Caregivers and Patients are Life-Long Teachers


My wife Marja is an adult educator. Almost thirty years ago, she and another teacher founded Academy of Hope to provide high-school-equivalency education for those who had not finished high school. They started with four students in the former guard's room of a low-income housing building. They earned the $50 monthly rent with bake sales. Academy of Hope has now expanded into the largest adult education program in D.C.

Several years after the founding, Marja handed over the administration of the school so she could devote her time to her real love, one-to-one teaching and tutoring. After her retirement several years ago, she has continued to volunteer as a tutor at the school.

Marja still gets called back to deliver lectures "from the founder" to occasional groups. She'll be speaking at Georgetown University next month. Public speaking is not her favorite activity, and she usually has to go through her own personal hell to prepare a lecture.

What she comes up with, however, is a reflection of her own self: straightforward, simple, humble and meaningful. She plans to speak about the "life-long learner," a concept familiar to anyone in adult education.

We don't stop learning just because we've completed high school or college or graduate school. Our formal education can continue indefinitely or pause for a while and then resume.

At Academy of Hope, adults from their twenties to eighties continue their formal education. For some, it's wanting to be able to help their children with homework, for others it's a matter of qualifying for job advancement, and for still others it's the simple desire for knowledge. For all, it's a source of deep pride.

But we may not recognize that we are also "life-long teachers."

We teach specific skills to our children and other adults, too. We teach from our experience. We teach from our presence. We teach from wisdom gained over years. Most of us are not aware of the teaching we do. None of us really knows its long-term impact.

In this blog, of course, I'm teaching in a more formal sense about cognitive impairment in order to bring it out of the closet and into the light. I also teach in my writings, lectures, and seminars.

But much of my teaching is less formal, although, perhaps, more important. People have told me that just talking openly about my impairment cuts through some of the stigma attached to the disease. When I remain active within my community and take on whatever responsibilities I can handle, others learn that Alzheimer's or any cognitive impairment is a gradual process during much of which the impaired one can still participate in daily life. Others begin to recognize that one can live with this diagnosis without fear.

In the same way, each of you who reads this blog, or is cognitively impaired yourself or cares for a person with cognitive impairment, each of you teaches others about Alzheimer's or other cognitive impairment. The teachings may be very specific, for instance, passing on some medical knowledge you've gained or the availability of a website or an Alzheimer's organization.

Or the teachings may be less well defined. The willingness of you who have an impairment to "out" yourself neutralizes some of the embarrassment and shame that makes people afraid of the disease. Your participation in the regular activities of daily living gives others a more realistic picture of what it means to live with Alzheimer's and reduces some of the fear. Your willingness to talk with another person who is worried about his or her own cognitive impairment can be very important.

The readiness of those of you who are caregivers to join support groups helps other people who are earlier the journey. When you dare to ask others for help, you teach about community and diminish the anxiety that others may have about the isolation they fear. And when you include even your moderately demented loved one in activities she or he enjoys, you teach people to be less afraid.

Those of us who are in the middle of the struggle with this disease may forget that we have learned a lot that we can teach others. We are a relatively small group of people. We have wisdom and unique expertise that is profoundly important in our society. In a culture in which Alzheimer's is still deeply misunderstood, the education we provide is a vital piece in the effort to dispel longstanding ignorance and shame.

Editor’s Note: David’s journey with Mild Cognitive Impairment was chronicled in “Fade to Blank: Life Inside Alzheimer’s,” an in-depth look at the real lives of families impacted by the Alzheimer’s epidemic. His story continues on his personal blog on

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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David, thanks for a lovely blog that makes such a good point about our always having to learn in life and share that learning with others. I knew I was a rookie caregiver who had to constantly learn new things as my wife's condition worsened. But, I also found it very helpful for me to recall that she was a rookie "caregivee" who was just struggling to find her way and do the best she could with what she now had to deal with. A very poignant portrayal of these dynamics can be seen in the movie "On Golden Pond" with Henry Fonda and Katherine Hepburn as aging, caring caregiver and caregivee, along with their daughter and grandson, struggling to learn how to live in the very different stages of their own lives.