Tuesday, October 15, 2013

Five themes from presentations and discussions


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. 

This last point leads me to look ahead to the Alzheimer Europe meeting in Glasgow, Scotland, in October, 2014 where the theme will be “Dignity and Autonomy.”  Whether you’re struggling with the question of your father’s driving (e.g., taking away his dignity along with his driver’s license, or allowing him autonomy to make decisions about his driving capability) or you’re wrestling with life and death questions about treating pneumonia with antibiotics (e.g., knowing your wife signed a living will years ago and stated she never wanted to “be put in a nursing home,” but nevertheless she’s been happy living in a high quality memory care residence), you are living at the cusp of two major—and sometimes competing—challenges of life the 21st century.  Thankfully, the good people who organize the Alzheimer Europe meetings are providing a forum for these difficult discussions.

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