I’m home again! I am Richard and I live with and have been diagnosed with the symptoms of Dementia, for sure, probably of the Alzheimer’s type. Spending a week in Spain at a conference sponsored by the Queen - and then a week on the French Riviera, and then a week in Iowa at the School of Nursing at the University of Iowa has depleted my energy reserves, my cognitive reserves, and my weight reserves (lost 10 pounds!).

However, recall of the specifics of the business and play are as usual difficult to retrieve, and when I do, I have little confidence they are what really happened. Linda and I spent a week living with Cathy and John with their view of the port of Nice, France from their bedroom floor to ceiling windows.

I wish I could say all this travel has refilled my energy tank, but it has not. It was wonderful being around friends, rubbing shoulders with the movers and shakers of the Alzheimer’s world.

Many walk their talk, while others walk/act in a twisted way at best and an opposite way at worst away from their talk.

No one, nowhere seems anywhere near to being fully prepared for the public health crisis. Some are closer, while many are not. There are many dementia angels speaking up and out, but they have yet to be drawn into a choir that sings loud enough for everyone to hear. The movement, if indeed that is what it should become, lacks leadership, funding, sufficient staff, a shared and burning sense of connectedness, an umbrella organization, and the urgency at least as I feel it, to stand up and speak out. As for myself I am trying to feel comfortable speaking/expecting one person at a time to consider my experiences, my messages, and then decide for themselves if what they think and feel about themselves and others dealing with dementia are correct, incorrect, confused, don’t care, don’t know, know/but don’t care. and/or don’t want to know. Must you be living with the symptoms of dementia to feel the necessity for large-scale change NOW?

I lack the ability to understand why this is all happening in the face of the urgency for myself, millions of others, and millions and millions of others who are or will live with the disability of dementia within the next ten or twenty years. Why do so relatively many spend so relatively much on cure research, sacrificing psychosocial research to pharmacological research? Why do so many seem so hopeful for tomorrow, when there is so much more they could do today?

I do not know. If you do, please drop me a line and maybe we can change the world, or at least greatly improve the quality of the lives of souls living with dementia, all of whom are also living with the stigmas of the long good bye, dying twice, losing our souls, becoming sufferers.

Richard

The single biggest problem with communication is the illusion  that it has taken place. … G.B. Shaw

Recently Alzheimer´s England and Alzheimer´s Disease International asked a few people living with dementia for a few big ideas on how they could make their annual conference more meaningful for everyone, especially for people living with dementia. Here is what I suggested:

1. commit to involving people with dementia into all levels of conference planning and execution. I have worked with a major conference here in the usa (Edna Gates in Detroit, and it took them three conferences to get u[p to speed, not because the people with dementia has to be conviced, but those running the conference just didn’t trust them with authority and responsibility. We should practice what we preach.

2. provide a full day of programs for people with dementia -advocacy training, nonpharmacological treatments/workshops, network building, lots of opportunities for them to tell their stories, even to the researchers. Call them alzheimer’s moments.

3. Pushing hard for every country to bring at least one person with dementia with them to the conference. Sell it to Daisy, then the Board, then selected member associations, then to all.

4. turn this more into a working conference than a come and listen conference. Provide structured workshop small groups experiences. Ask all to produce a plan as to what they will different upon their return home. Publish these action plans. Every session should challenge the listeners to at least attempt to translate what they have heard into what they will do. Provide lots of facilitators to make this happen. Offer many more sessions so there are many more choices. It’s time to let the conference dictate the number of meeting rooms needed, and the hotels comply, rather than as in the past it’s the other way around., The world if full of bright, creative leaders. Encouage them to come and stand up and speak out.

5.Committ to seeking out individuals living with other forms of dementia and work them into all these big ideas. Act like the world’s Dementia Association, not another big Alzheimer’s Association

6. A half-day training session on advocacy for people with dementia.

7. An entire day to listening to people with dementia speak to various subjects.

8. A true dementia day…close down the researchers and ask them to join the rest of us.

Richard

Welcome to the new editor, organizer, sender outer of my newsletter. At long last someone has voluntered to assume some of the tasks I find increasingly difficult to accomplish on my own.