Dementia patients are waiting longer than ever to access community care, and those who look after them say they’re running out of money to even keep the lights on
The situation for people living with dementia is becoming increasingly hopeless with most people not able to get the help and support they so desperately need, Alzheimers New Zealand has warned the Health Minister.
The day after the Budget was released, Alzheimers NZ board chair Clare Hynd wrote an abrupt letter to Ayesha Verrall and Associate Minister of Health Barbara Edmonds.
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“We understand Government has competing priorities and times are tough, but even so it was very disappointing that this week’s Budget provided nothing for the sector. The $9 million pa needed now to take the immediate pressure off the system is within the margin of error for the health system and could have easily been absorbed into the funding provided for demand increases and cost pressures, but nothing has happened.
“The lives of people living with dementia mate wareware matter and yet the health system continues to let them down and ignore their needs.”
“Once carer support has been allocated, there is a chronic shortage of paid carers to do the work, so often [they] have the support allowance but no one able to come in and help." – Trudi Bridges, Alzheimer's Northland
That’s a sentiment lived daily by Rike Raines, one of two Community Support Workers for Alzheimers Society Southland, which looks after the entire Southland region.
She is run off her feet. During a nine minute phone interview with Newsroom she was interrupted twice with people coming through the door, eventually cutting the call short because she just had to get back to work.
“We've got 150 clients at the moment to look after and we've got a massive increase in referrals … it's quite overwhelmingly busy at the moment.
“And because of the shortage on the dementia beds and hospital vacancies, often the hospitals can't take people with dementia, or they aren't coping with them very well then we try and support the families as well.”
Alzheimers NZ figures show demand for services has increased significantly, with referrals in the first three months of 2023 up by 165 percent from 2022.
The national body estimates about 30,000 people were missing out on help because of the resource constraints.
Raines said for those in Southland simply getting a diagnosis, which they need in order to be assessed for funded services like the programmes Alzheimers Southland offered, was difficult.
“For some families it's really hard to even get a diagnosis, they're just struggling to access the right medical professionals.”
“And then the other main issue we have is that there's no respite options available for people in our rural areas. Invercargill has got options and Gore have got a provider for day respite but there's nothing in lots of the other areas and it's hard for people to get a break … being a carer 24/7 is extremely challenging.”
It’s a similar story at the other end of the country.
Alzheimers Northland general manager Trudi Bridges said it had contract funding that only covered 70 percent of costs, the rest had to be found every year via grants and fundraisers.
The latest financials for Northland show they raised $387,000 of their own and still ran at a loss.
Northland provide day services for about 550 people with dementia, as well as carer support and guidance for those looking after them full time.
“They're going to just reduce their services even more, in order to just keep something going and try and hang on in the hope that this is going to this is going to change.” – Catherine Hall, Alzheimer's NZ
Bridges agreed getting a diagnosis was challenging with many GPs not skilled enough or willing to do it, and there was about a six-month wait to get a needs assessment even once a diagnosis had been given.
She said even when people qualified for carer support it was difficult to actually find someone to do the work.
“Once carer support has been allocated, there is a chronic shortage of paid carers to do the work, so often [they] have the support allowance but no one able to come in and help.
“Or our day programmes are at capacity so they can’t fully utilise the respite care allocated.”
She said there was also a lack of respite beds available (which are not managed through the community Alzheimer's groups) making it difficult for carers to take any more than a few hours off at one time.
Alzheimers NZ chief executive Catherine Hall estimated 30,000 people across the country were missing out on help and support because of the constraints.
“They are really struggling because they've got these contracts that are old. They were always poorly funded. They've been living with a sinking lid as far as the contract funding goes.
“Demand has been going up, cost of living has hurt, Covid hurt and affected all of their other funding and so they are absolutely struggling to keep the lights on now.”
She said it was a “postcode lottery” when it came to receiving dementia care.
“We've got some parts of the country, for example in Tauranga, where they've managed to negotiate increases in the contract and we've got other parts of the country like Gisborne [which may have to close].
“South Canterbury only gets 4 percent of its total funding from its contract with government, and then the Wairarapa have never had a contract, they get no money at all from government … I mean, that's just scandalous that the differences can be so huge across the country.”
The $9m referred to in the letter sent by the board chair was the cost “just to keep the lights on”.
Hall said community dementia support was often the last port of call for people, and they deserved better.
“It's difficult to get in to see a GP, very difficult to get a diagnosis of dementia, it's hard to get home help. You can't get into a rest home, carers can't get respite.
So [these groups] are a last type of support … and if that goes, there will be nothing.”
She said some organisations were seriously looking at reducing the number of clients they could manage.
“They're looking at having to make some very hard decisions. These are organisations that have been around for a very, very long time so they're not going to make any decisions to close up quickly but for some of them, they're going to just reduce their services even more, in order to just keep something going and try and hang on in the hope that this is going to change.”
Government response
Associate Health Minister Barbara Edmonds said she had discussed the challenges directly with Alzheimers New Zealand.
“I acknowledge the challenges people face when managing dementia or supporting whānau living with dementia. This is an area of healthcare that the government is committed to.”
She said in last year's Budget $12m was allocated to provide support in this area, with new services through this funding, coming into effect shortly.
She said there was also a range of funding for health services that would impact on people with dementia.
This included $255m a year for dementia services within aged care residential facilities, improved pay and conditions for care nurses and allowing family carers to be paid to look after their family member.
“I want to ensure that people with dementia, their whānau and carers can live their best possible lives, and I look forward to continuing discussions with the sector on how we can best support their work.”
