The Heart of the Matter

by

Robert E. Reichlin, Ph.D.

September 30, 2003

We all know that Alzheimer’s is a disease – it’s a brain disease, chronic,
progressive, terminal.  It happens inside someone’s head.  There are amyloid
plaques, neurofibrillary tangles, neuronal death.

But is AD really a disease of the brain?  Or, putting it another way is that
the best way to characterize this disease?

I ask this because I think that AD, while a brain disease, is really about
the heart, not the brain.  I say this fully knowing that in the highly
medicalized approach that we take toward AD, it seems unlikely that the
disease could be about something else.  But, that’s the funny thing about AD.

Just when you think you understand what’s happening, something unexpected
occurs.

Think for a moment about treatment.  What are our treatments for AD?  Well, we
have a number of medications that seem to provide support for a failing
neurotransmitter system.  We can treat other, noncognitive illnesses in
support of good health as well as psychological reactions to the disease,
such as anxiety, depression, psychotic behavior.  But, that’s it.  That’s it
as far as medicine can take us.

Yet, we all know there is another kind of treatment, treatment that is
called caring -- or if you prefer something more technical, psychosocial
interventions.

Caring isn’t about the brain, it’s about the heart.  Our caring supports the
personhood of the person, our caring provides a social context for the
maintenance of self in the face of growing losses.  Our caring preserves our
sense of self in the face of our experiences of helplessness and heart-break
as carers.

Caring is not about control.  There is no behavioral management of
Alzheimer’s disease.  We don’t manage people’s behavior. Honestly now, have
you ever tried to manage a child’s behavior?  Why would we ever imagine we
can manage an adult’s?  We can restrict people’s behavior, however.  And, we
do that sometimes to take of ourselves rather than the person with the
disease.  Caring is about optimal responsiveness -- doing the right thing at
the right time.

Alzheimer’s is about the heart, not the brain.  When a person with this
illness talks of overcoming stigma, of fearlessly acknowledging their
difficulties, of refusing to give in that’s a matter of the heart, not the
brain.   What is most destructive to a person with AD?  To be treated as if he
or she was no longer a person, an adult.  Tom Kitwood described such
behaviors as a malignant social psychology that undermines the person’s
sense of viability and selfhood.  To extend the metaphor just a little bit
further, we could call such behavior heartless.

Alzheimer’s is about the heart, not the brain.  It is your care, your
contributions of love, time, energy, hope, and money that resonates with
those afflicted with AD.  Caring isn't sexy, you can’t get grant money for
it -- but, when all is said and done, caring is what we human beings give to
those we love and respect.

Alzheimer's disease (AD) affects 4,000,000 Americans. This slowly degenerative brain disease, marked by changes in behavior and personality, is the most common cause of dementia among older people. AD also causes much misery to patients and their families and puts a tremendously heavy economic burden on our society--$47,000 per person per year for a condition that ranges in duration from 2 to 20 years. For persons wishing to pursue more indepth information about AD, click here for the Alzheimer's Disease Education & Referral Center. To read about arguably the most well known American with AD, click here to read about President Ronald Reagan.

Alzheimer's Self Portraits
·Part 1
·Part 2