Steps to follow after a dementia diagnosis, especially if you live alone


By Sheryl Stillman

Many people rush to make decisions, but give yourself time to absorb the news. Here’s where you can get help.

This article is reproduced with permission from

Nearly half a million new cases of Alzheimer’s disease will be diagnosed this year in the United States, according to the BrightFocus Foundation. Worldwide, someone develops some form of dementia every three seconds.

Dementia diagnoses upend the lives of millions of patients and their families, throwing them into a maze of health issues, legal issues, work issues, financial strains, housing changes and caregiver support. Even the sharpest minds can be intimidated where to start.

While neuropsychologists, geriatricians and other dementia experts agree that no two people experience the effects of Alzheimer’s disease or dementia in the same way, they agree on the next steps for people newly diagnosed with a form of dementia:

First, pause and reflect

Whether you’ve sought help after noticing signs of dementia for a while or reluctantly consulted a doctor at the request of friends or family members, professional confirmation that your brain function is impaired and may trigger emotions ranging from disbelief to relief.

Donna Murico, 61, a health clinic coordinator until recently, had tried to convince her family doctor for years that something was wrong.

“At one point I pulled into my driveway and didn’t know what I was supposed to do next,” she said. “I could have gone through the garage door.” With Alzheimer’s disease running in her family, Murico had braced herself for bad news since her mother’s diagnosis 20 years ago. “My early diagnosis confirmed that I was not going crazy.”

After learning that they may face inevitable cognitive decline over time, many people rush to make decisions.

“The best thing to do is take a minute and breathe for about a week,” said Callyn Bedker, elder law attorney at Bedker Law and chair of the Bar Association’s Elder Law Section Council. of the State of Minnesota. “In very few situations, this weather will make a difference.”

Yet meeting with a lawyer is an essential piece of this puzzle – more on that below.

Read:A new kind of service dog helps people with dementia

Learn more about Alzheimer’s disease

Often one of the first calls for help will go to the Alzheimer’s Association. Individuals and caregivers can tap into the nonprofit group’s comprehensive resources through its website or by speaking directly with a care coordinator on its toll-free helpline (1-800-272-3900). Both are available around the clock and offer information such as medical definitions, the latest research results, and a directory of professionals and support options.

On a recent Saturday night, I called and spoke with a care representative about how to help myself or a loved one who is experiencing bouts of confusion. During our hour-long conversation, I learned strategies for maintaining safety, signs that may indicate progressive disease, and the names of elder care lawyers and neurologists in my area.

Thirty minutes after the call, I received an email with everything we had discussed and an action plan that summarized the recommended next steps. Having a plan can make you feel more in control of an overwhelming situation.

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Tell family and friends

“You need to tell the people closest to you about your illness,” said Linda Kaufman, a former civil attorney in West Hartford, Connecticut. Several years ago, at age 51, doctors said she had early-onset (or early-onset) Alzheimer’s disease. “As you can imagine I was quite shocked. I tried to figure out what to do and knew I would need some help.”

Talking to loved ones and close friends about this significant life change can be difficult and emotional. In addition to disrupting your life, these illnesses affect the future of your loved ones.

But remember, it’s about you and it’s important to be clear about your wants and needs on issues such as planning your care, deciding where to live if you ever need to move and how to communicate updates to family members.

Kaufman also advises being prepared for initial reactions from loved ones, which can range from unconditional support to stubborn denial and questioning of the diagnosis. You may need to disengage from people who have a suspicious or discouraging view of your condition.

For people who are still working, a frequently asked question is when to tell your employer and co-workers, especially if you’re worried that sharing the news could expose you to closer management scrutiny or cost you your job. job for making even a small mistake.

Workers may qualify for long- or short-term disability benefits or accommodations available under the Americans with Disabilities Act. Because every situation is unique, it’s important to speak with a lawyer before disclosing your condition to your employer – more details below.

Read more: Have you been diagnosed with dementia? It’s hard to know how fast you’ll decline, so start planning what’s next

Set up a care team

A care team is a group of people who can provide support throughout the progression of a specific disease. “One of the most important things to do after a diagnosis is to sit down and think about who your support systems will be,” said Beth Kallmyer, vice president of care and support at the Alzheimer’s Association.

She suggested asking yourself questions like, “Who do I want with me on this journey?” Or “who will help me with all the details?” Other members of a care team may include health care providers, therapists, and legal and financial professionals, and may change over time.

Kaufman, the former attorney, strongly suggests that you surround yourself with friends and family members who aren’t afraid to discuss your diagnosis and who have a consistently positive attitude. “I believe the longer you can feel psychologically healthy, it gives some cushion,” she said. “Apparently I have a lot of cushion. So, I’m very grateful.”

As early as possible, it’s important to bring your entire support team together — in person, via online video session, or via an old-fashioned conference call — to establish clear roles and discuss current and future needs. Kaufman also recommended picking a replacement for each role on your team, in case something unfortunate happens to your first choice.

Get your financial and legal affairs in order

“While you have as much wits as you can get, make sure you have your affairs in order,” Kaufman said. “Things can change very quickly.”

Depending on your situation, you may need a lawyer or several specialists in different areas of law. Lawyers certified in elder law obtain a certificate demonstrating their competence in a wide variety of fields affecting the elderly. Lawyers who only say they specialize in “elder law” may only have experience in one or two relevant areas, such as wills and estate planning or social security and People with Disabilities.

If you don’t already have a family attorney who can represent or recommend you, you can seek a referral from the Alzheimer’s Association, local legal aid services, state bar associations, or community centers.

Sarah Eyberg, Social Security and Disability Benefits Attorney at Soucie Eyberg, a law firm in Andover, Minnesota, shared the following advice:

The Social Security website can answer many frequently asked questions about filing for disability insurance. You can also use it to schedule a meeting at the nearest Social Security office or find the agency’s hotline number.

Tour: Understanding Social Security

Most people don’t want to deal with the legal paperwork – Power of Attorney, Enduring Power of Attorney, Health Care Directive, Trust and Will – until they have to. But making this many ahead of time can save you or your caregiver headaches, heartache, and money later.

Sheryl Stillman is a writer, professional coach and change management consultant whose goal is to help seniors live their best lives. To learn more, visit

This article is reproduced with permission from, (c) 2022 Twin Cities Public Television, Inc. All rights reserved.

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09-27-22 0501ET

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