Isolation is not good for any mammal, humans included. All of our biological needs could be met, but without social and emotional nourishment the world becomes an inhospitable place and people deteriorate.
This was the message of Michael Verde – author, film producer and award-winning educator – when he spoke at the Vero Beach Museum of Art on January 14. The focus of his talk, titled Love is Listening, is the importance of being with those with dementia; he spoke compellingly of the power of empathetic attention as a way to maintain an emotional attachment.
Verde says, “People with dementia can hear in our voices, see in our eyes, and feel in our touch just how much we genuinely respect and love them. And it’s our respect, attention, and love that that heals the emotional isolation that dementia often causes.”
There are several types of dementia; the most common causes are Alzheimer’s disease and brain damage due to reduced or blocked blood flow in vessels leading to the brain. So there is a “disease” which causes the dementia, but Verde focuses on the “dis-ease” that those with dementia feel as a result of being disconnected from emotionally meaningful relationships. He says, “By virtue of being human, we are all qualified to participate in the healing of the dis-ease.”
Verde asked the audience to think about “doing” as a verb, followed by the prepositions to, for, and with. When caring for those with dementia, we usually think in terms of doing things for them—providing food, helping with hygiene, taking them to appointments. And while those are all good and necessary things, Verde makes the point that doing with requires a much deeper level of involvement and attachment; it also means we relinquish a degree of control. Many of us are only comfortable when in control of ourselves and our environment, so to give up a piece of that control requires courage.
Verde spoke of how we internalize social norms; how we spend much of our time demonstrating to others that we have mastered social expectations – in other words, that we are “normal.” He argues that if being normal is our primary goal in life, we are not well suited to provide the “more than normal” care that gets us from doing for to doing with.
Verde showed a clip from the 2007 PBS documentary There Is a Bridge (which he produced); it powerfully demonstrates this point. In it, 87-year old Gladys Wilson, who has severe dementia, and Naomi Feil, who is an expert in communicating with those with dementia, share a breakthrough moment. As their interaction begins, Gladys is totally non-responsive to Naomi’s voice and touch. But then Naomi goes nose-to-nose with Gladys, and begins to sing Jesus Loves Me; she knows that Gladys used to sing gospel songs in church. Gladys bangs on the arm of her chair, and Naomi matches the intensity of her voice to Gladys’ rhythm, all the while stroking her face and looking directly into her eyes. Gladys begins to sing along; she has all the words right, and she appears happy and content.
Naomi’s approach certainly wasn’t normal, in the sense that you don’t often (or ever) see someone singing an inch from the face of someone with deep dementia, all in the faint hope of getting some sort of response. But Naomi didn’t care about being or looking normal, all she cared about was Gladys. She was acting in a more than normal way; she was doing with Gladys rather than doing for.
Verde is completely in favor of the money and resources that are put toward finding a cure for Alzheimer’s disease, but he wishes there was more attention paid to healing the “dis-ease” of dementia. If more caregivers knew that there were ways to tap into the emotions and the memories that dementia cannot erase, benefits would accrue to both the sufferer and the caregiver.
More information, including the clip of Gladys and Naomi, can be found at www.memorybridge.org, an organization whose purpose is to promote communication with and memory preservation for people with Alzheimer’s disease and other forms of dementia.