The question raised in this article was if dependence was a useful concept in staging Alzheimer’s disease. The discussion was wide-ranging and robust and much later it occurred to me that the arc of this discussion was that dependence implies a relationship whereas the other measures – cognition, function and behavior – do not. This may seem simplistic for some of us who have worked with caregivers for a long time and have recognized the responsibilities and stresses that can accompany the long trajectory of caring and living with a family member who has dementia. But the medical model often reduces disease to linear and quantifiable measures of diagnoses and functional scores. It was wisely pointed out that dependence is a more wholistic approach to talking about the disease process and the importance of emphasizing the emotional relationship – either between spouses or between generations – and separating it from the functional role of providing ADL tasks. As social workers we may be more familiar and comfortable talking about familial and emotional relationships and perhaps physicians can learn from us, and recognize how important that we be part of an interdisciplinary team helping families through this process.
Culturally we have set up an antagonistic dichotomy between independence and dependence. Too often older adults have been characterized as “fiercely independent” as a younger person. Young or old, wouldn’t any of us prefer to be independent? Independence implies autonomy and contributes to one’s sense of self and self-esteem. The idea of “spiritual independence” is meaningful because it recognizes that despite limitations of cognition and memory, an individual can remain independent in spirit, or essence, attitude and temperament. If we acknowledge the difference between the spiritual and functional, then the responsibility for family, friends and community is to find the activities and relationships that honor that spirit of independence and individuality as the disease progresses.
And why is it so difficult to accept and learn the idea of interdependence that recognizes that we all rely on each other throughout our lifetimes in multiple settings.
It was interesting to me that while much of the discussion was about family roles, in sharing examples from our clinical practice we easily switched back and forth between adult children or spouses. Defining and explaining the disease from the perspective of dependence doesn’t seem to matter who the family member is—the emotional relationship is deep and the shift in expectations of the relationship, as the disease progresses, is profound. We have all heard from caregiver daughters the frustration and fatigue expressed as, “Now I’m the mother!” This was not a comfortable thought for several of us, sensing a demeaning nature in the comment. Personally, I don’t feel that caring for my aging and frail mother is a role switch, dementia or not. Rather, I do believe it is a family’s job to take care, to step-in when an aging family member is changing. For me, it is not a role switch. It just is the role. Thinking about it as taking on greater responsibilities, as one person framed it, feels more acceptable; as a daughter I am now an older more mature person myself who understands responsibility and interdependence.
Major questions still feel unanswered about the need for staging the disease and the adequacy of our assessment tools. Having had the opportunity to sit with families in their homes and conduct long and deep conversations about the functional changes occurring for their family member, without the necessity of filling out a checklist type of assessment form, allowed all of us to see a fuller picture and explore fears and possibilities. For some families, having a concrete number is helpful offering a sense of control or clarifying next steps. But the discussion of the emotional impact, using the language of dependence highlighted for me the complexities and “messiness” and the huge discomfort and hurt and loss that families experience when just beginning to recognize memory loss changes for their loved one.
The Round Table Discussion Group meets monthly for an interdisciplinary conversation with experienced professionals in the field of aging. Each conversation uses one or two journal articles as reference points. The article read for this discussion was:
Dependence As A Unifying Construct in Defining Alzheimer’s Disease Severity, McLaughlin et al, Alzheimer’s & Dementia 6 (2010)482-493