Ask To Be Treated Like A Person, Not a Patient

Through the course of the posts on this website, I urge you to adopt the following attitude:  Think of a person with Alzheimer’s, or any other permanently disabling condition like a stroke, as a handicapped person rather than as a patient with an illness!  That will consistently focus your attention on helping the person learn to live with their handicaps rather than on treating their symptoms as a medical problem caused by the disease.  That attitude is a cornerstone of The Developmental Model of Elder Care that this web site and Carol’s book seek to illustrate, explain and share with you.

Some of the behavior patterns included on symptom lists for various “phases” of Alzheimer’s are not caused by the disease processes in a person’s brain but by their care patterns.  Here is a recent example described to me, often called wandering.  Eighty year old Maude (a fake name) is in a nursing home.  Her daughter spends time with her several days a week.  Recently, when Maude’s daughter returned from a brief trip, Maude didn’t recognize her, was unresponsive, inactive and continually drowsy.  The daughter said Maude never behaved like that during her visits, always recognized her and was responsive and in a good mood.    Upset and angry, the daughter insisted on an explanation from the caregivers for this atypical pattern.   (note to reader: can you think of an explanation?)

They said Maude hadn’t wandered in the past, but in the daughter’s absence Maude began a lot of wandering, often exploring other people’s rooms, and sometimes picking up their things.  That upset other patients so the staff sedated Maude to keep her from causing them so much trouble.  The sedation explained the mother’s state when the daughter visited her, but it didn’t explain the atypical wandering behavior.   What could have caused that?

The daughter had read Carol’s story, knew a person’s behavior is always guided by a personal goal, asked her mother what her goal was, and got this explanation.  “Day after day I just sat there with nothing to do.  I got so miserable and bored I finally got up and started wandering around exploring the place.  I didn’t mean to cause any trouble.”  The medical model treated the troublesome symptom by disabling the woman with sedation.  The daughter instructed them never to do that again!

Maude’s wandering wasn’t a symptom of her disease, but a normal adaptive reaction of humans to tedious, unvarying and uninteresting contexts.  Boredom is a moderately anxious emotional state accompanied with restlessness, muscular tension, and problems of attention and concentration.  People don’t like that negative feeling and try to get rid of it by initiating some kind of activity that produces novelty and variability into their boring ongoing experiences, e.g. daydreaming, reading, watching TV or physical exploration.  (Think of how you feel and what you do when you are bored.)  A caregiver guided by our developmental model would have focused on the cause of Maude’s wandering and relieved her boredom with something interesting for her to do.

{This illustrates what many of our posts will be like:  an example of a caregiving episode with a potential explanation of why it was satisfactory or unsatisfactory.  Readers’ comments or questions about any example are welcomed.  If you have a good example from your own experience or observations please share it with us so we can share it with our readers.  Over time we hope this process will produce a long list of examples others may find useful in providing satisfying elder care.}

One thought on “Ask To Be Treated Like A Person, Not a Patient

  1. Your post reminds me of a farmer who had Alzheimer’s. The staff had a difficult time managing his care because he wandered anxiously around the facility and argued with anyone who tried to redirect him, including his family. An experienced Social Worker and Nursing Assistant knew he was searching for something, but what? We met with his family & the son suggested his dad might be looking for his tractor. We decided on two actions: ONE, the son took pictures of the family farm & equipment & had them enlarged to make a scrapbook of memories. Every day a family member looked through the scrapbook and talked about the farm with him; TWO, the son drove the tractor to the nursing home parking lot whenever possible and took his dad out to see it, feel it, sit on it and go for a ride. Our farmer friend could not talk well, but every time he saw or rode on his tractor or looked at the pictures, his face lit up with happy smiles.
    I think that story illustrates treating him like a person, not a demented patient.

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