practical living
a timetable and work out, particularly if they’ re using public transport, how to catch a bus, how to catch a train and so on. So that way it empowers the person with dementia do be able to do things, rather than have to rely on others to do it.
The other thing I’ m really passionate about is the way people are looked at in care. I think we need to re-look at the way people are looked at when they’ re in an aged care community where, for example, if certain behaviours are manifested, straightaway the care workers blame them on the dementia. Often, a lot of those behaviours are not a result of what’ s happening with the brain. They’ re reactions which anyone, whether they’ ve got dementia or not, would have to a situation that’ s occurring at the time.
The other thing that I’ d like to see happen is that when people think of dementia, they don’ t simply think of memory. Now, even though memory can be an issue for a lot of people diagnosed with dementia, it’ s not the only issue. I’ m publicly getting out there the fact that there are other issues that impact upon people with dementia. I call them multisensory challenges. I have multisensory challenges. For example, if I’ ve been doing a lot of exercise and I’ ve been heavily involved in my advocacy
When I got a diagnosis of dementia... I felt ashamed that I could no longer provide for my family.
work, my brain gets tired, and there have been occasions when, for example, if I’ m walking down the street my partner might say,“ Oh, John, we’ re going to stop at this set of traffic lights. And we’ ll wait there and then we’ ll cross.” And I have said to her,“ What traffic lights?”
Now, people who are reading this are probably thinking,“ What’ s he going on about?” What I’ m saying is that there’ s nothing wrong with my eyesight, but the brain just does not compute what it’ s seeing, because certain parts of the brain are not operating properly because it’ s tired.
People with dementia will also have problems with their sense of smell. I left a gas stove on for about 18 hours one day, which is a danger. It’ s a risk, certainly a risk to having your house burn down. But since then we’ ve had the gas disconnected and we’ ve now got an electric stove which has an automatic off switch.
So the other thing, not only with smell but also senses of taste. My tastes have changed since I’ ve had dementia. I’ m eating foods I never used to eat before. So the other message I need to get out there into the community is that it’ s not only about memory. There are other issues which impact upon people with dementia. So in an aged care facility where people with dementia eventually find themselves, it could be, for example, something as simple as the lighting. The lighting can impact upon their behaviour. And when people get to the latter stage of their diagnosis, they often become nonverbal. So they do not have the capacity to communicate what their needs are.
Now, there’ s been some research done on this. And some of the research is indicating that a lot of the behaviours that are manifested by people who are in care with dementia are a result of unmet needs. It could be they’ re in pain, but they don’ t know how to communicate the fact that they’ re in pain. So, I think the practices that people adopt with people with dementia who are in care should be reviewed and looked at so that people with dementia that live in care get better quality of life. People with dementia should get the same quality of life in their latter stages as anyone else in the community. Whether you be an elderly person who’ s frail and have had to go into care, it shouldn’ t be any different. But unfortunately, some of the history on the way that people with dementia have been treated in care homes is not flattering to be quite honest.
What would you like to see happen in the next 5 – 10 years? Well, even though people with dementia and their families would love to see a cure for dementia, the reality is it’ s a long way off. I mean, they’ ve spent billions and billions of dollars trying to find a cure for dementia. There’ s some very encouraging research that is going on at the moment. In fact, I’ ll just cite one piece of research that looks like bearing fruit, and that is here in Queensland, at the Queensland Brain Institute, where they’ re working on a non-invasive laser therapy. And it’ s hoped that at some point in time it might produce a disease modifying therapy. In other words, what it could possibly do is slow down the progression of dementia.
So if a person were, for example, given this therapy and it slows down the progression of their dementia, it could mean that they spend five more years at home before they have to go into care. Now, I certainly don’ t want to go into care. And, in fact, currently Glenys and I are doing some major renovations to our bathroom to make it more dementia friendly and enabling for me. So we’ re being very proactive in modifying our home environment to make it more enabling for me as my dementia diagnosis progresses. And I suppose the spin-off of that would be, you know, Glenys becomes physically frail and so on and so forth. The work we’ ve done will also support her to live at home as long as possible.
So the other thing that I’ d like to see is for people to look at the environment and what adjustments they can make to make it more enabling for people with dementia. I often say when I’ m presenting publicly, if you get it right for dementia, you get it right for all other disabilities. We’ ve got a friend of ours who’ s got younger onset dementia. He’ s got a dementia of a particular type and his sensory challenge is such that if there’ s a white plate and a white saucer, and his wife gives him a potato, he can’ t even see the potato on the plate. So he’ s got visual problems as a result of the type of dementia he has.
This same gentleman, about 18 months ago, went to a public toilet in a shopping centre, and he walked in – the floor was white, the toilet was white, everything was white. He was in there for 20 minutes before his wife started to get worried about where he was. He couldn’ t find his way out. So one of the things Glenys and I have done through raising awareness for dementia is that some of the money we’ ve raised will allow people like our friend to get a contrasting toilet seat. Now, it’ s amazing how having a contrasting toilet seat can change that person’ s experience when they go to the toilet. You know, it can cut down on incontinence, it can cut down on a whole range of things.
So there are lots of things that can be done within the environment to make it more enabling for people with dementia to get around. ■
The University of Queensland’ s research can be supported by visiting: www. uq. edu. au / giving
18 agedcareinsite. com. au