How can we better support people living with Dementia?

Insights

Dementia is a normal part of ageing, isn’t it? Misplacing your keys and struggling to remember names and places? No, but it’s one of the common misconceptions people have about dementia.

Because of these misconceptions, many people are unaware of how frightening dementia can be.

It’s the second leading cause of death in Australia and the leading cause of death for women. As mentioned by Richelle Hunt, the host of the Conversation Hour on ABC Melbourne,  “This year, it’s estimated that there are around 400,000 Australians that are living with dementia, and it’s also estimated this year that around 1.5 million people are involved in the care of someone who was living with dementia.”

The discussion during the episode titled “How can we better support people living with dementia?” brought up a lot of topics about dementia – signs and symptoms, type of dementia, the stigmas surrounding the disease, etc.

You can listen to the full episode here.

The conversation started with Bobby Redman, a retired psychologist, dementia advocate, and member of the Dementia Australia Advisory Committee, who shared her experience when she was diagnosed with frontotemporal dementia in 2015.

Initially in denial, she attributed her personality changes to work stress. But when her friends intervened, she visited her general practitioner, which led her to get tested.

She also consulted a neurologist who had already suspected frontotemporal dementia, but the diagnosis was confirmed a year later when her scans showed mild cognitive impairment. Over time, it progressed into a full dementia diagnosis, and things got tougher for her.

However, despite having a carer to assist her, the carer lacked the necessary qualifications to meet her needs.

“I have an aged care package, so I have a carer come in. And she’s a lovely lady, and she does bits around, but she wouldn’t notice what’s going on for me. She doesn’t have the training. She doesn’t have the qualifications.”

Bobby added, “I don’t believe that there is enough understanding generally or training for people to be able to look after us in the way that we want to be looked after.”

Dementia is not a single disease. There are over 100 types of dementia, and it presents itself differently in each person.

According to Darren Midgley, CEO of Chaffey Aged Care, “Each person who is diagnosed with dementia has very specific needs. It’s not a generic one-size-fits-all.”

And that’s not the only problem that she has encountered. Because of the general lack of education about dementia in the community, there are stigmas and stereotypes around dementia that prevent people living with dementia from receiving the care they deserve.

That’s why Dementia Australia and other organisations do their part in educating the community by providing fact sheets, news and information, and resources to support those living with dementia, their families, and caregivers.

“[Whether it’s] a family member, a friend, a work colleague, a neighbour, we are all going to encounter [dementia]. We need to know how to respond so that we can maintain quality of life with dignity and respect for these people,” says Penny Whitfield, Helpline Advisor at Dementia Australia.

As Bobby’s caregiver still learns more about providing dementia care, Bobby relies on her phone to remind her to do things. “I can’t tell you what I’m doing in 10 minutes’ time. My phone tells me. Luckily I’m good with technology,” said Bobby.

And speaking of technology, today’s technological advancements have come a long way in revolutionising the healthcare industry.

Dr. Maggie Haertsch, a Consulting Clinical Research Director at Talius, introduced a platform they are working on that changes how dementia care is provided.

“It’s a tool. It’s a way of having more data-informed care, and you can do it remotely, and we’re putting it into residential aged care services as well.”

“The work originated through some early research that CSIRO did, and we use the algorithm from that platform. It started [with] in-home care, very much like Bobby, someone living alone at home that needs lots of reminders. People can log in and see, you know, from having a SleepSense underneath the bed that can see whether you’re getting up out of bed or not, to humidity sensors in the bathroom.”

And in this day and age, we must view technology as an ally rather than something to fear because it has the potential to profoundly impact and improve various aspects of our lives, especially with healthcare. By embracing technology, we can unlock new possibilities and enhance the quality of care we provide.

You can learn more about Talius here.

But even with the most advanced technology, the most important thing we need to remember when caring for individuals with dementia is that we are dealing with human beings.

Even if we’re not equipped to provide care specific to their needs, the best way to support them to live a full life and a life with dignity is to treat them with compassion and respect.

“No matter who that person is, somewhere in there, they’re still there. And we’ve got to remember that.” Neta Kirby, Sandplay Therapist in Shepparton.

As long we are educating ourselves about the stigmas and stereotypes surrounding dementia, the challenges faced by those diagnosed with dementia, and the critical need for trained and qualified caregivers who can understand and meet their specific needs, we are one step closer to providing better support for people living with dementia.

Useful links to go for more information on Dementia:

Dementia Australia 

Dementia Australia is the source of trusted information, education and services for the estimated more than 400,000 Australians living with dementia and the more than 1.5 million people involved in their care. We advocate for positive change and support vital research.

Dementia Services Australia

When a person living with dementia is experiencing changes to their behaviour, we work with you to understand the causes – and help you improve their quality of life.

Dementia Training Australia

Dementia Training Australia (DTA) is a consortium funded by the Australian Government to provide nationwide education and training on the care of people living with dementia.