Stigmas and prejudices against people with dementia

What kinds of thoughts arise when we hear the word "dementia"? And: in what way do these affect our attitudes towards this group?

This article is designed to raise awareness of the current stigma associated with people living with dementia and, consequently, of the urgent need to carry out an intercultural social change based on inclusion and I respect.

Dementia: definition and prevalence

Dementia, renamed "major neurocognitive disorder" by the diagnostic manual DSM-5 (2013), is defined by DSM-IV-TR (2000) as an acquired condition characterized by impairments in memory and at least one other cognitive area (praxis, language, executive functions, etc.). Said 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 (lower) percentage of people who acquire dementia early (Batsch & Mittelman, 2012).

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

• Related article: "Types of dementias: forms of loss of cognition”

Dementia and social perception

The perception worldwide is uneven depending on the country or culture. Much of the conceptions associated with dementia have turned out to be wrong 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 group by promoting their social exclusion and hiding their disease.

Fighting stigma: the need for social change

Taking into account the increase in life expectancy, which has an impact on an increase in the prevalence of dementia cases, and the lack of information and awareness, it is crucial to carry out work by the whole of society in its set.

These actions at first glance may seem small, but they are the ones that will eventually lead us towards inclusion.. Let's see some of them.

The words and their connotations

The words can adopt different connotations and the way in which the news is communicated determines, to a greater or lesser extent, our perspectives and attitudes towards something or someone, especially when we do not have sufficient knowledge about it theme.

Dementia is a neurodegenerative disease in which the quality of life is affected. However, This does not mean that all these people stop being who they are, that they have to immediately quit their jobs after the diagnosis, or that they cannot enjoy certain activities as healthy people do.

The problem is that some media outlets have turned out to be overly negative, focusing only on more advanced stages of the disease, presenting dementia as a horrible and destructive disease in which identity is fades and in which nothing can be done to achieve quality of life, a factor that negatively affects 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 such example is the UK's leading 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 "Suffer it." In turn, they propose that the media try to capture dementia in its entirety and with a neutral terminology giving know personal stories of people with dementia and demonstrating that it is possible to have quality of life by carrying out 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 dementias I have been able to observe that, due to the affectations produced by the disease, part from the environment of the person with dementia is distanced, and in most cases it seems to be due to the lack of knowledge about how to manage the situation. This fact causes a 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, family, etc.) are informed about the disease, symptoms that may appear, and problem-solving strategies they can use depending on the context.

Have the necessary knowledge about the capacities that can be affected in dementia (attention deficits, affectations in short memory term, etc.) will also allow us to be more understanding and able to adapt the environment to your needs.

It is clear that we cannot avoid the symptoms, but Yes, we can act to improve your well-being by promoting the use of diaries and daily reminders, giving them more time to respond, or trying to avoid auditory interference during conversations, to name a few examples.

Hiding the disease

The lack of social conscience, together with prejudices 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, being exposed to different and childish treatment or being underestimated as people.

Failure to report the disease or not attending the doctor for an assessment until it is in a serious stage has a negative impact on quality of life of these people, since it has been shown that an early diagnosis is beneficial to carry out the necessary measures as soon as possible and the search for services required.

Developing sensitivity and empathy

Another repercussion of ignorance about the disease is the frequent fact of talking about the person and her illness with the caregiver while she is present and, most of the time, to convey a negative message. This normally occurs due to the false conception that the person with dementia will not understand the message, which is an attack on their dignity.

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

Beyond the label "dementia"

To end, I would like to emphasize the importance of first accepting the person for who and how they are, avoiding as far as possible the prejudices associated with the label “dementia”.

It is clear that being a neurodegenerative disease the functions will be affected gradually, but not by We must directly condemn the person to incapacity and dependence on it, devaluing their capacities current.

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

And finally, we must never forget that, even though the disease progresses and affects the person to a great extent, the identity and essence of it is still there. Dementia does not completely destroy the person, in any case, it is society and its ignorance that undervalues ​​and depersonalizes it.

• Related article: "The 10 most common neurological disorders”

Bibliographic 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.