In defense of people with dementia: fighting stigma and prejudice

The social perception of this disease leads to stigmatization and isolation.

What kind of thoughts come to mind when we hear the word "dementia"? And how do they affect our attitudes towards dementia?

This article is designed to promote awareness of the current stigma associated with people living with dementia and, consequently, of the urgent need for cross-cultural social change based on inclusion and respect.

Dementia: definition and prevalence

Dementia, renamed as "major neurocognitive disorder" by the DSM-5 diagnostic manual (2013), is defined by the DSM-IV-TR (2000) as. an acquired condition characterized by impairments in memory and at least one other cognitive area (praxias, language, language functions, cognitive functions, etc.). (praxias, language, executive functions, etc.). Such impairments cause significant limitations in social and/or occupational functioning and represent a deterioration with respect to previous capacity.

The most common form of dementia is Alzheimer's disease, and the most important risk factor is age with a prevalence that doubles every five years after 65 years, however, there is also a (smaller) percentage of people who acquire dementia early (Batsch & Mittelman, 2012).

Despite the difficulty in establishing a worldwide prevalence of dementia, mainly due to the lack of methodological uniformity among studies, the Alzheimer's Disease International (ADI) federation together with the World Health Organization have indicated in their most recent report (2016) that approximately 47 million people are living with dementia worldwide and estimates for 2050 show an increase equaling more than 131 million.

Dementia and social perception

Worldwide perception is uneven depending on country or culture.. Much of the conceptions associated with dementia have proven to be erroneous and include considering it as a normal part of aging, as something metaphysical linked to the supernatural, as a consequence of bad karma or as a disease that completely destroys the person (Batsch & Mittelman, 2012).

Such myths stigmatize the collective by fostering their social exclusion and the concealment of their disease.

Combating stigma: the need for social change

Given the increase in life expectancy, which results in an increase in the prevalence of dementia cases, and the lack of information and awareness, it is crucial to carry out work by society as a whole.

Such actions may seem small at first glance, but they are what will ultimately lead us to inclusion.. Let's look at some of them.

Words and their connotations

Words can take on various connotations and the way in which news is communicated conditions, to a greater or lesser extent, our perspectives and attitudes towards something or someone, especially when we do not have sufficient knowledge on the subject.

Dementia is a neurodegenerative disease in which quality of life is affected. However, this does not mean that all of these people have dementia, this does not mean that all these people cease to be who they are, that they have to give up their lives immediately.They have to give up their jobs immediately after diagnosis, or that they cannot enjoy certain activities in the same way as healthy people do.

The problem lies in the fact that some media have been exaggeratedly negative, focusing only on the most advanced stages of the disease, presenting dementia as a horrible and destructive disease in which identity fades and nothing can be done to achieve quality of life, a factor that has a negative impact on the person himself and his environment, creating hopelessness and frustration.

This is one of the factors that dementia associations and organizations (day centers, hospitals, research centers, etc.) try to deal with. One example is the leading UK charity Alzheimer's Society.

Alzheimer's Society has a great team, researchers and volunteers who collaborate and offer support in different projects and activities with the aim of helping people with dementia to "live" with the disease instead of "suffering" from it. In turn, they propose that the media try to portray dementia in its entirety and with neutral terminology, presenting personal stories of people with dementia and demonstrating that it is possible to have quality of life by making various adaptations.

The importance of being informed

Another factor that often leads to exclusion is the lack of information.. From my experience in the field of psychology and dementia I have observed that, due to the affectations produced by the disease, part of the environment of the person with dementia is distanced, and in most cases it seems to be due to lack of knowledge about how to handle the situation. This fact causes greater isolation of the person and less social contact, which turns out to be an aggravating factor in the face of deterioration.

To try to prevent this from happening, it is very important that the social environment (friends, relatives, etc.) be informed about the disease, the symptoms that may appear and the problem-solving strategies that can be used depending on the context.

Having the necessary knowledge about the abilities that may be affected in dementia (attention deficits, short-term memory impairment, etc.) will also allow us to be more understanding and able to adapt the environment to their needs.

It is clear that we cannot avoid the symptoms, but we can act to improve their well-being. we can act to improve their wellbeing by encouraging the use of diaries and daily remindersWe can also provide them with more time to respond, or try to avoid auditory interference during conversations, to cite a few examples.

Hiding the disease

The lack of social awareness, together with prejudices and negative attitudes towards this group, leads some people to keep the disease hidden.The lack of social awareness, together with prejudice and negative attitudes towards this group, leads some people to keep the disease hidden due to various factors such as fear of being rejected or ignored, exposure to different and infantilized treatment or their underestimation as individuals.

Failure to report the disease or to go to the doctor for an assessment until it is at a severe stage has a negative impact on the quality of life of these people, as it has been shown that early diagnosis is beneficial to carry out the necessary measures as soon as possible and to seek the required services.

Developing sensitivity and empathy

Another repercussion of ignorance of the disease is the frequent fact that the person and his or her disease are often talking about the person and his or her illness with the caregiver while he or she is present and, more often than not, to convey a negative message.. This usually occurs because of the false conception that the person with dementia will not understand the message, which is an attack on his dignity.

In order to increase awareness and social knowledge about dementia, it is necessary to carry out the expansion of "Dementia-friendly Communities", creating information campaigns, conferences, projects, etc., that comply with policies of equality, diversity and inclusion and, in turn, offer support to both the person and their caregivers.

Beyond the "dementia" label

To conclude, I would like to stress the importance of first accepting the person for who and how they areas much as possible, avoiding as far as possible the prejudices associated with the label "dementia".

It is clear that being a neurodegenerative disease, functions will be gradually affected, but we should not condemn the person directly to disability and dependence by devaluing their current capabilities.

Depending on the stage of the disease, various adaptations can be made to the environment and support can be offered in order to increase their autonomy in activities of daily living and work. It should also be noted that these are people who can make decisions, to a greater or lesser extent, and that they have the right to participate in activities of daily living and to socialize like any other person.

And finally, we must never forget that, although the disease progresses and affects the person to a great extent, his or her identity and essence is still there. Dementia does not completely destroy the person; if anything, it is society and its ignorance that undervalues and depersonalizes him or her.

Bibliographical references:

• American Psychiatric Association (2000). DSM-IV-TR: Diagnostic and Statistical Manual of Mental Disorders, Text Revision. Washington, DC: American Psychiatric Association.
• American Psychiatric Association (2013). DSM-V: Diagnostic and Statistical Manual of Mental Disorders–5. Washington, DC: American Psychiatric Association.
• Batsch, N. L., & Mittelman, M. S. (2012). World Alzheimer Report 2012. Overcoming the stigma of dementia. London: Alzheimer's Disease International http://www. alz.org/documents_custom/world_report_2012_final. pdf.
• Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016). World Alzheimer report 2016: improving healthcare for people living with dementia: coverage, quality and costs now and in the future. London: Alzheimer’s Disease International.