EP112: Six Things To Do After an Alzheimer's Diagnosis

In 2022, it is estimated that 6.5 million Americans are living with Alzheimer's disease.   The number of people per 100,000 newly diagnosed with Alzheimer's disease per year (incident rate) appears to be declining, the number of people with Alzheimer's disease (prevalence) is expected to continue to grow (2022 Alzheimer's Disease Facts and Figures Report, p. 19).     If you are or someone you love have been newly  diagnosed with Alzheimer's, this episode will give you 6 things to do because many people do not know where to start.  Many people feel that everything has changed after learning that a loved one has Alzheimer's disease or a related dementia. There are many myths and misperceptions about Alzheimer's disease (stigma) – this episode will give you resources to learn more about the reality of disease progression and steps to take.  First of all, remember that you're not alone. There is help available, and there are resources to connect you to people who understand what you've been through and what you're going to go through.  These six things presented in this podcast will help you after getting a diagnosis like Alzheimer's disease; tips on what to get organized, permission to make healthy living a priority, and ensuring important things are taken care of.  Key points covered in this episode:   ✔️ #1. Educate Yourself (And Others) About The Disease.  Being stigmatized by others is often a primary concern of people living with Alzheimer's and their care partners. Stigma is a negative label identifying a person with an illness or disability. Stigma around Alzheimer's disease typically happens because people don't understand it or know what to expect.   Learn as much as possible about this disease and encourage care partners to do the same. You can learn about the condition from the Alzheimer's Association website.  ✔️ #2. Coming To Terms With Your Diagnosis And Sharing The Diagnosis     With Others  You may or may not be able to come to terms with your diagnosis before you tell others. You may not want to wait until you've had time to come to terms with it, or you may want to wait; but either way,  as the disease progresses, you will need help and support from others who know and understand you. You can decide who to tell and when to tell and when you do, this is an excellent time to educate them, too.   ✔️ #3. Be An Active Participant In Your Financial, Legal, And Long-Term Care Planning.  This will likely be the best gift you can give your loved ones. If you don't provide information about your wishes and your legal documents accessible, the burden of making these decisions will fall on your loved ones. I recommend getting a copy of Cameron Huddleston's book "Mom & Dad, We Need to Talk" and filling out the "In Case of Emergency Organizer" available on her website for free.   ✔️ #4. Reevaluate Your Priorities.  Set goals for the things you still want to accomplish. Life is not over yet – so dust off that bucket list and start planning to do as much of it as possible while you're still able. This is the same thing that many people do after receiving a terminal diagnosis.   You know yourself best and what's most important to you in the time you have left – which by the way, could be 20 more years. While you are able, make decisions about how you want the rest of your life to look and share that vision with those who love you.  ✔️ #5. Take An Active Role In Managing Your Disease And Build Your Care Team.  Start now and begin to build your care team. This includes you, your family and friends, neighbors, and healthcare professionals with expertise in Alzheimer's care.   Learn more about Dementia Friendly Communities. These are communities that provide supportive options that foster quality of life. If you don't have one yet, you may want to look into starting one.   Additionally, find out if there is a Village in your area, join it and start volunteering. The Village Model is "neighbors caring for neighbors" – a nonprofit, grassroots, community-based organization of volunteers that reflects the needs of its members and communities.   ✔️ #6. Discuss Alternative Treatments, Supplements, And Medications With Your Healthcare Team.  Although current medications cannot cure Alzheimer's, some drugs may help lessen symptoms, such as memory loss and confusion, for a limited time. Other medicines change disease progression, with benefits to cognition and function.  Look into FDA-approved drugs, alternative treatments and supplements, and consider participating in clinical trials.   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, 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/.