“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.

I think all drs should be made to lie in a hospital bed wearing PJs & be stood over. See what it feels like. #vulnerability #powerbalance

— Kate Granger (@GrangerKate) February 26, 2014

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.