The biggest problem that many face with a diagnosis of dementia is what others think and say. Christine Bryden in her book, Dancing with Dementia – a book that is a must read for all caregivers – says the following:
Do what you can to prevent the stigma of dementia. We
people with dementia have two burdens from our disease. The first is the
struggle with the illness itself. The second is the battle we have with what I
call the ‘disease of society’. Dementia, and the type of dementia called
Alzheimer’s, are a disease of society as much as they are a disease of a
person.
Hazel Hawke, former ‘first lady’ in Australia, who has been
diagnosed with Alzheimer’s Disease, said, ‘Ridicule is terribly hurtful to the
sufferer and it doesn’t serve any purpose… Alzheimer’s…is kind of shameful,
it’s embarrassing, you’re losing your marbles.’40
Stigma is a social issue separating the world into two
perceived compartments, by labelling and lack of understanding: that of
dementia, and that of ‘normals’. This is the stigma we face, where the
stereotype and myths surrounding dementia perpetuate an attitude that isolates
us, into a separate, walled compartment of dementia.
Until this wall created by stigma is removed, people will
not seek help, nor even seek a diagnosis, and then they will be denied the
treatment and support that is available to them. Living with dementia, we need
to be free of stigma to feel respected and empowered, and to know we can live a
new life in the slow lane.
I found that when I read a book describing the difficulties
of people with mental disability by James Dudley, I could easily replace
‘intellectual disability’ with the word dementia.41We too ‘live
within a complex web of social encounters that are tainted with stigma…
[which] like racism is pervasive and endemic to [our] existence’.
Our world becomes circumscribed by the stigma of our
illness. We want to retreat in shame, and do not want to ‘come out’ and tell
people the diagnosis. It’s not surprising that some of us react by denying
anything is wrong, and our families do too. Better to pretend at normalcy than
to face up to the challenge of dementia.
If we do believe the lie of dementia, that we can’t learn
new things, remember anything reliably, or find our way around, we are
blindfolded to our own potential. We withdraw into helplessness and let our
families take over. Our inner world is in turmoil as we suffer anticipatory
grief at loss of self. We may become overwhelmed by feelings of anxiety, anger,
sadness, fatigue, shock, helplessness and numbness as we try to come to terms
with losing ourselves as well as others.
Please don’t call us ‘dementing’ – we are still people
separate from our disease, we just have a disease of the brain. If I had cancer
you would not refer to me as ‘cancerous’, would you?
Our labels seem to mean so much – am I Alzheimer’s Disease
or fronto-temporal dementia, or simply someone with a ‘dementing illness’? All
these terms label us as someone without capacity, without credibility as a
member of the community. How about separating us from the illness in some way?
How about remembering we are a person with progressive brain damage?
Be very alert for discrimination against people with
dementia. Treat us like a normal person and never speak about us in the third
person when we are there. Don’t criticise, find fault or laugh at us, or speak
as if we are no longer there, and certainly do not do everything for us.
Respect us and realise how hard we are trying to cope.
Don’t categorise us in terms of stages of the disease. This
is meaningless at the individual level. Our cortex is wired up according to our
own unique learning and experience, so we vary in how we react to damage in any
area of our brain. We need to be treated as an individual, with unique
capabilities.
Focus on our abilities not our deficiencies. Treat us as a
person, never a statistic, and involve us in life. Help us to continue
activities that we enjoy – whatever will help us to feel valued, appreciated,
and still part of society.