YVETTE BATTEN/FAIRFAX NZ
The University of Auckland Centre for Brain Research clinical research nurse Karen Smith.
New Zealand has a long way to go before becoming fully dementia-friendly.
The University of Auckland Centre for Brain Research clinical research nurse Karen Smith, who was in New Plymouth for various speaking engagements, said those at a Government level have been slow to take action.
"For me a dementia-friendly model is about giving everybody the best quality of life possible."
She explains that dementia is an umbrella term used for many different syndromes, all of which have varying symptoms.
"Somewhere along the line those symptoms are going to marry up with somebody else in our community."
"For instance someone with a hallucination with dementia may mirror somebody with schizophrenia, somebody who is struggling with visual perception may mirror somebody with visual disability."
"If we embrace the dementia-friendly notion, in effect we virtually meet the needs of every member of our community whether they're a permanent resident here or a visitor."
While the response from individuals and some organisations is enthusiastic, so far she's struggled to get a response from MPs about becoming a more dementia-friendly society.
"I've not heard anyone from our Government stand up and say, 'Hey look, we need to do this' because it also has economic implications.
"The more people who are diagnosed, and we are seeing a steady increase in the number of people being diagnosed, if we don't support them to live well they're going to be needing our care facilities a lot sooner, which is going to be a huge drain on Government resources."
"Even though I come at it primarily from a humanitarian perspective there is a political and economic argument to be had there as well."
Making communities dementia-friendly could include things as simple as making street signs more readable or altering zebra crossings.
"When they see a black floor surface against a contrasting colour, especially a pale colour such as white, they see the black as holes," she said.
"Some people I've seen have been inclined to leap from one white stripe to the next and then get really exhausted."
The whole world outside can turn into a frightening place so the dementia sufferer stays at home, which leads to social isolation and rapid decline.
Being dementia-friendly also means that people notice each other and look after one another.
She uses the example of a man with dementia who eats at the same cafe every day. When he doesn't turn up the staff ring his carers and let them know.
And it's not just an older person disease. "Every community team that I've ever talked to, both here in New Zealand and in the UK, is saying that they're seeing far more referrals come though from people under 65.
"That's going to have financial implications for them, their families."
Employers and employees should watch for warning signs in the workplace too. Smith has heard of cases where employees were bullied by fellow staff members for mistakes or misplacing things.
"His colleagues thought this was hilarious so they did things like hide his lunch or hide his work equipment. Once they realised that he'd actually got dementia they were gutted to think that they'd made his life worse."
It's an international issue, she said. "We don't have a cure for dementia. We don't even have any real new effective treatments on the horizon. They're still at the animal level, most of them."
Smith explains that working in the dementia field has been a life-long passion. Her first exposure to people with dementia, though she didn't know about the disease at the time, was at the age of 14.
"We had a school project whereby on a Friday afternoon we'd go out to older people in the community and just offer our support."
The first person she helped was a lady called Lilian who was impaired. "I remember meeting her daughter and she was so keen to ensure that her mum was recognised for who she was."
Lilian loved getting out the china set and having tea with visitors.
"I just remember thinking, 'What a wonderful person' and in many ways I kind of think there's some beauty in that naivety of not knowing what dementia is because it enabled me to actually value that person as a person," she said.
Read Smith's study, based in Christchurch, which shares the perspectives of people with dementia here.
- Stuff
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