Highlights from ADI2015: Engaging, supporting and including people living with dementia

The last day of the conference saw sessions focusing on new research into Younger Onset Dementia (YOD) as well as engaging people living with dementia and improving their quality of life. Today’s presentations had a focus on how society can best support and include people with dementia in everyday life.

Once again the discussion was led by those who are living with, caring for and/or working with those with dementia.

Today’s attendees were asked ‘what can be done to make a community dementia friendly?’ and here is what they had to say.



You can also learn more about the Dementia Friendly Community initiative currently being led by Alzheimer’s Australia here.

John Sandblom, one of the co-founders of Dementia Alliance International, told attendees more about the vision of the group in supporting and advocating for those living with dementia. The group is made entirely of people living with dementia and currently has members from the USA, Canada, Australia, UK and Germany. You can find out more about Dementia Alliance International here, which has a fabulous blog, including a monthly dementia research wrap up by Dementia News. The not for profit group has been running for just over a year now and has achieved a lot in this time.

“Collaboration is the key to our continuing success,” Mr Sandblom said, explaining the group has already had a few key successes including becoming a global voice, and advocating to have a person with dementia on the World Dementia Council and Kate Swaffer being invited to present at the most recent World Health Organisation Ministerial Conference on Global Action Against Dementia.

Phil Saunders, a dementia educator with Alzheimer’s Australia SA presented at a concurrent session, who said that consumer engagement is about inclusion, explaining that they are the real experts on living with dementia.

“Consumer feedback is the backbone to policy making,” Mr Saunders also stated in his presentation.

Karen Hutchinson also spoke about the importance of supporting children of parents with Younger Onset Dementia. She highlighted the challenges around kids as young as 10 years of age being impacted by the disease and having to take on the role of carer.

“Children of people with YOD can feel invisible, outcasts, disconnected and disadvantaged,” and they should not be forgotten when policies are being created around dementia Ms Hutchison said.

Dementia News has previously featured Ms Hutchinsons research that you can read about here.

Associate Professor Janet Sansoni also spoke about the importance of research into and the needs of those with Younger Onset Dementia saying:

“We need to involve people with Younger Onset Dementia in service design, development and evaluation from the start” – also emphasising the importance of inclusion.

“We just need someone to coordinate this” said one attendee highlighting the importance of programs such as Alzheimer’s Australia Younger Onset Dementia Key Worker Program which has so far assisted more than 1,200 people living with dementia, along with 1,500 carers."

One client of the program said it is an amazing resource as they see me as a person, not a statistic, and the program truly helps me live well with dementia.
Grace O’Sullivan spoke about putting human rights at the heart of dementia care and shared her thoughts from her experiences with caring for her father who was living with dementia.

“Maintaining and maximising choice in everyday lives is as much about human rights and dignity, as it is about health care” she said while finishing her presentation.

Dr Adrienne Withall from the School of Public Health & Community Medicine at the University of New South Wales also presented at the conference today about her research which focuses on the link between head injuries and the early onset of dementia.

“We can say with confidence that a significant head injury, one that results in loss of consciousness, or fracture, increases your risk of dementia.

“However, there is insufficient research to know the long term effects of milder head injury, such as concussion,” Dr Withall said acknowledging the importance of further research in the area.

You can read the full media release about Dr Withall’s research here.

Conclusion of conference

Attendees had a great ending to the conference, with excerpts from a short play drawing on the experiences of New Zealanders living with dementia. The play was called “The Keys are in the Margarine: a verbatim play about dementia” and you can watch a short teaser below.



You can read more about this great play via Dementia Daily here.



Mr Glenn Rees AM, was officially welcomed as the new Chair of Alzheimer’s Disease International taking over from Dr Jacob Roy (both pictured).
Mr Rees acknowledged the work of Dr Roy and the Alzheimer’s Disease International board and said we have come a long way in the past few years.

“The kind of change we want is still dramatic, and I look for your support to do this,” said Mr Rees to attendees after describing he is looking forward to the challenges ahead.

Mr Rees finished by inviting everyone to Budapest Hungary in 2016 to attend the 31st Alzheimer’s Disease International Conference.

To round out the conference Alzheimer’s Australia Victoria also announced the launch of the next conference in Australia, being held in Melbourne. Dementia News will update you on the details of this as it comes to fruition.

Media summary

The #ADI2015 hashtag appeared in over 3 million social media posts over the course of the conference, suffice to say the word is being spread about this important cause and we wish everyone to keep it up.

45 news stories about conference presentations also appeared across tv, radio, newspapers and online news sites across the country, reaching close to 2.1 million people in Australia alone.


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