In defense of people with dementia: combat stigmas and prejudices

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

This article is designed to promote 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 respect.

Dementia: definition and prevalence

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

The most frequent 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 between the studies, the Alzheimer's Disease International (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 the estimates for 2050 show an increase equivalent to more than 131 million.

• Related article: "Types of dementia: forms of cognition loss"

Dementia and social perception

Global perception is uneven depending on the country or culture . Many of the conceptions associated with dementia have turned out 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 promoting their social exclusion and the concealment of 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 cases of dementia, and the lack of information and awareness, it is crucial to carry out a work by the whole society as a whole.

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

Words can adopt different connotations and the way in which news is communicated affects, to a greater or lesser extent, our perspectives and attitudes towards something or someone, especially when we do not have enough knowledge about the subject.

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

The problem is that some media have turned out to be excessively negative, focusing only on the most advanced stages of the disease, presenting dementia as a horrible and destructive disease in which identity vanishes and where nothing can be done to achieve quality of life, a factor that negatively affects the person and their environment creating despair and frustration.

This is one of the factors that dementia associations and organizations (day centers, hospitals, research centers, etc.) try to deal with. An example of this is the leading charity in the UK 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". At the same time, they propose that the media try to capture dementia in its entirety and with a neutral terminology disclosing personal stories of people with dementia and showing that it is possible to have quality of life carrying out various adaptations.

The importance of being informed

Another factor that usually 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 the lack of knowledge on how to handle 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.

In order to prevent this from happening, it is very important that the social environment (friends, relatives, etc.) are 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 can be affected in dementia (attention deficits, short-term memory impairments, etc.) will also allow us to be more understanding and able to adapt the environment to their needs.

It is clear that we can not avoid the symptoms, but We can act to improve their well-being by encouraging the use of daily diaries and 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 the prejudices and negative attitudes toward this collective , leads some people to keep the disease hidden due to various factors such as fear of being rejected or ignored, exposure to a different and infantilized treatment or to their underestimation as people.

The fact of not communicating the illness or of not attending the doctor to make an assessment until it is in a serious stage has a negative effect on the quality of life of these people, since it has been shown that an early diagnosis is beneficial to carry out as soon as possible the necessary measures and the search of the required services.

Developing sensitivity and empathy

Another repercussion of ignorance in the face of illness is the frequent occurrence of talk about the person and their illness with the caregiver while she is present and, in most of the time, to convey a negative message . This usually happens because of the false conception that the person with dementia will not understand the message, which is an attack on their dignity.

With the aim of increasing awareness and social awareness in the face of dementia, it is necessary to carry out the expansion of "Dementia-friendly Communities", creation of 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 end, I would like to stress the importance of accepting the person first, by whom and how , avoiding as far as possible the prejudices associated with the label "dementia".

It is clear that since it is a neurodegenerative disease, the functions will be gradually affected, but that is not the reason why we must directly condemn the person to disability and dependency, devaluing their current capacities.

Depending on the stage of the disease, various adaptations can be carried out in the environment and offer support in order to increase their autonomy in the activities of daily life and work environment. 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 life and to socialize like any other.

And finally, we must never forget that, despite the fact that the disease progresses and affects the person greatly, their identity and essence is still there. Dementia does not completely destroy the person, in any case, it is society and its ignorance that underestimates and depersonalizes it.

• Related article: "The 10 most frequent 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 // 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.