Dementia Differently, What if we think outside the box and expect more?
Dementia Differently is my response to the new coronavirus and the restrictions it has placed in our lives. My goal was to transition resources from in the community into people's homes. Knowing that cost of the isolation would be high and could be avoided, I've developed a set of resources that respond to the challenges isolation presents.
Now you can improve access to cognitively stimulating activity, bring people into your homes safely and offer supportive resources to prevent and navigate challenges for both care partners and extended family.
Like you, dementia wasn't on my radar.
I'd never met anyone with a dementia until I met Anne, my mother-in-law. Anne was diagnosed with young-onset Alzheimer's disease at the age of 56. Too soon, you might think; it always is. But, she and I got on like a house on fire for which I will be forever grateful.
Like all families, Anne, her husband and four sons did the best they could to support her with too little information and too few resources. I watched them struggle with the changes in their relationships, the compassion fatigue, the care burden. But, most of all, how Anne saw it all too.
I didn't have any history with Anne which meant I couldn't compare her to who she might have been before. I could only see her as she was at the moment. I was luckier than most. I wasn't grieving loss, so I could focus on strengths and abilities and Anne had a lot of those.
We're made of so much more.
Later, I wasn't planning on supporting others, but I also couldn't exclude them. Plus, I love the passion and life that I see in anyone navigating a cognitive impairment. You really are true heroes. So, when I returned to work as a community organiser, I naturally included individuals with dementia.
I migrated to working with residents in care settings, then training others to do the same. But, that wasn't enough, it was too late, I wanted to work with others in the gap before a move to care where I believed I could make a significant difference.
I took time to study at the only Dementia Studies programme in the country at the University of Bradford. There I learned more about the belief that identity isn't lost with a diagnosis, and about the psychological & emotional benefits of social inclusion.
All in all, I've dedicated more than fifteen years to working shoulder to shoulder with individuals with a dementia diagnosis, their care partners and extended family as they navigate a better life with cognitive impairment.
Want to know where I stand?
Founder, Dementia Compass
In 2010, I started Dementia Compass. At first,I hosted a community choir. My goal was to create a space where existing choir members would be welcomed when they were disinvited from singing in their long-standing choir communities. A year later, I began working with a local art museum to expand their existing programme using recent research evidence about cognitive ability. It is now an award-winning programme and has expanded into other museums, too.
Our programme is based in Cambridge, England and has included community choirs, museum courses, sports-minded programming, physical exercise as well as care partner resources. These programmes are currently suspended following guidance for physical distancing.
Public Speaker & Trainer
When I'm not designing and running programmes for Dementia Compass, I am a public speaker and trainer. I share the stories of strength and ability that I witness in the community and help others do the same. It's a privilege to fill in the gaps people often overlook. Too often, the focus is only on the point of diagnosis and moves into care settings. We need to tell better stories of what's possible in between and help families navigate this period better, plan for more and prepare for a future cure or treatment.