Dementia Awareness

Mrs POWER (Elder) (12:19): I move:

That this house—

(a) recognises that Dementia Awareness Month runs throughout the month of September;

(b) commends Dementia Australia for raising awareness and understanding of what it is like to live with dementia; and

(c) acknowledges people living with dementia require support and understanding.

This year Dementia Australia is calling on all Australians to consider how discrimination and a lack of understanding of the disease can impact people living with dementia, their families and carers. Their message is that nobody chooses to have dementia, but we can choose how we respond to the people in our lives and in our community who are living with dementia.

Dementia can happen to anybody. It is more common after the age of 65, and up to 30 per cent of 85 year olds suffer some form of the disease. Dementia is the second leading cause of disability in our community. Formerly known as Dementia Awareness Month, this year Dementia Australia focused their attention on Dementia Action Week, which took place from 16 to 22 September.

Dementia Action Week provides the opportunity to raise awareness about what dementia is and how it affects us. As an illness that usually affects short-term memory, it can also cause a loss of judgement, the ability to carry out day-to-day tasks and even the ability to speak. In its later stages, dementia can affect the ability to walk safely and to swallow. It can be caused by a disease such as Alzheimer's disease or by multiple small strokes. However, like all chronic diseases, it can be managed successfully, and there are ways we can assist our family, friends and those in the community to live better with dementia.

Dementia does affect everybody differently. As people with the disease grapple with memory loss, and the loss of other mental faculties, it can cause a range of emotions with behavioural and psychological symptoms. It is not uncommon for people with dementia to be angry or fearful. Imagine if you did not know where you were or why you were there, or who all the people were around you. Imagine if you felt alone and you did not even know what your name was. Wouldn't you, too, feel frustrated and perhaps fearful?

Understandably, this can make caring for people with dementia challenging at times. In some cases, people can feel relatively content, applying scenarios from the past to explain their current circumstances, but that can make comprehending their train of thought difficult for others. In one case I know of, a gentleman who was suffering dementia would struggle to recognise the people in front of him, and his ability to speak had been reduced. However, still being able to recall memories of people and places in the past, he told stories from long ago and would often have a little chuckle. While it was not possible for people around him to comprehend or even follow everything he was saying, his family was able to engage him in a way that supported him.

I think that one the best things about Dementia Awareness Month or Dementia Action Week is that it provides an opportunity to tune into how we can best support those around us who are living with dementia, and, importantly, how we can become a dementia-friendly community. Dementia Australia provides tips on how we can do that for any of our friends or family with the disease. They suggest:

Help your friend maintain independence. Support your friend or family member with dementia so that they can do as much as they can for as long as possible, giving them the time and space they need. I know my grandmother in Alice Springs, Nanny Anna, would often say, 'If you don't use it, you lose it,' and I think that applies to both our bodies and our minds.

Listen openly to people living with dementia and give them time to search their brain for the words that they want to use. Try not to let them feel embarrassed if they lose the thread of what they were saying.

Communicate clearly by keeping to closed-ended questions or ones with obvious answers, because open-ended questions can be confusing for a person with dementia.

Be realistic about memory loss. Someone with dementia will not remember everything, even recent events. Do not be offended if they do not remember something that is very special to you.

Try not to argue or order a person around, because this can make the situation worse.

Focusing on being kind, clear, patient and empathetic with those who have dementia appears to be the key. Having a family member or friend with dementia can be difficult for all involved, but the more we are aware of the disease and how to support those with it, the more we can help as a community. Becoming a more dementia-friendly community is beneficial for everyone.

As a local member, I am pleased to be involved in supporting people to understand about dementia and promote a dementia-friendly community and, as a part of the government, delivering health care for people with the disease. To this end, the topic of my first seniors' forum within my electorate was 'Understanding Dementia'. More than 100 people came along to hear guest speaker Jenny Adams from Dementia Australia.

Jenny was absolutely amazing. She was able to provide some really helpful information on what is normal with memory and ageing as we get older and what is not. She also spoke about how we can reduce our own risk of dementia I recall one of her key tips was that we should brush our teeth with the hand that we do not normally use—so, our opposite hand—as a way to keep our minds active. I hope everyone in the chamber goes home and does this tonight.

Mr Pederick: That's a challenge.

Mrs POWER: Yes. Of course, as with all of my seniors' forums, it was also great to have a chat and a cuppa with some of the locals after listening to the presentation. Absolutely key to my electorate, to all South Australians and to the healthcare system more broadly is our government's work to deliver a reactivated Repat.

As the house is aware, the Marshall Liberal government recently announced $70 million in funding to revitalise the site. This includes funding for an 18-bed specialised facility to care for some of our most vulnerable South Australians suffering from extreme behavioural and psychological symptoms of dementia. In addition, the funding also provides for an eight-bed specialised dementia care unit. Special acknowledgement goes to the federal member for Boothby, Nicolle Flint, who has secured over $1.3 million of federal funding per year to fund the operation of the eight-bed specialised dementia care unit, in addition to the 18-bed Ward 18.

The specialist dementia care unit will focus on reducing or stabilising people's symptoms over time, with the aim of helping them to move to less intensive care settings. As part of the design process for the project, the Marshall Liberal government has worked closely with people with lived experience of this type of dementia.

SA Health is currently in negotiation to partner with a non-government organisation to deliver the state's dementia hub, a dedicated dementia village including 60 places for people who have complex care needs. We are making the Repat health precinct a dementia-friendly community. As a government, a reactivated and revitalised Repat is just one of the ways we are supporting those in the community living with dementia. We will continue to innovate with our healthcare system to provide better care for people living with the disease and for their families.

Dementia Australia also has some great resources for understanding how best to support people living with dementia within our communities, and tips for families and friends, and I commend them for their work. By raising awareness about the disease and people who live with it, we can all play a role in becoming a more dementia-friendly community.

Mr PICTON (Kaurna) (12:27): I rise to support this motion and note the importance of Dementia Awareness Month, which has been running throughout September. I also commend the work of Dementia Australia for raising awareness and understanding of what life is like with dementia and acknowledge that people with dementia require support and understanding.

Unfortunately, a very large number of people in South Australia suffer from dementia, and the fact is that the number is increasing all the time. Not only is it increasing but there are more and more younger people with early-onset dementia as well. This is only going to increase into the future. More and more, we need to think about how we as policymakers and lawmakers can devise our community to be dementia friendly. Everybody in the community will need to think about this.

We need to make sure, in determining how our societies and communities are organised, we are thinking about how people with dementia can live in these communities. It is as simple as thinking about the layout and design of shopping centres and community facilities, and making sure that there is clear signage. These are all very important issues. Dementia Australia has been raising awareness on this issue for some time. We have held a number of functions at Parliament House over my 5½ years here to raise awareness. A number of us have said to Dementia Australia that we are happy to be champions for that here in this house.

Dementia Australia (or Alzheimer's Australia, as it used to be known) have run a number of community forums out in the community. A few years ago, we did one in my electorate, in Kaurna, which was very well attended. It was excellent to hear from people who suffer from dementia and also people who care for those with dementia on how we can best reshape our society to be dementia-friendly. I know that the member for Reynell is about to have a similar forum in her electorate, and I would encourage other members to do it in their electorates as well.

It is not just an important thing for policymakers and lawmakers to think about; our whole community needs to think about this as well. As I mentioned, we have an increasing issue in terms of younger onset dementia. I have spoken to a number of family members about their concerns around this. When someone has younger onset dementia at a serious level, we do not have the proper facilities for that here in South Australia. We urgently need to look at how we can make sure those people are better cared for in our society. I am sure it is something we can work on with non-government organisations and community organisations.

It is difficult for somebody in that situation to have to be in homes designed for people who are much older than them. That is not an appropriate place for them to be cared for. I think we need to improve our work to make sure we care for those people because, sadly, the number of younger onset dementia sufferers is increasing as well. At present, there are nearly 450,000 Australians living with dementia and 1.5 million Australians involved in their care, so we are talking about very large numbers of people. As the member for Elder was talking about, while it is important to have specialised centres, we need to realise that all our aged-care facilities are progressively going to have to improve their dementia care.

There are many hundreds of them across South Australia. I think it is unfortunate that, about six or seven years ago, the federal government pulled back a lot of funding in terms of specialised dementia care. You can imagine, particularly when we look at the pressures on our nurses and carers in aged care, if there are a few sufferers of dementia in an aged-care facility, they are obviously going to take a lot more time to care for. You might not have that much time because you might be a registered nurse who is in charge of 80 people. That does not give you many minutes in the hour to care for somebody with dementia.

There is a need for specialised care. I hope this is something that the royal commission currently underway is looking at seriously because I think that it is going to be an increasing need, an increasing problem. It is not only about care for people with dementia: if we do not have proper support in aged-care facilities, everybody else will also not get the attention they need in aged care. Hopefully, that is something that we will see the royal commission currently underway take very seriously and have strong recommendations on.

I congratulate Dementia Australia and all the volunteers who support them on their work, particularly all the carers for people who have dementia. This is a disease that is not only very difficult to go through but also very sad for so many people who obviously love their family members and friends who are suffering with it. It can be heartbreaking when those people are losing their memory and cannot remember particular things or particular people. To the people who care for them—the 1.5 million Australians and no doubt well over 100,000 South Australians who care for a loved one with dementia—thank you. Thank you for your hard work that can never be properly accounted or paid for. Our community would be at a significant loss without your dedication to your loved ones.

Dr HARVEY (Newland) (12:34): I rise today to support the member for Elder's motion to recognise September as Dementia Awareness Month. I commend Dementia Australia for raising awareness about dementia and also acknowledge the importance of our community in supporting people living with dementia and their families.

I very recently held a forum in my electorate about understanding dementia. It was presented by Liz from Dementia Australia and I have to say it was a fantastic presentation that covered quite a lot of very important areas. The presentation covered many of the facts around dementia and dispelled some of the myths and misunderstandings about it. It also highlighted some of those, such as what is normal forgetfulness versus other things that are perhaps more concerning. An example I certainly remember of that is this: if you are going to shops, it is not abnormal to forget where you parked your car, but it is concerning if you forget that you drove and start walking home. There were a whole number of other examples like that.

Also, and I think importantly, the presentation highlighted some of the things that we can do as a community to support those living with dementia to make their lives easier. I certainly learnt a lot and I think the enormous turnout from the community highlights how important an issue dementia is and the fact that it touches so many people—I suspect almost everybody—in some way. I think a lot of people were able to learn a lot through the forum, either learning about how they may deal with it if it was to be an issue that would affect them themselves, or also how they could help their loved ones.

Dementia is a significant condition that affects many people in South Australia and indeed across our country, and in fact I think across the industrialised world. It is the second leading cause of death in Australia, with almost half a million people living with dementia in Australia at the moment, and this number is set to increase over time as our population continues to age. Dementia is an age-related condition with about one in 10 people suffering from this over the age of 65, up to three in 10 over 85. It is much less common in younger people, but it does occur. There are approximately 27,000 people with younger onset dementia living in Australia.

Dementia is a term used to describe the symptoms of a large range of conditions that are responsible for a progressive decline in a person's functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and physical functioning. There are many different types of dementia, including Alzheimer's disease, which is the most common, vascular dementia, frontotemporal dementia, and Lewy body disease.

In South Australia, the Marshall Liberal government is implementing a number of different strategies to help address the care needs of people living with dementia. We are working with residential aged-care providers to build their confidence and capacity to care for people with dementia. This is being achieved through the provision of an in-reach clinical specialist service to assist in managing the care of people with behavioural and psychological symptoms of dementia, and through the provision of wraparound support to assist in the transition of residents back to aged care after a stay in an acute older persons' mental health unit.

The Marshall Liberal government is working with the commonwealth Department of Health on the rollout of the specialist dementia care units in South Australia. These will be places of care for people with behavioural and psychological symptoms of dementia where the symptoms are significant enough that the person with dementia cannot be cared for in mainstream residential aged care.

As the member for Elder also mentioned, the Marshall Liberal government will be opening a neurobehavioural unit at the Repat Health Precinct in the middle of next year. This will be an 18-bed facility designed to care for people with the most extreme behavioural and psychological symptoms of dementia. Symptoms of dementia of this severity are rare but can certainly cause great distress to the person with the condition, as well as to their loved ones. As part of the design process for this project, the Marshall Liberal government has worked closely with people with lived experience of this type of dementia and this has really helped us to understand how we can ensure that people are able to live their best life in the unit despite the limitations of their disease.

There is a lot that is not understood about dementia as a disease. There are certainly a number of risk factors related to it, such as cardiovascular disease, diabetes and high cholesterol, which some people might classify as being related to lifestyle or environmental factors, but there is also a suspected genetic component. Ultimately, dealing with this disease and the burden of disease within our community will require breakthroughs in medical research.

It is worth acknowledging that Dementia Australia plays a significant role in funding dementia research, offering about $1 million worth of project grants, travel grants, postdoctoral fellowships and postgraduate scholarships each year. Many of their research priorities include better understanding the causes of dementia, developing strategies to reduce dementia risk and slow the progression of disease and also to provide accurate and timely diagnosis, improve treatment and care options for people living with dementia and ultimately to find a cure, however that might look.

Importantly, though, I think that Dementia Australia's research support does provide a particular focus on supporting early and mid-career researchers in the field, which is critical for increasing the research capacity in this area but also in sustaining it and preventing its loss. That is critical at that stage of a research career, when the career can be quite vulnerable, and losing expertise is something that is very hard to get back.

It is also worth noting that in 2015 the federal government announced what was then an additional $200 million over five years, significantly boosting funding for dementia research. This is obviously a very key component in dealing with this condition. As the member for Elder mentioned, as did Liz from Dementia Australia at my forum, there is certainly a lot we can do as a community to make our community more friendly for those people with dementia.

A key part of that is understanding what it is like to live with dementia, to have greater empathy for what people go through and some of the challenges they face. For example, I certainly did not know that a black mat can look like a hole in the ground to some people with dementia. There are many other examples like that and, as the member for Kaurna alluded to, this does provide opportunities for public places, shopping centres and so forth, to adjust or consider how they might be able to adapt to make those environments more friendly for people living with dementia.

There were some examples we were shown at the forum of people who were living with dementia, who were telling some of their own stories. One of the stories I remember the most, and probably the most touching, was from a gentleman who made the point that inside he is still the same person, and I think everyone else who sees him makes that point. It is quite upsetting to see that decline in someone who was incredibly capable, and to see within themselves that decline is quite a sad thing. So it is important for us all to respect, to have patience and to be aware of what it might be like if we were in that position and how we can make someone's life better through our own actions.

There is no question that dementia is a serious and significant problem in our community. While we will continue to support and hope for better treatments, preventative strategies and even a cure from our scientists to come along and make this situation a lot better, there is a lot we can do ourselves to improve the lives of those in our community who are living with dementia. I commend the member for Elder for bringing this motion to this place and I commend it to the house.

The Hon. A. PICCOLO (Light) (12:44): I want to make a few comments in support of this motion, and I acknowledge the comments made by others. I will not repeat all the facts and figures and contributions other members have made, but what I would like to do is to focus on one part of the motion, which I support, and suggest that I think that the motion should actually go further.

The motion acknowledges that people living with dementia require support and understanding, which is certainly true, but I would add that the carers of people with dementia also require support and understanding. The reality is that a lot of people who have the disease are being cared for by family members or carers in their homes, and it is hard work for those people to care for family members and other people they are caring for who have dementia.

Clearly, the quality of life of the person suffering from dementia is diminished but, for those people—particularly family members—who care for a person in their home 24/7, it is also often very hard work. It can be quite distressing to see a family member who was once very active but is now less active because of this disease. The fact that we are living longer is probably part of the reason that there are more people being diagnosed with dementia. We are just getting to that age where the disease kicks in for an increasing number. Although, as the member for Kaurna said, there is an increasing number of people with young onset dementia as well.

It is very important that, while we have specialised beds and specialised services in a number of facilities, they need to be funded. As the member for Kaurna noted, sadly, additional funding for specialist support in nursing environments has been cut back by the federal government, which is sad because it makes it very hard for those people suffering from dementia to get the quality care they require. It also puts pressure on those people who work in those institutions and those facilities to care for them.

Another thing I would like to highlight—and I am disappointed that it has not been mentioned already—particularly for people who are aged and who have actually received some sort of aged-care package to receive support in their home, is that a lot of people (and I think it is worse for people with dementia and their carers) may be assessed and approved for aged-care funding with respect to some sort of package at home, but it can be nine months, 12 months or two years before the funding comes on.

In that nine months, 12 months or two years those family members have to care for those people out of their own resources, which makes it very difficult not only financially but also in terms of stress for those family members. It is sad in this day and age that governments do not make this a priority in terms of resourcing those sorts of services.

If we can afford to cut taxes for the top end of the market and cut taxes for corporations and multinationals, one would think that we have the resources to provide funding for those people who are being cared for in their family home not only to make sure that they get quality care themselves but also to support those families, because in the end those families do two things: first, they provide very strong care in the sense that there is a family bond and, secondly, they actually save the state and the community quite a bit of money as well, because quite often their work is unpaid.

For the small investment that the commonwealth and federal governments would make in this area the outcomes would be very positive. Apart from commending the member for moving the motion, one thing I would like to identify is that additional funding is required to support people with dementia living in their home or in aged care, as well as those carers who look after them.

I think it is important that we need to make sure that governments at both state and federal level, of any persuasion, get that message that this is not an area that can be prioritised at some later date. There are hundreds and probably thousands of families in this state who require funding for those sorts of basic services. I have known families where they have applied for funding through the aged-care system, which was approved, but the family member has died before the funding was approved and came through.

In essence, that is quite disgraceful in today's society. We are quite a wealthy society, and we should be able to care for those people who are most vulnerable in a better way and support those who care for them. With those comments, I commend the member for the motion.

Mrs POWER (Elder) (12:49): I would like to thank the members for Kaurna, Newland and Light for their contributions to this motion. Once again, in closing the debate I really want to acknowledge and commend Dementia Australia for all its work in this space, with a very, very special acknowledgment to everybody out there in South Australia, all South Australians, who have a family member or who know someone or who care for somebody who is living with dementia.

As I mentioned in my earlier remarks, it can be quite challenging at times, and the love that they offer in the face of what could be a challenging circumstance should really be acknowledged. So I pay my respects to them and acknowledge the member for Light's comments around the important role of carers and the contribution they make in our community. We should never take that for granted. In closing, I commend the motion to the house.

Motion carried.