University of Auckland data, commissioned by Alzheimers NZ, was released today to mark World Alzheimers Month. It paints a stark picture: 

• One in four Kiwis will die with dementia 
• Nearly 170,000 New Zealanders will live with dementia by 2050 
• Annual costs will top $10 billion – double today’s figure 
• Rates will climb fastest among Māori, Pacific and Asian communities 

To confront the worsening challenge, Alzheimers NZ, Dementia NZ, NZ Dementia Foundation and Te Mate Wareware Advisory Rōpū have published the refreshed Dementia Mate Wareware Action Plan 2026-2031. 

Alzheimers NZ is also calling on Government to: 

• Fairly fund the country’s 17 chronically under-funded dementia services 
• Create a national older persons’ health and aged care strategy, built on an integrated continuum of care 

In our Sep/Oct BayBuzz magazine, Jess Soutar Barron has written from a personal perspective about relating to friends or relatives suffering from dementia.

Forget-me-not

September is Alzheimer’s awareness month and forget-me-nots feature as an emblem. Alzheimer’s is most often linked to memory of course, but the small blue bloom also represents the importance of keeping those with the disease in our lives and not forgetting about them. 

In NZ, Alzheimer’s affects 90,000…and growing. Earlier this year, my friend C. died from it.

Ours was a vital but fleeting friend­ship based on entering each other’s orbits exactly when we needed a very particular sort of support. I needed her to show me what’s important in life … how a song can take you back to Alfie’s nightclub c1994 and ignite in you bliss you haven’t felt since you were 20 … a cheese scone straight out of the oven is the definition of heaven … coaxing a cat to relax on your lap is enough achievement for one afternoon … a soft hand held to your cheek is the most comforting gesture a human can offer another human.

C. needed me to help wrangle her kids. 

The first person diagnosed with ‘Alzheimer’s’, Auguste Deter, would tell her doctor Alois Alzheimer “Ich habe mich verloren” (“I have lost myself”). That sums up this disease. What’s important is for us to not lose them.

My friend’s decline echoes Deter’s. They were in their forties when things began to splinter. They moved into residential full-time care at around 50. Deter died aged 55, C. at 53.

C. was a great lifecoach. She gave me more than I could ever give her. Among those gifts, a glimpse into Alzheimer’s and some tricks that might help others who walk this path.

Yes, and …

Early on, conversations can become fractured and fighting it is frustrating for everyone. Adopting improv-theatre skills is a good way to make full use of time together. When told it was a cafe in Taradale where you first met, don’t correct and say “No, it was in Clive”. Instead say, “Yes and I knew immedi­ately we’d be friends”. 

Whatever your companion brings to the conversation, build on it. There’s no examiner ensuring the facts are right. It’s not a quiz. This is rapport, not a report, and the stories are a con­nection between you. Key is keeping those connections for as long as possi­ble. Emotional bonds persist way after cognitive decline. The disease takes a lot but it doesn’t erase relationships. 

One day we sat on the couch and watched Tangled with small children curled around us. C. gestured at the screen and told me, in a stage whis­per, the heroine was a prostitute, “she wants all the men”. “Yes and … she’ll get them by the look of her,” I responded. You just have to go with it.

Stunt double

Alzheimer’s takes away the ability to carry out a series of tasks in a certain order. From making a cup of tea to hanging out washing, life is a sequence of sequences. ‘Body doubling’ is work­ing alongside someone who is strug­gling mentally.

My friend and I employed this strat­egy many times over her last year at home. I would do the more complex sequences and she would work along­side me to carry out the simpler parts of the process. I’d fold shirts while she paired socks. I’d mix dough for scones, she’d grate the cheese. I’d cast on, she’d knit a line, I’d turn the granny square then pass it back to her.

Inclusion not seclusion

Even when things are quite detached and foggy it’s vital to keep including people with Alzheimer’s for as long as they are able, involving them in tasks that give a feeling of being valid and useful.

C. and I went plant shopping one day. It took ages to mooch around Green Door, there was so much to share, ponder, smell, touch. We left with a scarlet geranium in a terracotta pot. It gave us lots of opportunity to relive that day, talk about how we chose red over pink, how potting mix fell out into the boot and we just left it because there’s bigger things in life to worry about than a bit of dirt in the car. I told her over and over about the drive home, taking the corner too fast, upsetting the pot plant.

When Alois Alzheimer analysed Auguste Deter he found she had no sense of time or space. Here’s where we can be the anchor and the compass. You may find your companion wants to wan­der, to try and reorient themselves, to ‘find themselves’ again. Walk alongside them, literally and figuratively. C. nav­igated her neighbourhood by its land­marks. Even well into the disease she knew “the blue kindy” meant she was almost home.

There’s a moment in the evening, and this is when the disease has really taken hold, when some experience ‘sundown­ing’. As the light fades the starter motor goes and it takes someone like you – or me – to start things up again. Now is the time to sit side-by-side. To take a hair brush and gently pamper, to find laven­der lotion and massage a hand.

We can share time even though language is going, share space when even the notion of ‘home’ is confused. And with simple actions we can remind each other: “You are not lost to me”.