In her book The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, Emma Heming Willis quotes a sobering statistic.

“Caregivers die at a rate that is 63% higher than people their age who are not caregivers, and 30% of caregivers die before the loved one they are caring for,” she writes.

Willis has been caring for her husband, actor Bruce Willis, since his diagnosis with frontotemporal dementia, which the family shared in 2023.

And she’s right: being a caregiver or care partner of someone with dementia comes with its own health risks, according to Dementia New Zealand senior educator Winifred Henderson.

“Generally, the care partners are on 24/7, and that affects sleep quality, and when you’re fatigued, you’re not as good, you burn out,” Henderson tells the Herald.

“When you burn out, care partners are at risk of developing a chronic condition themselves, and that’s where the respite is so important in trying to get care partners to realise that they are actually priority No 1 and then the person they’re responsible for.”

Henderson is speaking from experience.

“My mum and dad used to live with my husband and me, and my mum developed dementia,” she says.

“I was her care partner for eight years.”

While caring for her mum, Henderson experienced something called “ambiguous loss”.

Rather than grief over a loved one dying, it’s grief over slowly losing parts of them as their disease progresses.

“Things happen and things drop away, but the world doesn’t acknowledge us... society doesn’t acknowledge the grief and the losses that a care partner of someone with dementia goes through,” she says.

Dementia New Zealand senior educator Winifred Henderson recommends care partners take regular breaks from the caregiving role. Photo / Supplied

As a result, caregivers often experience depression and anxiety. Henderson wants them to know that support is available through organisations such as Dementia New Zealand.

“Mental health services will provide that support if necessary... [it’s] important to have a big support network around you – family, friends, healthcare professionals.”

She advises care partners that they need to take regular breaks from the caregiving role, for several hours a week, one weekend each month, and a 10 to 14-day break at least twice a year.

“It’s really important that people understand what resources and tools are available, that they reach out and make use of them fairly early on... so you can cope for longer and better than if you say, ‘I will cope on my own’. This is often the attitude people have, which is misplaced when you’re on 24/7,” she says.

“The more understanding and knowledge there is, that way we reduce stigma, because stigma is very often what isolates or excludes people, and that leads to loneliness. We know that if somebody’s lonely, cognition will drop off a lot quicker.”

September is World Alzheimer’s Month and advocates say more knowledge is needed to help reduce the stigma around dementia in general.

Dementia is an umbrella term encompassing several syndromes affecting memory, behaviour and cognition. The most common type is Alzheimer’s disease, followed by vascular dementia, Lewy body dementia and frontotemporal dementia, while 30% of people have a mixed dementia.

There are about 200 different causes for dementia, with secondary causes from diabetes to head injuries, heart or kidney disease and more.

Dementia New Zealand CEO Cathy Cooney says it's important for people to keep their brain active for as long as possible. Photo / Supplied

Dementia New Zealand CEO Cathy Cooney estimates there are 80,000 Kiwis living with dementia. By 2050, that number could reach 180,000 – or higher.

Henderson suggests that number could be doubled because so many people don’t get a diagnosis.

“That may be either because they believe it’s part of normal ageing, or for cultural reasons they don’t get a diagnosis, or the stigma surrounding dementia prevents people from getting a diagnosis.”

The person with dementia needs to be aware of their condition and willing to get that diagnosis, drawn from various medical and cognitive tests, family history and mental health assessments.

That’s why dementia is “unique to each individual”, Henderson says. “We always say if you’ve met one person with dementia, you’ve met one person with dementia.”

It can take years to get a diagnosis, particularly for early-onset dementia.

“When someone in their 30s or 40s develops dementia, physicians don’t necessarily immediately think about it. They look at stress, they look at mental health issues, or menopause,” Henderson says.

The symptoms of Alzheimer’s disease specifically include short-term memory loss and difficulty learning new things. As it progresses, it can affect a person’s moods, behaviour, language and communication, and later on, mobility and motor skills.

That’s why it’s important to keep them engaged in different activities, “to keep their brain active for as long as possible”, Cooney says, adding cognitive stimulation therapy has a growing interest within the community.

It’s a non-pharmacological treatment for dementia aiming to provide stimulation by engaging people in group activities and discussions, with proven cognitive benefits. Cooney notes it works best in the early to middle stages of a diagnosis, as there comes a time when it’s no longer of benefit to the person.

“There’s support there to journey with people and that’s what we’re all about. We’re about people being socially connected and engaged and having a sense of purpose and keeping involved in their community for as long as possible.

“Encourage friends to keep in contact with the person and with their family and their carer so that they know that people love them and care about them.”

Local advisers from Dementia New Zealand or Alzheimer’s New Zealand can help the care partner navigate the health system, referrals, practical matters like wills and financial planning, and more.

Dementia NZ also runs support groups for care partners.

“There’s definitely a need for more respite choices [for carers] right across the country, and they are a really important part of a total package of support that then allows people to stay living in the community for longer,” Cooney says.

You can learn more and access support and resources on the Dementia New Zealand website here.