New Zealand’s already under-resourced dementia support organisations are at serious risk of going under unless government can step in and make a significant commitment to adequately support people living with dementia.
Lisa Burns, GM Fundraising & Marketing at Dementia Auckland, says New Zealand is unprepared for the next wave of dementia diagnoses that will see an increase from 70,000 to 170,000 over the next 30 years.
“Right now, there isn’t enough visibility and support and only a small percentage of people are getting access to services due to funding restrictions,” she says.
“We are supporting around 2,500 Aucklanders living with dementia and their caregivers, but we estimate there are at least 20,000 with a dementia diagnosis across the city – that’s a massive shortfall.
“In years to come, this problem will be large and wide-reaching, we’re already on the back foot – we’re at least 10 years behind other western countries in this space. We’ve got the infrastructure and services ready to go, we just need the funding to scale our models up to meet demand.”
Earlier this month, a dementia action plan prepared by Dementia New Zealand, Alzheimers New Zealand and New Zealand Dementia Foundation was released, asking for a serious ‘commitment’ from government, which has so far ignored this sector.
Jocelyn Weatherall, chair of Dementia New Zealand, says, “We want to advocate for every person affected by dementia to have access to timely, high quality post-diagnosis support for a minimum of 12 months – similar to what’s been done in other western countries like Scotland. We urgently need to get this right.
“The dementia sector has repeatedly asked governments to understand the condition and its impacts on families, workplaces and finances and to provide tangible support. We are charities, with minimal government funding, and as a collective we are despairing at the lack of engagement at government level to deal with this massive problem,” she says.
Dementia isn’t a normal part of ageing and while it’s more common in people over the age of 65 it can impact those as young as 35. It’s also one of the longest terminal illnesses with an average of eight to 10 years, making it a complex, unpredictable and very challenging condition.
Organisations like Dementia Auckland support people with dementia to live their best lives, preserving function and wrapping the right support particularly post diagnosis to set people up for success and wellbeing.
There is no cure for this disease; it’s a terminal illness that is complex and challenging to manage. However, there is international evidence of the positive effect that established programmes deliver in reducing and delaying the need for care services.
“Being at the coalface, we’re seeing the true weight of what people are carrying,” says Lisa. “We’re there when the wheels fall off and caregivers spiral into crisis; the grief, loneliness and anxiety that they face almost daily for a prolonged period of time is unbelievably difficult – and this was made even more apparent during the recent Covid-19 lockdown.”
Dementia Auckland is currently operating at a loss, which long-term is not sustainable. “We’re heavily reliant on the funding from sources outside DHB funding and this is inconsistent,” says Lisa. “Considerable projected growth in dementia numbers means support services won’t be available when they’re needed.
“We’ve been providing resources and services to the community for over 35 years; we have the expertise in providing comprehensive tailored services. We are by the side of an individual and family from diagnosis right through to the end of life; advocating, navigating, advising, providing education and professional support.
“The lives of people with dementia matter; they have the same basic human rights to feel safe, respected, valued and able to contribute to their community and get the help and support they need, we simply need the proper funding to make sure this happens.”
Dementia New Zealand has affiliates providing services in the main centres around New Zealand in Auckland, Hamilton, Rotorua, Hawke’s Bay, Wellington and Christchurch.