Slide 1 My name is Christine Bryden, and I have fronto-temporal dementia. I think I am the first person with dementia (or PWiD) to give a plenary address at Alzheimer’s Disease International and I am sure there will be many others in the years to come.

I am a member of the Board of the Dementia Advocacy and Support Network (or DASN) International, which is an organisation for advocating and supporting people with dementia. We have around 130 members, both PWiDs and TABs (or temporarily able-brained persons who support us), around the world.

At this conference we are being well represented, including running a booth, a workshop on co-dependency and discussion sessions for PWiDs. This is a world first and I commend ADI and the NZ organising committee for being open to our participation and willing to take the risk of including us.

You have heard about dementia from a professional perspective, about medication and about research. I’d like to introduce a different perspective, that of the consumer, the client, of these services - the person who is being diagnosed with dementia.

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We PWiDs, together with our families, are on a journey from diagnosis to death. Dementia is now a major health problem, not merely one of ageing and aged care, and is set to become the major disabling disease in women in Australia over the next five to ten years This perspective can affect the service you might provide to us, for we will have needs maybe long before we begin to exhibit what you might call challenging behaviour.

Our journey begins with a struggle with daily life, of tiredness, irritability, stress, a feeling that not all is well. There may well be gaps in our memory but that is not always the first sign we feel.

It’s more like a kaleidoscope of small problems, of not quite being ourselves. We don’t do everything we used to do, it all seems so much trouble. It’s what you on the outside of our inside struggle might call apathy. But it’s not lack of interest, but a lack of energy.

In stressful situations we cope very poorly, as we have so few additional resources to muster under such a strain. Ordinary life takes up all we have. Like I said in my book: “Who will I be when I die?” “It feels like I am clinging to a precipice with my fingernails. It takes all my effort to stay where I am.”

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The first step along our journey is one of laying ourselves open to the medical profession, of a series of tests, of tension and of apprehension. This is a traumatic time for us and our families.

There is the insult of the MMSE, or if we are lucky full neuro-psychological testing, when we find out that we cannot put a series of pictures together, or blocks, or remember a shopping list. We feel like failures.

We face a battery of impersonal medical reports, with one line summaries saying “Generalised atrophy, No other abnormality, Thank you for referring this patient” (from my first CT scan). The brain scans can be very scary, lying claustrophobically inside what feels like a torpedo tube, outside which roadwork is going on, or a loud techno party raging. One of the two.

During all these tests there is the agony of waiting, wondering, and desperately hoping that it will be something that can be treated and cured. But at the same time, we feel safe, something is being done about the problems we have felt.

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It may have been months or even years before we have got to this moment of testing. Our GPs may fail to recognise the signs of dementia, particularly in younger people, or dismiss our difficulties as simply a case of “getting old”. Both we and our families have struggled to get to this point, but we wait in fearful apprehension.

Finally, after the tension of tests, there is the moment of diagnosis. For many of us it is etched in our memories, like the day President Kennedy died. The experience can be one of extreme trauma, or of disbelief, or even relief (at last there is acknowledgment of our difficulties). Often there is a lack of information, of hope, and of compassion at this critical moment for us.

The diagnosis is a turning point, at which we must face the awful awareness of what lies ahead in terms of possible further losses. We feel like waving a flag of distress, as our ship of life sinks. We are experiencing a continuing threat to self, and feelings of helplessness and powerlessness. Our identity that we had prior to diagnosis is destroyed. All these experiences are like those that lead to chronic trauma.

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