It is difficult for people to talk about Alzheimer's because it is a fearful and debilitating disease that affects over 5 million Americans.
While 1 in 3 seniors dies with Alzheimer's or another dementia (more than breast cancer and prostate cancer combined), it is not a normal part of aging. Though age is a predominant risk factor, Alzheimer's disease can develop from a variety of risk factors such as lifestyles and genetics.
There are many misconceptions about Alzheimer's that lead us to fear of the word.
The most common negative association with Alzheimer's was the feeling of being discounted or marginalized by others. The lack of understanding of what to do when having a conversation with a person with dementia or how to involve the person more was also a common theme.
Additionally, the fear of being outcast or abandoned by friends and relatives can cause social isolation and withdrawal on the part of the affected person.
Some think that all individuals with Alzheimer's get violent or aggressive. This behavior typically erupts out of fear, confusion or inability to express a need. Others mistakenly believe the disease prevents someone from taking part in meaningful activities or enjoying relationships.
Such stigmas further the widespread fear attached to Alzheimer's disease, the word and everything attached to it.
Such fears often prevent individuals from seeking medical treatment, receiving an early diagnosis, looking at treatment options, developing a support system and even participating in clinical trials or studies.
The stigma of Alzheimer's is only going to be reduced through education, awareness and being proactive in one's personal health care.
By being open and direct about an Alzheimer's diagnosis, by seeking support services, by engaging family and friends more in the disease journey, by showing the realities of the disease and by being advocates for public policy and research funding, people would perhaps become more comfortable using the word Alzheimer's.
Fortunately, the Centers for Disease Control and Prevention and the Alzheimer’s Association have developed The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018. This ground plan proposes 35 actions to increase the quality of life for people with cognitive impairment and to reduce stigma.
Among these action items are identifying strategies to increase public awareness, decrease stigma and to promote early diagnosis, in addition to promoting strategies for the public regarding effectively and sensitively communicating with those affected by Alzheimer’s disease or other dementias.