Lived experience still leads the way for Alzheimers NZ four decades in

Frustrated with the limited support available for people living with dementia mate wareware in the early 1980s, care partners banded together with health professionals to improve the support services available around the country.

Facing increasing pressure with the demands of caring for somebody, this was the start of the organisation now known as Alzheimers NZ – celebrating four decades this year.

The importance of lived experience is as prominent now as it was then, although it’s evolved to centre on people living with the condition alongside their whānau.

The organisation’s first national awareness campaign in the late 1980s was based on ‘The 36-Hour Day’, a publication by Nancy Mace, which is still popular today. This book focused on the needs of families caring for people with dementia.

Dr Jean Gilmour (pictured above with the conference booklet from 1992) reminisces on the early days. She says the book and visit by Nancy Mace  “really pushed the need for family support, and the demands of caregiving, so that was really important.”

This awareness promotion was the first attempt of education on a large scale.

Jean says ‘Dementia Reconsidered’ by Tom Kitwood was another influential publication around that time.

“His work pushed us to recognise the person with dementia as central. Families were still important, but people with dementia came first.”

Jean was inspired to get involved as charge nurse of an older persons ward that had respite care beds. To her surprise, many whānau were providing care at home with very little support.

She has held various roles with the national and local organisation over the last four decades – starting as a Committtee Member (later  Chair) for Wellington in 1986.

“At that stage we had the just the telephone hotline – no paid workers. Then the national organisation got going around the same time,” says Jean.

“It was very, very small. The local organisations ran conferences for the national organisation – national was really just Jan Harrison!”

A proud Life Member, Jean’s volunteer and paid workout throughout that time has reflected her commitment to the organisation – most recently, updating a suite of resources.

Originally called Alzheimers Disease and Related Disorders Society of New Zealand, or ADARDS for short, the name was updated to Alzheimers NZ in 1994.

“You’ve got to remember when we first started, we were pre-internet. ADARDS, and then the Alzheimers national society, were really important for [providing] hard copy materials for local groups and have always led that education drive and resources,” says Jean.

“There was huge debate about the name because people really didn’t understand it. It was to do with including all the disorders that create the symptoms of dementia so it was meant to be all inclusive.”

With humble roots in Christchurch, the local organisations were connected via telephone. The success of the organisation relied heavily on generous volunteers.

Current Alzheimers NZ Board and Dementia Mate Wareware Leadership and Advisory Group Chair Teresa Wall says 40 years is a fantastic milestone for any organisation.

Joining the Board five years ago, Teresa has been contiunually impressed – particularly with how the team led the development of the Dementia Mate Wareware Action Plan.

“There are a couple things I think Alzheimers NZ shoud be proud of. One is the advocacy role it plays in the sector… it’s the lead entity that government goes to, to get advice from.

“And the organisation’s support and ability to include the voice of people living with dementia and also their whānau – that’s really important.”

Today, Alzheimers NZ continues to advocate for a future where people living with dementia mate wareware and their whānau are heard, valued and supported.

We’re a proud member of Alzheimer’s Disease International which has a longstanding history since its establishment in 1984.

We acknoweldge Alzheimers Southland, which was established in 1985, and Alzheimers Tauranga/WBOP and Alzheimers Otago which are also celebrating 40 years.

And Alzheimers Nelson/Tasman and Alzheimers Marlborough which were established in 1987.

Follow along for more from the archives as we celebrate!