People living with Alzheimer's disease or other dementia experience stigmas and stereotypes every day. Facing and overcoming stigma can be a significant challenge for individuals and families affected by Alzheimer's.
My mother is living with Alzheimer's. I am living with Vascular Mild Cognitive Impairment. It may or may not turn into Alzheimer's. My diagnosis hit me like a ton of bricks. I have been working for and with the Alzheimer's Association for 17 years, so I know what will be happening to me after working so closely with them and also experiencing my mother's path.
This June, during Alzheimer's and Brain Awareness Month, the Alzheimer's Association is revealing insights from people living with early-stage dementia and what they wish others knew about living with Alzheimer's and other dementia. Most everyone has a family member or knows someone with dementia.
Here are six things people living with early stage Alzheimer's disease, such as myself, want you to know:
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. 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. Many individuals say it can be upsetting when family and friends only check on the person through a spouse or an adult child. Avoiding or side-stepping direct communication only makes us feel more isolated and alone.
Yes, younger people can have dementia. While the vast majority of Americans affected by 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 for others to avoid the common misconception that dementia only affects older people and to take cognitive concerns seriously at any age.
Please don't debate my diagnosis or tell me I don't look like I have Alzheimer's. While family members and friends may be well-intended in attempting to dismiss a dementia diagnosis, many living with the disease say such responses can be offensive. If someone says they have been diagnosed with dementia, take them at their word. It is a diagnosis from a trained professional.
Understand that sometimes my words and actions are not me, it's my disease. As Alzheimer's dementia progresses, 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. I may forget your name at times, but that is OK.
An Alzheimer's diagnosis does not mean my life is over. Earlier detection and diagnosis of dementia is enabling diagnosed individuals to have more time to plan their futures and prioritize doing the things most important to them. Many people living with early stage Alzheimer's and dementia say they want to continue living active, fulfilling lives for as long as possible. I know I've done my best to.
The stigma surrounding Alzheimer's and other dementia is due in a large part to a lack of public awareness and understanding of the disease. Bringing light to the myths and misconceptions is an opportunity for all Arkansas residents to help people living with the disease and their families overcome the challenges associated with it.
Please don't treat me any differently.
Mark E. Aloway lives in Little Rock.