Alzheimer’s Disease is a diagnosis of exclusion, which means everything else had to be ruled out, and it’s a very difficult, long, frustrating and anxiety-provoking journey.
– Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN
When you combine all ages, more than 6 million Americans struggle with Alzheimer’s, and that number will reach about 13 million by 2050. While most people believe Alzheimer’s disease is only a diagnosis for those aged 65 or older, it can be diagnosed in people as young as in their 30’s. This is referred to as early-onset or young-onset Alzheimer’s disease.
A diagnosis like Alzheimer’s disease often leaves everyone involved at a loss about what to say or how to act when they hear the news. Many people do not understand Alzheimer’s disease or how it progresses, so they may not know how to interact with you – most likely worried that they may say or do the wrong thing. For those with Alzheimer’s disease and their families, combating and getting past stigmas, myths, and misconceptions can be a big problem.
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-onset 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-onset 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 – just as a diagnosis of diabetes or high blood pressure doesn’t change who that person is. Alzheimer’s disease may be progressive, but it doesn’t happen overnight. It may take years or decades before the person can no longer do all the things they once did. The best thing to do is to take each day as it comes and continue to do all the things you have always done and enjoyed for as long as possible.
#2. If You Want To Know How I’m Doing, Just Ask Me
Changing how you communicate with someone recently diagnosed is frustrating to the person living with Alzheimer’s. Continue to interact with the person you always have and be sure you don’t talk around them. If the person is sitting right there or nearby, ask them how they’re doing rather than asking their spouse or care partner. Doing so only makes them feel more alone and isolated.
#3. Yes! Younger People Can Have Dementia, Too
While most people diagnosed with Alzheimer’s are aged 65 or older, people as young as 30, 40, or 50 can be diagnosed. When the person is that young, they may have an even more difficult time getting an accurate diagnosis when the disease-related symptoms are similar for to younger- and older-onset forms of the disease. They may also have more challenges in the aftermath with juggling family and work demands and may have to stop working earlier than they planned to.
#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. Remember that Alzheimer’s disease is a diagnosis of exclusion – which means everything else had to be ruled out, and it has been a difficult, frustrating, and anxiety-provoking journey. The person isn’t going to look any different on the outside, and you can’t see their illness, but they are living it every day.
#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. Be patient if they say something unexpected or out of character. They will have good days and bad days.
#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 ideas are negative stereotypes and myths perpetuated by a society that doesn’t want to think or learn about Alzheimer’s disease until it affects them personally. Being diagnosed earlier in the disease trajectory can be a blessing. It gives the person and everyone who loves them the time to prioritize what’s most important to them and begin to plan their futures.
✔️ Ways to Help People Living with Alzheimer’s
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. If you’re looking to support those with Alzheimer’s and those who care for them. Here are the things you can do:
- Learn more about Alzheimer’s disease and the challenges faced by those living with the disease. This is the single best way to reduce stigma and correct myths and misperceptions.
- 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 like what I’ve shared with you today,
✔️ 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, myths, 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 firstname.lastname@example.org, and I will get back to you by recording an answer to your question.
More Resources About Memory And Alzheimer’s Disease …
This Is Getting Old has several other episodes about memory and Alzheimer’s. You can check them out below:
- EP: 65 – What are the Stages of Alzheimer’s Disease? Part I: Symptoms of Early- and Late-Stage Alzheimer’s Disease
- EP: 66 – What are the Stages of Alzheimer’s Disease? Part II: Symptoms of Late- and End-Stage Alzheimer’s Disease
- EP: 64 – Alzheimer’s Disease and Living Alone: Four Signs Someone May Not Be Safe at Home Alone
- EP: 63 – Alzheimer’s Disease and Driving: Five Signs That It’s Time to Take the Keys
- EP 38: Ten Tips for Preventing Alzheimer’s Disease
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 truly 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 (2011) ) and then joined the faculty at Duke University School of Nursing as an Assistant Professor. My family moved to northern Virginia in 2015 and led to me joining the faculty at George Washington University (GW) School of Nursing in 2018 as a (tenured) Associate Professor where I am also the Director of the GW Center for Aging, Health and Humanities.
Find out more about her work HERE.