Better Thinking
By Lindsay Walker, Executive Director for the Alzheimer’s Association Cleveland Area Chapter
June is Alzheimer’s & Brain Awareness Month, a time to encourage conversation about the brain, Alzheimer’s disease and other forms of dementia.
In the United States, more than 6 million people live with Alzheimer’s disease, a progressive, fatal brain disease that kills nerve cells and tissues in the brain, affecting an individual’s ability to remember, think, plan, speak and walk. In Ohio, there are 220,000 individuals, ages 65 years old and older, living with the disease.
So, I thought I would share some of the insights that Eric VanVlymen, Regional Leader for the Alzheimer’s Association in Ohio, shared with us from people living with early-stage dementia about what they wish others knew about living with Alzheimer’s and other dementia.
The shock of someone revealing a dementia diagnosis can leave many at a loss for how to engage. Efforts to be supportive can be dampened by concerns of saying or doing the wrong thing. Worse, not knowing what to say or do, some individuals distance themselves from diagnosed individuals, further deepening the sadness, stigma and isolation people living with Alzheimer’s and dementia can experience in the wake of a diagnosis.
The Alzheimer’s Association recently asked those living with early-stage Alzheimer’s and other forms of dementia what they want others to know about living with the disease. Here are six things they shared:
- My Alzheimer’s diagnosis does not define me: Although an Alzheimer’s diagnosis is life- changing, many living with the disease say their diagnosis does not change who they are. Many diagnosed individuals say they want to continue doing the activities they enjoy for as long as possible and stay engaged with family and friends.
- If you want to know how I am doing, just ask me: The sudden change in how others communicate with someone recently diagnosed with Alzheimer’s or another dementia is a frustrating experience for many living with the disease. They say avoiding or side-stepping direct communication only makes them feel more isolated and alone.
- Yes, younger people can have dementia. While the vast majority of Americans affected by Alzheimer’s and other dementia are age 65 and older, the disease can affect younger individuals. Those diagnosed with early-onset Alzheimer’s (before age 65) say it is important to avoid the common misconception that Alzheimer’s and other dementia only affects older people and to take cognitive concerns seriously at any age. If you experience some cognitive impairment, go to your doctor. Do not wait. Request a cognitive assessment and be open about symptoms and concerns you may have. Early diagnosis is key in the treatment of Mild Cognitive Impairment, Alzheimer’s and other dementia.
- Please don’t debate my diagnosis or tell me I don’t look like I have Alzheimer’s. If someone says they have been diagnosed with dementia, take them at their word.
- Understand sometimes my words and actions are not me, it’s my disease. Individuals can experience a wide range of disease-related behaviors, including anxiety, aggression, and confusion. Diagnosed individuals say it’s important for others to recognize disease-related symptoms, so they are better prepared to support the person and navigate communication and behavioral challenges.
- An Alzheimer’s diagnosis does not mean my life is over. Earlier detection and diagnosis of Alzheimer’s disease and other dementia is enabling diagnosed individuals more time to plan their futures.
The Alzheimer’s Association Cleveland Area Chapter offers free education programs for family members, friends, and those with the disease. For more information, go to alz.org/cleveland/helping_you/.
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