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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.

medications

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.

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  • Haha, hopefully I’ve not been blacklisted??!! Of course, I LOVE this particular blog… my vanity aside, it is such an important topic. Thank you for raising it here.

  • That’s a great blog Shibley. I’m reminded of a great quote from Paulo Friere – who said:

    “Self-depreciation is another characteristic of the oppressed, which derives from their internalisation of the opinion the oppressors hold of them. So often they hear that they are good for nothing, know nothing and are incapable of learning anything that they are sick, lazy and unproductive, that in the end they become convinced of their own unfitness”

    I was first made aware of Paulo Friere by a great friend in the disability movement in the early 80s, and I am struck by the parallels between people with dementia now and people with physical disabilities in the 70s and 80s is quite striking. The real changes for disabled people were bought about not by changes in medicine or medical technology, but by people challenging the dominant narrative about disability and disabled people. Just as people with dementia and their supporters are doing now.

    People with dementia are coming together to share their experiences, support each other, and are beginning to tell a different story about dementia which is not solely focused on loss, decay and decline, but instead on hope, passion, and living a life. When we started the DEEP (Dementia Engagement and Empowerment Project) in 2012 we were supporting 16 groups of people with dementia at various stages of development. Two years later there are now 37. All are different – some are focused on peer support others on consultation, some on campaigning, some on awareness raising or advocacy – but what they all share is a commitment to influencing the dementia agenda.

    http://www.dementiavoices.org.uk

  • Thanks. I’m sure Kate will be very interested in your comment, as indeed I massively am. Take care Steve.

  • A very important blog , Shibley. At the ‘Quality in Dementia’ conference in Manchester this week (25 Feb 2014) Chris from the ‘EDUCATErs’ described receiving his diagnosis of Alzheimer’s with exactly the same experience of the ‘prescribed disengagement’ message. For me, he was a wonderful man addressing the conference with confidence and passion and with SO much still to offer.

    Things have got to change – the ‘diagnosis’ meeting holds the key. Ken Howard, who also has younger onset dementia, suggests that someone living well with dementia should be on hand to chat to the person immediately after diagnosis to reinforce the fact that life goes on!

  • Reblogged this on Creating life with words: Inspiration, love and truth and commented:
    It seems my experience is not unique… during dinner last night with friends from the UK, one who was diagnosed with younger onset dementia in 2010, mentioned he and his wife were booked to go on a five week holiday to Australia, and during the same appointment when he was diagnosed, he was told to cancel the trip! After careful consideration, he too chose to ignore his doctors advice, and successfully enjoyed on his holiday. He has managed holidays to Australia every year since, and numerous speaking trips in the UK, proving there is absolutely no need to accept the “Prescribed disengagement”! It is the only disease patients are told to give up, rather than to fight for their lives…

  • Apologies if this looks like a plug for Innovations in Dementia – but here are members of the Forget me Not Group in Swindon expressing similar sentiments – I used to use this quite a lot in training to challenge lazy perceptions of people with dementia: http://www.innovationsindementia.org.uk/videos_walkinggroup.htm

  • Thanks Steve – not a plug at all!

    Thanks also to Kate and Gill – very close friends of mine.

  • Pingback: It’s not the word ‘dementia’ itself which is stigmatising, but the words which are used around it | Living well with dementia()