By Catherine Van Son
The number of people living with dementia is growing exponentially. The effects of this neurocognitive disorder (the majority are the Alzheimer’s type) are not confined to the numbers affected by the condition. The impact of dementia on the lives of persons living with dementia (PLWD), their caregivers and care professionals must be explored. It is important to reflect on the relationship between society and dementia as it has an overwhelming effect on the individual and those around them. From the moment a person is suspected to be suffering from dementia, their social interactions with others progressively changes.
The occurrence of dementia as a news item has led to a growing influence on the social depictions of old age as the general population learns more about its impact on one’s life. The various contexts of dementia are redefining what aging and old age mean in society with life expectancy increases and health improvements at later ages shifting our understanding of normal aging. Unfortunately, mass media creates fear related to the loss of cognitive and physical ability over time and focuses on any and all measures to keep aging at bay. Social gerontology has been discussing and debating changes in aging however, these issues have not been addressed sufficiently within other disciplines such as medical sociology.
Forgetting Items: The Social Experience of Alzheimer’s Disease (Indiana University Press, 2019) written by Baptiste Brossard considers the social aspect of dementia by considering how symptoms are expressed by the individual and understood/interpreted by those close to them. The author’s goal is to help us understand common experiences associated with dementia and ways to interpret those experiences through the lens of sociology.
I make this point as I am a nurse gerontologist and do not have a sociology background. However, although nursing is rooted in the biomedical perspective, our work incorporates health related topics of the entire person, their family and society. Nursing is the protection, promotion, and optimization of health and abilities, prevention of illness and injury, the diagnosis and treatment of human response to illness and treatments, and advocacy in the care of individuals, families, communities, and populations in all settings. To accomplish this we need to know: does the person we are working with have access and transportation to a drug store to obtain their medications? What is a community’s beliefs about the cause of dementia?, what social supports exist for the family caregiver? And, is it ethical to tell a PLWD that their husband (deceased for many years) will be home for dinner soon, rather than reminding her he is dead and she relives those emotions once again? Each of these questions require an integrated approach in the nursing profession.
In Forgetting Items, Brossard writes about the social interactions between the PLWD and others as it changes over time due to the progression of the disease. The chapters focus on four interactional processes he states shapes the experience of dementia. The first chapter addresses the observation that dementia threatens daily activities (i.e., medication management, turning off the stove), and leads to the establishment of a support network to assure the individual’s safety. It is the recurring missteps in daily behavior that often lead (the individual or their significant other) to seek medical attention. Dr. Brossard describes this process as a “reorganization of activities”. In the beginning, the reorganization of activities focuses on safety issues and efforts made by the individual to save face within their social groups. These progressive changes in reorganizing activities occurs while the diagnosis of Alzheimer’s has not yet been accepted.
The second chapter focuses on the caregiver and the professional’s interpretation of individual with dementia behaviors and language as the illness erodes one’s ‘credibility’. Over time the PLWD’s recollection and description of events are interpreted as flawed. While this process can take years, inaccuracies lead to the loss of credibility in the eyes of those around them. Brossard explains that the rate of the PLWD being discredited is often proportional to their cultural/social and gender capital. He describes examples of patients who have high levels of education, social standing or being male appear to keep their capital longer and maintain their credibility longer. However, all PLWD still have agency and the understanding of their actions is our responsibility. Their agency is often driven by basic and/or unmet human needs. For example, when they continuously repeat, “I want to go home”, they are not seeking the house they lived in, but the emotional connections attributed to home; the familiar, being cared for and feeling safe. What they want is a warm and quiet environment, caring eye contact, and comforting speech and touch. Being a human being should be capital enough for them to maintain credibility in their environment.
The third chapter describes the development of deference as a mechanism of preserving the PLWD’s dignity, through social engagement. Deference is the effort to deinstitutionalize nursing homes and create home like more humane environments though the provision of person-centered care. However, the author describes how the institutionalization of those with dementia and the routinizing deference tends to remove the ability of caregivers to interact with their residents/patients with genuine humanity. He describes how this organizational deference has created a class of individuals (PLWD) by standardizing “treating them with dignity and respect”, which ignores their individual agency.
The last chapter illustrates the efforts made by those around PLWD to interpret what the person’s communication might mean if the individual did not have cognitive deficits. The author labels the reconstruction of a memory to interact positively with PLWD as ‘reconstituting’. It is the effort made by caregivers and institutions to support the memories that are part of the person’s lived experience. Some examples of this include giving a woman a baby doll to care for, believing this will comfort a woman who had several children. Or, this might mean decorating facility interiors to support an environment from earlier decades in their life. In nursing, this is referred to as ‘agenda behavior’ and the efforts used for caregivers to step into the PLWD life as they see it.
As a nurse I found it interesting to look at Alzheimer’s using a sociological lens. The areas discussed and labeled by the author were familiar to me, just interpreted differently. Many nuances of dementia are a direct result of its slow progression and long duration. Thus, the impact of this disease requires thoughtful reflection on the experience of the individual with the disease and those around them.
More than half of all residents in long-term care have dementia; and is one of the most feared aspect of aging. While medicine still searches for a cure, the pharmaceutical industry continues to develop and market various ‘anti-dementia’ drugs that continue to have a high failure rate. Currently efforts have focused more on pre-clinical risk assessments and methods aimed at slowing the progression of dementia. Thus, other areas of scholarship are needed to contribute to our understanding of the social and cultural aspects of dementia. Graduate students and academics interested in the sociological perspective of dementia will find this book an interesting read. Other disciplines would also discover that this book is a thoughtful addition to their understanding of dementia.
Dr. Baptiste Brossard received his Ph.D. in sociology and is a French sociologist and Lecturer in the College of Arts and Social Sciences at Australian National University.
About the Author
Catherine Van Son, PhD, RN, ANEF, FGSA is an Associate Professor/ Nurse Gerontologist at Washington State University College of Nursing. Her research focuses in part on the role of culture in understanding and managing health behaviors in different populations. She consults on qualitative methodologies and issues related to older adults. She has practiced as a nurse for more than 30 years with the goal of improving health outcomes for all older adults. Her collaborations span local, national, and international arenas. Her professional twitter account is https://twitter.com/geronurse_notes