Standing up for people with dementia: we fight stigma and prejudice

What kind of thoughts come to us when we hear the word “dementia”? And: how does this affect our attitudes towards this group?

This article is designed to raise awareness of the current stigma associated with people living with dementia and, therefore, the urgent need to bring about intercultural social change based on inclusion and respect.

Dementia: definition and prevalence

Dementia, renamed “the greatest neurocognitive disorder” by the DSM-5 diagnostic manual (2013), is defined by the DSM-IV-TR (2000) as an acquired condition characterized by memory impairment and at least one other cognitive area (Practices, language, executive functions, etc.). These effects lead to significant limitations in social and / or professional functioning and represent a deterioration from previous capacity.

The most common form of dementia is Alzheimer’s disease, and the biggest risk factor is age with a prevalence that doubles every five years after 65, but there is also a (lower) percentage of people who contract dementia early (Batsch & Mittelman, 2012).

Despite the difficulty of establishing a global prevalence of dementia, mainly due to the lack of methodological uniformity between studies, the federation Alzheimer’s Disease International (ADI) and the World Health Organization indicated in its latest report (2016 ) that around 47 million people live with dementia worldwide and estimates for 2050 show an increase equivalent to over 131 million.

    Dementia and social perception

    The overall perception is uneven depending on the country or culture. Many of the views associated with dementia have been found to be wrong and include viewing it as a normal part of aging, as something metaphysical related to the supernatural, as a result of bad karma, or as a completely destructive disease for the person ( Batsch and Mittelman, 2012).

    Such myths stigmatize the group by encouraging their social exclusion and the cover-up of their illness.

    Tackling stigma: the need for social change

    In view of the increase in life expectancy, which translates into an increase in the prevalence of dementia cases, and the lack of information and awareness, it is essential to carry out the work of society in his outfit.

    These actions may seem small at first glance, but they are the ones that 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 information is communicated conditions, to a greater or lesser extent, our perspectives and attitudes towards something or someone, especially when we have no sufficient knowledge on the subject.

    Dementia is a neurodegenerative disease that affects the quality of life. however, that doesn’t mean all these people cease to be what they areThat they have to quit their job immediately after the diagnosis, or that they cannot enjoy certain activities as healthy people do.

    The problem is, some media has come out too negative by focusing only on the more advanced stages of the disease, portraying dementia as a horrific and destructive disease in which identity fades and nothing can be done. life, a factor that has a negative impact on the person and his environment, creating despair and frustration.

    This is one of the factors that dementia associations and organizations (day centers, hospitals, research centers, etc.) are trying to address. The UK Alzheimer’s Society’s main charity is one example.

    The Alzheimer Society has a large team of researchers, researchers and volunteers who collaborate and offer support on different projects and activities with the aim of helping people with dementia “live” with the disease instead of ” suffer it ”. In turn, they propose that the media try to capture dementia as a whole and with neutral terminology by revealing personal stories of people with dementia and showing that it is possible to have quality of life by performing 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 effects caused by the disease, part of the environment of the person with dementia is distant and, in the Most of the cases, seems to be the cause of the disease. lack of knowledge on how to handle the situation. Such a fact leads to greater isolation of the person and less social contact, which turns out to be an aggravating factor before the deterioration.

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

    Having the necessary knowledge about the abilities that can be affected in dementia (attention deficits, short-term memory disorders, 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, however yes we can take action to improve their well-being by encouraging the use of daily calendars and reminders, By giving them more time to respond or by trying to avoid hearing interference during conversations, to name a few examples.

    Hide the disease

    Lack of social awareness, as well as prejudices and negative attitudes towards this groupThis leads some people to keep the disease hidden for various factors such as fear of being rejected or ignored, exposure to different and childish treatment, or their underestimation as people.

    Failure to communicate the disease or see the doctor for evaluation until it is in a severe stage has a negative impact on the quality of life of these people, as early diagnosis has been shown to is beneficial. as much as possible the necessary measures and the search for the required services.

    Develop sensitivity and empathy

    Another repercussion of the ignorance of the disease is the frequent fact of talking about the person and their illness with the caregiver while they are present and most of the time conveying a negative message. This usually goes through the misconception that the person with dementia will not understand the message, which is an affront to their dignity.

    In order to raise awareness and knowledge in society about dementia, it is necessary to carry out the expansion of “dementia friendly communities”, the creation of information campaigns, conferences, projects, etc. , consistent with dementia policies. equality, diversity and inclusion and, in turn, offer support to the person and their caregivers.

    Beyond the “dementia” tag

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

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

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

    And finally, it is not necessary never forget that even though the disease progresses and affects the person to a large extent, their identity and essence are still there. Dementia does not completely destroy the person, in any case, it is society and its ignorance that underestimates and depersonalizes them.

      Bibliographic references:

      • American Psychiatric Association (2000). DSM-IV-TR: Diagnostic and statistical manual of mental disorders, text review. Washington, DC: American Psychiatric Association.
      • American Psychiatric Association (2013). DSM-V: Statistical and Diagnostic Manual of Mental Disorders – 5. Washington, DC: American Psychiatric Association.
      • Batsch, NL and Mittelman, MS (2012). World Report on Alzheimer’s Disease 2012. Overcoming the Stigma of Dementia. London: Alzheimer’s Disease International http: // www. pdf.
      • Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M. and Karagiannidou, M. (2016). World Alzheimer’s Disease Report 2016: Improving Health Care for People With Dementia: Coverage, Quality, and Costs Now and in the Future. London: Alzheimer’s Disease International.

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