New Report Highlights the Stress of Long-Distance Caregiving

Caregivers who live far from loved ones face health problems and higher costs, the Alzheimer's Association says

The nation's growing Alzheimer's disease epidemic is affecting more American families every day, both emotionally and financially. According to the Alzheimer's Association's benchmark annual report, released Tuesday, more than 5 million Americans are living with the disease and 15.4 million family members and friends are caring for them, providing 17.5 billion hours of unpaid labor valued at $216 billion. The 2013 Alzheimer's Disease Facts and Figures report finds that 1 in 3 seniors nationwide now die with dementia or Alzheimer's — and there is still no cure and no medication to slow or reverse the symptoms.

(MORE: What Lies Ahead for the Nation of Caregivers?)

"Unfortunately, today there are no Alzheimer's survivors," says Harry Johns, president and chief executive of the Alzheimer's Association. In 35 years, when baby boomers range in age from 84 to 101, the association estimates that more than 16 million boomers will be living with the disease. The nation's current longevity trajectory overall will have a profound effect on the epidemic: By 2017, the country will have 680,000 centenarians, an increase of 750 percent from 2007. One in 50 boomer women are now expected to reach age 100.

There are other ramifications as well: Almost 20 years ago, for example, a child with Down syndrome had an average life expectancy in the early-to-mid 30s. Today, adults with Down syndrome live, on average, until age 55 or 60; yet, by age 40, almost 100 percent of the group will have developed the plaque deposits in the brain that are the most typical indicator of Alzheimer's risk, primarily because Down syndrome makes the body age more rapidly. By age 65, about 75 percent of adults with Down syndrome will have developed Alzheimer's, six times the rate of the general population.
The Cost of Caring From a Distance
Along with updating key facts about Alzheimer's in the United States, this year's report took an in-depth look at long-distance caregivers of victims and discovered increasing burdens. "Individuals who live a substantial distance from their loved ones face unique hardships," says Beth Kallmyer, vice president of constituent services for the association.

"One of the most difficult journeys for a caregiver to take is with a loved one with Alzheimer's," says Dr. Rosemary Laird, medical director at Health First Aging Institute in Florida. "It is hard but essential to prepare yourself for the day when your spouse or parent will not remember your birthday, your name and finally your face. We counsel that 'memory may fade but love never does,' even though the brain can no longer grasp these details."

About 2.3 million Alzheimer's caregivers live at least an hour from their loved one — 15 percent of all such caregivers — and they annually spend an average of $9,654 to cover care-related costs, including travel, in-home services and alternative living situations for patients, like memory care facilities. Overall, long-distance caregivers spend almost twice as much out of pocket each year as those who live closer to loved ones. While only about 20 percent of long-distance caregivers consider themselves to be a primary caregiver, most are directly involved with family care decisions and 70 percent perform day-to-day manual caregiving tasks when they are on the scene.
Expenses and communication gaps are the primary challenges facing long-distance caregivers, says Nora Jean Levin, executive director of the nonprofit organization Caring From a Distance. They struggle to monitor warning signs of advancing decline and maintain contact with doctors, aides and other health-care professionals. Further, in their common role of what the new report calls "coordinator of care," they must locate, arrange and monitor their loved ones' various care and social service needs. That's just as hard as it sounds for people not on the scene each day, especially because many patients with dementia either play down or exaggerate their health problems, the association reports.
(MORE: Caregiver Depression: Unspoken but Traumatic)

Help for Long-Distance Caregivers

It's already well established that family caregivers, particularly those who look after loved ones with Alzheimer's or dementia, face a high risk of ill health because of the stress of their role. According to a UCLA study recently published in the International Journal of Geriatric Psychiatry, 50 percent of dementia caregivers report some level of depression. Caregiving journeys that can last as long as 20 years take a high toll: The new report says Alzheimer's and dementia caregivers, both local and long-distance, had $9.1 billion in additional health care costs of their own in 2012.

Some long-distance caregivers actually report even higher levels of stress than those who are on the scene, due to feelings of helplessness from trying to figure out what's needed and what can be done, and from the pressure of needing to put their lives on hold and respond in person when acute crises arise. Like other caregivers, those who live far away often use vacation time and sick days to tend to caregiving duties, adding to their stress.

Long-distance caregivers also face higher rates of family tension than others, according to research published in the journal Clinical Gerontologist and cited by the new report. These disputes typically result from disagreements with siblings about care decisions or from resentment on the part of family members closer to home that long-distance caregivers are not doing enough. In other words, when you're not on the scene, it's easier to be second-guessed.

Fortunately, a range of new services address caregivers' support needs and help them recruit what I call the "ground troops" they need to perform everyday tasks. At online "matchmaking" sites like CareLinx, Care.com, CareScout and Caring.com, caregivers can create a profile of their in-home needs and find professional help on the ground or search for alternative living facilities that meet their needs and budgets. Volunteer communities, powered by sites like LotsaHelpingHands.com, can help families coordinate assistance from local friends and loved ones. And a growing number of support groups are cropping up to help caregivers cope with their emotional burdens, as well as get a much-needed break from their duties to focus on their own needs.

(MORE: How Online Volunteers Support Caregivers)

The Alzheimer's Association offers caregivers a variety of free resources, including a 24-hour-a-day helpline for expert advice, (800) 272-3900; a social networking site, ALZConnected, to share questions, insights and support; and Alzheimer's Navigator, a tool that draws on a substantial database of housing and care options, services and legal experts to help families evaluate their needs and develop an action plan.

Tech to the Rescue?
Technology can also be a boon for caregivers. At the annual American Society on Aging conference held in Chicago last week, a number of tech companies displayed their latest products for Alzheimer's patients and caretakers. ComfortZone, a GPS-enabled location management service available through the Alzheimer's Association, allows families to create a "geofence" for loved ones with dementia, a perimeter that will instantly alert a caregiver via email or text when a patient has wandered too far from home. Since 60 percent of all Alzheimer's patients will wander at some point, such devices (and there are others on the market) bring families valuable peace of mind.

(MORE: What's Next in Caregiving Technology)

Caregivers can use technology to monitor and manage their own health, too, which may be well worth the investment considering the risks. The Basis wristwatch, just one of a variety of new devices, monitors your heart rate, motion, galvanic skin response, skin and ambient temperature and sleep habits, then syncs all the data to its cloud service, where you can browse the information or arrange to send it to your doctor. The Fitbit can clip onto your belt or pocket and track your sleep patterns, as well as your daily movements and calories burned, to make sure you're getting sufficient exercise and rest, two crucial pillars of caregiver health, whether you live downstairs from your loved one or across the country.

Sherri Snelling
By Sherri Snelling
Sherri Snelling is a gerontologist, consultant and national speaker specializing in caregiver wellness. She is CEO and founder of Caregiving Club and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.@sherrisnelling

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