Online exclusive
What’s It Like To Be… is a fortnightly column where New Zealanders from all walks of life share first-hand experiences. Here, on World Alzheimer’s Day, Alister Robertson talks to Paulette Crowley about being told, aged 60, he had young onset Alzheimer’s Disease.
When I was 60, I recognised there were a few things happening that were uncharacteristic for me, around what they call “executive functioning”. I mentioned this to my wife and she was also a wee bit concerned.
My career was in finance. I was doing spreadsheets, and I thought I could follow everything on them. But when I stood back and looked at the big picture, that wasn’t the case at all. I was struggling to understand the numbers and asked my wife to check. She didn’t have a finance background but she could see things weren’t right.
Sometimes, I would be in a conversation and I would zone out. It might have been for a short period, like 10 or 20 seconds, or it could have been a minute. It was just a blank period.
These things don’t just suddenly happen, it’s a gradual thing. We don’t actually recognise these changes - it’s more the people around you who start to pick it up.
The GP did some cognitive tests which I scored reasonably well in, but she referred me to a neurologist anyway. He did the same sort of tests and found the results were okay but still referred me to an older people’s mental health team to see what they thought.
They did more in-depth testing. In the end, they confirmed I had young-onset dementia of the Alzheimer’s type. The tests indicated I was sitting on the right-hand side of the bell curve. I could have been sitting there for five or 10 years; they didn’t really know, but it drew a line in the sand at that initial time of testing.
It was a shock to get the diagnosis. My father was also diagnosed with young-onset Alzheimer’s when he was about 60. He died in his early 70s. I helped my mother to look after him but he was put into residential care in the last year of his life.
The psychogeriatrician told me it was unlikely that a cure would be found in my lifetime but there were things I could do to minimise the progression of the disease, like not smoking or drinking alcohol, reducing stress as much as possible, eating well and exercising. He told me I could keep working but I should avoid things that were too difficult and stressful and try to do things I enjoyed.
I took on board what the doctor said and thought, “I’ll do everything I can to enhance my wellbeing as much as I can.” I tried the keto diet - which some researchers think can help dementia - but I didn’t think it was that healthy, not being able to eat a variety of vegetables. Now, I eat a Mediterranean-style diet and ride a bicycle a lot.
The doctor added that at some point, I wouldn’t be able to drive.
A few years later, I had a seizure, which turned out to be related to my dementia. I wasn’t allowed to drive for 12 months. After that, I was still a reasonable driver but I was conscious I was a bit overcautious on the roads because I was scared I’d have another seizure. I decided it was time to stop driving.
I stopped working about 18 months after the diagnosis. It was fortunate that we had our own business and my wife helped me to close it down when the time came.
When I finished work I found I still needed to do something to stimulate my brain. Some of the things recommended for that include learning a language or playing an instrument. Language was not my forte at school, but through a dementia day programme, a group of us played percussion. It’s certainly a challenge -- not only do you have to try to keep the timing, but also you have your hands doing different things at different times. I’ve ended up playing the bongo drum.
Shortly after my diagnosis, I joined a group of people who were also diagnosed at a younger age and were still reasonably active. Being in that group encouraged me to learn more about dementia. I ended up joining Dementia Alliance International and got involved in advocacy. There probably aren’t many of us in New Zealand doing this sort of work, and yet those involved in the dementia sector say they need to hear more from the voices of people who actually have the condition.
As soon as dementia is mentioned, everyone thinks of the end stages, like not remembering who people are and not being able to talk or swallow. But residential care is not necessary until the end. People with dementia don’t know what’s going on at that point, but it’s tough on their families.
So, dementia is not an instant death sentence. It’s like a lot of health conditions, in that you’ve got to pick it up early. This then provides the opportunity to determine your choices and plan ahead.
Ten years after my Alzheimer’s diagnosis, I’m feeling good. In fact I feel better now than I did five years ago. My seizures are under control with medication and there is some research indicating that when seizures are linked to dementia, the control of them may slow down the progression of the disease.
I’m still riding my cycle and looking after myself. I decided on my 70th birthday this year that I would enter the Lake Taupo Cycle Challenge. It will be my 10th time doing the 160km ride.
I’m also on the board of Alzheimer’s NZ. In board meetings, I always ask to speak last, so I have time to process what I’m going to say. There are a lot of ways to deal with life and develop strategies to make it easier and enjoyable.
Alister Robertson is a board member of Alzheimers New Zealand. He was instrumental in developing an app that helps people with dementia to tell their life story, called My Life’s Journey app, and was awarded a Minister of Health Volunteer Award for outstanding achievement in the community or non-government health category in 2022. He was also awarded the Queen’s [now King’s] Service Medal in the 2024 New Year’s Honours list in recognition of his services to people with dementia.
