Yvette D'Ath (Petrie, Australian Labor Party) Share this | Hansard source

I rise to speak in support of this motion on early-onset dementia and in doing so congratulate the member for Kingston for bringing such an important issue to the House. I also acknowledge the speeches of the member for Swan and the member for McPherson, who will be speaking shortly on this motion. I also acknowledge and thank the member for Newcastle for her ongoing work as chairperson of Parliamentary Friends of Dementia.

For many people dementia is a very difficult issue to talk about. This is particularly so when you are talking about the younger onset of dementia. Younger onset of dementia is the term used to describe dementia with onset of symptoms in people under the age of 65. The Alzheimer's Australia 2009-10 annual report notes that the most recent Access Economics report estimates the number of people with younger onset of dementia at 15,000.

Everybody at some point worries about how they will age. As you get older forgetfulness becomes something you fear. People worry that it is the first signs of dementia. Imagine facing these fears at 60 or 50 years of age. Now imagine being 43 or even being diagnosed at 31. Unfortunately these are not hypothetical numbers; they are the ages of real people facing a debilitating illness and a shortening of their lives. As with any illness, it is not just the individual with the illness who suffers. The early onset of dementia has a real and demonstrable impact on the lives of their immediate family.

I acknowledge the work of Parliamentary Friends of Dementia and Alzheimer's Australia, who together put on a national summit on younger onset dementia back in February 2009. They brought together 100 participants here in Parliament House, including young people with dementia, carers and experts from across Australia. They produced a booklet called In our own words: younger onset dementia: a collection of very personal stories.But the one story I heard most recently—later that year, in 2009—that has stuck with me ever since is the story of Rebecca Doig. Rebecca was 31, a wife and five months pregnant with her first child when she was diagnosed with Alzheimer's. You can only imagine the fear of her husband, knowing that his wife will never really get to know their daughter.

I particularly wanted to speak on this motion—on the issue of the difficulty of finding accommodation and the pressures on families—from my own personal experience. I have spoken in this House before about my mother passing away. What I have not said is how or why. My mother was diagnosed with Alzheimer's two months before I had my first child. She was 56. She passed away at 63. I know the pressures on families when there is still a mortgage to pay, when there are still family members who need to work and earn an income themselves—how difficult it is for families to make that eventual decision to put that person into full-time care and then to go into a nursing home, to see the age of people in nursing homes and to try to put a younger person into a nursing home. When you consider that there are people in their 30s, their 40s and their 50s with dementia, their family members having to make that tough decision to put them into care, we need to do more in this area. I congratulate Youngcare for the work they are doing, but we need so many more facilities out there that take in young people, not just with dementia but with severe disabilities and needing full-time nursing care. We need to provide support for families. We need to provide support for children whose parents are going through dementia.

I remember going along to the launch of this booklet in Parliament House in 2009 and talking to a woman who looked like she was in her 60s. I was thinking she was going to tell me her partner was suffering from Alzheimer's when in fact it was her son. Imagine being a parent and having to deal with the fact that your son is going through dementia and how you support them, their partners and their children--your grandchildren. These are the struggles that people face every day. There are, unfortunately, growing numbers of people with young dementia. We need to do a lot more in this area. I congratulate all those involved in the research. There is a lot of great research in this area, but we can do more. (Time expired)

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