Long-Distance Caregiving for Alzheimer's Often Poses Difficult Challenges
In 2000, my parents moved back to West Texas after my mother’s chronic obstructive pulmonary disease worsened due to ozone levels and allergies in a major city in Central Texas. On the day they had the moving van in front of their house, I was driving off to start a new job in East Texas. Whereas we lived in the same subdivision in Central Texas, we now had a nine-hour drive (unless we met halfway). And although the move did technically move my parents closer to my brother, he still was a long-drive away since he lived in Colorado.
So when Mom’s early memory loss started to rear its ugly head in 2002, our family began to be pushed and pulled in ways no one had anticipated. When Mom was in a crisis, I couldn’t just jump in my car and be over to their house quickly. Instead, I had to try to solve the issues over the phone. And that proved to increasingly be frustrating and futile. And neither my brother nor I could drop everything related to our careers to come to the rescue.
It turns out that my brother and I were not alone. A special report in the 2013 Facts and Figures put out by the Alzheimer’s Association reports that about 30 percent of caregivers who were participants in key studies about long-distance caregiving cared for someone with Alzheimer’s disease.
These studies have found that caregivers typically live at least one or two hours away from the care recipient. The report pointed to a study commissioned by the National Alliance for Caregiving and AARP that had one component that focused on travel times for caregivers who provided care for someone 50 or older who had Alzheimer’s disease. These researchers found that while 23 percent of the people with Alzheimer’s lived with the caregiver and 47 percent of caregivers lived within 20 minutes, others had much longer travel times. Fourteen percent travelled anywhere from 20 minutes to one hour to check on the loved one with dementia while nine percent had to travel at least two hours to help the elder. Six percent of the caregivers spent 1-2 hours in travel time when going to see their loved one who had Alzheimer’s. Most of these caregivers were helping a parent, parent-in-law, grandparent or grandparent-in-law who had dementia.
The Alzheimer’s report also looked at factors that have an effect on geographic separation between the caregivers and the person with Alzheimer’s. The report points to higher levels of formal education of either the parents or the adult children contributing to living at a distance. Additionally, parents who family size seems to make a difference, since in large families at least one adult child lives nearby.
The studies also found that middle-age children live farther from their parents than young adult children to do. However, parents who are older than 80 often live nearer to their children than elders who are younger. Additionally, adult children who have higher incomes often live farther from their parents than adult children with lower incomes.
As my brother and I quickly learned, being in a long-distance caregiving situation brings special challenges. People in this role often have to be the coordinators of care by finding, coordinating and monitoring the services provided to the elder. However, people who are caregiving from a distance have greater difficulty assessing the loved one’s physical and mental status. We can’t go with the love done to health care visit that are planned, much less the emergency room visits (such as the ones that my mother often had due to her COPD).
This distance caregiving can cause strife among the family, which we, in deed experienced because my father didn’t know how to deal with Mom’s health issues effectively. Long-distance caregivers often have psychological distress, which I definitely experienced, eventually turning to a therapist for help. I also ran afoul with my boss because of the additional stress I was under because it was affecting my job performance.
To deal with these situations, the Alzheimer’s Association recommends using online and computer-aided programs by long-distance caregivers. In addition, they need to find a professional family consultant who can serve as a liaison. The Alzheimer’s Association recommends getting information about elder-care attorneys and financial planners where the elders live. They also need to develop a comprehensive safety plan that can be monitored easily by nearby caregivers as well as long-distance caregivers.
Caring for a loved one who has dementia is hard enough, but doing it at a distance can be fraught with more danger and more stress. Look for ways to build a caregiving system around the loved one with dementia that can monitor any issues – whether health or safety – that might come up.
Primary Source for This Sharepost:
Alzheimer’s Association. (2013). 2013 Alzheimer’s Disease Facts and Figures.