Why you should talk about dementia with your family this Christmas

Why you should talk about dementia with your family this Christmas - An uncomfortable conversation now could save a lot of heartache in the future.
An uncomfortable conversation this summer could save a lot of heartache in the future. Photo credit: Getty Images

Most family discussions on Christmas in New Zealand will be about how to eat the leftovers and what beach or river to swim in on Boxing Day.

But Dementia NZ is asking families to have what may be a harder conversation over the break this year.

Discussing with your family how to prepare for a loved one developing dementia now could save a world of pain in the future.

A recent study found that there were around 70,000 people in Aotearoa living with some form of dementia. But as our population ages, that number is expected to increase to 170,000 by 2050.

The associated economic costs are projected to increase from $1.9 billion to $4.5 billion in that time.

Beyond the numbers, families who haven't prepared for dementia can suffer tremendously when it hits.

"It's not good for anyone involved; it can be extremely difficult," Scott Arrol, CEO at Dementia NZ, told Newshub.

"Where a person with a neurological condition gets to the point that it can no longer make their own decisions and there's nothing legal in place - say a Power of Attorney for someone else to make those decisions for them - then the legal and even clinical process is extremely difficult.

"It really becomes a worst-case scenario. You go into a court process where they need to have clinical assessments done by recognised clinicians who will make a determination about their cognitive abilities, all while they're likely declining at quite a rapid rate and their professional caregivers may not be legally allowed to provide the care required.

"It's very tough and I just can't emphasise enough that no family should allow themselves to get into that position."

How to minimise your chances of getting dementia - and how to minimise its impact if you do get it

There are various studies with findings on ways one can reduce the chance of getting dementia, increasingly gathered together under the umbrella term 'brain health'.

"It's really about lifestyle factors that you can implement when you're younger. You know, we feel like we're bulletproof when we're in our 20s," said Arrol.

"But once you start getting into your 40s, that's really the time to be thinking about your heart health, but also your brain health. So that's asking questions like 'what's my diet like? What's my alcohol consumption like? Am I a smoker or not? Am I getting a reasonable amount of exercise?'

"There are about 12 lifestyle factors that people could improve when they're younger to reduce the risk of dementia. But even if you're diagnosed with dementia, you could start implementing some of these improved lifestyle factors to help you manage it.

"It's similar things to when people are diagnosed with heart disease or even cancer. They're encouraged to improve lifestyle areas like relaxation, to increase positive thinking and so forth."

Preparing 'legal health' as well as 'brain health' will best protect you and your family from dementia.
Photo credit: Getty Images

In addition to physical and mental good practices that will reduce the risk of dementia and mitigate its effects post-diagnosis, there are legal arrangements to make.

"As well as 'brain health' you should also talk about what I call 'legal health'," said Arrol.

"In New Zealand you can use services like Public Trust that have done a really good job of addressing the perceived legal complexity and difficulty in setting up an Enduring Power of Attorney.

"There are toolkits online that sort that out for you. So then the conversation doesn't have to dwell on the difficulty of actually setting these things up."

Just as having a Will can save a lot of trouble for one's family when they die, there are other legal documents that will make things a lot easier once one can no longer make sound decisions on their own.

In addition to a Will, these include: 

  • Enduring Power of Attorney for Property & Finance
  • Enduring Power of Attorney for Personal Care & Welfare
  • An Advance Care Plan

How to bring up the conversation at Christmas

It's important not to spring this topic on the family, Arrol says.

"I always advise people be careful about this conversation. People have had a tough year and Christmas is a time to rest and relax. You can't always assume that all the family is going to agree on this topic - but the first stage is simply bringing it up."

Dementia is also not as extreme as a lot of people think.

While the experts say we should prepare for the worst, it doesn't always get as bad as that.

"What we're really trying to do to make these conversations easier to have is to destigmatise dementia," said Arrol.

"Yes, it's not a good thing to get and once you've got it, it's not curable - but the majority of people living in New Zealand with whatever type of dementia they've got can live their best possible lives for quite some time.

"'Dementia' is a sort of overarching term that covers quite a lot of types of dementia, including Alzheimer's. A percentage of those are more serious and will be in a care facility, but the vast majority of the roughly 70,000 Kiwis living with dementia are living in their home in the community."

Dementia may not be as serious as you might think - it can be managed and people can live amazing lives in the community with it.
Photo credit: Getty Images

It's the serious cases that make the most impact, however. And it's people having heard about those that may make the conversation difficult.

Arrol says he is contacted regularly by upset family members who have had an argument about the topic, which can be difficult to avoid.

But it is a conversation that will ultimately benefit everyone in the family, he says.

"The conversation may get shut down, sometimes people don't want to talk about it. You have to be patient with that. Introduce the topic gently and have the information handy on what to do," said Arrol.

"If you've read up about it and know what to do it should mean a less emotive conversation with the family, as it's more a matter-of-fact chat. But again, it's no one-size-fits-all, every family is different. If one family member has done the research and springs the conversation like a know-it-all on everyone else who wasn't expecting it, that generally doesn't go well."

An epidemic that will affect us all

"There's a sheer weight of numbers that will force this country to do something. We're banging on the Government's door to say look, this not a pandemic, but it's an epidemic that is very definitely coming our way," said Arrol.

"As a minimum, for every person with dementia there's two others that are directly impacted by it - a spouse, partner or family member, for example. It's usually more than two, often around four.

"So if you multiply 70,000 by two or four, the numbers are huge. Even now, nearly every Kiwi you speak to will have had some touchpoint with dementia. With the numbers spiralling up to 170,000 over the next 30 years, there won't be anyone in New Zealand that isn't aware one way or another about dementia and its impact on families."

He says there are a lot of dementia and Alzheimer's support services around New Zealand and people shouldn't hesitate to get in touch for advice.

"If you want one-on-one assistance, look them up online in the local area will get a hold of Dementia NZ and we'll put you in touch with your local people. It's important to reach out."

If you want to reach out, the following websites and phone numbers are good ways to start: