Paul Lincoln, UK Health Forum
  • Helen Kay, The Local Government Association
  • David Pearson, The Association of Directors of Adult Social Services
  • Hilda Hayo, Chief Executive of Dementia UK
  • Graham Stokes, Chair of Dementia Action Alliance
  • Dawn Brooker, The University of Worcester
  • Martin Knapp, London School of Economics
  • Tim Parry, Alzheimer’s Research UK
  • Simon Chapman, National Council for Palliative Care
  • Jill Rasmussen, Royal College of General Practitioners Dementia Champions
  • Martin Green, Care England
  • Bridget Warr, UK Home Care Association

The terms of reference are here.

It is stated that the Advisory Group will:

1. Review the evidence on progress on dementia care and support over the last five years to identify where progress has been made, key challenges and gaps and priorities for action. This will include looking at the evidence on risk reduction and how the incidence of dementia could be reduced.

2. Consider what success could look like by 2020 in the following broad areas:

  • Improving the provision and continuity of personalised health and social care for people with dementia and carers – this includes risk reduction, prevention, diagnosis, post-diagnostic support, the role of technology and new models of care.
  • Promoting awareness and understanding.
  • Building social engagement by actions of individuals, communities and businesses.
  • Boosting dementia research capacity and capability, the opportunity for individuals to get involved in research and optimising knowledge transfer and pathways to impact.
  • Improving support for carers including improving their health, wellbeing and experienc
  • Cross-cutting: Supporting the education, training and development of the health and care and wider workforce.
  • Cross-cutting: Global action on dementia
  • Cross-cutting: Ensuring equity of access, provision and experience

This will include looking at what we can learn from international evidence and experience.

I feel that this would form a coherent strategy.

Whilst traditionally, it might be useful to consider campaigning for dementia in terms of ‘cure’, ‘care’ and ‘prevention’, in reality living well with dementia potentially straddles all three areas.

I believe it’s extremely important to have a large body of people with dementia and carers report back on what their needs are. Such committees have had a long history of involving people with dementia and carers which might appear tokenistic. The World Dementia Council has not even appointed a person living with dementia to sit regularly on their Council.

As far as future post-diagnostic care and support is concerned, we clearly can no longer have a situation where, once a diagnosis is made, some people with a diagnosis, friends and family are totally lost in the system, or even at worst lost to follow up. There appears to be little coordination of care, and sometimes there’s more signposting to services than actual services. There seems to be little coordination of information held for practitioner and professional care in primary and secondary care, and between health and social care. We have a ridiculous situation where people with dementia, some of whom can do very badly when they are admitted to hospital partly due to a distressing change in environment, cannot be discharged in a timely manner from hospital due to social care cuts in service provision.

There is a clear drive to person-centred care, and I feel a very good way of discovering personhood is to adopt a ‘life story’ approach. I anticipate that networks for life story and carers will be invaluable during the lifetime of the next parliamentary term 2015-20.

The current Government has continued with the longstanding policy drive towards personalisation promoting ‘choice and control’. However, there are nuances to how policy can be implemented; for example a rights-based advocacy approach might be considered by some preferable to the promotion of personal budgets, which poses issues about the lack of universality of care, scope for co-payments, further marketisation, and complete lack of choice if you run out of money.

The next Government will be bequeathed developments in the handling of NHS data for service care provision, and of course the new Care Act. Some reflections are here on the Care Act:

listen to ‘Clara Swinson Director of Social Care Policy DH ’ on audioBoom

//

I feel the the main challenge, in my opinion, in policy is to introduce safely and in a competent way “whole person care“. It’s going to take a lot of bottle to integrate properly health and social care, with all the challenges which endure, including breaking down organisational boundaries, cultural silos, facilitating competent knowledge sharing sand transfer, and a complete cultural change unfreezing from the biomedical model to one which recognises abilities not making feel inadequate because of their disAbilities. I would very much like to see the medical profession put some effort into the annual ‘follow up’. The point of this check up is not to chart with meticulous accuracy has changed in brain scans, psychology, or blood tests, meritorious though these initiatives are. The point about these follow ups is to ensure that there is a synchronised system of post-diagnostic care and support and everything is being done to improve living well with dementia (for example encouraging social networks and mitigating against social isolation). I feel personally the next Government should implement a “year of care” for dementia.

This change can only come from a social movement led by the major stakeholders themselves – people living with dementia and caregivers. A “top down reorganisation” will not work.

And I would prefer leaders in dementia not to be a Prime Minister but in fact to a person living with dementia. I think that way the needs of people currently living well with dementia will be better addressed, not just in service provision but also in research spend. I believe strongly that people newly diagnosed should have access to ‘dementia advisers’ and a properly resourced network of clinical nursing specialists. These nursing specialists are vital in pro-active case management, but the evidence base does need exploring further. The development of the personalised care plan, which can hopefully avert crises to encourage relaxed effective care out of hospital where possible. I have written about dementia specialist nurses, previously, here.

My interests are reflected in my new book ‘Living better with dementia: looking to the future’ due to be published on June 18th, 2015.

The contents are here.

1. Introduction. 2. Framing the narrative for living well with dementia. 3. Thinking globally about living well with dementia. 4. Culture and living well with dementia. 5. Young onset dementia and living well with dementia. 6. Delirium and dementia: are they living well together in policy. 7. Care and support networks for people living with dementia. 8. Introduction to autonomy and living well with dementia. 9. Can living well with dementia with personal budgets work? 10. Incontinence and living well with dementia. 11. Nutrition and living well with dementia. 12. Art and creativity in living well with dementia. 13. Reactivating memories and implications for living well with dementia. 14. Why does housing matter for living well with dementia. 15. Networks, innovation and living well with dementia. 16. Promoting leadership. 17. Seeing the whole person in living well with dementia. 18. Conclusion.

I think this book is more ambitious than the first one. In keeping with my original research interests, I consider why art and music are so important for living well with dementia. I also propose a new theoretical framework, the first in the world to my knowledge, why reactivation of “sporting memories” works. The “Sporting Memories Network” has been a very impressive initiative thus far in promoting wellbeing.

//www.youtube-nocookie.com/embed/rfjludYyeZU

Finally, I wish everybody luck in formulating our new English dementia policy to be implemented within the lifetime of the next Government. It is imperative that the views of the community of people living with dementia and the army of approximately 5.4 million unpaid caregivers are prioritised above the needs of others, I feel, above all.

Is the use of GPS “trackers” for people living with dementia necessary and proportionate?

Shibley Rahman 1 Comment

This is the introduction to “Living better with dementia: how champions can challenge the boundaries”, chapter 12, “Do GPS trackers have a rôle to play in living better with dementia?”

 

 

“We live in a ‘surveillance society’. If you happen to log in on Facebook, Facebook can identify your location exactly, and then can offer you a choice of cheap hotels there. The idea that a GPS system (“global positioning system”), as a tracker, can identify you where you are might seem like an invasion of privacy, but not much of an invasion of privacy than Facebook, arguably. And indeed a non-invasive system might be better than a method of physical restraint for certain people with dementia. It would be hard to justify a tracking device in a person who is not a candidate for physical restraint though conceivably?

fb

Tracking for people with dementia raises strong emotions, not helped with some of the discussion acting at the extremes, such as a hypothermic person with dementia found in a ditch due to a GPS tracker. But the conflation of ‘tracking’, with ‘tagging’ as per frequent offenders in the criminal law, is an unfortunate one. At a time when there are international drives towards decreasing stigma in people with dementia, people warn about the mission creep that is offered with tracking: for example, one wonders how long it might be for a GPS tracker to become an implantable micro-chip. The word ‘tracking’ itself, however, is a misnomer, in that these trackers do not actively ‘follow’ people, but can pinpoint someone’s location through the method of ‘trilateral’. Satellite detectors happen to be there, in the same way that public telephone boxes happen to be there. Public telephone boxes take on a different atmosphere if highly illegal activity happen to be taking there, and there is a proportionate need to intervene. But intervene in what? Here we are talking about a criminal activity, rather than intervene in a person at risk of causing harm to himself or herself? The question that someone can consent to doing himself or herself avoiding being at personal harm, exercising too his or her own ethical right to autonomy, and a clear definition of consent depends on a clear definition of capacity. A human right to privacy which is inalienable albeit qualified may transcend capacity, causing further disquiet in legal circles. And, besides, people who do happen to travel beyond their physical zone might not be doing so out of any particular malice: a person with dementia may simply have problems with spatial navigation. Presumption of innocence is pivotal in the law is pivotal, and laying blame on innocent people is unacceptable – even subtlely through terms laced with innuendo such as “wandering”.

One wonders whether the legal definition of capacity across a number of jurisdictions, which depends on an “all-or-nothing” construct, can cope with those dementias where cognitive abilities fluctuate or cognitive demands vary. Is legal capacity to make a sandwich the same as capacity to write a paper on human rights? And who is best to make a decision about fitting a GPS tracker? It must surely cause concern if a caregiver would wish to fit one simply because it makes the monitoring of an individual an easier job, rather than the person with dementia wishes to be more independent. It is therefore clear that there is no right answer to GPS systems in dementia, especially as the term “dementia” itself is a portmantaneau term for lots of different clinical conditions, with different types and ‘severities’. Whether GPS trackers are necessary and proportionate for any one person living with dementia is a rather abstract question, given that there are so many different subtypes of dementia making some more prone to travel beyond their locality than others. With GPS tracking in dementia, we see yet another example where ‘one glove fits all’ approach is a dismal failure.”

“Leadership is the art of mobilizing others to want to struggle for shared aspirations.”

Shibley Rahman 0 Comments

“McLaughlin: Leadership has so many definitions that sometimes that term loses its meaning. How do you define it?

Kouzes: Leadership is the art of mobilizing others to want to struggle for shared aspirations. That part about struggling for shared aspirations may set our definition apart.”

I’ve also been though the motions of detailed study of leadership styles in my own MBA.

But this definition of James Kouzes really struck a chord with me.

This is of course not a particularly impressive ‘leadership style’, one sedentary guy with an iPad mini with a large product placement in shot?

shibley pic

I have fleetingly thought too about who is the exact target audience of my book.

While ‘Living well with dementia’ is not a ‘self help book’, it is a fact that many people living well with dementia have warmly received the book.

In fact, in the front row in my line of vision to the left, two people sat, a son and his mother with dementia.

It turns out the son found my talk ‘inspiring’, and thanked me, in front of his mother, for saying which he perceived as powerful: that it’s more important to concentrate on what people can do in the present, rather than they cannot do.

And what did I conclude was the driving intention of an international policy plank about living well with dementia?

I concluded that a positive wellbeing is about a person being content with himself or herself, and his or her own environment.

This is not an issue of being drugged up with a ‘cure for dementia’. It is though saying something equally positive about dementia, if not more positive.

I do not consider the Alzheimer’s Show an “event with a buzz”. For me, it was like a wedding of a best friend. I was thrilled to meet Chris, Jayne, Suzy, Rachel, Louise, Natasha, Joyce, Nigel, Tracey, Tony, and Tommy, some for the first time.

And what you see is what you get with them.

Chris concluded, “Living better with dementia would’ve been a better title.”

And Tommy agreed.

A11

Chris and Tommy live well with dementia.

I agreed too. In a nutshell, ‘living well with dementia’ runs the danger of imposing your moral judgment or ‘standards’ on what living well with dementia is.

For me, living well in alcoholic recovery means not downing a bottle of neat gin when I get up, like I used to do in late 2006/early 2007 when I hit a rock bottom. (The actual rock bottom was when I had a cardiac arrest and epileptic seizure heralding a six week coma in the summer of 2007, rendering me physically disabled.)

But it’s a big thing for me that people who are living well with dementia are actually interested in – and supportive of – my book.

You see, I concede that I don’t live with a dementia yet to my knowledge – though many London cabbies conclude that I do [nicely], when I tell them the title of my book and they see me struggling get into their cab.

Chris pointed out something at first glance very true today – that I didn’t have many friends living with dementia as friends then, when I was writing my book.

Chris is in fact wrong. “Any” not “many”.

Tommy said something curious recently, that it’s ironic that it took an event such as the Alzheimer’s Show in Manchester to bring us all together.

But he’s right. We’re not there for any other reason than to share experiences.

Suzy commented that ‘I get it’. And I do think do, for all sorts of reasons, many of which were quite unintended.

I am currently writing ‘Living better with dementia: champions challenging the boundaries”. It’s going to be a toughie, but I think I can do it.

 

A3

A4

 

A6

A7

A10A9A8A5shibley picA1N12

If only Kate were there too…

Thanks to Caroline Bartle for an outstanding infogram of my book ‘Living well with dementia’

Shibley Rahman 1 Comment

I’m no stranger to ‘infograms’.

‘Infograms’, ‘Information graphics’ or ‘infographics’ are graphic visual representations of information, data or knowledge intended to present complex information quickly and clearly

I first met Caroline in the Alzheimer’s Show in London Olympia earlier this year. She is incredibly enthusiastic about the dementia ecosystem – it’s completely genuine and authentic.

This #tweet suddenly appeared out of the blue from Caroline today.

Caroline is at @3SpiritUKNZ.

CB Tweet

I had the impossible task of trying to summarise my book in 20 minutes flat for the @AlzheimersShow.

But I feel living well with dementia is essentially about a person who’s received a diagnosis being fully at ease with himself or herself, and equally importantly with the world around him or her.

Thanks to Caroline

“It’s possible to live well with dementia”: a crucial message in @DementiaFriends

Shibley Rahman 2 Comments

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.

 

This is the plucky group of persons living with dementia at the Alzheimer’s Disease International meeting in Puerto Rico in 2014.

That’s right. They’re not there as representatives of any organisation, but there on their own as individuals as members of the “Dementia Action Alliance”.

They happen to have received a diagnosis of dementia.

So why is this “it’s possible to live well with dementia” even a statement in “Dementia Friends“, a Public Health England initiative delivered by the Alzheimer’s Society. It should be obvious shouldn’t it?

The answer comes in the ‘icebreaker’ exercise at the beginning of the Dementia Friends session. Attendees are asked to think of the first word that springs to mind when they think of dementia.

“Suffering”

“Horrible”

“Terrible”

And indeed it would be wrong to ignore how distressing a diagnosis of dementia can be for certain individuals with dementia. Take for example people with diffuse Lewy Body disease, typically individuals in the younger age bracket in their 50s, who have complete insight into the condition, realise that memory might be going, and are exasperated at the ‘night terrors’.

‘Living well with dementia’, conversely, is supposed to counteract the negative word associations may people have about dementia. It’s felt that such negative connotations contribute to the stigma individuals with dementia can experience after their diagnosis. This can ultimately lead to discrimination, hence the need for communities which are welcoming to such individuals.

It also happens to be the name of the English dementia strategy, which was introduced by the last Government in 2009. Dementia as a policy plank now in England has full cross party support, and the current ‘Prime Minister’s Dementia Challenge’ is due to come to an end next March 2015.

In the panel session above, somebody asks whether a dementia diagnosis should ever be withheld from a person with dementia. Kate Swaffer, living with dementia herself, believes firmly ‘no’, saying that one would never dream of withholding a diagnosis of cancer.

Policy in this jurisdiction and others has given due attention to whether the person receiving the diagnosis of dementia actually benefits – put simply is it ‘disabling’ rather than ‘enabling’.

Does it shut more doors than it opens?

But even if one takes the view that dementia is a disability which one is perfectly entitled to do on reading the case law surrounding the Equality Act (2010), the issue of making reasonable adjustments around this particular disability then becomes not a trivial one.

Richard Taylor elegantly advances this argument. Big Pharma have been impressively unimpressive in the offerings for dementia, although some report some substantial short-term symptomatic benefit for symptoms.

The National Institute for Clinical Excellence (NICE) have stated clearly that such medications do not slow the progression of the condition.

But they did offer very recently some enormously useful guidance on supporting people to live well with dementia.

And this issue is a push-pull one. Given the relative inefficacy of the medical interventions, one is possibly attracted to the things one might do to promote living well with dementia.

In a world of ‘whole person care’, where there might be care coordinators helping to break down the silos of service provision for people living with dementia, we might arrive at a destination where people with dementia do receive some help.

This might include assistive technologies, other innovations, or access to advocacy services.

And for a person who has received a diagnosis of dementia, Richard Taylor argues that trust is pivotal. This is somewhat related to Kate Swaffer’s views that ‘support groups’ (for carers) might inadvertently encourage division.

Whilst members of the support and care network clearly have substantial ‘needs’, not least in behavioural and psychological considerations, promoting quality of life for people living with dementia is clearly going to be a vital policy plank for the future.

Some inroads have already been made, as I recently discussed here, but there is a lot yet further still to do I feel.

Can you live well with dementia and suffer at the same time?

Shibley Rahman 1 Comment

First, read Kate Swaffer’s poem. “Who’s suffering?”

When the media fires bullets of suffering in their magazines (quite literally), it is not clear who is the suffering by, what they’re suffering, how they’re suffering, when they’re suffering, and why they’re suffering.

Many readers suffer at this lack of clarity.

It’s pretty clear this narrative has got extremely distorted for no clear reason. What do the caring professions or the media have to gain by describing so much suffering?

And are people really suffering as purported?

Are there any randomised placebo-controlled drug trials where the relief of “suffering” in #dementia is a reported outcome?

Kate Swaffer (@KateSwaffer)’s poem conversely is a very helpful contribution, based on a personal experience of living well with a dementia.

“Rhetoric referring to Alzheimer’s disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease.”

So comment Beard and colleagues.

“The fact that the words Alzheimer’s disease conjure up images of a hideous, debilitating condition demonstrates that an Alzheimer’s diagnosis can be both “a stigmatizing label and a sentence”. When depicted as a ‘living death’, Alzheimer’s can have countless social-psychological consequences for those diagnosed. Within a medical model, the relatives of persons with dementia are ascribed the role of ‘caregiver’ with a focus on the associated stressors or ‘burden’. Subsequently, health promotion efforts have historiiccally positioned family members as the ‘second’ or ‘hidden’ victims.”

Of course, this discussion is not confined to Alzheimer’s disease.

It is not uncommon for people who love people living with advanced dementia to have a miserable time, and suffer from that.

Alzheimer’s disease is the most common type of ‘dementia’, a disease of the brain. It’s not just about memory, although memory problems can be a common feature of Alzheimer’s disease early on in particular.

There is more to the person than the dementia. It’s possible to live well with a dementia. And dementia is not necessarily associated with ageing.

But some critics of ‘living well with dementia’ have attacked the concept saying it is trying to airbrush or sanitise suffering. I hope that this is not a widespread belief, as it is not true.

Across a number of jurisdictions, the word ‘sufferer’, like ‘victim’, is avoided in common parlance and academic papers when referring to people getting on with their own lives.

The term ‘live well with dementia’ is not indeed to enforce a degree of pleasantry on the lives of people. Contentment is not compulsory. But the term conveys a notion which is a pure and simple reaction to people being written off on the receipt of a diagnosis of dementia.

We owe much of the current drive in policy to ‘person centred care’ from the seminal work of the late great Prof Tom Kitwood on personhood. Persons living with dementia have been classified as “empty shells”, a label that may contribute to the development of paternalistic attitudes and behaviors toward care.

Kitwood suggested that people with dementia are often depersonalized and actively disempowered.

Research into the “self” in dementia is important for a number of reasons. It is important to understand how people with dementia experience their sense of self because this has implications for how people cope with the illness, how they relate to others, including friends, family, and health professionals, and what any types of intervention might be appropriate for them.

One person, interviewed by Wendy Hulko, described the experience as “hellish”.

But it turned out that this word was chosen partly out of word finding difficulties.

“Well, having um a difficulty coming out with the right words for example or phrases or um having difficulty with uh numbers and um dates, times, um having difficulty coming up with um, difficulty um, coming up with just a common expression uh, or um even words that are very frequently used by anyone without the disease and um having difficulty coming up with just ordinary expressions…”

Several of the participants dismissed the significance of having dementia, some focusing on the lack of impact it had on their lives. Several of the participants tolerated dementia, noting the inconvenience it caused and downplaying the negativity associated with it.

Despite extremely powerful national advocacy organisations founded over a quarter century ago in the United States and the United Kingdom, the voice of people with all forms of dementia has been surprisingly slow to emerge.

A recent exception to this has been the Dementia Alliance International.

The medical model has unintentionally forced a narrative in the media which does present people living with dementia in the positive light. Such ‘ringfencing’ of the person with dementia positions them as withdrawing from social life rather than considering how their social roles may have been withdrawn from them, which demotes them to ‘patient’ or ‘dementia sufferer’.

Such biomedical reductionism, arguably, can, therefore, create additional obstacles for diagnosed individuals and their families.

People with dementia, like all of us, undoubtedly have “rough spots” along an individualistic path of dementia, but the person is more important than the diagnosis as reflected in strategies for circumventing the rough spots.

There are typically personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations.

A number of devices can be used cognitive aids, made various modifications, garnered assistance from others’ engagement, akin to how people like me live with physical disability.

And often the language itself is intensely stigmatising.

Take for example this example by Dupuis and colleagues.

Such current language and discussion around “challenging behaviours” have the effect of blaming persons with dementia for behaviors and labeled persons as violent, aggressive, disruptive, challenging and so forth. This was hurtful and stigmatising and did not reflect the meanings of the actions of persons with dementia.

stigmatising language

Conversely, it is quite often – and incredibly politically incorrect to say so – a failure by the care or support network to understand communication by a person with dementia amidst intense frustration.

Sarah Lamb notes at the beginning of this year that the current North American “successful ageing” movement offers a particular normative model of how to age well, one tied to specific notions of individualist personhood emphasising independence, productivity, self-maintenance, and the individual self as project.

However, Lamb concludes that the “successful ageing” narrative “might do well to come to better terms with conditions of human transience and decline, so that not all situations of dependence, debility and even mortality in late life will be viewed and experienced as “failures” in living well.”

This thought is bound to raise eyebrows.

Frank

An emerging political approach suggest that individuals with dementia are viewed as having transgressed “core cultural values—productivity, autonomy, self-control, cleanliness—and these failures damage the ‘victim’s’ status as an adult, and indeed, full humanity” (Herskovits, 1995: 153).

In articulating a “political” model of dementia, Susan M. Behuniak suggests that one is inviting very different meanings:

“everything from absolute control over the individual to a total lack of public policy, from an emphasis on individual rights to that of social responsibility, and from laws that draw absolute lines to those that accommodate shades of grey.”

Although dementia is not traditionally viewed as a power question but as a medical condition, power in its most traditional of formulations can be seen when debates arise over who  should decide matters involving the individual with dementia.

This is, I feel, also an issue when we talk about a ‘carer’ or ‘support’ for a person with dementia. Whilst not as unsubtle as the word ‘sufferer’, there is an implicit power relationship there for me.

Chris Roberts [@mason4233], one of the @DementiaFriends, himself a card-carrying member of the ‘living well with dementia’ club has often remarked as follows:

Roberts

So it is possible to suffer and live well with dementia.

But once you’ve met one person with dementia, you’ve met only one person with dementia.

But hold on.

Carly Findlay, like Chris and Kate, also puts it beautifully, this time writing from Melbourne about “ichthyosis“.

In her piece, “I get told I suffer… I don’t suffer.”

Ask others for their opinion if possible, or those closest to them.

It’s very important that no views are simply shouted down, particularly since it will be an important strand of the English dementia strategy  (probably from next year.)

 

 

Further reading

Herskovits, E. (1995). Struggling over subjectivity: Debates about the ‘self

Social stigma, music and living well with dementia

Shibley Rahman 0 Comments

There are 800,000 people living with dementia in the UK, it is thought.

There is no cure at the moment.

“Attitudes are changing. The old stigma is being replaced by the recognition that people with the disease can be helped.”

Later on, John Humphrys spoke this morning to a number of clinicians involved in managing persons with dementia.

listen to ‘Dementia ‘losing its stigma’’ on Audioboo

The package begins with an initiative called ‘Singing for the brain’.

Singing for the Brain is a service provided by Alzheimer’s Society which uses singing to bring people together in a friendly and stimulating social environment.

The power of music, especially singing, to unlock memories and kickstart the grey matter is an increasingly key feature of dementia care. It seems to reach parts of the damaged brain in ways other forms of communication cannot.

Organisations such as Music for Life, Lost Chord, Golden Oldies and Live Music have also improved accessibility live musicians, both professional and amateur, most of them trained to deal with the special needs of an elderly, memory-impaired audience.

A nice overview of some of these initiatives is given on the Age UK website.

The way in which the brain might do this is indeed interesting.

Results from Petra Janata (1999) suggest that the dorsal medial prefrontal cortex (MPFC) associates music and memories when we experience emotionally salient episodic memories that are triggered by familiar songs from our personal past.

MPFC acted in concert with lateral prefrontal and posterior cortices both in terms of tonality tracking and overall responsiveness to familiar and autobiographically salient songs.

The MPFC is right at the front of the brain.

F1.large

My interpretation using the “bookcase analogy” of “Dementia Friends” is that while the bookcase representing your memories for events is shaking this bookshelf representing memories triggered by music is unaffected.

It’s virtually the same as the bookcase responsible for sporting memories, in my view of things.

I wonder if ability to reactive sporting memories is correlated with ability to reactivate music memories?

This would explain the efficacy of this approach to living well with dementia.

We not only have to face the reality of the scope of people living with dementia in society.

But as Humphrys articulates in his item.

“Part of it is how society is set up to respond to people who look confused… instead of reacting in a fearful way, we are thinking in terms of how to help such people”, so comments Dr Andrew Crombie from  South West London and St George’s Mental Health NHS Trust.

You can listen to the whole of the presentation by John Humphrys – for one week only from the date of this blogpost – on the BBC iPlayer.

Play from about 1 hr 34 mins in on this page.

Social stigma is the extreme disapproval of (or discontent with) a person or group on socially characteristic grounds that are perceived, and serve to distinguish them, from other members of a society. Stigma may then be affixed to such a person, by the greater society, who differs from their cultural norms.

Social stigma can result from the perception (rightly or wrongly) of mental illness, physical disabilities, diseases such as leprosy (see leprosy stigma), illegitimacy, sexual orientation, gender identity, skin tone, education, nationality, ethnicity, ideology, religion (or lack of religion[3][4]) or criminality. Attributes associated with social stigma often vary depending on the geopolitical and corresponding sociopolitical contexts employed by society, in different parts of the world.

According to Goffman in “Stigma: Notes on the Management of Spoiled Identity”, there are three forms of social stigma:

  • Overt or external signs, such as scars
  • Deviations in personal traits, including forms of medical conditions
  • “Tribal stigmas” are traits, imagined or real, of ethnic group, nationality, or of religion that is deemed to be a deviation from the prevailing normative ethnicity, nationality or religion.

Prof Alistair Burns is the National Clinical Lead for dementia for NHS England, and was interviewed by John Humphrys this morning.

“You have highlighted very well in the discussions today and yesterday .. about something which we hear much more of now, and that is: people can live well with dementia. On the interview yesterday, we heard from Linda who felt she was very supported by her friends yesterday, and you said that when you interviewed Grace she felt normal.”

Humphrys was concerned that this was only representative of people living with dementia in the earliest stages.

Burns said, “There are many things that we can do, whatever the stage of dementia.”

“If we look at person-centred care, that is treating people as individuals we’ve heard from ‘Singing for the brain’ and ‘Life Story Work’ can bring people together.”

And have we been doing this successfully thus far?

“It’s fair to say that there has been pockets of excellent work being done around the country.. And one of the things which we must do is to encourage people to do and to learn from areas which are doing well like the example we saw yesterday, and like the example we saw today.”

Humphrys then went on to probe Burns much more about the stigma.

“We know that, from surveys of people for people above the age of 55, dementia is the most feared disease, much more than, say, stroke, heart disease or cancer.”

“There is something about the stigma. What we have seen is a lessening of the stigma, things like ‘Dementia Friends‘, working with schools, and getting ideas into schools.”

Humphrys proposed that it is necessary was to get rid of the idea that there was something about dementia that is “shaming”.

“What you got yesterday from today and yesterday was that people felt normal and supported. But I hear from my own clinic that, experiences where once people receive a diagnosis of dementia, others cross the street.”

“And trying to wrestle that is important.”

Living well with dementia: Happy by Pharrell Williams

Shibley Rahman 0 Comments

My close friend and colleague, Kate Swaffer, wrote an article this morning in Australia on being diagnosed with dementia vs ‘suffering’.

I strongly recommend it to you here.

This was an exchange of ours this morning on Facebook.

This topic has always caused heated exchanges for all of us.

I hope you can bear with us, as none of us mean any offence in this.

I think part of the issue is that, further to ‘once you’ve met one person with dementia, you’ve met one person with dementia’, our different views of that person with dementia can vary quite widely too.

Our discussions of ‘Living well with dementia‘ continue..

 

Comments

“Happy”

[Verse 1:]
It might seem crazy what I’m about to say
Sunshine she’s here, you can take a break
I’m a hot air balloon that could go to space
With the air, like I don’t care baby by the way[Chorus:]
Because I’m happy
Clap along if you feel like a room without a roof
Because I’m happy
Clap along if you feel like happiness is the truth
Because I’m happy
Clap along if you know what happiness is to you
Because I’m happy
Clap along if you feel like that’s what you wanna do[Verse 2:]
Here come bad news talking this and that, yeah,
Well, give me all you got, and don’t hold it back, yeah,
Well, I should probably warn you I’ll be just fine, yeah,
No offense to you, don’t waste your time
Here’s why

[Chorus]

Hey, come on

[Bridge:]
(happy)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said (let me tell you now)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said

[Chorus 2x]

Hey, come on

(happy)
Bring me down… can’t nothing…
Bring me down… my level’s too high…
Bring me down… can’t nothing…
Bring me down, I said (let me tell you now)

[Chorus 2x]

Come on

Norman (@norrms)

Kate (@KateSwaffer)