Overcoming the Stigma of Alzheimer's
Alzheimer’s is a diagnosed disease that has become known around the world. Alzheimer's is associated with genetic, lifestyle and environmental factors that affect the brain cells over time. At the initial stage of the disease, forgetfulness and mild confusion is seen. Over time, recent memories also start erasing. Advanced stage symptoms vary from person to person. There is no cure for Alzheimer's disease. Medication can temporarily reduce some symptoms or slow down the progression of the condition in some people. Even with education, people continue to hold stigma towards cognitive impairments. Many fear realizing they may have a prevalent gene or fear they may recognize early symptoms of dementia in themselves. The uncertainty of losing one’s memories and independence is certainly frightening. Acceptance for some is like giving in to the disease. The stigma associated with dementia slows the process of seeking out understanding and medical intervention in the early stages of cognitive dissonance. As the population changes and life spans increase, we need to become comfortable with dementia.
Cognitive impairment is real. One does not need to be old, to suffer from issues with cognition. Chronic Traumatic Encephalopathy (CTE) will develop into dementia, soldiers subjected to loud blasts, and athletes diagnosed with head trauma. The elimination of the stigma attached to neurological conditions will make it easier for families to seek early intervention during a disease’s beginning stages.
Families can learn to eliminate stigmas related to dementia by trying some of the following methods:
Be open and direct. Engage others in discussions about Alzheimer's disease and the need for prevention, better treatment and an eventual cure. Openly discuss and identify within your family your individual’s personality and behavioral changes: confusion, getting lost, a difference in appearance (makeup, hair, body odor), unusual or change in language/speech.
Make sure to watch how the person walks. Do they tend to fall often? Do you notice more bruises? Is there a change in sleep patterns? Share the information with family, make them aware and ask for recommendations on how they can help with care.
Loss of appetite may be due to medication or a loss of taste. People with cognitive disabilities may forget how to eat, can’t identify food, or have problems swallowing. Eating problems are most prevalent in the later stages of the disease. There are numerous products available on the market to assist with eating issues. Talk about changes in appetite and medications.
Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical. Seek help from organizations your family associates with, church, community groups, clubs. Members of groups will often bring care packages, pay visits, or call to check in. Find a group specific to the disease, if possible.
Communicate the facts. Sharing information is key to dispelling misconceptions about the disease. Suggest the family hold monthly check-ins to check in and share relevant information on the condition, including books, magazine articles, and documentaries on how other families cope with the stress of being a caregiver. It is also another health check-in for the caregiver. People who attend the meeting will be the individuals most likely to assist with specific tasks.
Don't be discouraged. Denial of the disease by others is not a reflection of you. If people think that Alzheimer's disease is normal aging, see it as an education opportunity.
Be a part of the solution. As an individual living with the disease, yours is the most powerful voice to help raise awareness, end stigma, and advocate for more Alzheimer’s support and research.
If you need help holding it together as a caregiver, reach out to a practitioner in the field who has personal experience with caregiving for people with dementia. Caregivers need to protect and support family members with a plan for future care. All of the above suggestions will ease discomfort and anxiety for the individual and family. Speaking honestly and openly about dementia will wear the stigma down. Eliminate the shame of the disease by addressing issues associated with dementia.