Building Bridges for Better Brain Health, from the Ha’penny to the Golden Gate
People with Down syndrome have a genetic risk for Alzheimer’s disease (AD) so promoting brain health and raising awareness of potential modifiable risk factors for delaying or preventing dementia is crucial.
Our understanding of AD pathology has been greatly advanced through Down syndrome genetic research, and yet, people with Down syndrome are still under-represented in conversations on dementia.
Designed with support from a PPI Contributor with Down syndrome, this initiative facilitated conversations on brain health for people with Down syndrome in the USA and Ireland through a series of organised virtual coffee breaks.
Through sharing their experiences from different countries, awareness of brain health was raised and a space for shared and peer learning was created. Following the tea/coffee event, participants were invited to record a short message on brain health and their experience of the event.
Promoting Participation in Research was a priority theme.
The aims of this initiative were to:
- Raise awareness of brain health in people with Down syndrome
- Promote social connectedness – an important factor in brain health
- Give voice to people with Down syndrome on the topic of brain health
This also promotes participation of the people with Down syndrome and their families in the research process and, specifically, it provides an opportunity for PPI contributors to input into the design and delivery of the project. It will give the people most directly affected by the research more of a voice in the research itself.