Rob and Alison Board have enjoyed a life of optimism and hope, rich in love, family, travel, and adventure. They have embraced every opportunity, especially since Rob’s diagnosis with early onset dementia at the age of 61.
Both had successful careers in Sydney: Rob in finance, and Alison as a speech pathologist. Over time, they noticed Rob was becoming more forgetful and taking longer than usual to complete tasks. Alison says they knew something was amiss but initially put it down to stress.
Eventually, Rob and Alison made the decision to take early retirement. In 2015 they moved to Bonny Hills, where they settled into a relaxed lifestyle, met lots of people, joined community organisations, and travelled when they could. Rob joined the Mal de Mares Longboard Club, reignited his passion for drawing through classes in Bonny Hills and at the Glasshouse, and took part in the Hastings Valley Art Society Paint Out group.
In 2016, Alison discovered a memory loss training program at the University of Newcastle that she thought might help Rob.
“Halfway through a day of pretesting at Newcastle we were told Rob wouldn’t be eligible for the program. The psychologist and neurologist couldn’t give us a diagnosis but recommended we follow up on it by having amyloid scans in Sydney and consulting a geriatrician.”
“We were advised to get our legal affairs in order – wills, power of attorney, enduring guardianship etc – as it is a lot easier to do this prior to the diagnosis of dementia than after,” says Alison.
Soon after, they saw a geriatrician who diagnosed Rob with early onset dementia/Alzheimer’s. Because Rob was under 65, the geriatrician advised them to apply for an NDIS package as his condition worsened.
Under the Federal Government’s Aged Care regulations, aged care providers cannot accept anyone under the age of 65. This means that care for people under this age with a disability, including early onset dementia, is provided through the National Disability Insurance Scheme (NDIS).
Being 20 years younger than most couples on the dementia journey was challenging. Early on, Alison made it a priority to educate herself about the condition.
“I was constantly online learning all sorts of things, going to information sessions, doing courses with Dementia Australia, Carers Gateway, Step Up for Dementia, the University of Newcastle and so on. I also joined the Dementia Friendly Community group in Port Macquarie. Through these efforts, I realised we were not the only ones going through it and developed my carer and advocacy skills.”
Between 2016 and 2019, Rob and Alison made the most of their time together, travelling to places like Italy, Spain, Morocco and Croatia. Rob also went skiing in Japan and surfing in the Maldives with mates who were aware of his condition. It was clear he was declining and wouldn’t be able to manage trips like these again.
“We had a wonderful time, even though we knew things were starting to go pear-shaped,” says Alison. “Rob was becoming quite dependent, but he was still Rob.”
It was during Alison’s recovery from a knee replacement, at the start of the COVID lockdowns in 2020, that they finally applied for an NDIS package.
“I thought we had been managing quite well but, because I was immobile, the NDIS assessor saw how much support Rob needed and, as a result, approved a substantial NDIS package. This enabled us to care for him at home for the next four years,” says Alison.
With the support of the NDIS package, Alison organised support workers so Rob could continue doing the things he loved. He kept up with his art, played golf or tennis, and surfed. As his capacity gradually declined, the support workers adapted, taking him on drives, surf checks, coffee outings, and picnics. Rob also attended the Omnicare Dementia Support Day Programme at Greenmeadows three days a week, where he participated in activities, painting, and bus outings. This continued for almost a year until Rob was no longer able to engage, even with one-on-one support and tailored modifications to his daily program.
Rob and Alison’s adult children, Adelaide and Hugh, both moved to Bonny Hills after Rob’s diagnosis.
“The kids have been (and still are) great with Rob, but it has been a real struggle. There has been sadness, grief, and loss. We’ve all had mental health glitches along the way,” says Alison. “We just have to take it day by day. Rob is losing his capacity to communicate, but if he’s in the moment he will smile at me, so I treasure that.”
Rob spent a couple of weeks in respite care at Emmaus Home in 2023. This experience confirmed for Alison that she needed to look beyond a conventional aged care facility when the time came.
“I had read about the construction of Emmaus Village and its proposed model of care, so I got in touch. Clare Wallace, their Dementia Support Consultant, came to visit us. This was the beginning of the plan for Rob’s transition into care.”
“Rob’s physical needs were escalating, so it was actually a relief when he moved into Emmaus Village in May 2024. He settled in so quickly it was unbelievable. I expected him to want to come home. I expected him to be sad. He never was. He was looked after really, really well,” says Alison.
“In the beginning it was tough for me because I was wanting to talk to someone at Emmaus Village about something all the time, but Rob has settled in well. I am very satisfied.”
For Alison, a couple of moments stand out as examples of how thoughtful the Emmaus Village staff have been.
One was the simple but creative solution they found when Rob was reluctant to get into the shower.
“They took a selection of the photos I had sent in with Rob, enlarged and laminated them, and stuck them on the shower wall to help him feel more comfortable. They’d chat to him about the photos while he was having his shower. How lateral is that for dementia care? That just sold me,” says Alison.
Another happened a few months later, when Rob’s doctor suggested supplementing his diet with Sustagen.
“Rob would often wander down to the café, so very thoughtfully some Sustagen and cookies were provided to the café supervisor, Melody. She took on the role of spotting Rob coming and would make him a Sustagen ‘milkshake’ so he could sit and have morning tea independently if he wanted to. How good is that?” says Alison.
At Christmas, the staff again went out of their way to make Rob’s first Christmas in care a special one.
“When our plans for Christmas Day had to change because Mum was unwell, Kate Koivu [Home Companion Lead] was wonderful. She understood the dilemma and at the last minute welcomed all three of us for Christmas lunch in Rob’s house,” says Alison.
“A small group of residents, relatives, and staff sat down together for a Christmas lunch that felt so much like family. It felt like Christmas in Rob’s home. It was one of the nicest Christmases I have had in years.”
“Adelaide, my daughter, was delighted that Rob recognised her and gave her the biggest hug. She said that was the best Christmas present she could have had.”
“He would not be like that if he was not happy and settled at Emmaus Village and if they weren’t doing a good job.”
Alison recommends the Emmaus Village model of care because it feels more like supported living than aged care.
“The model of care at Emmaus Village is fantastic. It is not institutionalised. The food is home-cooked. It is a small group environment, and there is flexibility. The physical environment is like a home. Having freedom of movement, being able to roam around is like home. The dignity of being involved in making choices is like being at home.”
“I am incredibly happy that Rob is at Emmaus Village. It has made the difference between me and the kids being much sadder, I am sure.”
For those just beginning the dementia journey, Alison’s advice is simple.
“Be open to talking about it. Start with your GP. Get an assessment from a geriatrician, and learn about dementia, because it is too hard to deal with on your own. There is a lot of support available. You just have to search for it.”
For more information about Emmaus Village visit emmausvillage.org.au or call (02) 8201 1000.
