As I (Susan) sifted through the program and my notes, I came up with five themes that functioned like a repeating musical line. If you’re been reading some or all of these blog posts you’ve probably noted these, for we’ve referred to them several times. Others attending the same conference may have different ideas on repeating motifs, but here are mine.
1. Persons living with dementia must be involved in all phases of planning, implementation, and evaluation of programs and services. Well-meaning academics and professionals should never act as if by virtue of their education and training, they know what people living with dementia want and need.
2. Persons living with dementia around the world repeatedly tell researchers, policy makers, and program professionals that they want more opportunities for stigma free social interaction.
3. When communities are intentional about improving dementia attitudes, services, and programs, persons with the diagnosis can maintain a good quality of life. This is not to say there won’t be suffering, but taking the approach that we’re all in this together will go a long way to ameliorating some of the suffering, especially when it’s caused by social isolation.
4. Creation of dementia friendly communities and societies will take collective will at national, regional, and local levels. It’s not an either/or. Some policies and programs need the weight of national governments behind them; others will begin in neighborhoods. International cooperation and open exchange of ideas is crucial as well.
5. We must begin to address the complexities at the intersection of the desire for dignity and the desire for autonomy. All of us are vulnerable creatures needing care from others that promotes dignity. People with dementia experience an extra load of vulnerability that changes with the progression of the condition. We need to look carefully at how we balance the wants, needs, and declarations (as in advance directives) of the “then self” and the “now self.” This will not be easy and will require persons with dementia to collaborate with philosophers, theologians, artists, social scientists, medical professionals and others.