Colin Mathura-Jeffree tells INsite what inspired him to become Alzheimer’s New Zealand’s Champion for Dementia.

In September 2013, I became Alzheimer’s New Zealand’s first ever Champion for Dementia, a role which sees me working alongside the team at Alzheimer’s NZ to promote wider understanding and awareness of dementia. But my journey to this role began many years ago, when I was just a child.

My grandmother Eileen was one of the most wonderful women you would ever meet. She was a huge influence on my childhood and I have the most amazing memories of the brightly coloured cordials she would make for my siblings and I, and her vast vegetable garden which she was forever trying to inspire us to tend to. And she had the most beautiful smile that never left her face.

Little by little though, it became clear to us all that something was wrong. Grandma seemed to be struggling with some basic situations, and then suddenly one day she wasn’t allowed to pick us up from school anymore. Grandma had been diagnosed with Alzheimer’s disease, the most common form of dementia.

The family very much tried to keep Grandma’s dementia hush-hush. As a child I was protected from the conversations though we knew there was talk about Grandma. Myself, my brother Eric and sister Kathleen didn’t miss a beat- we would listen in as best we could.

The family was divided in what care should be provided. No one really knew what to do, although everyone wanted what was best for Grandma. Our family tried to keep Grandma’s dementia private – it was the 80s and there was a duality of keeping the situation private and trying to get a cure. But when you know someone with dementia you know they will display themselves unnaturally in a natural situation so I felt the adults were on high alert – to protect Grandma, and to protect her dignity.

After a brave fight, Grandma passed away in 1998 when I was 26 years old. Without a doubt I believe Grandma’s experience with dementia could have been different if it was talked about more freely, which is why years later I sought out Alzheimer’s NZ with the aim of helping New Zealanders to better understand the condition and talk about it more freely. We all need to share our knowledge and share our experiences with dementia.

I’d also like to encourage New Zealanders to be a hero to the person with dementia. Know your limits and know what you’re capable of and do not try to go beyond that. Get help. Ask questions. Sharing literally is caring and the right people in life will step forward to help you if they know you need it.

Treat the person with dementia with the same love and courage you would want to be treated with in the same situation. Showing love and protection to a person with dementia should never be seen as a burden.

About dementia

  • Dementia occurs as a result of physical changes in the structure of the brain. These changes can affect memory, thinking, behaviour, personality and emotion. Because dementia is a progressive syndrome, symptoms will gradually worsen.
  • While there are no accurate figures, Alzheimer’s NZ’s best estimate is that around 50,000 people in New Zealand have dementia. This is forecast to increase to 150,000 by 2050 as the population ages.
  • If you are worried that yourself or someone you care about may have dementia you should see your GP.
  • Support and advice is available from Alzheimer’s NZ and local Alzheimer’s organisations. Visit www.alzheimers.org.nz or phone 0800 004 001.

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