Six Things People Living with Alzheimer’s Disease Want You To Know

Alzheimer's disease is becoming more common in the United States. All ages combined, more than 6 million Americans struggle with Alzheimer's, and according to studies, that number will reach about 13 million by 2050.

The Alzheimer’s Association recognizes that there’s a lot of work to do to reduce the stigma around dementia. In response to the challenge, they released information they collected from people living with early-stage dementia—The Six Things People Living with Alzheimer’s Disease Want You To Know.

Tune in to This Is Getting Old: Moving Towards An Age-Friendly World to learn valuable ways to help—in big and small ways— a person with Alzheimer's or those who care for them.

Key points covered in this episode: 

✔️ Six Things People Living with Alzheimer’s Disease Want You To Know

People with early-stage Alzheimer's disease and other forms of dementia were recently asked by the Alzheimer's Association what they wanted others to know. The following six things are shared by those with a diagnosis:

#1. My Alzheimer’s Diagnosis Doesn’t Define Me

While a diagnosis like Alzheimer’s disease at any age is life-changing, the diagnosis itself doesn’t change who the person is.

#2. If You Want To Know How I’m Doing, Just Ask Me

Continue to interact with the person as you always have and be sure that you don’t talk around them.

#3. Yes! Younger People Can Have Dementia, Too

While most people who are diagnosed with Alzheimer’s disease are aged 65 or older, people as young as 30, 40, or 50 can be diagnosed.

#4. Please Don’t Debate My Diagnosis—Don’t Tell Me I Don’t Look Like I Have Alzheimer’s

Dismissing an Alzheimer’s diagnosis can be offensive. It was already hard enough for them to share the diagnosis with family and friends, don’t make them have to defend it, too.

#5. Understand That Sometimes My Words And Actions Are Not Me—It’s My Disease

As Alzheimer’s disease progresses, the person may experience a wide range of disease-related emotions and behaviors, from confusion and anxiety to aggressive or inappropriate behaviors that may change daily and moment-to-moment.

#6. Remember That An Alzheimer’s Diagnosis Doesn’t Mean That My Life Is Over

The fact that the person’s Alzheimer’s disease was detected and diagnosed earlier doesn’t mean that they will die tomorrow or be shriveled up and living in a nursing home next year. Those are only negative stereotypes and myths.

✔️ Ways to Help People Living with Alzheimer's

If you’re looking to support those with Alzheimer’s and those who care for them. Here are the things you can do;

Check out the Alzheimer’s Association website (alz.org) to learn more about every stage of the disease. 

Subscribe to the Alzheimer’s Association’s Live Well Series—an online resource that gives tips to help those diagnosed with this disease live their best lives. 

You can also learn more by checking out This Is Getting Old’s Alzheimer’s-related episodes, ranging from 10 Warning Signs of Alzheimer's Disease to How Alzheimer’s Disease is Diagnosed.  

Other ways you can get involved to help #EndALZ is by volunteering, advocating, being a partner or sponsor, participating in events and/or making a donation to support work.

✔️ A Call For Everyone!

The stigma surrounding Alzheimer’s and other dementia is due in a large part to a lack of public awareness and understanding of the disease. By shining a light on stigmas and misconceptions surrounding Alzheimer’s and other dementia, we can help people be more supportive of individuals and families affected by this devastating disease.

If you have questions, comments, or need help, please feel free to drop a one-minute audio or video clip and email it to me at [email protected], and I will get back to you by recording an answer to your question. 

About Melissa Batchelor, PhD, RN, FNP-BC, FGSA, FAAN:

I earned my Bachelor of Science in Nursing ('96) and Master of Science in Nursing ('00) as a Family Nurse Practitioner (FNP) from the University of North Carolina Wilmington (UNCW) School of Nursing (SON). I genuinely enjoy working with the complex medical needs of older adults. I worked full-time for five years as FNP in geriatric primary care across many long-term care settings (skilled nursing homes, assisted living, home, and office visits), then transitioned into academic nursing in 2005, joining the faculty at UNCW SON as a lecturer. I obtained my PhD in Nursing and a post-master's Certificate in Nursing Education from the Medical University of South Carolina College of Nursing ('11). I then joined the faculty at Duke University School of Nursing as an Assistant Professor. My family moved to northern Virginia in 2015 which led to me joining the George Washington University (GW) School of Nursing faculty in 2018 as a (tenured) Associate Professor. I am also the Director of the GW Center for Aging, Health, and Humanities. Please find out more about her work at https://melissabphd.com/.
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