Lisa* recalls noticing the early signs in her partner John*.
“I remember saying to my friends, ‘I feel like I’ve got a 5-year-old in the house’,” she tells the Herald.
“It was repetitive questions, it was weird things.
“Not that he’s big on being in the kitchen anyway, but the ice cream would go in the pantry or the fridge and the cheese or the milk might go in the freezer – I’m like, what the hell is going on?”
What she didn’t know at the time was that six months earlier, John’s employer had sent him to the doctor for a cognitive test in which he scored “below average” – but nothing was done about it.
“When I took him to the doctor six months later, the doctor said, ‘You did have a test six months ago and it wasn’t very good’. And I’d had no idea.”
Finally, four years ago, John was diagnosed with young-onset Alzheimer’s disease. He was 60.
Alzheimer’s is the most common type of dementia, with specific symptoms including short-term memory loss and difficulty learning new things. It can affect someone’s behaviour, moods, language and communication, and as it progresses, their mobility and motor skills.
The number of people with dementia in New Zealand is predicted to more than double by 2050.
A University of Auckland study commissioned by Alzheimer’s New Zealand found that by 2050, nearly 170,000 Kiwis will be living with a form of the disease.
But what’s the day-to-day impact of living with that diagnosis – on the person with dementia, and on those caring for them?
For Lisa, 56, who is based in the Western Bay of Plenty, that meant changing her job, her home and reassessing her future.
Lisa and John previously lived in the Waikato, before Lisa decided to give up her job in agriculture – a client-facing role that often involved travel – to be able to be there for her partner.
“John and I had a little place at the beach here that we used to come to on the weekends and for the odd holiday. We made that big decision to move over here.”
She now rears calves for a nearby dairy farm.
“It’s great physical work for me, and then I’m here during the day all the time to help John with anything.”
In the time since his diagnosis, her role in his life has gradually changed from partner to caregiver.
“I’ve been his caregiver for maybe 18 months – just as the deterioration’s come along and I’ve had to step up more and be there more for him.”
Being a caregiver involves a long list of practical tasks: all the cooking, mowing the lawns, household rubbish and recycling, helping her partner shave and tie his shoelaces.
“If we’re at a restaurant or cafe, I have to choose the food for him - menus and things like that are just too much. If we’re going out, I have to choose good clothes for him. If we’re not going out, he can chuck on anything and it doesn’t matter.”
She has to remind him to take his medication daily, because he no longer looks at his cellphone for reminders.
“I’ve got to do his texting for him. He used to build computers. He was a very clever man, and now he can’t text. He can no longer drive, so that means I get him to his appointments ... less socialising for me, because I can’t have a few drinks now and drive.”
Being John’s caregiver also involves a lot of repetition, she says. “It is a mental load ... his memory [lasts] five minutes maybe, and then whatever’s been said is gone.”
Amid it all, she acknowledges there are positives, affectionately describing him as a “hard case”.
“We spend a lot of time together ... he was always quite funny, but he’s actually very quick-witted now, and he just comes out with some great one-liners. Sometimes you’re like, ‘That’s very sharp.’”
It means, she says, that some people wouldn’t even necessarily know John has dementia.
“I can still communicate with him and we can have conversations, so that’s another positive for where I am in our journey.”
The couple have been together for more than 20 years.
“We don’t have children together ... to come and help out. He’s got his one sister, I’ve got some nieces,” Lisa says.
So it’s their close friends and local community who have been the biggest help, along with Dementia New Zealand support groups.
“Really good friends, that’s important for everyone, but for us as well. I think it’s great, and I put it down to [living in] a smaller town – great connections, great people.
“The support groups are good because it’s a very safe environment to talk in when you’re at your meetings, and you can share anything or ask anything.”
Lisa regularly sees a counsellor, who reminds her how important it is to “fill my own cup up first” so she can look after John.
“But then sometimes I’m filling my cup and he’s ringing six times, ‘Where are you? You’ve been gone all day.’ I might have only been gone an hour. It is a bit of a fine line trying to get that balance of looking after me, but also my partner.”
While there is plenty of support available for people with dementia in New Zealand, it can be a challenge to access for those living rurally.
“Tauranga Alzheimer’s have a lot for young-onset people, but it’s an hour’s drive for us. And that’s our fault, not theirs.”
If she were to get some extra help, it would have to be someone local, she says. Temporary respite care is available for people with dementia to enable their carers to take a break, but options are limited.
“I have talked to him about it: would he go into respite care? There’s no way in hell I’m getting him there at the moment ... the respites don’t all necessarily have [spare] beds,” says Lisa.
“Some people from over here are having to go to Hamilton to get a bed for a week for their partner, so I don’t think it’s as easy as saying, ‘Book him somewhere and go away for a week.’
“But I am conscious that you do get very jaded, and [I] should try to get some bigger breaks.”
Anyone diagnosed with dementia under the age of 65 is classified as young-onset. The challenge in those cases is that partners or spouses in the caregiver role are generally still in the workforce, saving for retirement, and have plans for what they want to achieve in life.
“I read so often about people, the same as me, who are in good jobs [asking], ‘Do I give it up? I’m still young, I should still be out there having my life.’
“That is a bit of a challenge, to not give up on my goals and things that I want to do.
“I’ve changed my job, we’re both under 65, so up until now there’s been no financial support because of what I’ve earned. We’re just going through that process now that I’m earning way less.”
She wishes there were part-time work available for John near where they live, to help give him a sense of purpose.
“I know there’s agencies around the country here and there that help people with disabilities and things get jobs. Something like that would be so awesome for him, even just something low-key, a couple of hours a day or a week.”
Lisa thinks of initiatives such as Auckland chef Ben Bayly’s The Restaurant that Makes Mistakes – the TVNZ series in which Bayly enlists the help of Kiwis living with dementia to run restaurant services.
“Everyone embraced it and loved it, it just gave them a bit of purpose. That really helps people, if they’ve got that purpose.”
*Names changed for privacy
Bethany Reitsma is a lifestyle writer who has been with the NZ Herald since 2019. She specialises in all things health and wellbeing and is passionate about telling Kiwis’ real-life stories.