A phenomenological approach to understanding the changes in marital intimacy for caregivers married to a spouse with Alzheimer's Disease
Adams, Mark S.
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Alzheimer's disease or a related dementia (ADRD) can create enormous strain and burden for family caregivers. But the potential for relationship disruption via changes in intimacy seem to be the greatest for couples in long-term marriages. I conducted intensive interviews with spouses who provide care for their partner with ADRD. I wanted to better understand how some spousal caregivers had managed to maintain a sense of continuity in their marital intimacy, and to understand what may have kept others from maintaining that same closeness. I also explored the role of physical intimacy and/or sexuality in facilitating the process of marital continuity. I proceeded from the assumption that people want to feel close to those they love and that a person can be active in creating that closeness. I believe that the sexual relationship holds a great potential for maintaining feelings of closeness and connection. I used a phenomenological approach to describe, analyze, and interpret data of spouses' lived experiences. Then I attempted to extrapolate those experiences into clinical interventions or suggestions to assist clinicians who may work with similar couples. My analysis shows that spouses who provide care for their partner with ADRD moved through a process of change that affected their opportunities for further intimacy. The disease processes eventually led to a diagnosis of ADRD for the impaired spouse. A sense of uncertainty or ambiguity grew as the symptoms of the disease increased. Caregiving spouses were faced with the challenge of emotionally and psychologically separating the symptoms of ADRD from the personhood of their partner. The growing ambiguity was usually accompanied by challenges (both emotional and practical) to cope and adjust to the new dynamics. Adjustment and working through the challenges did not automatically mean that the spouse who was providing care would feel emotionally close to his or her partner, although it was much more likely. There is one last overarching influence that affects the whole process – marital history. This study has implications for clinical theory and interventions for practitioners working with couples or spouses who provide care to a partner with ADRD.