December 30, 2010

Often, the family caregiver, who sacrifices so much for her loved one with dementia, has the most difficult time loving the patient as he is, because her view is so clouded by grief over what her loved one once was and can never be again.  This is by no means a criticism of caregivers.  The dedication they show 24 hours a day, 7 days a week is a phenomenal testament to sacrificial love that has few parallels.  The situation is complicated by the fact that the descent into dementia is usually a gradual process.  In the beginning, you begin to notice that your loved one is repeating himself, getting some things wrong, confusing some things.  Any logical person would correct him.  As the process continues and your loved one is diagnosed with dementia, you strive to bring back the person you knew and loved as they once were.

The breakthrough comes when you realize he can’t be brought back.  When you learn that you must meet him in his “now”, which may well not be your “now”.  In essence, you must grieve the loss of the one you loved, and learn to love anew.  Each of us, no matter how infirm or debilitated, is still a human being with needs, hopes, drives.  All of us need to feel loved for being ourselves, to be accepted and validated for who we are, even if that “who” is revealing itself  for the first time with every passing day.

You see, the dementia patient has entered a different realm, one in which nothing and no one is familiar, reality is askew, time has lost its meaning, and  connection is no longer maintained with the world in which he is living. This is not a conscious decision made by the patient.  It is an unavoidable consequence of the disease process.  It serves to isolate the patient in his own cocoon of confusion, frustrate the caregiver who can not longer “reach” the one she has known and loved, and further destroy the self-identity of the suffering dementia victim.   Furthermore, as she loses contact with one whom she has loved, she loses contact with part of herself.

The key to coming to terms with this loss is to realize that the human being you have known and loved is still there, but his persona has been masked by dementia.  You must strive to look deep within, past the speechless eyes and blank stare to the heart.  Though memory, orientation, language and other cognitive elements are fading, the emotional self remains.  Likewise, the ability to recall remote memories and experiences remains to some extent.  It becomes the caregiver’s task, then, to reach into the deepest parts of the self and try to connect.  Every perceptive and communicative modality may be called upon in this task…touch, smell, sight, reminiscence, as well as the expressive arts (art, music, dance, poetry, drama, etc).  Verbal expression can no longer be relied upon as the primary means of communication.  We must give the patient a full palette from which to paint.  And if we earnestly observe and listen with all our skills, we may just learn the new “language” of our loved one: the language of the heart.

The outcome of this approach is validation, both for the one with dementia and the caregiver.  For when we learn to love and accept him in his “now,” we do the same for ourselves.

Daniel C. Potts, MD


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  1. This is a beautiful description of the transformation that dementia patients undergo, and a helpful guide for family members and caregivers. Thank you!

  2. […] “Loving Those with Dementia the Way They Are“, by Daniel C. Potts, MD "You must grieve the loss of the one you loved, and learn to love anew." […]

  3. Beneficial post – I enjoyed it very much!

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