As part of our ongoing review project, the WDC co-hosted with AARP a satellite event at Alzheimer's Association International Conference 2019 to discuss the evidence base for delivering meaningful dementia friendly initiatives. The event brought together stakeholders from across the world to discuss how dementia friendly programs are simultaneously seeking to change society whilst providing support for people with dementia.
The evening’s conversation was rich and valuable with contributions from leaders in this field around the world. Participants gathered had a shared commitment that people with dementia are included in the community. The World Dementia Council, with AARP, Alzheimer’s Society (UK), the Health and Global Policy Institute in Japan, Alzheimer’s Disease International and with the World Health Organization, is leading an international project to understand the evidence that underpins the impact of dementia friendly initiatives.
What was particularly encouraging was how the views of the group reflected the intentions of the project. We discussed the challenges of defining ‘dementia friendliness’ and how we know when it’s achieved. We acknowledged the need for evaluation to support improvement and sustain support and impact. We agreed that inclusion is inherently good and that ‘friendliness’ is not the goal, but on the path to inclusion.
We also acknowledged the challenges of ensuring access, reducing stigma and decreasing isolation, sharing best practice and consistent measures, while also encouraging flexibility and allowing innovation.
Cynthia Huling Hummel, as someone living with dementia in the US, reminded us that initiatives must be done with people with dementia, not to them, a message we all agreed with and I know we will champion in the report. We also look forward to examining the evidence and sharing the priority impacts and outcomes as well as the methods for achieving them, aiming to guide people to the most impactful activities and encouraging research where more is needed.
As our discussion reflected in considering inclusion and equality we need to reflect on the evidence and read across to age friendly initiatives and other social movements to include individuals on their terms in society. As we outlined in Los Angeles, the project will culminate in a report published in early 2020 presenting an international perspective on the evidence of impact, as well as identifying research gaps.
Over the next few months we are running an evidence gathering survey as well as connecting with individuals who have conducted evaluative work and impact research. It would be fantastic if anyone who is involved in any way with the design and/or delivery of dementia friendly initiatives could take the survey and help us connect to relevant people who may be able to help with this.