It’s time we did more and better

But if history is any guide, we won’t learn any lessons from those questions and New Zealanders with dementia and their families and care partners will continue to be marginalised and will continue to be hurt needlessly.

That’s been the case for years now as New Zealand fails to implement a clear plan in response to dementia.

Why is that? One reason is that dementia is ‘the whispered condition’. We don’t like to talk about it. We don’t even like to think about. Dementia comes with massive stigma so we tend to turn as blind an eye as we can to it and to the people who live with it.

This does not just happen at a personal and community level. Very regrettably, it happens at a government policy level as well.

And as a result, the health services and support structures for people with dementia in this country are woefully inadequate, massively underfunded, largely unsupportive of people affected by dementia, and at odds with what this most vulnerable group of New Zealanders needs to live well.

Make no mistake, dementia is one of the most serious and costly health challenges facing this country after Covid-19. The associated health and social care costs of dementia exceed those for cancer or heart disease.

Dementia will affect in some way nearly every Kiwi family at some point – nearly four out of five of us. It affects 30 per cent more women than men, and by 2050 it will cost the country nearly $5 billion a year.

The number of us with dementia is set to nearly triple in coming years as our population ages, and there’s no treatment or cure on the horizon.

Astonishingly, and despite these sad facts, there is no concrete government action plan on the horizon to deal with this urgent and growing health care challenge, a challenge that has been further exposed by Covid-19.

The virus has not caused this problem. It has merely brought into sharp focus just how neglected people with dementia and their families really are.

What services there are for New Zealand’s dementia community were severely stressed before this pandemic. Alzheimers NZ and others in the dementia sector have been telling successive governments this for years, but to no avail.

So, the sector has just now developed its own Dementia Action Plan, with objectives, strategies and key priority actions.

Will government act on it? We accept that, in light of the Covid-19 crisis, government has other pressing issues to deal with. But once this current crisis is over government needs to make dementia a health priority and it needs to act.

While most people with dementia live at home for most of their time with the condition, facilities like Rosewood do cater for those whose dementia is well advanced.

What’s important for people in these facilities is that clinical decisions about their treatment are made on the basis of what’s right and best for the individual, rather than on assumptions about dementia, such as the time left to live. In other words, make clinical decisions for someone with dementia on the same basis as for anybody else – based on their unique circumstances.

People living with dementia are sick of being treated as second class citizens as though their lives do not matter. This is a key reason behind the development of The New Zealand Dementia Declaration, written by Kiwis living with dementia.

The Declaration states very clearly that ‘Our lives matter. We have the same rights, privileges and obligations as everyone else.’

‘Nothing about us, without us’ is a mantra adopted by the dementia community to stress this point.

As for those still living at home with dementia, Covid-19 has not stopped local Alzheimers organisations from supporting them over this difficult time.

They have been calling these people regularly, providing online support and putting other online programmes in place, and helping people access the wealth of information, tips and suggestions on our website.

So, our plea to government is “deal with Covid and then urgently adopt and implement a national dementia response plan.”

The dementia sector’s Dementia Action Plan is there to be used, but we are not precious. It doesn’t have to be our plan that gets actioned. We just need action that is fit for purpose, appropriately funded and supported, and implemented.

Kiwis living with dementia and their families and care partners have been neglected for far too long and it’s time we all did more and better for them.

Catherine Hall
Chief Executive, Alzheimers NZ