Exploring Perceptions of Personhood of a Spouse in the Early Stage of Dementia

It is estimated that by the year 2050, one in three Americans 65 years and older will be living with some form of dementia, a group of symptoms that includes over 50 known types of diseases and conditions that currently affect over 6.7 million people in the United States. Because the psychological and physical decline associated with dementia impairs memory, judgment, communication, and other abilities that make independent daily functioning possible, it is important to care for the afflicted individuals in a way that takes care of their basic needs and preserves their sense of self, or their personhood. Many individuals in the early stage of dementia (ESD) live at home and are cared for by their spouses. How caregiving spouses perceive their partner with dementia and what meaning they give to the psychological and cognitive decline may be extremely important to knowing how they provide care for their partners. This knowledge also can improve targeted support for couples living with dementia. This study explored how eight caregiving wives perceived the personhood of their husbands in ESD. The three research questions were: (1) What meaning do caregiving wives give to the cognitive, behavioral, social, and physical changes in their husbands in the early stage of dementia? (2) What are caregiving wives’ perceptions of personhood of their husband in the early stage of dementia? And, (3) What influences caregiving wives’ perception of the personhood of their partner in the early stage of dementia? The participants were recruited through the Alzheimer’s Association of Connecticut. A 3-phase interview process was employed in this qualitative, interpretative phenomenological analysis study, so that caregivers could narrate their experiences in their own words. This interview process afforded the exploration of the participant’s experiences in the broader context of her life (1st and 2nd interviews) and invited the participant to reflect more deeply on the meaning of these experiences (3rd interview). Most wives felt that their husbands did not change in terms of personhood, despite the effects that dementia had on them by the early stages of the disease. The wives noticed the changes in their husbands’ behavior prior to the husbands being diagnosed with dementia but did not seek support until these issues started affecting the husbands’ daily functioning. Following the diagnosis, the wives worked to make adjustments to their daily lives and utilized social and medical support to provide the necessary care for their husbands. The findings suggest that the wives relied on their prior knowledge and exposure to dementia, as well as religion, friends, family, and supportive professionals to help them navigate and make meaning of their experiences of having a husband experiencing the early stages of dementia