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Voice of Experience

Voice of Experience: September 2023

Connecting with People Living with Early Stage Alzheimer's

Mike Lynch


  • When someone is diagnosed with Alzheimer's disease or another form of dementia, many people often struggle with how to interact with them and the fear of saying or doing the wrong thing can lead to distancing, exacerbating the isolation and stigma felt by those diagnosed with these conditions.
  • The Alzheimer's Association provides five tips for supporting those with dementia, including educating oneself and not making assumptions about the disease, showing continued support, supporting caregivers, and remembering the person inside.
Connecting with People Living with Early Stage Alzheimer's studio

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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.” 

An Alzheimer’s diagnosis does not mean my life has ended.

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.

“The stigma surrounding Alzheimer’s and other dementia is due in large part to a lack of understanding of the disease,” said Moreno. “These personal insights from people living with early-stage dementia highlight common disease-related stigmas and provide valuable guidance for improving how we can support and engage these individuals.”

To help family members and friends avoid common stigmas associated with Alzheimer’s disease and other dementia, the Alzheimer’s Association offers these 5 tips:

  1. Educate yourself. Learn the facts about Alzheimer’s disease and other dementia, including symptoms, disease progression, and common challenges facing caregivers. The Alzheimer’s Association website offers robust disease-related information and the Association offers online and in-person education programs and other resources that can help. Once you've learned more about Alzheimer’s and other dementia, share your knowledge with others. If you hear something about dementia that is false or misleading, don't be afraid to challenge it.
  2. Don’t make assumptions. Alzheimer’s and dementia affects each person differently. A diagnosis doesn’t mean the person will have to stop their daily routine or give up activities they enjoy immediately. If someone says they have been diagnosed with dementia, take them at their word. Even if a person doesn't seem "old" enough — recognize that “Alzheimer’s is only for old people” is another common misconception.
  3. Continue to show support. People living with dementia don’t want to lose their friends nor do they want to stop doing the activities they enjoy. Be supportive. Stay in touch and connected. Social engagement can contribute greatly to a person’s well-being and lets people with dementia know you care.
  4. Support the caregiver. Caregivers need support, too. Knowing more about what they go through is a good start – most caregivers wish that more people understood the realities of caring for someone living with dementia. If you know someone who is caring for a person living with dementia, show understanding and offer help. They will appreciate it.
  5. Remember the person inside. Above all, remember that people living with dementia still have hopes, dreams, and aspirations like the rest of us. If you have a friend or family member diagnosed with dementia, know that feelings of loss and grief are normal, and will likely grow more intense as the disease progresses. However, it's possible for the person to live well with dementia and maintain their quality of life for as long as possible. And you can help that person live well, too.

“The Alzheimer’s Association encourages everyone to learn more about disease-related challenges facing those living with Alzheimer’s and other dementia,” Moreno said. “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

The Alzheimer’s Association Legal Industry Leadership Council (LILC) is proud to have the ABA Senior Lawyers Division as a member.  If you are interested in joining the SLD team and supporting this cause, please click here.