Stages of Dementia – Part I

When you read about dementia you learn that the disease presents itself in stages. The literature seems to describe six stages, seven if you think of stage one as the “normal” range in which most of us function. I am reconstructing these stages, attempting to understand the progression of the disease in our family.

In the second stage of dementia the key concept is forgetfulness. People have lapses of memory — forgetting where things are like keys, eye glasses, and purses. In retrospect with our family member, many things were mildly disorganized — clothes not hung up, food items left on the kitchen counter, or items put in inappropriate places. Some of us might argue/worry that we are perpetually in this stage.

A person’s personality begins to change noticeably in the third stage, but ever so slightly, and the person with dementia may become aware of a problem though not understand it. Misplacing personal items becomes very upsetting. Reading becomes more difficult. Sometimes the person reads but cannot say what he or she read, and a person who loves to read may have many books, all started but none ever finished. (If your family member is an inveterate reader, this is an important observation.) At this point our family member hid objects so they would not be stolen, but did it so well that they could not be found so she assumed they had been stolen. Fears developed.

When a stroke occurred around this time we began in earnest, to offer support.

The stroke changed everything. Moving through stroke rehab required therapies for speech and movement. While there was enthusiasm for these “assignments,” there was not enough concentration to follow through independently with the prescribed activities. In the beginning speech, movement, and small muscle agility improved markedly. To truly progress, physical, occupational, and speech therapies required the practice activities outside of the sessions, and we noticed that this practice was not happening. Speech started to decline markedly, when it had been improving. We thought the lack of practice was on purpose or defiant, we but now know differently.

As post stroke therapies continued we now believe that stage four of dementia was also progressing. We offered support and coordination for medical visits and financial affairs, and it was happily accepted. Our family member went to the doctor regularly, a physician she had seen for more than ten years, but strangely, the doctor did not offer us any comment about any deficiencies. The physician, in fact, seemed tuned out and not particularly invested in her patient. With moderate support and a nurse visiting every few days to organize medications, mother’s independent living continued. However, we received frequent long distance phone calls asking for help because the medication compartments were confusing. New neighbors were  frightening. Mother skipped activities and meals in the dining room, but interaction with friends, a book club, and relatives continued. Following long-established routines provided the best therapy.

At this point we suggested/urged our family member to move closer to us. We found a perfect assisted living situation quite close to our home, so we began packing, choosing what to keep and what to give away or sell. We discovered that our family member was unable to help prepare for the move.  Packing was just too difficult — in fact making choices proved to be almost impossible.

To be continued.

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