Sharing and learning at dementia conferences

Consumer panel

Ian Gladstone, Danijela Hlis, Elaine Todd and Ron Sinclair on the consumer panel at the NNIDR Dementia Forum Australian Dementia Forum.

The two dementia research conferences held in Sydney in early June this year were a valuable time to share and learn, according to prominent dementia advocates.

Many consumer advocates including Danijela Hlis, Elaine Todd, Theresa Flavin, Dr Ron Sinclair, John Quinn, Glenys Petrie and Ian Gladstone attended sessions at both the Hammondcare International Dementia Conference and the NHMRC National Institute for Dementia Research (NNIDR) Australian Dementia Forum (ADF2018) and Jane Thompson attended ADF2018.

Ms Hlis, author of the book ‘Forget-Me-Nots’, a collection of stories and poems about living with dementia among people of diverse background, presented a poster at ADF2018 entitled ‘Welcome to my world – living with dementia among people from culturally and linguistically diverse backgrounds’.

The topic of the added difficulty that people from Culturally and Linguistically Diverse (CALD) backgrounds experience is close to Ms Hlis’ heart as she observed first-hand with her mother through not being able to communicate her feelings and pain, and the isolation that accompanied it. She believes that people from all backgrounds must be included and involved in dementia research.

For example, said Ms Hlis: “When a person who has forgotten English shows distress, begs the staff in her residential care facility to show her where the toilet is and nobody understands her, and no one knows how to use bi-lingual tools like posters and cards or talking albums, the person ends up having an accident, and soiled, feels acute shame, fear and abandonment”.

Dr Jane Thompson a CDPC dementia advocate assisted in making the poster. She encourages the involvement of people with dementia, carers and families in dementia research to ensure research addresses areas of importance to them.

In her poster Ms Hlis noted that “consumers are now being invited to be part of research teams and prepare research grant applications for review and being acknowledged for their contribution”.

Consumer advocate Ms Hlis, Dr Sinclair, Ms Todd and Mr Gladstone were on a Dementia Forum plenary panel entitled, “Living with Dementia”, which provided an opportunity to talk about the lived experience of dementia and consumer involvement in research.

A strong theme in the presentations and workshops emerged, says Ms Hlis, of the difficulty researchers have in finding participants and consumers willing to get involved in the research.

There were many presentations that Ms Hlis found inspiring. One highlight was the message from international invited plenary speaker Mr Simon Denegri, National Institute for Health Research, National Director for Patients, Carers and the Public, on the value of publicly driven research and the initiatives in the UK to encourage this.

“I was impressed with the UK system of Admiral Nurses, who are very needed here in Australia as well. The idea of having registered nurses that have dementia training being assigned to a person living with dementia and their family from the beginning is outstanding,” she said.

This could go a long way, for care staff to recognise, understand and know the person. It could also go a long way in dispensing the big lie of “there is no life if there’s no memory”, she says.

“My mother had a great life because she forgot two wars, illness, depression and embraced a new life.

“We must continue to aim for high-human rights for all to be respected, inclusion of all Australians in research and care, celebration of diversity, and improved knowledge translation by having the users of end product of research involved in the research from the start,” she said.

Welcome to my world

posters at conference

NNIDR conference poster display

conference audience

NNIDR conference audience