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SocietyApril 19, 2020

The whispered condition: We have turned a blind eye to dementia for too long

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Photo: Getty Images

Covid-19 has made us aware of society’s most vulnerable. Let’s make ‘being kind’ to them more than a blip on the radar, writes Alzheimers NZ chief executive Catherine Hall. 

If the Covid-19 crisis has any upside it’s the fact that, for the first time in decades, the plight of New Zealand’s older people is receiving long-overdue attention.

Our older people include some of society’s most vulnerable and they desperately need our support. But the unfortunate reality is that “being kind” to them may only be a blip on our cultural radar during this time of crisis.

Our senior citizens may once again fade from our consciousness in a post-Covid world. That is particularly true for the rapidly growing number of New Zealanders affected by dementia, a major and hugely problematic health condition that sees them marginalised and stigmatised more than any other sector of society.

Why is that? Why is dementia not a national health priority? Why is there no government-supported national response plan to address a health condition that will become so pervasive as our population ages?

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 New Zealand family at some point – nearly four out of five of us. It affects 30% 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.

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Astonishingly, and despite these sad facts, there is no concrete government action plan on the horizon to deal with this urgent and growing healthcare 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 the government act on it? We accept that, in light of the Covid-19 crisis, there are other pressing issues to deal with. But once this current crisis is over, the 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, the Christchurch care home at the centre of a prominent Covid-19 cluster, 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 New Zealanders 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 helping people access the wealth of information, tips and suggestions on our Alzheimers NZ website. So, our plea to government is this: 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.

New Zealanders 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.

Keep going!