This June, during Alzheimer’s & 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.
Many Americans struggle with what to say and do when a family member, friend, co-worker or neighbor is diagnosed with Alzheimer’s disease or another 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 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. “I love the same people and doing the same things I did before my diagnosis,” said Dale Rivard, 64, East Grand Forks, Minn. “I understand Alzheimer’s is a progressive disease and I may not be able to do all the things I once did, but I want to continue doing the things I enjoy for as long as I can.”
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. “It’s upsetting to have others ask my wife how I am doing when I am sitting right there or nearby,” said Jerry Smith, 78, Middleton, Wis. “I want to be open and honest about my diagnosis. Talking around me only makes me 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. While disease-related symptoms are similar, the challenges associated with an earlier diagnosis can be different. “I was diagnosed with dementia at age 53,” said Deborah Jobe, 55, St. Louis, Mo. “I was at the peak of my career and had to step away from a job I loved. Suddenly, the plans I had for retirement with my husband looked very different. Most people just assume that Alzheimer’s and dementia is only a diagnosis for old people, but I tell people if you have concerns about your cognition, get it checked regardless of your 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. “It’s hard enough to tell someone you have Alzheimer’s, let alone have to defend it,” said Laurie Waters, 57, Clover, S.C. “It drives me crazy when someone tells me I am too young or that I don’t look like I have Alzheimer’s. People living with Alzheimer’s all look different. You may not see my illness, but I live it every day.”
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. “I want people to understand that even though I may look myself, my disease sometimes causes me to not act myself,” said Clint Kershaw, 61, North Turo, Mass. “So, if I ask for help doing something I once did easily or respond to a question in an unexpected way, be patient with me. I have good days and bad days, and on the bad days, I just need a little more help.”
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. “My diagnosis has been devastating, but my life is not over,” said Nia Mostacero, 47, Meridian, Idaho. “I am still living a fulfilling life. I’ve put together my bucket list and intend to keep making memories for as long as I can.”
During Alzheimer’s & Brain Awareness Month in June, the Alzheimer’s Association encourages everyone to learn more about disease-related challenges facing those living with Alzheimer’s and other dementia. Educating yourself and others about the disease is one of the best ways to reduce stigma and misperceptions. The Alzheimer’s Association offers guidance for navigating every stage of the disease. The Association’s Live Well series provides tips to help early-stage individuals live their best lives. For other disease-related information and resources, visit alz.org.