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 this one may send and the mindset 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 due to 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. That is, we could not get 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 – patients and caregivers – by concentrating on 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. Those with dementia were not seen as controlled by “random” activity (as wandering, verbally disruptive behavior and similar emotional and intellectual responses to diminished cognition were then interpreted to be), but instead were seen to be doing things that were attempts (per Sacks) to preserve identity. In this formulation, 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 reframe the experience of the illness.
The recent era of person-centered approaches in care of those with dementia, as for all persons in our care settings, developed from this new view. This view being that the behaviors are expressions of a search for self that is happening even as people cannot find confirmation in the environment of who they believe 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. Relationships are uniquely able to lend confirmation to the self as experienced by the person with the illness. Technology is not valuable as merely an (expensive) electronic attendant to deterioration. It is a restorative vehicle that can help the person replace and compensate for the assault on identity, of selfhood, that is dementia.
Technology can do this by enabling pleasurable experiences with others (remote and on site), and by allowing those with dementia to experience the pleasure found in successfully meeting challenges through problem solving – like all people do.
Technology can enhance relationships by 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 to caring for the whole person.
Judah L. Ronch, Ph.D., is the dean and a professor at the Erickson School, University of Maryland Baltimore County. He was formerly a vice president at Erickson Retirement Communities.
From the May 01, 2013 Issue of McKnight's Long-Term Care News
