We, myself and my wife Jayne, were contacted through Alzheimer Europe by Claudine Snape, the CEO of Dementia Jersey to ask if we would be able to speak at a virtual event they had been organising titled "Improving health outcomes for Jersey’s ageing population, through the lens of dementia" for the States of Jersey elected Members (their equivalent of members of Parliament), they were expecting between 15-25 members to attend the event. The ask was a ten-minute speech from the perspective of a person with dementia and their carer/supporter; just the job for us! The focus of our talk was about the impact dementia has had on our family, the adjustments and adaptions we have made together to overcome the barriers that dementia puts in front of us by putting "cognitive ramps" (our solutions) in place, and also reflecting on what type of community and local health support has been helpful. We decided to just have an informal chat with each other (Jayne and I) on screen, in front of the participants, as this format suits us at the moment because of my progression during the COVID-19 Lockdown (another story, maybe).
We wanted to help the politicians understand what it is like to have and live with dementia, to try and explain what the families themselves can do plus what the community around them can do to improve their quality of life and support them better to live with dementia. We also spoke about the need for person-centred care, social prescribing, care-coordinators/supporters, having the correct, relevant support and respite in place for families, plus the benefits of cognitive stimulation and exercise. We had very positive feedback, which is always nice, thanking us for a memorable talk and saying that many of the politicians who joined us were talking about some of our examples of changes and solutions we had put in place, saying it really struck a chord with them. One of them said that we had completely opened her eyes to the reality of dementia and wanted to extend thanks to us both for speaking. Claudine Snape, CEO, Dementia Jersey, said: “I was able to draw on what you said to support my points, which was incredibly helpful and linked well with the political asks we were making to support the development of more dementia-friendly environments and a dementia strategy on the island”. In summary, our time was very well spent!
