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Alone with Alzheimer's

Here are resources and suggestions to help navigate a dementia diagnosis, including help for those who live independently

By Sheryl Stillman

Almost 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 3 seconds.

Dementia diagnoses overturn the lives of millions of patients and their families, throwing them into a labyrinth of health care concerns, legal matters, work issues, financial strain, housing changes and caregiver support. Even the sharpest minds can be daunted over where to begin.

An older woman hanging up after a phone call. Next Avenue, diagnosed with Alzheimer's now what
Telling loved ones and close friends about this significant life change can be difficult and emotional. In addition to turning your life upside down, these illnesses affect the futures of people close to you  |  Credit: Getty

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

  • Take time to absorb the news
  • Call the Alzheimer's Association
  • Share the news with family and friends
  • Establish a care team
  • Meet with an attorney

First, Pause and Think

Whether you sought help after noticing signs of dementia for a while or reluctantly saw a physician at the urging of friends or family members, a professional confirmation that your brain function is impaired and can trigger emotions ranging from disbelief to relief.

"The best thing to do is take a minute and just breathe for a week or so."

Donna Murico, 61, a health care clinic coordinator until recently, had tried to convince her family doctor for years that something wasn't right.

"At one point, I pulled into my driveway and didn't know what I was supposed to do next," she said. "I could have driven right through the garage door." With Alzheimer's running in her family, Murico had been bracing herself for bad news since her mom's diagnosis 20 years ago. "My young-onset diagnosis confirmed I wasn't going crazy."

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

"The best thing to do is take a minute and just breathe for a week or so," said Callyn Bedker, an elder law attorney at Bedker Law and chair of the Minnesota State Bar Association Elder Law Section Council. "In very few situations will that time make a difference."

Still, meeting with an attorney is a critical piece in this puzzle — more on that below.

Learn More About Alzheimer's

Often, one of the first calls for help will go to the Alzheimer's Association. Individuals and caregivers can tap the nonprofit group's comprehensive resources via its website or by speaking directly to 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 findings and a directory of professionals and support options.

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

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

Tell Family and Friends

"You have to let the people closest to you know about your illness," Linda Kaufman, a former civil litigator in West Hartford, Connecticut, said. Several years ago, at age 51, doctors said she had young-onset (or early-onset) Alzheimer's. "As you can imagine, I was pretty shocked. I tried to figure out what to do and knew I would need help."

Telling loved ones and close friends about this significant life change can be difficult and emotional. In addition to turning your life upside down, these illnesses affect the futures of people close to you.

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

But remember that this is about you, and it is important to clearly state your wishes and needs on matters such as planning your care, choosing where to live if you eventually must move, and how to communicate updates with family members.

Kaufman also advises preparing for loved ones' initial reactions, which may range from unquestioning support to stubborn denial and challenging the diagnosis. You may need to disengage from individuals with a distrusting or discouraging outlook on your condition.

For people still working, a commonly asked question is when to tell your employer and coworkers, especially if you worry that sharing the news might open you up to closer management scrutiny or cost you your job for making even a small mistake.

Workers may be eligible for long- or short-term disability benefits or for accommodations available under the Americans with Disabilities Act. Because each situation is unique, it is important to speak with a lawyer before disclosing your condition to your employer — more on that below.

Establish a Care Team

A care team is a group of people who can provide support throughout the progression of a specific illness. "One of the most important things to do following a diagnosis is to sit down and think about who your support systems are going to be," said Beth Kallmyer, vice president for care and support at the Alzheimer's Association.

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

Kaufman, the former lawyer, strongly suggests that you surround yourself with friends and family members who are unafraid to discuss your diagnosis and 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."

Sooner rather than later, it is important to gather your full support team — in person, by online video session or via an old-fashioned conference call — to establish clear roles and discuss current and future needs. Kaufman also recommended choosing a backup for each role on your team, in case something unfortunate happens to your first choice.

"While you have as many wits as possible, make sure you have your affairs in order," Kaufman said. "Things may change very quickly."

Ask yourself questions such as "Who do I want with me on this journey?" Or "who will help me manage all the details?"

Depending on your circumstances, you may need one lawyer or several specialists in different areas of the law. Certified Elder Law Attorneys earn a certificate demonstrating competence in a wide variety of fields affecting older adults. Lawyers who say only that they specialize in "elder law" may have experience in only one or two relevant areas, such as wills and estate planning or Social Security and disability law.

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

Sarah Eyberg, an attorney expert in Social Security and disability benefits at Soucie Eyberg, a law firm in Andover, Minnesota, shared the following advice:

  • Ask your lawyer whether you should file for Social Security disability benefits as soon as you are unable to work because your benefit level may change once you stop paying in through an employer.
  • Understand that filing for benefits is overwhelmingly complex. The Social Security Administration denies 75% to 80%of initial disability applications. Even with dementia listed as a "compassionate allowance" (medical conditions available for an accelerated approval process), it takes three to five months to receive a response.
  • See your doctor regularly and have a documented treatment plan. Eyberg says, "it will be an uphill battle to get a disability case approved without a neuropsychological exam or other objective testing or measurements."

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

Most people don't want to deal with legal paperwork — power of attorney, durable power of attorney, health care directive, trust and will — until they have to. But preparing as many of these in advance can save you or your caregiver headaches, heartaches and money down the road.

Where to Find Help

Alzheimer's Association 1-800-272-3900

AARP 1-888-687-2277

  • (Spanish) 1-877-342-2277

Social Security Administration 1-800-772-1213

Medicare and Medicaid 1-800-633-4227

Sheryl Stillman
Sheryl Stillman is a writer, professional coach, and change-management consultant focusing on helping older adults live their best lives. Learn more at Sherylonline.com. Read More
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