One of my fascinations is the way people generalize and differentiate the qualities or characteristics of other people. One of the most relevant examples would be the way we look at people of different racial or ethnic groups. We are generalizing when we say that “Italians are such and such.” We are differentiating when we recognize that some Italians (or whatever group) are like the stereotype but many are not. Pollsters often find that large percentages of people hold negative stereotypes of politicians and lawyers but when asked about their own representatives or lawyers, they have favorable views of them. That is differentiating.
This normal process of both generalizing and differentiating applies in many other situations, and it is something we do without even thinking about it. My personal view is that we tend to generalize more quickly when we know little about a subject. The more we know, the more we recognize the variation that exists apart from the generalization.
So what has this got to do with Living with Alzheimer’s? Well, January is Alzheimer’s Awareness Month. Established by Ronald Reagan in 1983, it is a month in which organizations and professionals in the field of dementia attempt to increase awareness of the disease and improve the public’s understanding of it. That has not been an explicit purpose of this blog, but I do hope that readers gain a better grasp of what the disease is like through our experiences.
Most of all, I hope our experience will counter a generalization about dementia that is quite misleading. When most people hear that someone has dementia, they immediately think of the latter stages of the disease. That is a time when people with dementia (PWD) have very little awareness and are unable to enjoy life the way they could at an earlier point in their lives. The truth is that dementia involves a long span of time. Some estimates suggest it may be as long as twenty or more years. During most of that time, it is possible for PWD to live a full life. We have a growing number of PWD like Kate Swaffer (@KateSwaffer) and Wendy Mitchell (@WendyPMitchell) who are actively speaking out and writing about this.
Professionals who study Alzheimer’s are also making an effort to communicate this message. It’s important one for those receiving a diagnosis and their family members. It is a helpful message at a time when our stereotype of the disease can easily lead to a sense of hopelessness. That is good news. In addition, there is a wealth of information that offers guidelines and advice for making the most of the quality time available after diagnosis. There is reason to hope.
I didn’t recognize that when Kate was diagnosed. I couldn’t imagine how much joy we would have experienced since then. There are some things that we have done to make it easier for us to live with Alzheimer’s, but I also recognize that there have been important things beyond our control that have helped us significantly. They include the fact that I was able to retire so that we could spend more time together, that neither of us has had any other health issues to contend with, that Kate has not experienced some of the more challenging symptoms of the disease, and that we have not had any special financial burdens.
We have been especially fortunate. Thus, I don’t want others to generalize from our experience and believe theirs would be the same. The most important lesson I have learned came from The Dementia Handbook by Judy Cornish. I believe it applies to many other families. She suggests that caregivers and family of PWD learn to accept the “rational” abilities that are lost through dementia and emphasize the “intuitive” abilities that remain. The latter can make a big difference in the quality of life for those living with Alzheimer’s. It has worked for us. My wish is that it might work as well for others.
