Heart and Soul: A Phenomenology of Dementia Spouse Caregivers’ Relationship Closeness

All persons with dementia exhibit combinations of cognitive impairment (memory loss and aphasia), functional losses (changes in activities of daily living), and neuropsychiatric disease manifestations (fluctuating moods, behaviors and psychoses). The spouse caregiver role and life are affected by these symptoms which can cause intimacy, reciprocity, and communication issues, and frequently result in the caregiver’s feelings of inadequacy, hopelessness, and embarrassment. Yet caregivers somehow manage to reconstruct and maintain a closeness as a couple. Relationship closeness (RC) found in all marriages is simply depicted as the quality of the communal and emotional bond between husband and wife. Limited research demonstrates some elements of RC are altered by the progression of dementia disease and links RC with the couple’s morbidity (ill health and depression) and caregiving outcomes (burden, coping, transcendence and efficacy). But RC is poorly defined in published studies, and not adequately or critically examined in context with dementia’s cognitive impairment and neuropsychiatric symptoms, whose very characteristics disrupt critical elements of interpersonal relationships. The purpose of this descriptive phenomenological study was to investigate the phenomenon of spouse caregiver RC; it focused on dementia and the sequelae of dementia symptoms and behaviors. The research questions were: 1) what is the fundamental structure of this phenomenon, and2) what is the meaning of the experience of this phenomenon. This inquiry uncovered a rich description of marital RC in couples, by focusing on their memories and lived-world experiences as caring partners, and as their spouse expressed dementia symptoms daily. Both theoretical underpinnings and qualitative research design used Colaizzi’s existential philosophy and Phenomenological Reflection method of data analysis. Data emerged from the author’s Individual Phenomenological Reflection and sixteen dialogal interviews. Findings revealed the meaning of the fundamental structure of RC in the face of dementia as a journey. Five essential constituents emerged: A past together, the present in which spouses see, feel and respond to the dementia, and lastly, a future together. The meaning expressed by spouses was woven in a tapestry of dementia symptomatology, and dyadic internal and external changes in RC described with important sub-themes such as loss and hurt, imperfect caregiving and compassionate love