Don’t forget the person behind Alzheimer’s Disease
A few years ago, my family and I found out that my dad had Alzheimer’s Disease (AD). After he was diagnosed with a mild cognitive impairment in 2015, a precursor of AD, we slowly started noticing more symptoms, including memory loss, word-finding problems, and an increased need for help with daily activities. Receiving the diagnosis AD presents patients and families with lots of psychological and social challenges. Many of the challenges persons with AD and their families face are the consequences of stigma. Once the diagnosis is made (or even considered), people seem to forget the person behind AD.
In his seminal work on ‘spoiled identities’, Erving Goffman (1963) defines stigma as “an attribute, behaviour or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one”. In the context of AD, stigma refers to the reactions of others to individuals living with the disease. These reactions, which can be overt or subtle, are based on pejorative and false beliefs about AD patients, and can lead to exclusion or discrimination. Although AD is ubiquitous, those who suffer from it remain hidden from society because of this.
According to a report from Alzheimer’s Disease International (2019), people have grown more aware of the existence of AD, but are still uninformed about its causes and manifestations. This has led to unfounded assumptions about the disease and its effects.
Some people may overestimate the symptoms of AD, even doctors. I remember an instance when my dad was in the hospital, and the doctors spoke to him in a very derogatory way, while at that point he was still aware of himself and his identity. Such experiences are very uncomfortable. By lumping all people with dementia in one and the same group with assumed characteristics, those who suffer from it are depersonalized and defined by their limitations. While some overestimate the symptoms of AD, others might try to deny or downplay the symptoms. There have been many instances when friends or acquaintances of my dad told us that he seemed alright. However, these people only saw my dad for short periods of time, and, in the first stages of the disease, persons with AD are often still able to make a good impression. Although people were probably trying to provide some comfort when they said it, they didn’t understand the impact of their words. Yet, they made my mom believe that she was seeing things that were not there, and that my dad did not actually suffer from AD.
While some friends and family may dismiss symptoms, others may withdraw contact completely. They avoid interaction because they do not know how to behave in front of a person with AD. Since people immediately form this image in their head of what a person with Alzheimer’s is like, patients and caregivers might be hesitant to tell others about the diagnosis. Stigma is even considered one of the main causes of the fact that less than half of all people with dementia are officially diagnosed (Prince, Bryce, & Ferri, 2011). When we realized that my dad had AD, we decided to not tell others until the symptoms were too obvious. This was a burden on us as caregivers, because we had to pretend everything was fine. In some families, the fear of stigma may prevent them to actually seek help (Corrigan, 2004).
These examples show how stigma impairs the quality of life of persons with AD and their caregivers by impeding with or cutting of meaningful social interactions. Luckily, there are at least four easy ways in which you can make a difference:
- Get familiar with the disease. Learn the facts, talk about it, and ask questions. A lot of the stigma is caused by misinformation or stereotypes, so fostering more informed attitudes is the first step to reduce stigma.
- Do not make assumptions. If you are not sure how to approach a person with AD, be honest. You can talk about it either with the caregiver or the patient. The disease affects each person differently, so there is no way to find out what kind of interaction works best if you do not try.
- Always treat persons with AD with respect and dignity. Feelings of those who suffer from it last much longer than their memory of the event that caused the emotion (Guzmán-Vélez, Feinstein, & Tranel, 2014). For example, the doctors that spoke to my dad with a demeaning tone had a lasting negative impact on him and my family.
- Be a friend. Social engagement is one of the most important predictors of life satisfaction and well-being (Vaillant, 2012). For people like my dad, there is no yesterday or tomorrow, there is only now: we should make sure that we make these moments as happy as possible.
AD forms one of the most urgent threats to global health in the twenty-first century. More and more individuals will be affected as life expectancy continues to rise. According to the World Health Organization, the number of people with dementia worldwide was 35.6 million in 2010, and is estimated to be 115 million by 2050 (Wortmann, 2012). AD accounts for 60% of all cases (Kalaria et al., 2008). Nowadays, it is only a matter of time before someone you love will be affected by this devastating disease. Stigma closes the door on those with AD; however, if awareness grows, patients will finally be seen for who they are as individuals rather than being viewed only in terms of their illness.
References
Alzheimer’s Disease International. (2019). World Alzheimer report 2019: Attitudes to dementia. London: Alzheimer’s Disease International. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf
Corrigan, P. (2004). How stigma interferes with mental health care. American Psychologist, 59, 614-25.
Goffman, E. (1963). Notes on the Management of Spoiled Identity. Englewood Cliffs, New Jersey: Prentice-Hall.
Guzmán-Vélez, E., Feinstein, J., & Tranel, D. (2014). Feelings without memory in Alzheimer disease. Cognitive and Behavioral Neurology: Official Journal of the Society for a Behavioral and Cognitive Neurology, 27, 117-29. doi:10.1097/WNN.0000000000000020
Kalaria, R. N., & Maestre, G. E., Arizaga, R., Friedland, R. P., Galasko, D., Hall, K., . . . Antuono, P. (2008). Alzheimer’s disease and vascular dementia in developing countries: prevalence, management, and risk factors. The Lancet Neurology, 7(9), 812-26. doi:10.1016/S1474-4422(08)70169-8
Prince, M., Bryce, R., & Ferri, C. World Alzheimer Report 2011: The benefits of early diagnosis and intervention. London: Alzheimer’s Disease International. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2011.pdf
Vaillant, G. (2012). Triumphs of Experience. The Men of the Harvard Grant Study. Cambridge: Harvard University Press.
Wortmann, M. (2012). Dementia: a global health priority – Highlights from an ADI and World Health Organization report. Alzheimer’s Research & Therapy 4(5), 1-3. doi:10.1186/alzrt143
Featured image from Flickr.com (all creative commons) by Kalvicio de las Nieves.
Marthe de Roo is a first-year Research Master student in the Lifespan Development & Socialization track at the University of Groningen. She has a background in American Studies and Sociology. Her current research interests include parental rearing practices, developmental pathways of conduct problem behavior, and Alzheimer’s disease.
