Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part two of an eight part series.

Hearing the News

“What does that mean? “What do we do now?” are typical first thoughts, as is fear of the unknown, according to Chuck Fuschillo, Executive Director of the Alzheimer’s Foundation of America.

Reactions will range from surprise, denial, fear, helplessness, anger, or sad corroboration of declining function. Unfortunately, patients and caregivers can leave the physician’s office feeling adrift, without much tangible information to rely on.

Immediately following the news, it may be hard for people to take in any additional information anyway, because they are still trying to wrap their heads around the diagnosis, says Michelle Varegas, of the Family Caregiver Alliance, a non-profit advocacy group in San Francisco.

We had to research all of that on our own.

Depending on the provider, there may not be a lot of support available. “After that AD diagnosis, we weren’t given anything – no pamphlets, or handouts, or anything telling us what to expect,” explains Allen Vann, a retired middle school principal from Commack, NY.

His wife Claire was diagnosed eight years ago with early-onset Alzheimer’s. “There was no mention or discussion of support groups or websites or books. We had to research all of that on our own.” Vann eventually found a support group through the Long Island Alzheimer’s Foundation.

The good news: Eight years later, physicians are better trained in how to deal with the diagnosis and there are many, many sources of information available.

The New Normal

After the initial diagnosis, caregivers should make a follow-up appointment a week or two later to learn more about the disease, medical options, and social support. That allows them a brief time for the news to sink in and begin preparing for a new normal. Peter DeGolia, MD, Professor of Family Medicine, at Case Western Reserve School of Medicine in Cleveland, says he insists that AD patients always bring the family caregiver or other “reliable reporter” to future visits.

“It can be a delicate issue for some families,” he explains, “but having a caregiver present effectively assists the physician by providing more comprehensive information and means the caregiver and patient go home with a more accurate game plan.”

Even in the early stages of the disease, patients can forget what they’re told, so caregivers need to keep a spreadsheet or journal that both the family and provider can refer to.

Stepping Up

Once a loved one is diagnosed, it’s up to family caregivers to become strong advocates on their behalf.

That may be difficult or uncomfortable at first, particularly for adult children. It can require a huge shift in attitude, says Jennifer Zaijack, of Wisconsin, who helps long distance with her father’s care. “You have to change how you work with your parents versus how you did before. It’s like a whole different way of interacting.”

Allen Vann believes that clinicians should not sugarcoat the nature of the disease.

Allen Vann believes that clinicians should not sugarcoat the nature of the disease. “They have to tell the spouse or caregiver what they need to know, not what they necessarily want to hear, so patients and caregivers know what to expect,” he explained. Many caregivers complain that they’re not given enough specifics about the disease’s progression and find themselves unprepared for issues like incontinence, agitation, wandering or hoarding.

That’s why it’s so important that caregivers feel empowered to ask questions, says DeGolia. “Write them down and expect them to be answered by the practitioner.”

While many physicians welcome questions – especially when caregivers come to follow-up appointments prepared – patients and caregivers of a certain generation or from certain cultures may still be uncomfortable with these interactions.

“We serve a lot of Latino clients who automatically defer to the concept that the doctor knows all,” said the Family Caregiver Alliance’s Varegas. “Many believe it’s a matter of respect – not questioning what this physician is saying and not asking any questions.”

“You have to be thinking of your loved one’s interests first and put yourself on the line a little bit,” says Carol Levine, who directs the United Hospital Fund of New York’s Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers. If you’re uncomfortable being assertive, ask another family member to step in, she suggests.

Clinicians can be very busy. But there’s no such thing as an inappropriate question, DeGolia emphasizes.

“Even if you have to stand between the provider and the door, don’t allow yourself to get brushed off if you’re not satisfied or don’t understand.”

Be a Squeaky Wheel

Caregivers should not be afraid to call the office between appointments, says DeGolia. It may be a nurse or nurse practitioner that responds, but the caregiver should feel empowered to call and communicate. “This results in two major benefits — the caregiver questions are answered and there’s a record of the call that the provider can refer to during the next visit.”

Providers also benefit from information a caregiver provides. It helps him or her better manage the person, especially knowing the response to medications, such as those prescribed to enhance quality of life for dementia patients. Caregivers should observe and write down any behavioral changes, whether positive or negative, – like agitation, confusion or nausea – and report them to the physician. “It’s also vital to inform the physician about medications and tests given by other providers,” DeGolia said.

Physicians are also learning new ways to work with patients and caregivers in the office setting. Some have practice facilitators that sit down with patients and caregivers to review the main concerns of the visit before seeing the clinician.

Most importantly, says DeGolia, “keep asking questions and don’t give up until you’re satisfied.”

What the Experts Advise

Schedule appointments for a time when the loved one is usually calm and has the most energy, when you are not distracted, or have other issues on your mind such as picking up a child from school or preparing for an important business meeting.

Keep a notebook or computerized spreadsheet to track visits, tests, medications, and comments. You don’t have to be especially health savvy or health literate — ask a provider or nurse for a list of medications and keep the printout.

Jot down issues about the medications, side effects, and behavioral or physical changes. It’s easy to forget details during consultations without notes.

Review your notebook before the office visit to make sure key issues are discussed.
Inform the physician about other medications, tests, or diagnoses given by other providers. Don’t assume clinicians automatically coordinate with each other or share results.

Any time the physician writes a prescription, ask what it’s for, what it does, and about potential side effects. Medical terminology can be complicated, so be sure to get an explanation in plain language if you don’t understand something.

Bring an audio recorder to the appointment and with the provider’s OK, record the discussion. Once you’re home, you can review information again or replay it for your family members.

Ask for recommendations for websites or books to help you better understand your concerns.

Save questions about billing and insurance issues for office staff; don’t waste limited time with the provider on issues that administrators can resolve.

The Caregiver’s Notebook

Much like the journals that interior designers ask clients to keep – a scrapbook of design articles, magazine photographs, fabric swatches, etc. that help clients describe what they want — caregivers should establish their own list of sites or articles or books they find helpful. Here are a few suggested sites with which to begin your list.

Caregiver Action Network

The Caregiver Action Network serves a broad spectrum of family caregivers including adult children caring for parents with Alzheimer’s disease. The site offers a list of resources, peer support and advice, and conducts advocacy work on behalf of family caregivers.

Eldercare Locator

The US Administration on Aging offers this free public service to help connect people to services for older adults and their families. You can also reach Eldercare Locator at 1-800-677-1116.

My Medicare Matters

Medicare can be confusing. This free website provides step-by-step help to reassess coverage each year during open enrollment, and answer common questions about Medicare and Medicaid.

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 Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.

About Dave Kelso

Founded by Dave Kelso in 2014, Alzlive.com is a free, daily, digital lifestyle and news platform designed specifically for the unpaid family caregivers of Alzheimer’s and dementia patients in the United States and Canada and is owned by Kelso Publishing Inc.