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28th February 2014

Dementia Care: The Stigma of Dementia

stigma of dementiaDoing with, not to

While it may be a largely accurate statement to say that as most of the major dementias progress in both terms of time and severity the outcomes will be similar in the end - in the early stages of most dementia’s that are not Alzheimer’s disease, people are effected in many different and challenging ways and each different form of dementia will have very different features. Different abilities will be affected and in some cases short term memory is not damaged early on, rather personality changes may be the most prominent symptom, therefore, different ways of caring for people should be designed and different types of care planning should be evident.

Indeed when we take a psychosocial vantage point, the respected author Michael Bender has suggested we do not apply the term dementia at all when we discuss this group of affected people, as their individual reactions to the dementing process can be so personal and unique. Instead he suggests we substitute the use of the term ‘remedial or enduring cognitive losses’ (Bender, 2003).

Graham Stokes however urges that ‘when used judiciously ‘dementia’ can be a useful concept – it can be seen as a useful ‘compromise diagnosis’ which acknowledges a set of characteristic signs and symptoms and excludes a range of alternative diagnosis’ (Stokes, 2005).

We will discuss psychosocial theory in later blogs but for now, while we are still learning about each other let us continue for ease of understanding to refer collectively to ‘dementia’ and individually to the sub type i.e. Alzheimer’s disease, multi infarct, Lewy body etc.

Does this use of the term dementia however connect us to many years of stigma, prejudice and misunderstanding - I am afraid it does. If we stopped using this term tomorrow how would other professionals view you – would they understand your attempts to normalise those within your care establishment or would they perceive your lack of use of labelling as a lack of knowledge?

How would those you live and work with feel if you started to refer to their condition as a disability or as them experiencing cognitive losses? How would families and friends feel if suddenly you de-medicalised what you do and started adopting much more humane language – what if you started doing with people and not doing things to them? What would happen do you think?

Someone to talk with rather than at

Somewhere in the care of the old, the disabled and those with mental health needs a culture has arisen that offers care or cures but does not seem to offer relationships. We talk at people and do things for or to them, specifically people living with a dementia because they have symptoms, they have a disease or an illness – but we see an absence of this culture in cancer care or in the care of those with HIV – why is this?

We certainly spend much, much longer in the same building with older people living in care, sometimes many, many years but do we have relationships with them – if we do not, why not?

I leave you this week with much to ponder

Till next time

Paul Smith – Dementia Care Expert

Topics: Dementia

Sarah Riley

Senior Customer Care Executive

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