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 with them. 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 following a diagnosis.
“In the wake of an Alzheimer’s or dementia diagnosis, most people want to do the right thing, but we’re not always sure or know what the right thing is,” said Monica Moreno, senior director, care and support, Alzheimer’s Association. “A diagnosis may test friendships. Friends may refuse to believe or have trouble accepting a person’s diagnosis, withdrawing from the person, leaving a feeling of abandonment or isolation. Understanding the disease and the common perspectives shared by people living with it can be helpful in staying connected.”
The Alzheimer’s Association 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 Minnesota resident Dale Rivard. “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. 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.
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 Missouri resident Deborah Jobe. “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 are only diagnoses for old people, but I tell people that 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. 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. “I want people to understand that even though I may look myself, my disease sometimes causes me to not act myself,” said Clint Kershaw, of Massachusetts. “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.”
