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Nick was diagnosed with vascular dementia in 2018, at just 49 years old. His wife Helen says they have been through a couple of “horrible” years.
A woman whose husband was diagnosed with dementia at age 49 says there is a “great need” for more support for the disease, particularly for younger New Zealanders.
Nick was diagnosed with vascular dementia last year, following a stroke in 2018.
After the stroke, Nick’s behavior changed “dramatically”: he became aggressive and struggled with psychosis. He was finally diagnosed while in a mental health ward.
September is World Alzheimer’s Month. Alzheimer’s disease is the most common form of dementia, affecting 70,000 New Zealanders and increasing rapidly.
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The number of kiwis diagnosed with dementia grew by almost 30 percent between 2011-16 and is expected to triple in the next 30 years.
Helen, who does not want her last name used, said better support is needed, especially for diagnosed youth, to prevent others from going through the “horrible” experience she and her husband have.
She said they struggled from the beginning and that medical professionals “didn’t want anything to do with him” because of his age.
“We were in ‘no man’s land’, nobody wanted to diagnose it or even try it.”
123RF
Brain MRI (cross section of the brain) (medical, health, scientific background); brain; generic; 123rf
After being told it was dementia, “that’s it, no follow-up.”
Until February, Nick was in a secure dementia unit, geared toward those “in their 80s, not their 50s,” he said.
“There was no rehab or anything suitable for Nick.”
With closure imminent earlier this year, Helen brought Nick home to West Auckland, babysitting him while juggling work full time.
Through Dementia Auckland, Helen has joined a support group called ‘The Young Ones’, for people diagnosed with dementia under 65 and their caregivers.
Her support, and that of Dementia Auckland more broadly, was “just amazing,” Helen said.
But as rates of the disease rise, Helen believes that more support across the board is “absolutely necessary.”
Dementia NZ spokeswoman Lisa Burns said dementia cannot “be ignored any longer.”
He said it is vital that the government recognize dementia as a national health priority.
Despite its prevalence, there is little formal support for dementia, with many describing the process as “traumatic” and “harrowing,” Burns said.
Burns said it takes up to seven people to care for someone with dementia.
“It is heartbreaking to see anxiety and depression among caregivers doing the best they can. That is why dementia organizations are so important. “
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Lisa Burns, Managing Director of Marketing for Dementia New Zealand.
Burns said the government must step in and provide post-diagnostic programs similar to those seen in other countries.
These would help people come to terms with their diagnosis and manage symptoms, and would provide practical support in planning for the future, such as establishing advance care plans.
“If I had a magic wand it would be for that.”
Burns said dementia “is the curve we cannot flatten.”
“But we can … help break the cycle of stigma and associated fear.”
The Ministry of Health has been contacted for comment.
* Dementia NZ is asking Kiwis to donate $ 3 by texting the word UNITE to 2449 during September. Every dollar goes to national services, including community dementia counselors, caregiver education programs, and your new helpline (0800 433 636).
