Ainsley Harding’s husband John was diagnosed with dementia while undergoing surgery for liver cancer in 2018.
“He was supposed to come home eight to 10 days after liver surgery, but he never came home,” Ainsley told REDnews.
Instead, John went into a hospital-level care facility for degenerative dementia, which is where the 77-year-old still resides today. Ainsley took on the role of being her loved one’s main carer – visiting him every day.
But when COVID-19 hit New Zealand and she couldn’t visit him during lockdown, John’s mental wellbeing quickly diminished.
“There was a mental and physical decline in John’s health during lockdown, especially in the second lockdown – from the isolation,” Ainsley says.
Ainsley now wants to raise awareness for dementia and the loneliness it causes for both those diagnosed with the degenerative disease, as well as their primary carers.
“If I could only give one piece of advice to a family affected by dementia, contact your local dementia organisation as soon as you can for support and education.
“I don’t think the isolation is good for him because it causes depression, and he has been experiencing depression since lockdown. I was also isolated in my own bubble during the first lockdown.
“It gets very lonely. John could go outside for a walk with one of the staff carers, but the lack of mental stimulation through not having visitors has deteriorated his condition even further.
“As the primary carer of the person you love, the thought of them is with you 24/7 and usually all you can do is walk beside them and hold their hand – but that wasn’t possible during lockdown,” she says.
“Even without COVID, dementia is an isolating and insidious disease, and most people have no idea how many people are actually affected by it,” she said.
A 2016 Dementia Economic Impact Report by Deloitte estimated that 1.3% of New Zealand’s population have dementia - 62,287 people. Dementia New Zealand estimates that there are around 70,000 people living with dementia in the country in 2020 and expect that number to rise to 102,000 by 2030.
Ainsley says that one of the reasons why primary carers don’t share their stories is because it’s such a long and emotional journey to go through with a loved one.
“Some people who could highlight their first-hand experience with the disease are too exhausted to share their journey once their partner has passed away.
“But I would like to encourage those who have been through it, to share their story and bring awareness to the forefront of this issue,” she says.
Ainsley and John’s journey has also included beautiful moments though. “Just before the second lockdown I took him to a pub to watch the Super Rugby game and we got him a beer.
“The smile on his face lit up the room. I think he registered a feeling of normality for the first time in a long time and he was so happy.
“It was a beautiful moment because in his brain that felt normal for him, which he hadn’t felt in such a long time,” she said.
Ainsley usually visits John each day and talks to him about their seven grown-up children, of whom she has a photo board in his room. She explains what each of them is doing, from the ones living abroad in Australia and Los Angeles, as well as the remaining ones in Auckland.
Ainsley can tell when John needs to rest, something a facility staff member wouldn’t recognise in his behaviour, and she usually sits with him reading a book as he takes a nap.
“He usually wakes up after his nap smiling when I’m holding his hand when he recognises my face.
“That’s one simple thing that we can’t do together during lockdown,” she says.
Dementia New Zealand has released a 2025 action plan to raise awareness and improve the level of service for the people it impacts, as well as appeal to Government for more funding.
There is no cure for dementia, which is why improving the level of service to those affected by dementia has been at the forefront of the action plan, as well as an economic outlook.
The economic cost of dementia to New Zealand increased by 75% between 2011 to 2016, with the total cost in 2016 estimated to be $1.7 billion, Dementia NZ says.
This cost is estimated to increase to $4.6 billion by 2050, they report. The plan was created by a small group of dementia NGOs, clinicians, academics and support providers - which they hope will be followed by the Ministry of Health.
What is Alzheimer’s disease and dementia?
Dementia is an umbrella term, which Alzheimer’s Disease falls under.
Alzheimer’s Disease is the most common of all the dementias – approximately 70%. Alzheimer’s Disease is caused by abnormal proteins that prevent messages being passed between brain cells, damage connections and eventually cause cell death. As the cells die, the brain shrinks.
Early symptoms may include memory loss, poor concentration, difficulty performing familiar tasks, mood and behaviour changes. There is no cure, but no cure doesn’t mean no treatment.