Answering some Questions about this Blog

Mona Johnson asked me several very good questions about this blog and I'll share my answers here.

The persons I hope will use the blog comprise pros in the field and activists like Mona like me like many DASNI members and even persons living with the challenges.

Getting all the best existing research in one place and annotated by Renee from the point of view of a researcher having excellent grasp of reliable research methods shows the state of the art and gives us the opportunity to look at the annotated results for answers to our original three questions:

1 What do we know about means for enriching lives of persons having memory blues?

2 Can these means be helpful to these persons living at home?

3 Can information technologies be used to help implement these means for these persons living at home?

One conclusion is that the state of the art speaks mainly to other questions. I haven't fully digested the results yet; as I do I'll likely form other conclusions.

Conclusions etc. from other users of these results are desired. One reason for posting the results in this form is so that others can ask questions of the state of the art and draw their conclusions and make suggestions.

I hope that pros will see opportunities for research which will speak more to our questions and will produce useful and reliable results. And, I hope that pros will see opportunities to adapt activities – using information technologies for example – to help persons living at home; I've been waving this banner for years since I know that it can be done, but nothing happens. I hope activists will push and aid pros to grasp these opportunities, where "grasp" should be understood in the sense of understand and in the sense of take hold of.

I also hope that the model will catch on, the model being where lay persons take research ideas to researchers, participate in designing research, raise funds to pay for the research, etc. etc. (as many persons did for AIDS research for example).

Renee will write a scholarly paper giving more context, drawing conclusions, and making suggestions.

Contributed by Don Moyer.

The Research, Our Questions, Comments on Results

At the end of January 2007 I posed several questions for fellow travelers I'm in contact with by email. Twenty five responded and almost all gave multiple responses, which added up to eighteen pages of ten font single spaced data.

The questions were about how persons manage their challenges and what they do to enrich their lives. The results show clearly that our fellow travelers are quite eloquent on these issues.

This led to commissioning a thorough review of existing studies of life enriching activities. Results of this literature review turned out to be more important than we had imagined and will be published in proper research style.

This research was done in proper scholarly style so that we could look at unbiased results for answers to three questions:

1 What do we know about means for enriching lives of persons having memory blues?

2 Can these means be helpful to these persons living at home?

3 Can information technologies be used to help implement these means for these persons living at home?

Here I and others will comment on what these research results tell us about our three questions.

The alphabetical list of references is posted. As I post annotated results in six categories, I and others will post more comments. Comments are welcome from anyone reading this blog.

The six categories for annotated results are:
1 - Music
2 - Visual Arts
3 - Drama
4 - Dance & Movement
5 - Mixed & Miscellaneous
6 - Other Activities

We learned very little about the second and third of our questions above. About the first question we learned that what we know is mainly suggestive.

Our review thus turns to identification of improvements needed to answer our questions and address issues giving rise to our questions.

Key empirical improvements needed are:

1 more adequate specifications of study design, more adequate specifications of activities, and more adequate specifications of methods;

2 more adequate measurement tools;

3 more adequate use of life enrichment measures rather than clinical outcomes; and

5 more adequate systematic analysis of data.

Key substantive improvements needed are:

1 more direct testimony by persons living with challenges;

2 more focus on life enriching values of process rather than than clinical outcome products;

3 more inclusion of persons with early stage challenges; and

4 more attention to persons living at home (most studies are in skilled care facilities).

When the literature review is published it will include a major section on designing studies which can better answer our questions and a major section on designing studies so that the results are more reliable for addressing issues giving rise to our questions.

How this Site Came to Be

Jenny and Don started a not-for-profit corporation in 2003 a year after Jenny's first diagnosis. The goal was to have our fellow travelers speak for themselves about issues important to them. A web site was started. Awareness became a special focus.

Before long it became clear that our fellow travelers were too busy with their challenges to participate in the web site. Later we discovered DASNI (Dementia Support and Advocacy Network International) which is the best place for our fellow travelers to speak for themselves.

Over the years we raised quite a bit of money from friends and supporters. What should be done with the money? Jenny and Don saw that the missing piece was focus on ways to manage challenges and enjoy life in spite of the challenges.

So we commissioned a thorough literature search. Renee Beard is the principal investigator and Deidre Guthrie did some of the research.

Renée L. Beard, Ph.D.

Dr. Beard received her doctorate from the Department of Social and Behavioral Sciences at the University of California, San Francisco. Her dissertation, “Managing Memory: Clinical Facts, Biomedical Negotiations, and Alzheimer’s Identities,” was a sociocultural ethnography of memory loss in clinical practice, advocacy arenas and everyday life. She is currently a National Institutes of Health postdoctoral fellow in gerontological public health at the Institute for Health Research and Policy at the University of Illinois at Chicago.

Dr. Beard’s main areas of inquiry are medical sociology and aging, including lay and expert knowledge, doctor-patient interactions and subjective experiences of illness and aging. Her current research projects include the Brain Health Initiative, a CDC-funded Healthy Aging Research Network study aiming to identify the health beliefs and behaviors of seniors diagnosed with Alzheimer’s and those without memory-related diagnoses.

Jenny Knauss, MA was born in UK, went to Nigeria and taught History at the University of Ibadan after her Oxford degree, married an American in Ghana, came to Chicago, soon found herself a single parent with two children, taught at various Universities in and near Chicago, began more than forty years of health care advocacy, was a pioneer in women's health reform, was CEO of a not-for-profit health care advocacy organization for twenty years, now manages her challenges and enjoys life every day in Chicago's parks and museums.

Don Moyer, PhD wears many hats (physicist, historian, patent agent, inventor, health care advocate, photographer, writer), lived short times in many places, had various college and university teaching and research posts, turned to freelancing, came to Chicago thirty years ago, began sharing life with Jenny soon after when those two children were teenage (brave fellow he), was CEO of a technology diffusion not-for-profit for twenty years, now helps Jenny manage her challenges and enjoys life every day in Chicago's parks and museums.

DON MOYER
& JENNY KNAUSS
1130 S MICHIGAN 2015
CHICAGO IL 60605-2320
jenny.and.don@gmail.com
moyer.don.f@gmail.com
http://don-explores.blogspot.com


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