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ADI 2001 New Zealand - Presentation by Christine Bryden - Slides 5 to 8

Slide 5

Not only must we cope with this internal turmoil, but now we have become a labelled person. We are yet another case of Alzheimer’s or dementia. Our inner fear at loss of self, of identity, is exacerbated by this outer stripping away of who we once were.

It feels like a big stop sign has just been placed on our life’s path, and we cannot see beyond to any new future, only a journey further into dementia. This journey seems full of more stop signs - of stopping work, stopping driving, stopping golf, stopping looking after grandchildren.

Our brand new label of dementia is like the yellow star ofthe Jew of the ghetto - we have the stigma of “being demented”. We are watched carefully for odd behaviour, we are not able to be trusted, we are thought to lack insight, our input is not taken seriously, and we are expected to start wandering, getting lost and exhibiting challenging behaviour.

Rachel Renman says that “diagnosis is simply another form of judgement”. It is a critical step on our journey, to a future of stop signs which we and our family face together with fear and uncertainty.

Slide 5

Slide 6

Diagnosis has changed our world forever. Our lives become limited by the stigma we face in the world around us. It’s like we have a target painted on our foreheads shouting out “dementing” for all the world to see. People become awkward in our presence, are unsure of our behaviour, and 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 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.

Slide 6

Slide 7

But is that devastating diagnosis right? So often we are given the label Alzheimer’s, but what about fronto-temporal dementia, vascular dementia, Lewy Body dementia? Still devastating, but you may need to offer other types of treatment. The current prevalence of Alzheimer's may be incorrect, because autopsy checks show 40%-60% of cases were another type of dementia. FTD probably accounts for 20% of cases of degenerative dementia. It is inherited in around 40% of cases - far higher than in Alzheimer’s. It took three years for my original diagnosis of Alzheimer’s to be revised to FTD and only now must I deal with this issue.

Anti-dementia drug research is on groups of people with Alzheimer’s, because that is what many of us are told we have at first. The drugs are trialled and have good effect - but how many people in that research cohort actually had some other form of dementia? Tragically the drugs may be denied to people with other forms of dementia, because the results supposedly only apply to Alzheimer’s. This may only be around 50-60% of cases of dementia, of those in the research group. What about the rest of us, who could also benefit?

Slide 7

Slide 8

Like the poet John Keats, expressing a fear of death, we can say of diagnosis that this is a time “When I have fears that I may cease to be”. If we are labelled, we are susceptible to fear. Like Viktor Frankl, help us “to bear witness to the uniquely human potential … which is to transform a personal tragedy into a triumph, to turn one’s predicament into a human achievement.”

What do you tell us at this critical time of diagnosis? “It’s best not to let her know.” “He doesn’t really understand.” “Go home and enjoy the rest of your life.” The assumption is that nothing can be done, so why bother? But we want to get our life in order, to think about family relationships, our legal and financial affairs. Give us information about dementia. Don’t assume we lack insight, for we might simply be in denial - a perfectly normal response to the shock of diagnosis. What about counselling and support groups? This could help us work through our grief over losing our self, and our family and friends, during the course of the disease. Symptoms of dementia may be exacerbated by the grief reaction, as we experience anxiety, anger, sadness, fatigue, shock, helplessness and numbness.

Slide 8

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