Our Perspectives: Insights, Innovation, Inspiration
DAI Lunch Symposium
36th ADI Global Conference 2024, Krakow, Poland
Although it was on the last day of the 3-day conference and many delegates had left for the airport after the morning sessions, the spirit of our five speakers, moderator and delegates in the room was high. At the end of the symposium, the speakers received a standing ovation from the audience. Everyone left the room feeling inspired and motivated by the insights and calls for action.
As a past strategic partner of ADI, Dementia Alliance International would usually hold a lunch symposium on a specific topic related to dementia and we are thrilled this year was no different. In conjunction with the 40th anniversary of ADI and aligned with the conference theme, the DAI lunch symposium focused on – Dementia: Insights. Innovation. Inspiration, but from the perspective of the advocates from different parts of the world. The session was moderated by Emily Ong, a former board member of DAI from Singapore and the speakers were:
Helen Rochford-Brennan, Board Member of Alzheimer Society of Ireland
Bobby Redman, Chair of Dementia Australia Advisory Committee
Laurie Waters, Co-founder of The Walking the Talk for Dementia
Patrick Kitana Ettenes, Consultant at LGBT Foundation
Natalie Ive, Board Member of Australian Aphasia Association
Helen spoke about her insight over the 15 years of advocacy work and among them is the research involvement on hearing senses in care homes where the inclusion of soothing sounds of nature is so important. She also spoke on how technological innovations are a lifeline to her and enabled her to reclaim a sense of autonomy. “Innovations are a glimmer of hope for example the benefit of telehealth enables me to live independently.”
Bobby spoke about the importance of work to her life and “dementia advocacy become my new work” and her new purpose in life is to help people understand and make things better for others in the future. She is passionate about research and believes that the involvement of people with lived/living experiences in research projects has made the research stronger in Australia.
Laurie spoke about the difficulties in fundraising for people living with dementia as organisations would fund researchers and academics but “they don’t give it to the care partner. They won’t give it to somebody living with dementia.” She reminded researchers and funders “Without us, there is no research … and it is time to use our voice.”
Patrick highlighted the importance of person-centred care for his LGBTQ community but unfortunately, due to societal fear, they are not getting the needed support. Those like him with HIV and now living with dementia experience the societal judgement that “God is punishing you and this is your fault” and “sometimes it does feel like that.”
Natalie talked about the need for a Primary Progressive Aphasia strategy to raise awareness for support services. According to her, the PPA Guide is a “wonderful testament of our collaborative work together that has been so incredibly rewarding.”
The symposium ended with a collective call for:
People living with dementia need to have a proper diagnosis and get the proper treatment.
Stop trying to put people living with dementia in a box and stop saying “You don’t look as if you have dementia.”
People living with dementia will continue to keep advocating and keep going.
Recognize people living with dementia are intelligent individuals and utilize their skills.
Include people living with dementia and be amazed at what can be achieved together.
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About DAI: Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.