Imagine that instead of waking up in your own home one morning, you awaken in a foreign city where you don't speak the language fluently. A stranger bursts into your hotel room and starts trying to undress you and hustle you off to the shower. You panic: Where am I? Who are these people? What are they doing? "That's what it's sometimes like to deal with dementia," explains geriatric psychiatrist Richard E. Powers, MD, a member of the Alzheimer's Foundation of America's medical and scientific advisory board. The most common form of dementia, Alzheimer's, strikes 5.3 million Americans—with a 40% increase expected within the next 10 years. It's an incurable disease that takes its toll not just on the individual but on the entire family. Watching my own father and mother-in-law slip away inch by inch has been heartbreaking. But as I grieve for the people I once knew, I've come to realize the best thing any of us can do is to learn as much as possible. Whether you've just noticed your parent's occasional memory slips or are managing a new diagnosis, here's how to navigate the twisty road ahead.
Step One: Watch for Early Symptoms
While Alzheimer's unfolds differently for everyone, there are some common symptoms, such as difficulty solving problems or confusion with time or place. "Generally, short-term memory is lost first," says Esther Oh, MD, associate director of the Johns Hopkins Memory and Alzheimer's Treatment Center and assistant professor of medicine. "Your mom or dad may repeat stories or ask the same things over and over."
At this stage, the issue is whether or not your parent's absentmindedness interferes with daily living. "Watch out for changes that affect a person's ability to function, such as not recalling what was said at the start of a conversation or getting lost on the way to the store," says Robert Roca, MD, MHP, chair of the American Psychiatric Association's Council on Geriatric Psychiatry. Other telltale red flags include trouble with simple tasks, like leaving food on the stove, struggling to find the right words for objects or not paying bills.
It's not unusual for parents to not recognize there's a problem, downplay the situation or refuse to discuss it altogether. Approach from a position of concern ("I'm worried about you and want to see if we can get help") rather than confrontation ("I think you have dementia"). "The goal is to make sure they receive care," says Powers.
Step Two: Get a Diagnosis
Offer to accompany your parent to an appointment with her primary care physician. If she refuses, call the doctor and say something like, "I know you can't talk because of privacy laws, but I want you to know what's happening with my mom," suggests Oh. See if the doctor will ask your parent to sign a release permitting you to discuss ongoing care.
If you do go, make sure the doctor considers hidden problems. "We need to confirm a change in thinking ability is not due to an underlying medical condition," says Roca, who is also vice president and medical director of the Sheppard Pratt Health System in Baltimore. "For example, older adults are susceptible to sudden confusion caused by medication side effects or illnesses that mimic dementia."
Next, your parent will need a thorough workup from a doctor experienced in memory disorders, such as a geriatrician, neurologist or geriatric psychiatrist. This should include tests such as assessments for memory, language skills and problem-solving abilities as well as interviews with family members. CT or MRI scans may be ordered to identify brain changes like tumors, bleeding or small strokes, which can be indicative of some types of dementia, such as vascular dementia. Vision and hearing problems can contribute to confusion, so be sure your parent is up-to-date on these checkups.
Step Three: Monitor Safety
Even with early dementia, your parent may be able to do many things for himself. "Evaluate what tasks they can handle, such as household chores, and then support them only where they are challenged," says Laurel Coleman, MD, geriatrician at Wilcox Memorial Hospital in Lihue, HI. But beware of three critical areas that could spark larger problems:
Medication. Mistakes can have life-threatening implications, so examine your parent's prescription bottles. Ask your dad to tell you what he takes and why. Check the fill date, then look again in a week or two to see how many pills are left. If you find mistakes, consider setting up a weekly pill box.
Finances. "I've seen foreclosure because a mortgage was not paid by a person living with dementia," says Coleman. Try to sit alongside your parent as he or she does bills. Seniors are often targeted by scammers through the mail, over the Internet, by phone or in person, so look for unusual bills or withdrawals.
Driving. Pay attention to any unexplained dents and dings on the car. Call your parent's doctor if you're anxious. "I may request the person go to the DMV to take a road test," says Coleman. "When faced with this hurdle, many people voluntarily retire from driving or stop because they admit they've had incidents."
Step Four: Discuss Meds
Drugs approved for treating Alzheimer's, such as Aricept, Exelon, Razadyne and Namenda, may be used alone or in combination and could stabilize symptoms. "There's merit in trying these medications, though not everyone responds to them," say Michael K. McCloud, MD, clinical professor of medicine and geriatrics at the University of California, Davis. Because there's no way to know who will benefit, doctors often suggest a trial run of a few months. Typically, improvements in daily function are modest and may last about a year. Unfortunately, meds can have a negative impact (side effects such as diarrhea or dizziness). It's important to assess any other drugs your parent is taking and consider the potential interactions, benefits and risks of each one. "The conversation almost always comes around to 'What medications can we add?' whereas it should be 'What can we take away?' People often sleep better or are less agitated when we take them off a medication," says McCloud.
Step Five: Cope Day to Day
It's baffling and upsetting when parents start acting in ways you don't understand: Your previously mild-mannered mother curses at you. Your once well-dressed father stops bathing. "You have to play detective and try to figure out why the behaviors occur," says Laura Gitlin, PhD, director of the Center for Innovative Care in Aging at Johns Hopkins School of Nursing and co-author of A Caregiver's Guide to Dementia. Challenging behaviors can be triggered when people are anxious, uncomfortable or frustrated by the inability to express themselves. Maybe your mom is upset because she's in pain or there's too much noise in her environment. Perhaps your dad doesn't want to shower because the bathtub looks like a bottomless pit due to his cataracts. Or there are no grab bars in the tub so he's afraid he'll fall. Decoding what your parent may be feeling may help you prevent or diffuse the situation.
Never has patience been more important. "It may be easy to stay calm the first few times your parent asks the same question, but if it's repeated dozens of times your patience may wear thin," says Ruth Drew, LPC, director of family and information services with the Alzheimer's Association. "That's when it's important to take a deep breath and focus on the person, not the disease. When you see these behaviors as symptoms of a disease, you can learn to respond in a different way." For example, simplify how you communicate, because people with dementia have difficulty processing language. If you're helping your parent get dressed, ask: "Do you want the red shirt or the blue one?" Or set out a shirt saying, "Here's your favorite shirt." Bombarding a person with dementia with too many options can make him or her feel overwhelmed.
As dementia progresses, it's natural to feel loss. But instead of dwelling on what has been taken away, focus on what remains. The bond with your parent is not broken. My brothers and I are closer than ever to our dad, and my mother-in- law still finds pleasure in the presence of family. The truth does not go away, but you learn to embrace the present: When you hold your parent's hand, there's a sweetness in the moment. Not even dementia changes that.
Originally published in the June 2016 issue of Family Circle magazine.