What is your perception of dementia? The word dementia is derived from the Latin term “without mind” or “madness.” Dementia is a term widely used to describe a set of symptoms. These set of symptoms include memory loss, confusion, disorientation, change in mood, change in personality, poor insight, poor judgement, and challenges with thinking, language, and processing. Dementia is not a diagnosis. Major neurocognitive disorders, such as Alzheimer’s Disease or Lewy Body Dementia cause symptoms of dementia.
Stigma is defined as “a mark of disgrace; reproach on reputation; mental or physical mark that is characteristic of a defect or disease; hysteria.” There are many communities of people who experience real life stigma. Stigma dehumanizes a certain group of people based upon biases, prejudices, assumptions, and misconceptions.
One of the reasons I chose to write about this topic this month was a result of reading my friend Mike’s post on Facebook. Mike is diagnosed with Lewy Body Dementia and is a courageous and inspirational dementia advocate. He has spent countless hours fighting the battle of dementia stigma. He states, “I’m not battling dementia, my battle is what other people think of me because I have dementia.” This statement is so profound and certainly has much more meaning coming from someone who is experiencing dementia stigma firsthand.
My hope is that this will inspire others to learn more about dementia, understand that the person is still the person who desires love, sense of purpose, sense of belonging, dignity, respect, and social acceptance.
We have come a long way in terms of the deinstitutionalization of people with dementia. In the early to mid-1900’s most people would be placed in psychiatric institutions. Isolation, withdrawal, and living without purpose and meaning are characteristic of how people view dementia thus creating dementia stigma. Dementia is feared and that fear is driven by ignorance. Educating the public, people with dementia, personal and professional care partners is the only way we begin to encourage people with dementia to actively participate in our communities.
Tammy Pozerycki, MA, BC-DEd, CDCL, CADDCT, CFRDT, CDP, COTP
Care Manager and Dementia Educator
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