Australian consumers on the world stage

Dementia Australia consumers shone brightly on the international stage where they joined more than 850 delegates at the 31st International Conference of Alzheimer’s Disease International (ADI) in Budapest, Hungary.

Eileen Taylor, Dennis Frost, Kate Swaffer, Edie Mayhew and John Quinn attended from Australia with their partners and carers Doug Taylor, Tina Baker, Peter Watt, Anne Tudor and Glenys Petrie.

Delegate and Edie Mayhew’s partner and carer Anne Tudor said some of the most inspiring and alive presentations were from people living with dementia with Edie, Kate, Eileen, Dennis and John all delivering strong and engaging presentations.

Consumers at ADI BudapestEdie Mayhew's first presentation, End of Life Care for People with Dementia and NCD’s– Getting it Right, was the result of an invitation from Non-Communicable Diseases (NCD) Alliance to speak as part of a forum. Chaired by Dr Allen Power, Edie was joined on the panel by two medical specialists and researchers from the Netherlands and Hungary. 

“The value of the forum format was that each speaker had just 10 minutes to speak before the room was open for audience discussion and questions for a full hour,” Anne said.

Edie received excellent feedback from the NCD Alliance Executive Director who said her participation provided “an engagement outcome that exceeded all expectations.”

The Policy Research Officer commented that the priorities Edie expressed in her paper, My Thoughts, Hopes, Fears and Expectations on End of Life Care, “clarified exactly why this is such an important issue for everyone.”

The following day Edie's presentation formed part of a Parallel Session on Education and Training of the Workforce. Edie showed a short film we made last year with Dr Catherine Barrett about Edie and how she lives positively with younger onset dementia.

Anne said the film, There's More to Me Than You Think has a “strong and simple” message to care providers.

“If a service provider makes the effort to really get to know the person with dementia in their care, both will clearly benefit as the worker's heart will be engaged in everything done with and for the person with dementia,” she said.

“At the end of the session four wonderful friends assisted Edie by dispersing heart stickers throughout the auditorium. Thank you to John Quinn, Glenys Petrie, Eileen and Doug Taylor - it helped spread the message very graphically far and wide.”

Four years post diagnosis, John Quinn was seriously depressed and somewhat reclusive. However, he reluctantly attended a fundraising event where he met Ita Buttrose, who was National President of Dementia Australia at the time.

That meeting, two years ago, and the ensuing discussions had a profound and positive effect on John that gave him back some of his self-esteem. He realised that he could live well with dementia and have a purpose in life.

John began to research lifestyle considerations that can impact positively on the progress of dementia and started to show an interest in what else he could do to live better. He concluded, that with support, most strategies suggested weren't too difficult to adopt. He’d always been fit so, with encouragement, continued to exercise.

John developed an acronym, N.A.M.E.S. to help him to remember to address: Nutrition; Attitude and Acceptance; Mental activities/games, Music, and Meditation; Exercise and Enjoyment; and Sleep, Support, Socialisation and Setting goals. 
 
John has become a strong advocate about many aspects about dementia and has spoken at numerous local, state and national events, but his partner Glenys Petrie said he could never have envisaged that he would have the opportunity to present 'Exercise helps Me Remember My N.A.M.E.S.', at the ADI Conference in Budapest.

“Initially, John felt overwhelmed to be presenting at an international level, yet being around other people diagnosed with dementia was reassuring and eliminated any stress, and that provided an opportunity to enjoy the experience,” Glenys said.

As well as the strong Australian contingent many well-known speakers, such as Dr Shibley Rahman, Dr Peter Mittler, Helga Rohra, Agnes Houston, Professor Henry Brodaty, and Dr Al Power, gave thought provoking and educational presentations.

Glenys said John was particularly interested in those about nutrition and brain health, end of life planning, and dementia inclusive communities.

“John was particularly encouraged to hear Dr Peter Mittler share the outcome of his very recent presentation to the World Health Organisation about the human rights for those living with a diagnosis of dementia, and their response to adopt the proposal to develop a Global Action Plan on Dementia.”

Glenys said the lasting impression that John took from the Conference was the collegiality that exists within the dementia community, a sentiment echoed by Anne.

“The camaraderie amongst people with dementia and their care partners was fantastic” Anne said.

“The conference was infused with positive energy, encouragement and support. The “Quiet Room” allocated for people with dementia and their support person to use was the most relaxing and fun place to be. It was a toss-up between the Aussies and the Scots as to who laughed loudest and longest.”

Anne said unfortunately many of the presentations clashed, which meant they could not be present for all of them, however the voices of members of Dementia Alliance International (DAI) who made keynote presentations as well as parallel session presentations, were quite outstanding.

“We were able to be present at John Quinn's presentation which was very well attended and received with great enthusiasm,” she said.
 
Anne said dementia and lifestyle factors was a recurring theme, reinforcing what's good for the heart is good for the brain along with exercise, diet and social engagement.

Anne’s musings following the conference were that the program did not give sufficient time to see all the presentations and more time for questions following the presentations would have added benefit for reflection and following through on ideas before the next presentation.

“It is our hope that we can all meet again at the ADI Conference in Japan,” Anne said.

When the conference concluded, John, Glenys, Edie and Anne had a few days in Budapest before catching a train to Rome and travelling to Port Civitavecchia to begin their 12 day Mediterranean cruise.

“Visiting places such as Valletta, Santorini, Mykonos, Athens, Rhodes and Venice was such a wonderful experience, constantly supplemented by the fun and laughter of great times with friends,” Anne said.

All four friends would endorse the value of travelling in a small group as it made overseas travel a breeze and said having two partners and carers to share the organisation involved to travel well, and in as a relaxed way as possible so that everything went smoothly, made a noticeable difference to the experience.

Both Anne and Edie benefitted from their airline's Wheelchair Assist at every point from Australia to Budapest and spoke so positively to Glenys about it that each couple used it when returning home. Both couples said they would request this for future travel.

As a result of all of these positive experiences John and Glenys are now on a ‘Travelling with Dementia’ Reference Committee with Queensland University of Technology (QUT) researchers and the Brisbane International Airport and Edie and John are hoping to present together on travelling with Dementia at Alzheimer's New Zealand Conference in Wellington in November 2016.