Case Study 1: Mr. S
Mr. S was born in Ohio but moved to Boston at a very young age.
Mr. S can speak, read and write English.
Involvement with Culture of Origin
Mr. S lives with his common-law African American wife. He has frequent but conflictual contact with his wife’s children. He often criticizes her children for “messing around out there in the streets that dope and stuff.”
He notes that several of her children are fighting addictions and “trying to get their lives together.”
He notes that only two of her children and grandchildren visit regularly. He strongly feels that love, care and attention from the family play an important role in what it means to age well. “I still believe that, if you have love and care around you, even when you’re sick, that you can live longer, progress longer or whatever. But you have to have that love and care.”
Mr. S describes his wife’s illness in terms of changes in behavior and loss of ability to manage activities of daily living. He describes her apathy and social withdrawal by using the analogy of someone who when greatly upset or shocked by something reacts by becoming mute. He maintains though she does not speak she can understand everything going on around her. He still holds out hope that one day she may “snap out of it” and become her old self again.
Mr. S also describes his personal experience of Alzheimer’s disease in terms of criminality, loss and confinement. Mr. S characterizes Alzheimer’s as a villain and portrays himself as the helpless victim.
When asked what Alzheimer means to him, Mr. S replies “I don’t know. That’s pretty hard. To me, Alzheimer’s [has] robbed me out of a lot, doing the things I want to do with her.” He reflects how the rigors of caregiving have resulted in the loss of a satisfying relationship and have tragically and forcefully altered the trajectory of their relationship.
Early in the course of the illness, Mrs. S’s behavioral and personality changes were interpreted by Mr. S and other family members as the result of hypertension. Other authors have noted that among lay populations “hypertension” is caused by difficult life situations and may cause changes in behavior. One might hypothesize that Mr. S’s cultural perspective on “hypertension” may have influenced his interpretation of the early symptoms of dementia. Mr. S interprets Mrs. S incontinence, social withdrawal and need for significant assistance with self-care activities as the result of her willful resistance rather than “loss” of ability. He does not blame her or feel resentful but directs his anger at her children whom he feels neglect her.
Over the course of several interviews, Mr. S articulated two seemingly different and contradictory explanatory models of his wife’s illness. He used the professional label Alzheimer’s disease when referring to his wife’s condition and seemed to understand the traditional biomedical formulation of his wife’s deficits.
However he spoke much more passionately about his belief that her illness was based on the failings of her family. Her children were guilty of two major offenses:
- Their drug use led to her increased worry and anxiety.
- Their ongoing emotional neglect of their mother contributed to her decline. He strongly believed that the illness was directly related to her anxiety and repressed emotional distress over her children’s illicit drug use.
Mr. S has attempted to utilize formal services to relieve the burden of caregiving and provide socialization for his wife. He also notes that his frustration and sense of confinement associated with caregiving has been further aggravated by the inefficient and inadequate formal services available in his area. “Well, I’m like, you might say, I’m locked in jail. And the only outlet that I have is when she goes to Kit Clark. But now we’ve been having trouble with The Ride. They put her on standby”.
Though Mrs. S is supposed to be transported to an adult day health program each day, often “The Ride” does not come at all. An addition obstacle is that Mrs. S’s eligibility of these serves seems to be in doubt due to changing rules and regulations that restrict eligibility.
Social Stressors. Mr. S has very emotionally charged relationships with his wife’s children. He strongly feels that her children’s drug addiction and emotional neglect have deeply affected his wife’s emotional well being. “I don’t think she can take it. It was not only that she worried about her children but that she kept everything inside her.” Mr. S believes that if “she had opened up and let this stuff out, maybe this (dementia) never would have happened”.
Mr. S also feels morally outraged by her children’s apparent lack of concern and support for their mother’s condition. “She gave all her love to her children. And down inside of me I think it’s damn time for them to turn around and start giving something back to her… that’s all she wants, is to be around her children…She’s got grandchildren she don’t even know.”
Social Supports. Mr. S notes that only two of her children visit regularly and he has ambivalent feelings about the effect of their visits. He often feels “teed off” about their visits because when she is around her grandchildren, Mrs. S is a different woman altogether. She becomes “almost like her old self”. He strongly feels that an important part of successful aging is to have the love, care and attention from family. “I still believe in, if you have love and care around you, even when you are sick, that you can live longer, progress longer or whatever. But you got to have that love and care.”
During the course of the interview, he voiced his complaints quite forcefully and clearly in the presence of the children. His public criticism may have been intended to invoke shame on the part of the children and perhaps to change their behavior. In his everyday life Mr. S spends most of his time involved with caregiving for his wife and he has become increasingly socially isolated.
Throughout the interview, Mr. S was able to speak and communicate clearly to the interviewers. At one point his pointed criticisms seemed displaced on to the interviewer who was a member of the same generation as his wife’s neglectful, selfish children.
This case illustrates the complexity of the psychological experience of caregiving for an elderly African American man. Though he is aware of the Western biomedical model for dementia, he firmly believes that his wife’s illness is just as likely a result of suppressed emotional distress stemming from her concerns about her irresponsible and selfish children.
He is convinced that her condition would remit if her children were more attentive to her and terminated their substance abuse. His assessment of the relationship between anxiety and his wife’s cognitive deficits and behavioral difficulties are reminiscent of a folk illness called “worriation.” Worriation is lay term used among poor African Americans to denote a condition of emotional distress that results in cognitive symptoms (difficulties in concentration, attention and memory), motor restlessness, fatigue and other somatic complaints (e.g. headache).
Mr. S’s experience of dementia focuses on the psychological and social factors, and may serve several purposes. His explanatory model preserves the possibility for improvement or cure and allows social factors to be integrated into the illness in a useful manner. It presumes that if his wife’s children are more attentive and emotionally available to her, her illness will improve. Finally his psychosocial model allows Mr. S and his family to exert some control over the course of the illness.