Remembering Home: Rediscovering the Self in Dementia

Caring for individuals with dementia is a formidable task. Preserving their health and basic functions is enormously demanding physically and emotionally for both families and residential care staff. To meet these demands, most long-term care facilities use the medical model of care and promote the social roles of “old” and “sick.” Consequently, this deprives the residents of their familiar and meaningful context and offers few links with their personal or cultural past.

Remembering Home: Rediscovering the Self in Dementia makes a cogent argument for refocusing the care of the individual with dementia on the individual’s “self.” Central to this position is that the experience of the self is created through a dynamic, yet selective, learning process. Experienced events are not stored in memory directly from perceptions, and their storage in memory is not homogeneous. Instead, they are conceived through an interpretive process and are stored in memory through selective mechanisms so that certain memories can be retrieved more easily than others. For the most part, this is an unconscious process in which people are constantly forming their self-identities. Conscious reflection on past experience can be a creative act to construct the pieces of the past and give them additional content, context, and insights.

During dementia, self-identity is threatened by losses of physical and cognitive abilities and often relocation from a place to which one was attached. Beyond the internal changes, the process is affected by the social perception of what is acceptable or not. The ways in which individuals in the social circle of a demented person accept, admonish, or disparage a socially unacceptable behavior influence the person’s process of self-re-creation. Demented persons try to hold on to the identity they have known for years. However, this task becomes increasingly more difficult, and help needs to come from the environment. The question is, “What is the best way for people around the demented patient to help?”

Remembering Home: Rediscovering the Self in Dementia argues that reconstructing emotionally charged experiences can be an effective way of helping a person with dementia to recapture meaningful aspects of the person’s self. Emotional experiences result in the most vivid autobiographical memories, likely to be recalled more often and with greater clarity and detail than neutral events (1) . The resilience of emotional processes may be linked to evolution. Panksepp (2) suggested that the neural systems serving consciousness are layered. Affective consciousness is the most basic form of consciousness mediated by the periaqueductal gray matter-hypothalamic-limbic regions and shared by both humans and lower mammals. Unlike cognitive variants of consciousness, which rely on thalamo-neocortical processing, affective consciousness is instantiated almost exclusively in convergence zones of paramedian brain areas interconnected with the periaqueductal gray. Thus, affective states do not require neocortical readout and constitute the basic core sense of the self in both humans and lower mammals. This emotional core sense of self is the most primitive form of consciousness and provides an affective background on which cognitive variants of consciousness (i.e., thoughts and thoughts about thoughts) are built. The evolutionary layering of consciousness makes neural sense of the distinction between reason and passions, although the processes are thoroughly blended in the intact brain. Archaic neural structures are resilient and are less affected than neocortical structures in the early and middle phases of Alzheimer’s disease and other cortical dementias.

In this book, Chaudhury suggests that individual or small group sessions using reminiscence of early emotional experiences can help the person with dementia to access aspects of the self and enable families and facility staff to understand the origins of the person’s abnormal behavior.

Understanding of the self that underlies the difficult behaviors of persons with dementia can provide the platform on which to build and maintain relationships with these individuals. Most emotional experiences occur in early life. For persons with dementia, reality reverts to the distant past. They experience themselves as being in early childhood or early adulthood and talk about family or friends from those times in their lives. Socialization of self is influenced not only by interactions with other people but also by relationships with physical settings that define and structure everyday life. Since home is so central to our lives, memories of home are the powerful means for sustaining the sense of self.

After qualitative analysis of interviews with 13 individuals in four care facilities in Wisconsin, Chaudhury offers concrete recommendations on how to develop home stories and use them to engage persons with dementia. The book is exceptionally well written and provides both an informed and compelling argument for selfhood affirming care and a practical guide on enriching the practices of residential care facilities.