26 Nov 2020

The distance from dementia that's holding back help

From The Detail, 5:00 am on 26 November 2020

Dementia is set to cost New Zealand billions of dollars in care costs, but there are warnings that efforts to keep people out of hospital are being hampered by poor funding and resources.

"We're not going to have enough dementia beds so we have to come up with another plan to help people remain at home for as long as possible," Dementia New Zealand marketing manager Lisa Burns says.

Today she tells The Detail about her own experiences of dementia in the family, and her battle to get the illness into the spotlight. 

"I just feel like it’s time, it’s time for us to be brave, it’s time for us to have this conversation, it’s time to bring dementia out from the shadows and shine a light on it and show people the joy that can still be lived."

Burns talks about the "heartbreaking" but futile search for a high profile person with a connection to dementia to be the "ambassador" for the illness, the same way that Sir John Kirwan fronted campaigns about depression.

"I totally underestimated how hard it was going to be. There are some incredible kiwis in this country who have a dementia diagnosis. I wish we could get one of them to come forward and do what Sir John Kirwan has done."

Burns says people aren't prepared to "come out of the shadows" because they want to protect the legacy of the loved one who has the disease. She believes it is time to shake off the stigma and talk about an illness that touches four in five New Zealanders and is predicted to affect 170,000 people by 2050.

New Zealand, she says, is more than a decade behind world leaders such as Scotland which introduced a plan in 2007 that supports a person for the first 12 months after diagnosis and helps them maintain a quality of life in the community.

Burns says a plan for the first year post diagnosis is the "one thing that makes a difference. If people can understand the diagnosis, they can get the right support particularly for the carer, the person can get engaged with activities to keep them social and connected, it can be the difference between one to three years keeping them out of an advanced dementia care unit, out of crisis".