Tips for Caregivers When a Loved One with Dementia Lives Far Away

Caring for an aging parent, relative, or friend with dementia or Alzheimer's disease has its rewards but comes with many challenges, too—especially if you live miles away from your loved one. How can you really know if he or she is doing well or needs assistance if you aren't there? More and more people are grappling with this issue in our increasingly mobile society.

Not only are individuals helping out from a distance, but a recent study also reports that about 23% of long-distance caregivers are the sole primary caregivers for an older relative. Some general guidelines can help you find ways to help your loved one, even when you can't be there in person. The keys to successfully managing your role as a long-distance caregiver are:

  • listening to your loved one
  • taking full advantage of visits
  • realizing that you're not alone
  • taking care of you

Listening to Your Loved One with Dementia

When you're developing a strategy for long-distance caregiving, remember to listen to the one voice that's often overlooked: the person needing care. Including him or her in decision-making as early as possible can make everything go more smoothly. Have a frank discussion about issues like housing, long-term medical care, and advance directives and other legal concerns, and respect your loved one's feelings and preferences as much as possible. It might help to explain that your goal is to maintain his or her independence, not limit it.

To help your older relative stay in touch with you, provide a cell phone if he or she doesn't already have one. Plan on spending a few minutes explaining the phone's features and programming some important numbers into the speed-dial function.

Taking Full Advantage Of Your Visits

If your loved one appears to be slipping mentally or physically, schedule a visit as soon as possible. Before you go, make a list of tasks you need to accomplish. These may include taking your parent to doctor appointments and other health providers and identifying social service or volunteer agencies who can help now or in the future with meal delivery, transportation services, adult daycare/respite care, home health services, and housekeeping.

Once there, look for signs of how your older relative is doing and how much assistance they need.

  • Is the place dirty and disorganized?
  • Are there piles of laundry and unopened mail lying around?
  • Has he or she been ignoring personal hygiene?
  • Is there enough food in the house?

Also, look around the residence to check for potential hazards like darkly lit stairwells, loose rugs, or bathrooms without handrails. Your visit is also a good time to find and make copies of important financial, medical, and legal papers. Creating a folder—physical as well as online—can help you organize all of the paperwork. Medical paperwork should include

  • names and phone numbers of your loved one's doctors
  • medical release forms
  • lists of medications and dosages
  • medical test results
  • hospital bills
  • general information about his or her health conditions

Also keep a record of your older relative's social security number, bank account, credit card numbers, insurance policies, deeds, investments, and wills (including a living will and other advance directive. Finally, though you'll want to be as efficient as possible when you visit, it's also important to schedule some time for both you and your loved one to simply relax. There's no need for you to constantly be in a caregiver role, so whether it's an activity as simple as a stroll through a park or sharing a slice of pie at a local diner, take a moment to exhale and enjoy each other's company.

You're Not Alone

Though you may be the primary caregiver and you're usually far from your loved one, that doesn't mean you're alone, and it's important to reach out to individuals and organizations that can assist you. If you can involve other family members, it will make everyone's share of the responsibilities a little lighter. Keep the matter focused on care issues—not debates between siblings—and let everyone participate in the dialogue.

You should also identify your loved one's neighbors and friends and get their contact information. People who see your loved one regularly can offer valuable insight into how he or she is doing physically and mentally. They can also alert you if they notice changes in your parent's behavior or health status. Make sure these neighbors and friends have your contact numbers and encourage them to call immediately if anything seems amiss.

If you find that you need professional help for a parent or relative with dementia on a regular basis, consider hiring the services of a geriatric care manager. He or she can objectively evaluate your loved one's needs, arrange for services, and monitor how well these services are working, taking an immense weight off the shoulders of a long-distance caregiver. Trained as social workers, nurses, or gerontologists, these professionals typically charge for their services, although those employed by a nonprofit or government agency tend to be less expensive. To locate a geriatric care manager, contact the National Association of Professional Geriatric Care Managers (520.881.8008; www.caremanager.org).

Great resources for finding local services on your own include the government's Eldercare Locator (800.677.1116; www.eldercare.gov). You might also want to check out local religious groups and senior centers.

Taking Care of You

In the midst of all the things you need to do, take time to remember another person who needs support: you. When you're in a caregiver role—even if it's a long-distance one—there's immense pressure on your physical, mental, and emotional resources as well as your time and money. Trying to manage that stress is difficult, and many long-distance caregivers quickly feel powerless, guilty, angry, frustrated, and depressed.

To alleviate some of the stress, take the time to assess what your strengths and weaknesses as a caregiver might be. Are you adept at juggling financial and legal issues, or are you better at doing Internet research and calling around to arrange for social services?

Do what you can and ask for help—including professional counseling or therapywhen you need it. Also, talk to members of your own immediate family as well as supervisors at work about your caregiver role. Most caregivers are employed full-time, and research shows that about half of long-distance caregivers devote one full day per week to managing their loved one's care. If the demands become overwhelming, you may be eligible to take up to 12 weeks of unpaid leave as authorized by the Family and Medical Leave Act (FMLA).

You can also help ease stress by getting involved in a caregiver support group where you live. These groups offer a way to share concerns, information, and resources with other people who are going through the same issues you are. If there's no group in your area, online caregiving forums and chat rooms can serve as a support system. Check out the support groups offered by your local chapter of the Alzheimer's Association or the online caregiver group run by the Family Caregiver Alliance (800.445.8106; www.caregiver.org).

Publication Review By: Peter V. Rabins, M.D., M.P.H.

Published: 21 Mar 2011

Last Modified: 23 Jun 2011