I know, from my own journey with my mother, that it can be a horrific experience watching a vibrant and capable human disappear, day by day, before your eyes.
Equally painful is the sense of helplessness … the uncertainty as to how to care for and comfort someone whose emotional and intellectual needs vary from day to day … whose behavior shows no discernible pattern or logic… who “acts out” for no identifiable reason.
Thus, it was reassuring to learn, at a recent seminar in Des Moines as part of the “Embrace Aging” series, that it is possible to make everyday life quite manageable for both dementia victims and their caregivers.
The presenter was Chuck Wurth, a Managing Partner of several retirement communities in the Midwest designed specifically for dementia patients
Living in The Eternal Present
According to Wurth, the loss of memory causes its victims to live in an increasingly eternal present. As a result, they lose the learned knowledge of cause-and-effect … the memory function that tells us what steps to take to achieve the outcome we want. For example, a dementia patient who is cold may no longer make the connection between getting warm and putting on a sweater or turning up the thermostat.
According to Wurth, dementia patients typically “act out” because they don’t know how to express their needs and/or what to do about it. In his view, meeting the needs of Alzheimer’s patients can be pretty easy … but only if you can figure out what that unmet need actually is.
One approach that Wurth suggested was to take the time … often significant amounts of time … to actually talk to the patient. He offered four checklists—medical, physical, social, and “caregiving”— to prompt specific questions you should to ask in order to discern what the patient needs. “How are you feeling today” just isn’t going to get you the information you need.
Rules of Planet Alzheimer’s
Wurth also believes that the social and caregiving needs of an Alzheimer’s victim are as important as the medical and physical ones: loss of memory does not eradicate the need to be accepted, respected and loved.
Wurth praises the approach developed by Candace Stewart in Welcome to Planet Alzheimer’s. Stewart uses the metaphor of a different planet, where the language and the rules are different from our everyday world. To communicate with an Alzheimer’s victim, you need to learn their rules:
- You are not who YOU think you are — you are who THEY think you are
- Logic and reason do not exist … follow the rules of improvisation and go with the flow
- Nothing is gained by arguing
- YOUR truth and THEIR truth are very different … accepting their truth is not the same as lying
- Never take anything personally
- Have no expectations
- Take advantage of the shuttle back to earth at all times … you need to have your needs met as well.
To me, the rules of Planet Alzheimer’s sounded much like interacting with a young child. According to Wurth, however, you cannot treat dementia victims like children. They are adults with adult needs, but adults who are have forgotten many of the lessons they once learned.
Wurth insists that caregiving for a friend or family member with dementia can be a rewarding experience—but it takes a very different kind of patience … and a frequent return to the metaphorical planet earth.
If you would like to download Wurth’s four checklists, click here.