You may not need or choose to work with all of these types of providers—but it can be helpful to have a few names of experts from various fields ready as your loved one’s condition shifts or progresses. Oftentimes, a person’s primary care physician can make referrals to the ideal subspecialists for overseeing their care, Dr. Porter notes.
7. Track their symptoms and behaviors over time.
There are many potential symptoms that people with Alzheimer’s may display at various stages, and as noted, they vary from person to person. So monitoring changes in your loved one’s behavior as time goes on—for instance, an increased tendency to forget words or phrases, or greater lapses in judgment—and keeping notes with these details can help their medical providers tailor care. “This is also important information to share with relatives who may not be around to witness behavior changes themselves,” Comer says. “All caregivers involved should be on the same page.”
It’s also important to take note of any abrupt changes. Alzheimer’s generally progresses very gradually, Dr. Edgerly says. But in some people, a medical setback can propel them quickly into what looks like late-stage Alzheimer’s but is actually another health issue or even a side effect of a medication, she says. So if you ever notice a sudden shift in your loved one’s mental or physical status, that’s especially important to bring up with their doctor.
8. Honor their independence as long as you can.
“Your top priority when it comes to providing care is to help prolong their dignity and independence as long as possible,” Comer says. So instead of jumping in and taking over all tasks and responsibilities, which can confuse or agitate the person with Alzheimer’s, “think of it more as if you’re running interference for them,” she says.
For example, “You might pack an extra set of clothes when you go to a dinner party together in case of an accident, or make sure they get seated beside someone at the table who knows the situation and is sensitive to it,” Comer explains. “You don’t want to keep them from living their life and being socially engaged; you just want to plan ahead and anticipate any issues you can.”
Putting a few extra guardrails around their finances, too, can let them hold onto their ability to spend as they see fit while reducing their risk of falling victim to a scam—which Dr. Edgerly says is all the more likely in folks with dementia. She recommends having some visibility into their bank accounts, if you can, and setting up notifications for credit-card purchases above a certain dollar amount, so that you’ll be aware of suspicious or out-of-the-ordinary spending.
You might also help your loved one work with a lawyer to prepare a medical power of attorney while they can still make decisions with their best interests in mind. This document legally allows someone that they designate (like you or another family member or friend) to sign off on things like their treatment and end-of-life care in a way that honors their wishes whenever they’re no longer able to do so themselves.
9. Don’t forget the little things that can brighten their day and make them feel more like themselves.
It’s easy to get caught up in the absolutely necessary stuff, like ensuring your loved one eats, bathes, sleeps, and is in as little pain or distress as possible (totally valid). But remembering the smaller things, like their hobbies and passions, or the music or foods they really enjoy, can make the difference between them having a bad versus a good day. “It’s similar to how you might tend to yourself,” Dr. Edgerly explains. For instance, you might self-regulate by going on a walk or putting on your favorite song—but folks with dementia can’t do that for themselves, she says. So you want to lend them a hand by keeping them connected to the activities, foods, music, and whatever else will make them feel seen and heard as well as bring them joy, she says.
If you need more guidance, consult an expert to put together a care plan for your loved one.
If you feel lost and overwhelmed, it can be beneficial to tap a social worker or geriatric care manager (through the Alzheimer’s Association or other support agencies) to help facilitate and organize a care plan, Dr. Porter says. Also worth noting: The Alzheimer’s Association has a free 24/7 helpline staffed by dementia care experts who can help with a wide range of issues. “When you’re going through it yourself, it can be really hard to feel confident that you’re making the right decision,” Dr. Edgerly says. Even she had moments of doubt when she was caring for her own mother. “To be able to say, ‘Hey, I’m doing this or that. Does this sound reasonable?’ That’s worth so much,” she says.
Equally important is tending to your own needs, too. “You have to preserve your mental health, and continue exercising, eating well, and sleeping enough,” Comer says. “Providing Alzheimer’s care is a years-long road, and you can’t do it well without taking care of yourself.”
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