Coping With Early-Onset Alzheimer’s

Alzheimer’s disease, the most common form of dementia, generally affects the memory, thinking and behavior of people age 65 and older. But the Alzheimer’s Association reports that about 5 percent of the 5 million U.S. Alzheimer’s patients have developed early-onset Alzheimer’s, typically in their mid-40s to early 50s. Currently, an estimated 200,000 Americans have early-onset Alzheimer’s.

Gerontologist Dr. Diane Darby Beach, who has worked nearly 30 years in the Alzheimer’s field, notes that the prevalence of early-onset Alzheimer’s is increasing in part because the disease is being diagnosed better overall. She has worked with a number of early-onset Alzheimer’s individuals and their families and understands the unique challenges of coping with the disease while a person is still in the prime of life.

“Although the symptoms of forgetfulness and loss of short-term memory, judgment and abstract thinking are the same as later-onset Alzheimer’s, early-onset patients get a lot worse a lot earlier,” Dr. Darby Beach said. “Early-onset Alzheimer’s progresses faster, and we don’t know why. The average person lives for eight years with Alzheimer’s—early onset is a little less at roughly five or six years.”

Since healthcare providers tend not to look for Alzheimer’s in younger individuals, an accurate diagnosis can be elusive and symptoms credited to stress or fatigue. Researchers have not pinpointed the exact cause of Alzheimer’s, yet certain genes may contribute to the cognitive-decline condition. “If you have a first-order relative like a mother, father, sister or brother who has early-onset Alzheimer’s, then you have a 50/50 chance of getting early onset,” Dr. Darby Beach explained. “We haven’t been able to prove a direct genetic link with later-onset Alzheimer’s.”

Challenges of Early-Onset Alzheimer’s

One of the biggest challenges of early-onset Alzheimer’s is that patients do not qualify for public health services and Medicare that older Alzheimer’s patients qualify for and receive. This leaves an early-onset individual and their family in a tough position.

Work and Finances

“Alzheimer’s is insidious and happens over time,” Dr. Darby Beach explained. “A person can hide symptoms for a while at their job, but then there comes a point where they can’t hide the disease. They get confused and start having a difficult time with completing normal activities on the job. Once an employer notices or there is a diagnosis, the employer tends to wean out the employee pretty quickly because of liability issues, such the employee falling or accidentally hurting somebody at work.”

When a person with early-onset Alzheimer’s loses their job and cannot return to the workplace, it creates a critical gap in the individual’s or family’s finances and day-to-day stability. In addition to battling a progressive disease, the ill patient can struggle with depression, anxiety and a sense of failure in not being able to work and meet monetary needs.

Family Relationships

Another tough dynamic of early-onset Alzheimer’s patients is that many are still raising their children. The healthy spouse or partner is pulled in several directions, often trying to still work outside the home and oversee their loved one’s care. This is where diligent self-care, respite breaks and time alone with the children during which they are not taking care of the Alzheimer’s spouse are key for the caregiver spouse.

Dr. Darby Beach, who wrote her doctoral dissertation on the effects of Alzheimer’s on children, pre-adolescents and adolescents, shares advice for families of early-onset individuals. “What happens is that the healthy spouse becomes totally focused on the person with the disease and doesn’t realize how life has gotten away from them,” Dr. Darby Beach shared. “You have to remind the caregiver partner to take care of themselves, whether that entails going to a support group or just making sure that they’re still spending time with the children or with friends and enjoying the activities they normally did.”

The effect of early-onset Alzheimer’s on a person’s children has an upside and a downside as the kids adapt to the changing needs in the family. “The disease really impacts children, who feel neglected by their parents who are caught up in dealing with the disease,” Dr. Darby Beach said. “But there are some positive impacts, too. These kids get more selective about their friends. They won’t just bring anybody home; the friend has to be someone more sensitive. The kids themselves become more sensitive to others and have more empathy. And most of the time, the siblings bond more with each other. So the disease’s effect on children goes both ways. It’s positive and negative.”

Learning How to Cope

As the stages of Alzheimer’s advance, Dr. Darby Beach recommends both patient and caregivers pace themselves and develop consistent self-care skills including keeping up with good nutrition and regular exercise. Making sure loved ones focus on what the early-onset Alzheimer’s person can still do is also key in coping with the disease. “Let’s say someone was a gardener and always kept up the garden,” Dr. Darby Beach suggested. “He may not be able to tend to it in the same way, but you could be out there digging and roto-tilling the holes, then he could put the plants in the ground. You just modify the activity.”

Dr. Darby Beach also stresses the importance of asking for help and leaning on a team of family members, friends and neighbors. “Ask other people for help,” Dr. Darby Beach said. “Rely on people at your church or synagogue and your neighbors. People want to help; it’s just that caregivers don’t tend to reach out and ask for help.”

To ensure better balance between caregiving responsibilities and self-care, many Alzheimer’s patients and their families work with professional in-home caregivers who can assist with everything from personal care and meal preparation to medication monitoring and transportation.

“Most people find having a professional caregiver gives everybody some relief,” Dr. Darby Beach explained. “When I’m working with families, I encourage them to use a home care agency—not to get a caregiver from church or Craigslist or other similar sources. Because there’s an issue with being licensed, bonded and insured, you’re much better off with hiring someone from an agency. If family members are reluctant, I always tell them, ‘It’s incredibly helpful to hire a professional caregiver so you’re not the hands-on caregiver all the time. Then you can become the spouse again, or you can spend time relaxing with the kids again.’”

Financial and Legal Considerations

Individuals with early-onset Alzheimer’s do not have access to the same disability resources as older adults, so it is important to be proactive about financial and legal matters. Because early-onset Alzheimer’s progresses rapidly, the sooner the planning can be done, the better.

“I encourage patients and their spouse or other loved ones to sit down with a financial planner who knows something about long-term care and figure out how to maneuver their resources—whether that’s taking equity out of the house, selling the house, examining their insurance and cash flow, and just planning ahead and having options,” Dr. Darby Beach said.

It is also imperative to secure advance care planning to cover future healthcare choices when the person with Alzheimer’s can no longer make competent decisions. Depending on state laws, an attorney may be needed to draw up legal documents that typically include a living will, durable medical power of attorney and do-not-resuscitate instructions.

Dr. Darby Beach also recommends visiting a few care facilities that could care for the loved one if needed. “I encourage people to do this earlier rather than later,” Dr. Darby Beach said. “It doesn’t mean you have to place your loved one in a facility tomorrow, but when something does happen, you have an option, because nobody makes great decisions when they are in crisis and scrambling to figure out what to do.”

Resources for Early-Onset Alzheimer’s

Although free resources for Alzheimer’s and dementia patients vary by community, a number of national and state resources are available. These include the following:

• Alzheimer’s Association: alz.org, 800-272-3900.
• State and local Alzheimer’s Association chapters.
• County and local dementia services.
• Dementia education classes.
• Alzheimer’s support groups.
• Local memory care facilities.

“It is really important to know you’re not alone,” Dr. Darby Beach added. “That’s why I encourage support groups and classes, because you’re with other people going through the same thing. There are also resources and programs for younger people—adolescent and pre-adolescent. Some companies have employee assistance programs that can help, too. If you have to take time off or take family leave to provide care for your loved one, don’t be afraid to use these resources.”