How technology can enhance relationships
Judah Ronch, Ph.D.
There has been a trend of late to refer to specialized care of individuals with dementia as “memory care.” I understand the need for a quick, catchy title for a new product or service line in long-term care, but I worry about the message it may send and the mind set it might create in management, families and employees. Here's why.
When I began working in the field in the 1970s, persons with dementia were perceived to be – and treated as — vessels from which memory and personhood were slowly leaking from a process that we could do nothing about. We just tried to contain their “problem behaviors” and prevent things from getting worse, all the time not thinking about why these behaviors occurred beyond the idea that the disease caused the behaviors and since we couldn't stop the disease, we (and those who had it) were at its mercy. We were all, as Kleinman (1988) so aptly put it, attendants to deterioration. This helpless position made us focus on the way the illness controlled all of our lives – patient and caregivers, by concentrating and documenting what was lost. In Cohen and Eisdorfer's (1986) characterization, Alzheimer's and related disorders meant “the loss of self.”
Contrast that with the words of neurologist Oliver Sacks (1985), who opened a door to a more active role for caregivers when he wrote:
…a disease is never a mere loss or excess – there is always on the reaction of the affected organism or individual, to restore, to replace, to compensate for and to preserve its identity, however strange the means may be… (p.4)
This view of illness saw the affected person as an active player in the process of coping, and not by “random” activity (as wandering, verbally disruptive behavior and similar emotional and intellectual responses to diminished cognition were then interpreted to be), but instead by doing things that were attempts (per Sacks) to “preserve its identity.” The caregiver's role was to help them with this process of identity repair, even though it would ultimately end in defeat. It was a new way to help reframe the experience of the illness.
The recent era of person-centered approaches in care of persons with dementia, as for all persons in our care settings, developed from this new view of the behaviors we observed, namely that they were expressions of a search for self even as the person could not find confirmation in the environment of who she/he believed themselves to be based on the remaining information stored in remote memory.
That is where technology can be so helpful, perhaps uniquely so. I must emphasize that I do not see it as a substitute for human relationships. These are uniquely able to lend confirmation to the self as experienced by the person with the illness. Technology is not valuable as an (expensive) electronic attendant to deterioration. It is a vehicle that can help the person restore, replace, and compensate for the assault on identity of self that is dementia through pleasurable experiences with others (remote and on site), and by experiencing the pleasure found in successfully meeting challenges through problem solving – like all people do.
Technology can be a partner in caring for the whole person by enhancing relationships that go beyond physical care giving and enabling the whole person to be present with others and experience joy, rich sensory stimulation and success. This use of technology will take us beyond caring for the person's memory and provide care for the whole person.
- Cohen, D. and Eisdorfer, C. (1986). The loss of self: A family resource for the care of Alzheimer's disease and related disorders. New York: Norton.
- Kleinman, A. (1988). The illness narratives: Suffering, healing and the human condition. New York: Basic Books.
- Sacks, O. (1985). The man who mistook his wife for a hat. New York: Summit Books
Judah L. Ronch, Ph.D., is the dean and professor at the Erickson School, University of Maryland Baltimore County. He will be the featured speaker at “21st Century Solutions: Technology Enhances Dementia Programming,” a webcast at 1 p.m. ET on April 9. Click here to register.