Dementia: Lost and Found

Is it possible to vanish in plain sight? In cases of dementing disorders, sadly, we learn that the answer is yes — a person can be physically present and fully accounted for, yet still be absentDementia: Lost and Found

Learn more from the author, Dr. Charles Dodgen, and his writing about dementia.

Dementia: Lost and Found

The deterioration of the brain that characterizes Alzheimer’s disease forces us to consider challenging questions about the essence of personhood and the basis of relationships. When the usually-tightly-knit mind and body become separated by illness, we must ponder whether our identity resides in our mind or body when the two are usually together. But that’s only the half of it; a person with dementia does not just cease to exist to us — we disappear from him or her — a scenario that can be hurtful to those associated with an individual with a dementing disorder.

If we seem to have lost our presence in the mind of a loved one, then the foundation of our relationship can feel shattered and our motivation to be with him or her reduced or eliminated. The termination of a relationship-based connection to a person with dementia is not necessarily the end of the story; a more value-driven commitment can provide purpose and meaning and revitalize the link.

Personal identity is more than skin deep; there is an essence which allows for the continuity of personal identity despite radical changes in ability and appearance, and which reminds us that our existence must include mind or spirit, in addition to body.

My work in a nursing home has made this point evident, as I discuss in my recent book, “Simple Lessons for a Better Life: Unexpected Inspiration from Inside the Nursing Home.” Nursing home residents may have lost organs and limbs, suffered sensory impairments (e.g., losses of hearing or sight), and experienced disfigurement (e.g., from stroke or accidental injury), yet they remain easily recognizable to those who know them. But when the brain is attacked by a dementing disorder we see a loss of identity, even when their physical presentation remains largely undisturbed.

These are complicated situations evoking intense emotional reactions and challenges which do not allow for easy solutions. For example:

  • When do I mourn?
  • If my grandmother is physically present, but her mind absent, is she still here?
  • Should I keep visiting once she fails to recognize me? Does it matter?
  • What will people think of me if I stop coming? What will I think of myself?

The case of Norman, a married, 78-year-old retired attorney with whom I worked for about a year in the nursing home, illustrates this dilemma.

Norman’s trajectory followed a classic course — a slow deterioration of mental faculties, manifesting in diminishing abilities to communicate, to act with intention and to regulate his feelings and behavior. By the time I stopped treatment with Norman, he had become a stranger to me. Not only did Norman’s personality disappear before my eyes, but I ceased to exist in his eyes. Over the course of time his identification of me devolved from, “Dr. Dodgen, the psychologist” to “Some kind of doctor, but I don’t remember your name” to “The guy who visits and asks questions” to no recall of ever having met me, and ultimately to an unknowing, vacant look when I greeted him.

Although we once shared an intimate relationship through discussion of his personal life in therapy, I eventually became indistinct and insignificant to him. To a professional treating a patient with a dementing disorder, this progression is understandable, expectable, and therefore tolerable.

But, for family members the loss of specialness can be deeply hurtful. Imagine that you had engaged in a lengthy conversation with your father yesterday and he forgot every word of it when you spoke to him today. Consider how much more crushing it would feel if he forgot your name or even failed to remember who you were.

Family members have confided to me that this is a point at which it becomes significantly more difficult to maintain contact with the person with advanced dementia. Norman’s inability to benefit from the treatment may have necessitated my discontinuation of service, but what about Norman’s family members? Have they terminated their relationship with him as well? His wife has chosen to visit him devotedly through the entire course of his illness; she related to me that although she was certain her attendance now meant little to Norman, it was important to her to honor her marriage vows. Norman’s wife initially acted to demonstrate her faithfulness to her husband, and later was motivated to express her fidelity to her values (action which provided benefits of self-dignity and self-esteem — the natural rewards of behaving in concert with high moral standards). Family members of others with dementia have made statements such as:

  • “I keep coming because I promised my father I would”
  • “Because it is the right thing to do”
  • “Everybody deserves to have somebody to watch over them”
  • “I would volunteer service to strangers at the hospital, why not to my mother?”

These explanations indicate a different kind of motivation that relates less to the actual relationship and more to morality, ethics and conscience.

Once an individual’s mind is compromised by illness he or she is lost to us and we to him or her, an anguishing double loss of identity. Yet, by identifying important ethical, moral, and spiritual values we can still find purpose, meaning, and satisfaction in relating to the person with Alzheimer’s disease and other dementing disorders.

How do you relate the most to loved ones with dementia? Do you have any suggestions for us? Share yours in the comments below.

About the Author

Charles E. Dodgen, Ph.D., has been a clinical psychologist in private practice for 28 years. For the past 18 years, he has served as a consulting psychologist at the West Caldwell Care Center, where he provides diagnostic assessments and individual therapy for a geriatric population. Dr. Dodgen has also enjoyed a long affiliation with Saint Barnabas Medical Center in Livingston, New Jersey, and has authored three books on substance abuse. “Simple Lessons For a Better Life” is published by Prometheus Books and is available from all online retailers and bookstores.

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