by Rabbi Richard Address~
It seems that dementia is all around us. Gather a group of Boomers together for a social event, say, and you can bet that within a reasonable amount of time part of the conversation will turn to issues involving care-giving. Now, a safe bet will be that in an even shorter time, someone will raise the specter of dementia and our collective fear of traveling down that long and winding road.
According to Alzheimer’s and dementia experts, Azlheimer’s cases are expected to grow from about 5 million now to about 15 million in the next several decades. This is an issue that cannot be avoided. Many of us have lived this with our parents or spouse. Michael Kinsley, in a recent New Yorker article entitled “Have You Lost Your Mind?” notes that “Baby boomers…will be the second dementia generation, but the first to know it is coming”. Kinsley wrote that our generation loved a sense of competition that will now devolve into what he calls “competitive cognition” the goal being not who dies with the most toys but “whoever dies with more of his or her marbles”. (The New Yorker. April 28, 2014. p.24, 25)
This growth in dementia and it’s evil companion Alzheimer’s, is a direct result of the revolution in longevity that we are enjoying and expect. The challenges that face us as a society are overwhelming. The need for specialized care-givers is growing and the reality is that there will probably not be enough trained care-givers to take care of us. There are a growing number of studies that are looking into this looming crises.
In the March-April edition of “Aging Today”, a publication of the American Society on Aging, Lynn Friss Feinberg of AARP wrote of the declining “care-giving support ratio”. She defines the care-giving cohort as those between 45 and 64 who care for people over 80. She sites that as of now that ratio is 7 to 1. However, as boomers age she notes that the ration will drop to about 4 to 1 in a decade and to just under 3 to 1 by the time we approach mid century. (“The Paradox of Family Care” Lynn Friss Feinberg: Aging Today. American Society on Aging. March April 2014. Vol. xxxv. No. 2. P. 7) Family care-giving for those with dementia is not easy and all too often results in the need for placement into a specialized facility. The stress and strain, physically and emotionally on a care-giver and that care-giver’s family can be devastating.
The spiritual aspect of this issue is also starting to emerge as a major topic of conversation. What does this mean for a person with dementia or Alzheimer’s? Is that person’s soul gone? If cognition is a key to “being alive” and that sense of cognition has been taken away, “who is this person before me?” This is not an unknown question.
I suggest that this too will be a major question for our society as we move forward. As the disease progresses, does a person’s “usefulness” also disappear? Jade Angelica, a Unitarian minister, was moved to write a beautiful book on her journey of caring for her mother who had Alzheimer’s. She questions the notion that people with cognitive loss have nothing to teach us. She sees the untapped and often unrecognized spiritual aspects of caring for someone with such loss and challenges us to re-imagine how we think of these relationships.
“Rather than being useless, people with Alzheimer’s and dementia could be our most important teachers in the school of love and life.” She speaks of the need to see with our hearts and not our eyes and, as challenging as this may be, Angelica offers us a way to see the spiritual in what is so difficult. (“Where Two Worlds Touch”. Jade Angelica. Skinner House Books. Boston, MA. 2014. P.76). This spiritual aspect of dementia care is taking on another level with the recent formation of a national coalition of clergy (ClergyAgainstAlzheimer’s) that has joined in a collective statement designed to bring attention to the issues of Alzheimer’s and dementia.
The crises regarding dementia is now before us. Raising awareness and providing opportunities for discussion for care-givers and families needs to be part of religious institutions programming. The spiritual aspect of this issue is a profound one for our time and for the decades to come.