One of the biggest tasks for you as an Alzheimer’s caregiver is to manage your loved one’s medical needs. From juggling doctor’s appointments to making long-term plans, the tasks can become overwhelming. But there are strategies and resources available to help caregivers make this difficult job a little easier.
Understanding the Caregiver’s Role on the Health Care Team
“The caregiver is the essential person in the chain of Alzheimer’s care,” says James Noble, MD, MS, a neurologist and assistant clinical professor of neurology at Columbia University Medical Center in New York City.
Dr. Noble says that despite all he does as a neurologist to prescribe a good treatment plan, it’s useless if the person with Alzheimer’s can’t remember to follow it. That’s where the caregiver comes in. He views a caregiver as not just the supervisor of a loved one’s Alzheimer’s health care team, but also as a critical member of the team.
An Alzheimer’s health care team may grow as the disease progresses to include a wide variety of health care providers, such as a:
•Primary care doctor
•Clinical social worker
•Home health aide
Because of this, it’s understandable that a 2013 study found that the health care costs associated with treating forms of dementia, like Alzheimer’s disease, are similar to the costs associated with treating heart disease and cancer.
From the caregiver’s perspective, all of that responsibility can be exhausting, says Mary O’Hara, LCSW, a clinical social worker and assistant director of education at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine in Evanston, Ill. “Even though caregivers are leading that health care team, there are so many services they can rely on and consult with,” she says. Consider these support services as extensions of a health care team: a clinical social worker, a care manager, and a caregiver support group, such as those offered by the Alzheimer’s Association.
As a caregiver and advocate for a loved one with Alzheimer’s, it’s important to plan ahead when working with his or her Alzheimer’s health care team.
“As hard as it is to have a discussion about the future, it’s so important to have it sooner rather than later because at a certain point the person with Alzheimer’s can’t be a part of those conversations in the same way,” O’Hara says.
Noble adds that setting treatment goals in the early stages of Alzheimer’s can make it easier for the entire health care team to be on the same page. “The caregiver can play an important role in saying, ‘Here are the general principles that this person lives their life by, and here is what they want to happen for them,’” he says.
Once the disease advances, the role of the caregiver increases in scope because he or she has to speak for the person with Alzheimer’s. “You definitely are the person’s voice when he or she no longer has that voice,” O’Hara says.
Making the Most of Every Appointment
It’s important for you to go with your loved one to all medical appointments with the health care team. To get the most out of each visit, take some time beforehand to write down your questions and concerns about your loved one’s symptoms and behavior.
Noble says it’s helpful if a caregiver can bring up concerns like, “Here’s a list of what’s changed since the last time we saw you” — and he adds that there’s no such thing as a silly question. Unless you or your loved one specifically addresses any new problems, they may not be on the team’s radar.
Some common issues can be easily handled. For instance, the Alzheimer’s doctor can ease an upset stomach related to Alzheimer’s medications by modifying the dose. After new questions and concerns are addressed, Noble suggests focusing on a goal-oriented discussion.
O’Hara says appointments are also a great opportunity to get referrals for additional help or resources. Questions like, “Are there any suggestions to help with this behavior?” or “Is there anyone else I can talk to?” can get the ball rolling. If a health care provider can’t refer you directly to someone who can help, he or she may be able to recommend a social worker or local organization.
At the end of each appointment, ask the health care provider to recap the important points. Write down any changes to the treatment plan or follow-up steps that are needed.