Alzheimer’s and social inequalities

In her book, sociologist Aude Béliard offers an offbeat approach to the common vision – an intimate catastrophe – of Alzheimer’s disease. Unknown forty years ago, the term Alzheimer’s is now part of the common language of the French, due to the aging of the population and the social policies implemented since the 2000s. The researcher shows how this disease is constructed according to “social variations”, an enigmatic euphemism that gives the book its subtitle and which will be unraveled over the course of the three parts.

After a quick sociohistorical perspective on care for the elderly, the sociologist explains the operating methods of her survey conducted in a hospital context and then with families. While her approach is primarily sociological, in the wake of Goffman, Emerson and Messinger – she combines qualitative and quantitative approaches – she also mixes anthropology and ethnography with sociological study. Thus, Aude Béliard meticulously circumscribes the articulation between medical practices and family dynamics through an in-depth field survey, conducted from 2004 to 2008 in two hospital departments of the same establishment in a suburban town near Paris, one devoted to memory disorders, the other to geriatrics, and finally in a private retirement home, not geographically located.

Facing the medical profession

The book follows the researcher’s journey as she begins her investigation with two medical teams, neurologists and geriatricians, whose approaches diverge in establishing a diagnosis of Alzheimer’s disease. Neurologists firmly define “the limits of ‘normal’ aging” (p. 34), because they consult people who are mildly affected, while geriatricians, who are more cautious in making a pathological diagnosis, see patients who are already seriously “deteriorated”. However, the medical approaches converge when it comes to communicating with the patient and their entourage: all professionals use the word “memory” to evoke cognitive disorders. However, this term has strong connotations for both parties. For the medical profession, the word memory is strategic: simple, it allows awareness to be raised for rapid identification of the disease. For patients, it is “acceptable”, because it is close to common experience. Noting that the word “memory” is more commonly used by executives and middle-class professionals, the author argues that “the contemporary Western construction of Alzheimer’s disease is particularly in affinity with the conceptions of health of members of the middle and upper classes” (p. 55).

These social differences are reflected in the use of diagnosis and its uses. Developing a diagnosis is complicated for doctors who are aware of the very academic way of assessing a patient’s cognitive functioning. This is why these doctors also assess the “sociocultural level”, the psychological state, the personality and the state of family relationships. The great difficulty is to “determine whether or not there is a “decline” compared to previous functioning” (p. 72). These doubts are especially true for patients from working-class backgrounds who are subject to a greater degree of diagnostic uncertainty.

In the long term of monitoring, doctors must identify the person in the entourage most able to become a “carer”, whom they will support and train by transmitting “the right ways of doing things” (p. 96). The caregiver becomes the “authorized relative”, thus legitimized within the family as a decision-maker. But the monitoring of this degenerative pathology can be the subject of divergent assessments, or even disagreements between medical and family points of view. Doctors describe as “families in crisis” or “in denial” those, often from working-class backgrounds, who do not agree to “give up” part of the care, while more inclined, by social habit, to delegate the care of their sick relative, “families from the upper classes often have conceptions of support that are more in line with medical expectations” (p. 137). The future of patients is played out in the relationships established with doctors, who prescribe the “right decisions” to make, but also in intra-family relationships.

Patients and then… patients

The search for a diagnosis is marked by social inequalities: the middle and upper classes easily adopt a preventive approach. Personal involvement affects people with high intragenerational social mobility, worried about their “memory, an essential faculty for certain relational skills valued in these social categories” (p. 160). Gender effects also appear with the overrepresentation of women in spontaneous consultation, in an approach that is either “wrongly anticipatory” or late and which, very often in the latter case, reveals psychiatric problems. Women undertake steps that are out of step with medical expectations, while men consult at the right time. However, this “at first glance homogeneous” divide must be qualified; more than the class distinction, it is the trajectory of social mobility that matters in “cognitive insecurity”, while for women with few qualifications the challenge would be to rule out a psychiatric diagnosis through neurological means.

Consulting for a loved one requires having noted their disorders and thinking about their support. The “personalized judgments of abnormality” that family members make about a supposedly sick parent are based on normative expectations based on gender, social situation and family configurations. The salient point of this investigation period highlights the particularly late diagnosis of women for three reasons: a lower importance of intellectual expectations towards them, a lower social status and “the presence of a spouse who leaves little room for outside interventions” (p. 204). The sociologist does not assign an individual a role determined by their social class, she shows the complexity and fluidity of positions: if some families deal with professionals, others refuse them.

Questions from families or families in question

A long-term ordeal for families, Alzheimer’s disease affects relationships between individuals within a couple, siblings or between generations. The researcher also makes the voices of families heard through two case studies that open the last three chapters. This judicious choice makes family upheavals sensitive and allows us to grasp painful journeys of support in times of high tension and divergent questions. Indeed, within a family, the circulation of the diagnosis or not, the causes of the disease, the appropriate reactions or not and finally the medical prescriptions are often problems.

The words, doubts, and reproaches heard give us an understanding of the crisis that strains and can reconfigure family relationships. For example, for Suzanne’s three children, in a retirement home because she is dependent on Alzheimer’s disease, accepting it or not gives rise to mutual accusations: “My sister, it’s a denial of the disease” (p. 258), says Rémi, the youngest brother, supported by his elder Jacques against their sister Liliane. The latter believes, for her part, that her two brothers, geographically close to the mother, “reacted very late” and “took a long time to “accept the disease” (p. 263). The coincidence of the reproaches insinuates a disqualification of the other members of the family in a defense strategy against the supposed criticism of the medical profession.

Throughout the analysis, Aude Béliard shows that the power relations structuring families according to social belonging and gender are often reinforced by contacts with doctors. The latter tend to legitimize “legally related relatives” with whom they communicate most easily. The case of Cristina, whose children fear for her safety, will be treated according to the involvement of the daughter who is the most cooperative with the doctors. Thierry, the son, relying completely on their external arbitration, gradually gives way to his sister Myriam. The latter, more than on a security argument to which the medical profession does not necessarily subscribe, by appropriating a psychiatrist’s remark, manages to have her own decision accepted: Cristina’s entry into a retirement home when, according to the professionals, home care could have been considered. “She (Cristina) saw a psychiatrist who told us that she was of course hallucinating, but that all that was… how did he bring that out? That an elderly person, when she is alone at home, especially at night, she remembers everything she experienced in her youth. So she remembers things so strongly that she sees them.” (p. 295) This decision to institutionalize Cristina reinforced “pre-existing power relations within those around her,” which often happens, notes the sociologist, when the situation is urgent.

Sometimes the speeches of specialists, because of their ambivalence between anticipation and preservation for the monitoring of patients, can be reinvested in “multiple and possibly contradictory uses”. It happens in fact that a relative interprets the medical prescription in a personal way in order to reinforce his or her point of view in front of the family. This is the case for Blanche, whose two sons, François and Henri, disagree on the decisions to be made. François, pushed by his wife Corinne, thinks that placement is necessary while his brother Henri refuses, explaining: “Because I am certain – but that is my opinion – that she does not want it, first of all. Secondly, I am sure that placement will make her fall” (p. 305). Although unemployed and without any particular relationship with the medical profession, unlike Corinne, Henri who “asserted himself as the main caregiver” (p. 305), won the decision in the disagreement on monitoring. The son who was most emotionally and temporally involved, even though he did not play a key role in the first medical steps taken for Blanche and even though he had to lead discussions with the doctors alone, Henri asserted himself as the first decision-maker, thus opposing his sister-in-law. The ongoing family conflict that was already dormant “would more often be based on significant social differences” (p. 317). Supporting Alzheimer’s patients can reveal family tensions made visible by the crisis or, at the time of decision-making, undo the ties of a family that had been peaceful until then; this break-up is often followed by reconciliation.

It is regrettable that the issue of the role of the general practitioner and territorial access to care, brought to the forefront by the “yellow vests” – the survey is being conducted on the outskirts of Paris – has been left aside for a disease whose management is known to be largely territorialized in its most advanced manifestations. But that would probably be the subject of another study! Despite this remark, it is certain that Aude Béliard’s survey helps to understand both the work of doctors and the upheavals of families in the event of Alzheimer’s disease within them. By examining the interactions between professionals and families, the researcher allows us to grasp the social construction of Alzheimer’s disease through the difficulties of each. And this is the immense merit of this book, which is highly recommended for future professionals in the field. priest and careIn the context of a “old age and autonomy” law, expected for the end of 2019, this work is aimed at a wide audience thanks to its clear writing and the reflections it provokes for each person on the experience of aging and its representations.