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

Think for a moment about treatment. What are the treatments for AD? There are 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, and psychotic behavior. But, that’s 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 a more technical term – psychosocial intervention. Caring isn’t about the brain, it’s about the heart. Caring supports the personhood of the person with the diagnosis and provides a social context for the maintenance of self in the face of growing losses. Caring preserves the sense of self in the face of our experiences of helplessness and heartbreak as carers.

Caring is not about control. There is no behavioral management of Alzheimer’s disease. We cannot 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 control and restrict people’s behavior, however. And, we do that sometimes to take care 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 were no longer a person or 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, yet its value to the diagnosed individual is immeasurable. However, when all is said and done, caring is what we human beings give to those who we love and respect. It is an act of the heart.