Caring for a partner with Alzheimer's disease: Intimacy, loss and the life that is possible

Abstract

In this article, a phenomenological study, we aim to contribute to a deeper understanding of caring for a partner with advancing memory loss. Our particular concern is to communicate the findings in evocative and empathic ways. Such an approach is based on a wish to complement the phenomenological rigor of Giorgi's ''scientific concern'' with a ''communicative concern.'' We draw attention to the aesthetic dimensions of phenomenological description to achieve both ''structure'' and ''texture'' in the way findings are communicated. The methodology is thus complemented by a further interpretive phase after presentation of each of six general structures, and characterized as 'embodied interpretation'. This discipline is based on Gendlin's experiential phenomenology and the practice of ''focusing.'' We suggest that by engaging with the kind of descriptions and interpretations offered, fellow carers, professionals, family and support groups could be better equipped to understand the issues discussed.

Couple Meaning-Making and Dementia: Challenges to the Deficit Model

“…Like the life partners mentioned in the Todres andGalvin (2006) research, Garand et al (2007) stumbled onto the persistence of wellbeing. In their study of 27 spousal partners where one member was affected by mild cognitive impairment, the authors intended to explore how the marital relationship changes in the early stages of dementia.…”

“…Studies exploring wellbeing in dementia are few and far between. Findings tend to be embedded in research on other topics, such as caregiving (Todres & Galvin, 2006), quality of marital relationship (Garand et al, 2007), or research on service-provision to older couples affected by chronic disease, including dementia (Carpenter & Mak, 2007).…”

“…These included learning to live with the partner's memory loss, to adjust to a different future than what they had expected, to care for the loved one, to adapt to emotional changes in the relationship and their consequences, and to advocate on the partner's behalf (Todres & Galvin, 2006). Their findings suggested that, over the course of the illness, changes occur in the emotional relationship between life-partner care partners, which can continue to support the couple despite the many challenges.…”

“…In their research on caregiving, Todres and Galvin (2006) used a descriptive phenomenological approach to provide a detailed description of six phenomena that had been identified as salient features of the Alzheimer's carers' experiences in previous research. These included learning to live with the partner's memory loss, to adjust to a different future than what they had expected, to care for the loved one, to adapt to emotional changes in the relationship and their consequences, and to advocate on the partner's behalf (Todres & Galvin, 2006).…”

“…There was an unintended consequence: Having discovered a solution to their problem together, the partners experienced a renewal of intimacy that provided them a sense of connection. This was recorded in the interview and observed by the researchers who made note of participants' affect (Todres & Galvin, 2006).…”