Research finds dementia sufferers experience stigma

News 10/05/2019

People with dementia are living in fear and isolation due to the stigma around to their condition, new research has found.

Alzheimers NZ interviewed 49 people living with dementia or who are caring for someone who does and found people are often isolated and let down by the health system.

A statement from Alzheimers NZ CEO Catherine Hall described the difficulties people living with dementai havbe in this country.

These are real people talking about their day-to-day struggles with a health sector that provides woefully inadequate services and support.

Dementia is a term that covers conditions that cause the gradual loss of brain function, the most common one is Alzheimers.

Hall told Newshub the report had confirmed some well-known issues.

"It is possible to live well here in New Zealand when you've got a diagnosis of dementia, but it not easy to do so," she said.

There were a number of common themes in the report, including the experience of people with dementia feeling stigmatised due to their condition.

Alzheimers NZ spokesperson Alister Robertson, who has dementia, told The AM Show people under the age of 65 have huge problems with the stigma attached to their condition.

"There are a number of us diagnosed under the age of 65, and probably the thing that we find is the stigma, discrimination because you have it," Alister said.

Suddenly this social isolation.

Robertson said the first thing people think of when they imagine dementia is the end stages, but people who get diagnosed early do not look like that.

On top of that, it can be hard for people newly diagnosed for the disease to access the support they need.

"I was probably fortunate in receiving the diagnosis I was advised as to where I could get support, and the services that were available.

"But unfortunately for the majority of people that get the diagnosis, and probably more so if they get that from their GP, in a lot of cases the GP doesn't have the information to give them or refer them to what services are actually available."

The AM Show / Newshub reporters Katie Fitzgerald & Edward O'Driscoll