Alzheimer’s Disease: Stigma and Family Support

Alzheimer’s disease (AD) is a widespread disease throughout the world. AD is the most common cause of dementia in old and senile age (Coimbra et al., 2018). The prevalence of the disease increases as the age group increases. In developed countries, AD is viewed in the future as a major health problem. This is explained both by the steadily growing number of people at risk of developing the disease and the duration of the disease, and the severe disability of patients, which in some cases requires lifelong hospitalization (Cheng et al., 2020). This disease creates both huge financial hardships and significant social and psychological problems for the family and society. As AD develops, neurons gradually die in various areas of the brain.

The Impact of Stigma on Health Outcomes

The steady increase in the number of patients with dementia among the population of older age groups inevitably draws attention to the ethical aspects of doctors and clinical psychologists’ work with this contingent of patients and people from their immediate environment. The ethical aspects of diagnosing and disclosing dementia are closely related to stigma (Stites et al., 2018). As a result of ignorance about the nature of AD, stigma is widespread in most countries and affects both society at large and the patients themselves, their families, and even health and social care workers. Failure to understand the nature of the disease leads to the fear of developing dementia (Stites et al., 2018). The notion that nothing can be done leads to feelings of hopelessness that can affect people’s well-being.

Stigma and discrimination spread to caring family members and cause social avoidance. This fear of dementia is known to be second only to the fear of cancer (Stites et al., 2018). The stigma of AD is a constant subject of research in the International Alzheimer’s Association, including the study of criticism from patients and caregivers, attempts to address various aspects of stigma, and the search for ways to overcome stigma (Herrmann et al., 2019). Stigma is seen as one of the main barriers to understanding the disease, seeking care, receiving a diagnosis, and accessing services. This closes the path of open discussion of the disease and makes doctors think they have nothing to offer.

One of the main problems of stigmatization in health outcomes is underdiagnosis and failure to receive appropriate care afterward. First of all, this concerns the degree of completeness of information on AD development risk (Herrmann et al., 2019). It is argued that the answer must be true, but the problem is convincing the person to take the test and repeat it later. There are fears that the patient, upon learning about the possibility of AD, may take their own life. In addition, stigmatization of the mentally ill and the fear of being labeled as “feeble-minded,” older people often hide their forgetfulness and other changes, which are usually the first symptoms of illness, and, as a result, do not receive even this minimal help.

These risks are a consequence of self-stigmatization: the process of internalizing the social stigma prevailing in society by the mentally ill, to the extent that the individual incorporates the perception of himself by those around him into their “self” system (Herrmann et al., 2019). This leads to the fact that the individual begins to perceive himself accordingly and changes their behavior up to marginalization and social isolation.

Other Barriers

Many ethical problems arise not only for the doctor and psychologist but also for family members and caregivers. These problems lead to many barriers to the treatment of individuals diagnosed with Alzheimer’s disease. Severe forms of diseases in the event of an unfavorable prognosis pose to the doctor the problem of communicating the patient’s diagnosis and life expectancy. Most specialists tend to give the patient truthful information. Treatment of diseases in old age, in some cases, only leads to lengthening life expectancy but not improving its quality (Egan et al., 2018). Ethical issues arise throughout the life of a person with dementia, starting from the moment the diagnosis of dementia is made. Since then, clinicians, patients, family members, carers, and researchers have been faced with many ethical questions that vary depending on the disease stage and the severity of the manifestations. Ethical issues are dealt with in the order they arise in the course of the disease.

In the early stages, it is a question of the boundaries of recognition of patient independence. This includes referral for more specific diagnostic testing, psychiatrist actions when patients require genetic testing, and discussion boundaries with the patient about severe outcomes when fixing pre-given orders. In the middle and late stages of the disease, the central conflict arises between maximizing patient autonomy and paternalistic attempts to protect them. This includes behavior and actions against patients’ will, the communication of information that can be intolerable, especially in the later stages, when it is necessary to lie to avoid psychological stress (Elif et al., 2017). As death approaches, the problem of the limits of life support arises. The main tendency to maintain independence most fully and as long as possible determines the ethical justification of the intervention at one time and becomes contradictory at another when the condition worsens. The psychiatrist then uses their own ethical concepts (Schweda et al., 2018). When confronted with these or other ethical issues, it is essential to understand that as the disease progresses, the relationship with family becomes more important for patients, not losing their cognitive abilities.

Family Caregivers’ Problems and Adjustments

The medical, social, economic, and emotional problems associated with dementia bear the most significant burden on patients’ relatives. The fact of a mental illness, especially such a severe one, radically changes the patient’s family’s quality of life. It has been found that the distress that occurs in relatives caring for patients with dementia, in most cases, is associated with the burden of daily care of the patient (Elif et al., 2017). After all, this requires daily physical and psycho-emotional stress, financial costs, is reflected in the social side of life, and also burdens psychologically. The family faces such problems as progressive memory loss of the patient, loss of orientation in time and space, problems with sleep, inappropriate behavior at home, and relatives.

It is known that a severe mental illness of one of the family members imposes restrictions on the organization of life, requires a particular regime, a change in the habitual way of life of all family members, a redistribution of responsibilities, a revision of plans for the future, and also forces one to abandon some habits. A chronic experience of uncertainty, helplessness, and fear are formed (Elif et al., 2017). Caring for seriously ill relatives is a problematic exhausting life situation and a constant reminder of the possibility of the caregiver’s own death.

In many countries, special psychoeducational and psychotherapeutic programs are being developed for caring for patients with Alzheimer’s disease. There are also practical training programs for guardians (Cheng et al., 2020). However, the question arises about assessing the effectiveness of these activities. Traditional methods of psychotherapy have proven to be effective. For example, cognitive-behavioral family therapy reduces caregivers’ burden and improves patient behavior (Cheng et al., 2020). Cognitive-behavioral group therapy of caregivers reduces the severity of symptoms of depression and anxiety and postpones the patient’s institutionalization.

National Policy

Currently, the first National Plan to Address Alzheimer’s Disease is being implemented: with government support, scientists will have to develop a way to effectively treat and prevent this deadly neurological disease by 2025 (ASPE, 2020). The National Plan for Alzheimer’s Disease provides for both medical and social aspects of the fight against acquired dementia, which typically affects people over 65 years of age. One of the plan’s main objectives is to improve the efficiency of timely diagnosis of the disease. As discussed above, stigmatization of the disease leads to underdiagnosis.

In addition to identifying symptoms, diagnosis gives the patient’s family a perspective, and early diagnosis can be of great benefit if a way is found to slow the progression of dementia. The plan also includes improving care for the patient’s family members and, in particular, educating them about the available treatments. According to David Hoffman of the New York State Department of Health, education programs for relatives are much cheaper than home health care. For example, the New York City Dementia Care Training Program has shown that such training allows relatives to provide full home care for patients.


Policies for people diagnosed with Alzheimer’s and their caregivers should reflect structured categories of ethical concerns. Among them: moral, cultural, and socio-political issues, respect for personality and recognition of independence, and the veracity of diagnostic information. In addition, the imperative for the role of biomarkers in confirmation of diagnosis, early diagnosis, and risk assessment in healthy individuals must be recognized (Cheignon et al., 2018). However, significant further work is needed to validate criteria using biomarkers and standardize biomarker analyses before being used in inpatient care services.

At the same time, an urgent task is to search for effective pharmacological intervention methods that can stop or significantly slow down the incipient development of the neurodegenerative process and thereby prevent or postpone the formation of dementia for a number of years. Without solving this particular problem, the “super-early” diagnosis of Alzheimer’s can even cause the patient significant harm, leading to chronic stress and depression, which in itself is a risk factor for the development of AD (Burke et al., 2018). The problem of primary prevention of AD is just as topical, i.e., developing a system of measures aimed at counteracting potentially modifiable AD risk factors.

The main principle should be to support respect for persons with AD and recognize the responsibility for the diagnosed population of the general – family, society, and governments. Special attention is drawn to the provision of rest for carers taking into account the increase in the incidence of diseases and mortality.

Central to the ethical, social, economic, and psychological issues associated with Alzheimer’s is the sense of hopelessness associated with the incurable disease. Proceeding from this, the approach to the management of diagnosed patients should focus on the cultivation by specialists of a “culture of acceptance,” when what is still preserved in the patient’s psyche is positively assessed and not mourned for the lost.

Although Alzheimer’s patients are directly affected by the disease, their families and caregivers face the dire consequences of chronic stress and caring for the sick. While there is an emphasis on educating caregivers in existing strategies, the emphasis should be on helping them to alleviate psychological distress. This justifies the relevance of social support measures for relatives who care for elderly patients with dementia.


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