Who better understands the experience of Alzheimer’s and other dementias than those living through it?
That’s the question the Alzheimer’s Association had in mind when they recently asked those living with early-stage Alzheimer’s and other dementia what they want others to know about living with the disease.
Collectively, the group unpacked six misconceptions about the experience—information that can help caregivers stay connected with a loved one as their journey progresses.
Six misconceptions about those with Alzheimer’s and related dementias:
- My Alzheimer’s diagnosis defines me.
I don’t want to talk about my diagnosis.
Only older people can have dementia.
I want to hear that I “don’t seem like I have Alzheimer’s.”
- My disease-related behaviors are character flaws.
- My Alzheimer’s diagnosis means my life is over.
Misconception #1: My Alzheimer’s diagnosis defines me.
Avoid: Believing they’re a different person or that you’ve “lost” them.
Nothing can change the essence of a person. Although an Alzheimer’s or dementia diagnosis significantly alters one’s plans and lifestyle, many 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, Minnesota. “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.”
What to do instead: Connect with your loved one around things that define them – art, music, literature, whatever their passions and interests are – instead of making “caretaking” the only common topic between you.
Misconception #2: I don’t want to talk about my diagnosis.
Avoid: Hesitating to talk to them directly about their diagnosis.
Alzheimer’s and dementia are isolating conditions; they tend to make the person feel isolated and alone. Once a person is diagnosed, there’s often a sudden shift in how others communicate with them, which is a frustrating experience for many.
“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, Wisconsin. “I want to be open and honest about my diagnosis. Talking around me only makes me feel more isolated and alone.”
What to do instead: Ask your loved one about their experience. Maybe even offer to co-journal their journey with them so they feel seen and heard. Also, always include your loved one in conversations, especially those regarding their care or well-being.
Misconception #3: Only older people can have dementia.
Avoid: Assuming younger people can’t have dementia.
While most Americans affected by Alzheimer’s and other dementias are 65 and older, the disease can affect younger individuals. Although the disease-related symptoms are similar, the challenges of an earlier diagnosis are distinctly different than being diagnosed later in life.
“I was diagnosed with dementia at age 53,” said Deborah Jobe, 55, St. Louis, Missouri. “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.”
What to do instead: Care for your loved one, but also be vigilant about your cognitive health. Some dementias can have hereditary factors, and early intervention is key.
Misconception # 4: I want to hear that I “don’t seem like I have Alzheimer’s.”
Avoid: Debating one’s diagnosis or telling them they don’t look like they have Alzheimer’s.
“It’s hard enough to tell someone you have Alzheimer’s, let alone have to defend it,” said Laurie Waters, 57, Clover, South Carolina. “It drives me crazy when someone tells me I am too young or 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.”
What to do instead: Accept the diagnosis right along with them. It will help them know they have an ally in the difficult journey ahead.
Misconception #5: My disease-related behaviors are character flaws.
Avoid: Assuming their disease-related behaviors – anxiety, aggression and confusion – are flaws of their character instead of symptoms of their disease.
As disease progresses, it’s normal for individuals to express a wide range of behaviors, many of which can be unpleasant and seem out of character for your loved one. They may be filled with anxiety and confusion and show aggression at times, especially later in their journey.
“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, 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.”
What to do instead: Know that these behaviors are manifestations of the disease; this will go a long way in giving you the patience and grace you need to withstand the journey. Also, begin learning early the techniques and skills to help your loved one cope with their difficult symptoms.
Misconception #6: My Alzheimer’s diagnosis means my life is over.
Avoid: Believing their life is over at the time of diagnosis.
Individuals with Alzheimer’s and other dementias still have time to plan their new, adapted futures and prioritize doing the things most important to them, especially if their diagnosis was detected early.
“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.”
What to do instead: Help them embrace the future ahead of them, and aid them in their planning and prioritizing so that they can live their new unexpected futures to the fullest.
As a caregiver, especially a new caregiver, the prospect of caring for a loved one with Alzheimer’s or dementia means knowing the future presents itself one day at a time—and one hour at a time. Help your loved one live their best life, but also live each hour to your fullest too, helping yourself along the way with proper self-care.