Six Things People Living with Dementia Want You to Know

A group of three middle-aged and senior multi-ethnic men in their 50s and 60s playing a game of chess. The view if from over the shoulder of the African-American man. The senior Hispanic man is reaching for a piece to make his move.

Many people 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. Efforts to be supportive can be dampened by concerns of saying or doing the wrong thing. Some people may even distance themselves from someone who’s been diagnosed, further deepening the sadness, stigma and isolation that living with Alzheimer’s and dementia can cause.

The Alzheimer’s Association recently asked people 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 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. “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. “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. 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. “People living with Alzheimer’s all look different,” said Laurie Waters, 57, Clover, S.C. “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 Truro, 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.”

An Alzheimer’s diagnosis does not mean my life is over. Earlier detection and diagnosis are giving diagnosed individuals more time to plan their futures and prioritize 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.”

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.

Source: Alzheimer’s Association,

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