Seeing the Person Behind the Disease

January 2, 2013

by Daniel C. Potts, M.D.

In providing the best person-centered care to those with Alzheimer’s disease and other dementias (indeed, to anyone with progressive illness) it is essential to maintain focus on the human being with the condition, and on his/her care givers.  Progressive disease and associated disability can cloud out self-expression; even an individual’s own awareness of his/her life story.  We must not allow this to affect our provision of care.

As progression occurs, our task becomes formidable.  Disease effects, such as loss of speech and memory, make meaningful interaction more difficult.  Infirmity tends to dehumanize, to change our perception of people.  We become the “normal,” and they are perceived to lack wholeness.  This very perception contributes to the morbidity of the disease.

The challenge, then, is to find ways to see them as persons, despite disability.  To do this, I believe, we must perceive in each one an innate, inconvertible, God-given identity that remains intact despite illness, even loss of cognition.  The focal point should be on the human center, rather than the façade.  In our interactions, we must find ways to reach the core identity; to, metaphorically-speaking, pull up a chair at their dining table and enjoy a favorite meal.

How may this be done?  First, we must learn the essentials of who they were prior to the affliction.  We should query family members and caregivers, as this information may be hard to obtain conventionally from patients themselves.  Next, we should creatively employ reminiscence, and tap into the associated emotional framework on which these memories are positioned.  I believe the expressive arts (music, visual art, poetry/expressive writing, drama, dance and movement) to be the best tools for eliciting these memories.  In addition, based on what we learn about core identity traits, we should give individuals the opportunity to express these traits in the environments of care that we create.  For instance, if hospitality has been an essential life characteristic, then we should attempt to provide opportunities for the expression of hospitality in the individualized care plan for a particular patient.  If musical expression has been important, then we should make this available.  In fact, I think we should use a life-theme approach in tailoring care for those with cognitive disorders, drawing from earlier life, but not just looking back.  We should create an environment in which they may safely live into their core character traits in structured independence, and not have to worry about the details.  And we should structure this in such a way that strengthens relationships between patients and caregivers.  This minimizes disability and accentuates core identity.  I believe the results will include improvements in perceived self-worth, behavior, affect, communication, care giver relationships, dignity and quality of life, and reductions in psychoactive medication usage.

In the end, these efforts will strengthen personhood, our greatest individual asset.  And, when personhood is strengthened, dementia’s hold is weakened.



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