Seniors Housing & Healthcare Trends

LOS ANGELES: An innovative support program that offers people living with dementia and their partners a respite getaway has been rolled out around the country.

Staying at Home Program is helping people who live with dementia to stay at home longer.

Trevor was a man with a memory so sharp it could rival the most advanced camera lens. Even at the ripe age of 70, he could effortlessly recall intricate details of his childhood. But as he reached his mid-seventies, those closest to him noticed a change in his behaviour.

“He couldn’t remember things that had happened recently. And you could see he could not engage in conversations,” his son Simon Mander recalls. “He was a very social man. But then he started to become a bit withdrawn and choose not to go to social events, which was really unlike him.”

It wasn’t long before Trevor decided to seek a checkup. He received the test results and was relieved to discover what was wrong.

“He kind of quite happily said to me, ‘Well, we know what the problem is. I’ve got dementia’,” Mr Mander says. “While he may have thought that receiving a diagnosis was a good thing, I knew that the journey ahead would be challenging, particularly for my mum.”

Each week more than a thousand Australians are delivered the diagnosis of dementia, a disease that’s incurable and terminal. Alzheimer’s, which accounts for about 60–70 per cent of dementia cases, is not a disease that only affects memory, as many assume.

The disease works slowly, steadily disabling the person, impacting various cognitive processes, such as attention, judgment, and thought organisation, as well as emotions and personality. Loved ones watch from the sidelines, often heartbroken to see a once-vibrant parent or partner struggle to remember their birthdays or lose the wit and intelligence they once had.

Due to stigma, symptoms and decline often happen in private, which can make figuring out how to live with the illness isolating and frustrating – both for people with dementia and those who care for them.

Mr Mander’s mum cared for Trevor for five years until it became unmanageable, and he moved to a nursing home.

“I felt sorry for Dad seeing his decline and seeing he was not always aware of what was going on,” Mr Mander says. “I felt sorry for mum as a carer to have somebody that, up until that stage, had been quite independent and old school manly man type thing, and having interests that kept his mind active.”

In 2022, it was estimated that 401,300 Australians were living with dementia. Australian Institute of Health and Welfare estimates predict that the number of Australians with dementia will more than double by 2058 to 849,300 people.

Staying at Home is a program providing an introduction to respite to people living with dementia and support to their caregivers. It’s a short-stay residential program inviting up to six couples to an Airbnb-style retreat for three days. The program is delivered by HammondCare and is entirely free for participants, thanks to funding from the federal government.

“We invite up to six couples where one person is living with a diagnosis of dementia to a beautiful retreat in a beautiful venue for three days. And over those three days, we provide a comprehensive and unique program of support for our carers and guests living with dementia,” team lead Tom Gauci explains. “We really want our carers to see respite as a service that can be accessed and should be accessed quickly and early rather than waiting for a crisis point.”

The program offers carers a safe space to meet others going through similar experiences and dealing with similar frustrations, anxieties, and questions. Delivered by skilled Dementia Consultants, carers learn what dementia is, what to expect when navigating the changes that come with a dementia diagnosis, and even touching on sensitive topics like sexuality and intimacy.

The program is ambitious but based on best practice models, says Holly Markwell, the national program manager at HammondCare.

“It came really out of the findings of the Royal Commission into Aged Care which identified carers lacked confidence to use respite, and when they did, it was often at crisis point,” she says.

According to Ms Markwell, around 1.5 million Australians are involved in caring for someone living with dementia. Two out of three people with dementia live in the community, rather than in residential aged care.

“We know they feel isolated,” she says. “It’s confusing to access services and just that lack of confidence to know that other people can help support their loved one who is living with dementia”

The purpose of Staying at Home goes beyond simply providing information and support. It aims to empower people living with dementia and their carers to continue living together at home for as long as possible, demystifying and preparing for respite.

Ms Markwell says the confidence boost they see in participants is “really incredible”.

“One of our participants in Tasmania recently said it’s the most relaxed he has felt in 10 years, which is amazing. Another comment from Queensland just recently from a program there was that ‘you showed me, my husband, as he used to be, I just had this window of insight into how life could be different’,” she says. “We want people to know we are here actually to support them, and it’s all free, and they don’t have to go through my aged care or any other kind of rigmarole, and there’s no red tape to get into this program.”

Mr Mander says support and education will help families plan their future ahead of reaching crisis point.

“A program helping families stay at home for as long as possible is needed,” he says. “Mum found the experience of dad quite traumatic. The people that are supporting the dementia sufferer need support around that too.”