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The First Five Steps to Take After an Alzheimer’s Diagnosis

Writer's picture: Arwen  RasmussenArwen Rasmussen

You or your loved one has just been diagnosed with Alzheimer’s disease. Within seconds, hundreds of items pop up on your to-do list. Your emotions take a ride on a wicked roller coaster that plunges deep into a state of overwhelm. What do you next?


1. Take a moment to stop and breathe. Yes, there are many things to do, and this diagnosis is also a lot to process. Don’t make any decisions for a few days, or even a week. In many cases, this amount of time won’t make much of a difference for physical decline, but it can really help emotional acceptance of what’s to come.


2. Call the Alzheimer’s Association or visit their website. Care coordinators through the toll-free hotline (1-800-272-3900) can provide assistance ranging from safety tips, information about the progression of Alzheimer’s, names for attorneys and neurologists in your area, and recommendations for next steps in your personal journey. The website (https://www.alz.org/help-support) is also a wealth of information on the most current research, medical definitions, contact information for professionals on the topic, and support options.


3. Be open about your diagnosis and tell your loved ones. It can be hard to tell your friends and family, but you’re going to need them in your corner. This diagnosis doesn’t affect just you, but those who will come alongside you as well. It is important to be clear about your desires for care and living arrangements. Beware of those who deny or question your diagnosis or outlook. Surround yourself with those who will be accepting and supportive.


4. Create a personal care team. Though the list may grow and change over time, this group could include trusted family members, healthcare providers, legal and financial professionals, and therapists. It’s also a good idea to try to get everyone together in person, via an online video conference, or via phone in order to establish each person’s role and make sure everyone is on the same page for your current and future needs.


5. Contact a lawyer. The Alzheimer’s Association can provide referrals for many legal service professionals. Certified Elder Law Attorneys are one of the best options as they specialize in a wide range of subjects particularly affecting seniors. A lawyer can help you get your financial affairs in order and appoint a power of attorney. If you are still working, specifically ask about the appropriate time to tell your manager so as to incur as few negative consequences in the workplace, whether or not intentional, as possible. Also talk about collecting Social Security benefits. Even with a dementia diagnosis, collection of benefits can be an arduous and lengthy process. You might be dreading making these decisions, but it is better to accomplish them sooner with the ability and faculties you have at present.


Source: Stillman, Sheryl. “Alone with Alzheimer’s.” Next Avenue. 16 Sept 2022. www.nextavenue.org/alone-with-alzheimers. Photo credit: Getty


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