6 Things People Living with Early-Stage Dementia Want You to Know

·4 min read

More than 6 million Americans are living with Alzheimer's disease, the most common cause of dementia. By 2050, that number is expected to double. Yet too often, people living with Alzheimer's and other dementia experience stigma and stereotypes that makes living with a devastating and fatal disease even more challenging. 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 disease. Here are six things they shared. Read on to find out more—and to ensure your health and the health of others, don't miss these Sure Signs You've Already Had COVID.

1

Yes, Younger People Can Have Dementia

patient speaking with doctor
patient speaking with doctor

 

While the vast majority of Americans affected by Alzheimer's and other dementia are age 65 and older, the disease can affect younger individuals. Disease-related symptoms are similar, but the challenges associated with younger-onset Alzheimer's (before age 65) can be very 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." 

2

If You Want to Know How I am Doing, Just Ask Me

Senior woman conducting an interview
Senior woman conducting an interview

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."

3

Please Don't Debate My Diagnosis or Tell Me I Don't Look Like I Have Alzheimer's

two male friends opening up about mental health
two male friends opening up about mental health

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."

4

Understand Sometimes My Words and Actions are Not Me, It's My Disease

Thoughtful girl sitting on sill embracing knees looking at window, sad depressed teenager spending time alone at home, young upset pensive woman feeling lonely or frustrated thinking about problems
Thoughtful girl sitting on sill embracing knees looking at window, sad depressed teenager spending time alone at home, young upset pensive woman feeling lonely or frustrated thinking about problems

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. 

5

An Alzheimer's Diagnosis Does Not Mean My Life is Over

happy woman in clean home enjoys coffee in bright kitchen
happy woman in clean home enjoys coffee in bright kitchen

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.

6

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."

These and other disease-related stigmas, misconceptions and stereotypes can have wide-ranging and harmful consequences, preventing people with dementia from seeking medical treatment, receiving an early diagnosis, building support networks and living their best lives possible.

 June is Alzheimer's&Brain Awareness Month. 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. Visit alz.org to learn more. And to protect your life and the lives of others, don't visit any of these 35 Places You're Most Likely to Catch COVID.

Monica Moreno is a Senior Director of Care and Support at the Alzheimer's Association