Diagnosed with early-onset Alzheimer’s at the age of 60, dementia advocate Alister Robertson has spent the last seven years adjusting to a post-diagnosis life.
He is a keen cyclist and tries to keep his brain healthy with a good diet, sleep and an active social life – something he says is crucial.
“A lot of people with the diagnosis, they tend to withdraw, because the biggest thing is probably the stigma associated with it,” he said.
“And that’s probably the worst thing you can do, because then you tend to end up experiencing isolation, loneliness, possibly depression, and even lacking motivation, and those things don’t impact well when you’ve got dementia.”
Often after people were diagnosed, information was not easy to come by, either for the patient or their support, he said.
“You really need to know, what sort of things are you likely to experience?,” he said.
“It’s not only for the people with dementia, but probably more so, and more importantly, for the care partner.
“Because in some ways, I think the journey is probably worse for them than it is for someone like me, with the actual disease.
“And then, what services are actually available?”
About 70,000 New Zealanders have dementia, or mate wareware, but that number is expected to mushroom to about 170,000 within the next 30 years.
Health experts are warning that will put an unbearable amount of pressure on our health system, costing nearly $6 billion annually.
Alzheimer’s New Zealand has a plan to tackle the rising tide of need – the Mate Wareware Action Plan – but the government has not adopted it yet.
Chief executive Catherine Hall said the support in place now was not going to be enough.
“The services tend to be one-size-fits-all, so, they tend not to be focused on delivering on the needs of the individuals and the communities that they’re located in,” Hall said.
“It is common for the human rights of people living with dementia to be overlooked or ignored.”
Associate health minister Ayesha Verrall said she asked health officials to focus on improving respite care, early diagnosis, and more culturally appropriate services for Māori.
Rates of dementia among Māori, Pacific and Asian populations are predicted to almost triple by 2050.
University of Auckland senior lecturer Makarena Dudley said support services needed to be boosted on the ground for whānau who directly care for loved ones.
“A lot of Māori will provide paid [care], but a lot of unpaid care to the person who is suffering from mate wareware,” Dr Dudley said.
“And this is kind of in line with traditional practices where traditionally, you know, we would keep our sick people at home and look after them in the comfort and the safety of the whānau.”
Dudley wanted to see more resources target improving health literacy for Māori about dementia.
“Māori are just not getting access to information about mate wareware,” she said.
“There’s quite a lot of fear out there in the community, because they don’t know what it is.
“They look around in the community and they can see that people are getting it, people in their whānau, their friends are getting it, but they don’t really know what it is.”
Alister Robertson hopes over time, what we think when we hear the word dementia will change for the better, too.
“Sometimes as soon as you mention that, people suddenly draw away from you,” he said.
“Because I think when you mention dementia, for most people, they associate it with someone at the end stages of dementia, people imagine them in a locked unit and not being able to converse, those sorts of things.
“A large number of people are still living at home and still doing most of the daily things that they can do.”
Aged Care Association chief executive Simon Wallace said six of the 20 DHBs already had shortages for dementia care beds and another 5000 beds nationally were creeping towards peak capacity.
“Government funding of dementia care is woefully inadequate at an operational level, but there is also no funding for capital investment in development of new facilities, which is desperately needed to meet not only growing demand in the next 30 years, but existing and short-term needs,” Wallace said.
“Ultimately, once existing vacant capacity is used, we’ll need around 220 new dementia beds a year to meet demand growth and toward the end of this decade, that will rise to around 250-270 new dementia beds a year.”
Nursing shortages were a critical pressure point, he said, with the workforce is short by an unprecedented 20 percent.
The government needed to urgently solve the funding disparities that was pushing nurses to leave care homes to work at district health boards, he said.
“In the longer-term, we need to see more government investment in training and developing a domestic workforce with specialist dementia care capability.”
Minister Verrall said she would discuss with her colleagues how best to support the implementation of the Dementia/Mate Wareware Action Plan.
“I expect progress to be made throughout this year and 2022.”