After accompanying her father on his dementia journey, Sandy Bay’s Leslie Harris created a website for those going through the same ordeal and finding it hard to get information.
Leslie has been a Waiheke visitor since her family bought a house in Sandy Bay in 1976. Now that her daughter Jessica is living in that house, Leslie’s visits are more frequent.
“When dad was diagnosed with Alzheimer’s, at the time we were going back and forth living here and in Auckland. There weren’t many resources at the time and the ones available weren’t easy to find. There was nothing that said ‘Hey, you got dementia, this is what you should do’,” she says.
Leslie’s father, Garth Harris, passed away when she was 50 years old, seven years after he was diagnosed. At the time, Garth was the first patient to try Auckland University’s Alzheimer trials. The study still goes on after Garth’s passing.
“The diagnosis can be quite devastating for people. We have over 70,000 people in New Zealand who are diagnosed, so imagine the people who aren’t diagnosed that are forgetting things and aren’t doing anything about it,” says Leslie. “We have the baby boomers coming through, which means a huge number of people will need proper caretaking.”
The website Harris List was launched in early December 2022 and dementia specialists are already recommending it to patients and their family members. Its layout is pretty simple and straightforward and it covers key topics like diagnosis, types of dementia, how to get assessments, money matters, funding, medication and care.
“The site is all dementia friendly. We learned that the final colours you can see in the last steps of dementia are black, white and green. The designer that I had wanted to make it stylish with beautiful images but I asked him to be as simple as possible,” says Leslie.
Leslie just got her Diploma of Dementia Care at the University of Tasmania, and is now planning to develop an education programme for how to keep communicating with someone with dementia.
“My dad thought I was his sister at times or repeated the same stories over and over. That didn’t matter, I went with it and enjoyed every moment with him,” says Leslie. She also would like the programme to be certified by NZQA as a course for upskilling caretakers and nurses – and even help high school students who are looking to follow the caretaking path to get credits at school.
During a visit to her general practitioner, he asked her if he could refer his patient to her website. That’s when she knew she could turn the website into something bigger.
“About half our referrals come from health professionals, the other half are people who reach out looking for support themselves. Harris List provides an easy-to-use site where carers and families of people living with dementia can go to find the links, the information, and the resources to need to navigate their way through the journey of dementia,” says Dementia Auckland clinical lead Rhonda Preston-Jones.
Garth’s favourite spot on Waiheke was Sandy Bay but he also loved the island’s weather, its tranquillity and community.
“We were here every weekend. Six weeks in Christmas and in 2009 my parents retired here. When he got dementia, it got harder and harder and a bit isolating for mum, so she needed to move back to the mainland.”
“He would’ve loved to stay here. Waiheke was his place. Its serenity, the beauty of it, the birds and the trees… It was just a connection he had with the island,” says Leslie.
According to Alzheimers New Zealand, care partners (for example, family members) currently provide one million hours of unpaid care weekly. The burden of unpaid care is higher for Māori (11 percent higher than Europeans), Pacific (12 percent higher) and Asian carers (21 percent higher), primarily due to these populations’ lower rates of utilisation of aged residential care.
In 2012, the World Health Organisation declared dementia a global health priority and in 2017 the organisation called on member states to develop their National Dementia Strategies by 2025. Leslie is working alongside central government, Dementia New Zealand, Alzheimers New Zealand and the NZ Dementia Foundation to develop the Dementia Action Plan for NZ, launched in May 2020 with a 2025 target date. • Silvia Massa
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