Amanda Rishworth (Kingston, Australian Labor Party) Share this | Link to this | Hansard source

I move:

That this House:

(1) recognises the devastating impact of early onset dementia on the lives of sufferers and their families;

(2) notes that:

(a) individuals who suffer from early onset dementia often face unique challenges including obtaining an accurate and early diagnosis and finding appropriate accommodation and care facilities; and

(b) early onset dementia sufferers are generally still physically active, engaged in paid employment and many still have significant family responsibilities at the time of their diagnosis;

(3) acknowledges that these characteristics often mean that sufferers of early onset dementia require support services tailored to their unique circumstances including:

(a) accommodation with appropriate support and activities specifically for their age;

(b) support for family members to understand and cope with the impact of the disease especially for young dependent children; and

(c) support for the individual and their families in managing their reduced capacity to work and inability to fulfil family responsibilities, such as parenting, as a result of the disease; and

(4) calls on all levels of government to work together to appropriately support those suffering from early onset dementia and their families.

Dementia is often viewed by our society as an older person's disease and, while dementing illnesses such as Alzheimer's do generally affect older people, there are also many younger individuals under the age of 65 years being diagnosed with dementia. Access Economics has estimated that in Australia around 10,000 individuals have been diagnosed with early onset dementia.

As I have outlined in my motion, the widely accepted correlation between dementia and the ageing process often means that individuals who suffer from early onset dementia face unique challenges and struggles throughout their illness. For this reason, I believe it is important that the House recognises the truly devastating impact of early onset dementia on the lives of younger suffers and their families. For example, research shows that people with early onset dementia often experience significant difficulties in obtaining an early and accurate diagnosis. The younger population is more at risk of experiencing atypical dementias, which can mean that behavioural and personality changes are the obvious presenting symptoms rather than memory loss. Additionally, pronounced depression associated with the development of early onset dementia can mask the real illness because the two conditions share some symptoms such as a lack of energy and focus. The fact that younger sufferers often look fit and healthy also compounds the difficulties in obtaining an early and accurate diagnosis. This can be a long and frustrating process for sufferers and their families.

The motion notes that one of the significant challenges unique to early onset dementia sufferers and their families is finding appropriate accommodation and care facilities. Most services and facilities for people with dementia are designed for and targeted to older people and yet younger sufferers are generally still quite physically active and have significantly more energy, despite their dementia. As a result, younger sufferers who end up in aged-care facilities because their condition is no longer manageable in their family home often report feeling uncomfortable and out of place. What they really want is contact with other younger sufferers and activities tailored to their specific physical needs and personal interests. Many younger suffers still want to be occupied in a meaningful way and have identified social activities, opportunities for volunteer work and supported employment, transportation and support for their families and young children as being most important to them.

The motion acknowledges that support is needed for family members to understand and accept the changing roles within the family structure as a result of this condition. There are some particular emotional challenges for younger sufferers diagnosed with early onset dementia. This debilitating condition can occur at a time when the person still holds multiple roles such as spouse, parent to young children or adult child to ageing parents. The impact of this shift in family structure on the individual sufferer is significant. In particular, suddenly becoming a dependent when you were relied on to take sole responsibility for things like paying the bills, driving them around and even feeding them can have a big impact. It is also very significant for their families.

As previously mentioned, those diagnosed with early onset dementia often have dependent children. While it is always upsetting at any age to watch the condition of a loved one suffering from a dementia illness deteriorate, children can find this even more difficult as they struggle to comprehend what is happening to their parent. Children of parents diagnosed with early onset dementia often feel confused, frightened at the gradual loss of their parent's memory and by the prospect that they too may suffer from this disease and anxious as a result of the added strain placed on their parents' relationship. Children may also feel isolated as their well parent's time is increasingly taken up with caring responsibilities.

I rise to speak on this motion tonight because of one particular family I met in my electorate. I would like to mention Jenie Aikman and her husband Kym, who was diagnosed with early onset dementia approximately three years ago at the age of just 41. Kym can no longer live in the family home. Jenie said to me:

The services and facilities are all targeted at older people with dementia. I had to be a full time mum and a full time carer but I wasn't even entitled to the same assistance that carers are when the sufferer is 65 years and over. Sadly, this means that you are forced to put your loved-one in an aged care facility sooner …

This is an issue to do with early onset dementia that we must pay attention to. I commend the motion to the House.

Bruce Scott (Maranoa, National Party) Share this | Link to this | Hansard source

Is the motion seconded?

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I second the motion. Today I rise to support the motion put forward by the member for Kingston that this House recognises the devastating impact of early onset dementia on the lives of the sufferers and their families. The member for Kingston and I both served on the health and ageing committee in the last parliament and I know that she has a genuine concern for many health related issues and I congratulate her for bringing this motion forward.

In part 2(a) of the motion put by the member for Kingston she notes that individuals who suffer from early onset dementia often face unique challenges. including the challenges of obtaining an accurate and early diagnoses and finding appropriate accommodation. I would like to inform the house that a test to diagnose early onset dementia has been developed by University of New South Wales researchers. The test will relieve patients and their families of the trauma and guesswork of misdiagnosis and make sure they get access to the right resources.

Frontotemporal dementia, FTD, is the second most common form of dementia in younger people and yet it is commonly misdiagnosed. It may also be much more common in those who are over 65 than is currently believed. Sydney is estimated to have at least 1,000 people with FTD and many of whom do not know that they have the condition. Professor John Hodges, who is based at the Prince of Wales Medical Research Institute has said:

These patients have typically had the condition for three to five years and they have seen a number of specialists before they come to us. This type of dementia can affect people in two ways—either through changes in personality and social behaviour or through loss of vocabulary. Behavioural changes include apathy, which is sometimes diagnosed as depression, loss of empathy and disinhibition. Those with loss of vocabulary and memory for words might be labelled as having Alzheimer's disease. It is essential that people are diagnosed correctly for a number of reasons. While there is no cure for FTD, there are drugs which can alleviate some of the behaviours, such as disinhibition and overeating.

There are also a number of gene mutations that can result in FTD that have been discovered in the last few years. Professor Hodges and his team want to screen for gene abnormalities if there is a strong family history of dementia. He said:

We can also help support the families who care for people with FTD. This disorder is particularly traumatic for families because they are left caring for someone who is robbed of their original personality. In many cases, the patients can't recognise emotions in others. There is very little awareness about FTD and it's very difficult to diagnose without sophisticated brain imaging. We hope this test will be used by professionals working in memory clinics, neurologists, geriatricians and psychiatrists.

In September last year the ABC reported new research that suggests that up to a fifth of all cases of early-onset dementia could be alcohol related, nearly twice the figure suggested by earlier estimates. Drug and alcohol experts say that the figures are a worry and may reflect an increase in binge drinking among young people. They say that too many people underestimate the long-term health effects of alcohol abuse.

Recently in WA it was reported in the West Australian that public health leaders have rejected calls for the alcohol industry to be part of a new alliance formed to tackle binge drinking among young people, saying it would be unable to be objective. But the WA Alcohol and Youth Action Coalition is an alliance of 63 community and health organisations convened by Fiona Stanley and Professor Mike Daube. This coalition realises that binge drinking is one of the most damaging practices in our society to people of all ages but particularly the young.

Dr Adrienne Withall from the Dementia Collaborative Research Centre from the University of New South Wales says that studies done across hospitals in NSW of people with young onset dementia suggest about 20 per cent of cases are alcohol related. Dr Withall says that it is clear that there is a link between sustained drinking and increased incidence of early onset dementia. However, she says that the link between binge drinking and dementia is less obvious. She said:

We're talking really about sustained drinking. I think given the increasing prevalence for people to binge drink, we just don't know enough about what it's going to do in the future. But when it comes to sustained drinking and the kind of daily drinking, we're talking about for men around about 35 standard drinks a week and for women about 28 standard drinks a week over a period of about five years.

Australian National Council on Drugs chairman Dr John Herron says he agrees that more research is needed, but says binge drinking is the most likely cause. He said:

Alcohol's basically a poison. It affects the liver and it also affects the brain, but it diffuses the brain. When you get strokes or blood vessel clotting occurring in the brain, that part of the brain is affected. Another part of the brain can take over the function of that other [part]—this is called neuroplasticity—but with alcohol it affects all brain cells.

Dr Herron says research has shown that while alcohol affects some parts of the brain more frequently than others it does affect the whole of the brain.

Yvette D'Ath (Petrie, Australian Labor Party) Share this | Link to 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)

Karen Andrews (McPherson, Liberal Party) Share this | Link to this | Hansard source

I rise today to speak in support of the motion on early-onset dementia. Dementia, by definition, is caused by various diseases and medical conditions that result in damaged brain cells or connections between brain cells. For a medical diagnosis, symptoms must include decline in memory and decline in at least one of the following cognitive abilities: ability to generate coherent speech or understand spoken or written language, ability to recognise or identify objects, ability to execute motor activities and ability to think abstractly, make sound judgments and plan and carry out complex tasks.

Dementia is a particularly sad and debilitating disease that takes hold of the one thing we often take for granted: our mental wellbeing. By progressively eroding the memories, intellect and social aspects of a person, dementia ultimately leads to a slow but eventual decline in physical functionality. When we think about dementia we typically consider the diagnosis and effects of the disease on the elderly. However, the tragic reality is that dementia can and does affect younger members of our community as well.

Early-onset dementia describes dementia in any person under the age of 65 years. It is estimated that around 250,000 Australians currently live with dementia and that by 2030 that number will increase to 590,000. There are also around 10,000 people with early-onset dementia, and this is projected to rise to 14,220 by the year 2020. Despite this figure, Australians still associate dementia with the elderly and are therefore unaware that early-onset dementia exists. The fact is that 25 per cent of people over 80 years of age have dementia, while less than one per cent of people under 65 years have this illness. It is crucial that early onset dementia is diagnosed as soon as possible to ensure that appropriate information, support and medication can be provided to treat this disease. The earlier a diagnosis can be made, the sooner and more adequately the issues of behavioural change, sexuality and employment issues can be addressed. While I will not speak on all of these issues today, I would like to focus on one of the main and unique issues which sufferers of early onset dementia face—that is, their ability to work. Because of both the mental and physical symptoms of this ailment, these impairments detrimentally affect a person's ability to carry out their job. This will often lead to an inability to continue or find employment, which in turn causes financial issues that must be faced.

Debate interrupted.