Six personal insights from people living with dementia, Alzheimer’s

The shock of someone revealing a dementia diagnosis can leave family members, friends and others at a loss for what to say or do. Often, individuals distance themselves from diagnosed individuals.

During Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association shares thoughts from those living with early-stage Alzheimer’s or dementia.

“The stigma surrounding Alzheimer’s and other dementia is due in large part to a lack of understanding of the disease,” said Katie McDonough, director of programs and services for the Central and Western Virginia Chapter of the Alzheimer’s Association. “These personal insights from people living with early-stage dementia highlight common disease-related stigmas and provide valuable guidance for improving how Virginia residents can support and engage these individuals.”

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. Many individuals say it can be upsetting when family and friends only check on the person through a spouse or an adult child. 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 for others to avoid the common misconception that Alzheimer’s and other 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 an Alzheimer’s 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.
• Understand sometimes my words and actions are not me, it’s my disease. As Alzheimer’s disease and other 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.
• 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 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.

The Alzheimer’s Association offers guidance for navigating every stage of the disease. For other disease-related information and resources, visit alz.org.

Story by Crystal Abbe Graham