Currently, more than six million Americans are long-distance caregivers. Caring from a distance for a person with Alzheimer's disease can be especially difficult. Concerns about the person's safety, nutrition, health and care may seem overwhelming. As a caregiver, you may feel guilty and anxious because you cannot be there every day to see how the person is doing. However, long-distance caregiving can work if you put together the right mix of services and ongoing coordination and support.

Visit the person with Alzheimer's disease to determine what kind of assistance he or she may need. Make the following observations:

• Is there appropriate and adequate food available?
• Is the person eating regular meals?
• What is the condition of the living environment? Has it changed?
• Are the bills paid?
• Do friends and relatives visit regularly?
• Is the person maintaining personal care routines such as bathing and grooming?
• Is the person still able to drive safely?
• How is the person's general health?
• How are medical appointments scheduled?
• Who accompanies the person to the doctor and/or sees that medical visits are made?
• If the person is on medication, can they take it without supervision?

If you are unable to answer these questions, the person's doctor, neighbors, family members and friends can be good sources of information.

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Few long-distance caregivers are able to spend as much time with the person with Alzheimer's as they would like. The key is to make periodic visits and use your time effectively.

• Make appointments with the person's physician, lawyer, and financial adviser during your visit so you can facilitate the making of important decisions.
• Meet with neighbors, friends, and other relatives so they can share their observations about how the person is doing. Ask if there have been any behavioral changes, health problems, or safety issues.
• Take time to reconnect with the person by talking, listening to music, going for a walk, or doing other activities you enjoy together.

Click here to see more information on Activities.

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There are many individuals and organizations that can help you locate and arrange appropriate services for you and the person with Alzheimer's.

The New York Chapter of the Alzheimer's Association provides information on caregiving, referrals to local services, a Helpline, and support groups. Click here to send an e-mail to our Helpline, or call 800.272.3900 and ask to speak with a Helpline counselor.

The New York City Chapter of the Alzheimer's Association has put together an extensive database of the Alzheimer's resources in the New York area. The database is organized by specific types of programs and services, such as Adult Day Services, Diagnostic Centers, etc. Click here to search the database.

Consider hiring a geriatric care manager to help assess the individual's needs, identify local services, and work with physicians, attorneys, and other professionals to oversee and coordinate care. Click here to go to the website of the National Association of Professional Geriatric Care Managers. You can also call them at 520 881-8008.

The Eldercare Locator is a free service provided by the U.S. Administration on Aging to help find local resources such as adult day programs, respite care elder abuse/ protective agencies, Medicaid/MediCal information, and transportation. Click here to go to their website. You can also call them at (800) 677-1116.

Home health care workers can be hired to help the person with bathing, toileting, preparing meals, and taking medication. Click here for a listing of Home Care Agencies in the New York City Area.

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Establishing an informal support system can help ensure the person's safety and give you peace of mind.

Family members and friends can provide companionship. Ask them to visit once a week or so, depending on how far away they live.

Neighbors can regularly check on the person with Alzheimer's disease. Ask if they will remain alert to anything unusual such as the smell of smoke or the sound of an alarm coming from the person's home. Community organizations such as churches, synagogues, neighborhood groups, and volunteer organizations often provide companion services.

Create a list of the names and phone numbers of people you can call if you are concerned about the patient. This might include names and numbers of neighbors, the doorman, the local police department, the patient's doctors, etc.

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Sometimes you may need to take time off from work to resolve a crisis, accompany your loved one to a doctor's appointment, or address a pressing legal or financial matter. With more than three million working Americans caring for elderly parents, both government agencies and private businesses are trying hard to meet the needs of caregivers. The Family and Medical Leave Act (FMLA) entitles eligible employees to take up to twelve weeks unpaid leave. Check with your employee benefits department to see if you are covered by FMLA. Also be sure to ask them about the benefits provided by your state.

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The decision to move the person to your home is influenced by many factors. Here are some things to think about before moving the person into your home:

• Does he or she want to move? What about his or her spouse?
• Is your home equipped for this person?
• Will someone be at home to care for the person?
• How does the rest of the family feel about the move?
• How will this move affect your job, family, social life and finances?

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The decision to move the person to your home is influenced by many factors. Here are some things to think about before moving the person into your home:

• Does he or she want to move? What about his or her spouse?
• Is your home equipped for this person?
• Will someone be at home to care for the person?
• How does the rest of the family feel about the move?
• How will this move affect your job, family, social life and finances?

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Respite services provide options for caring for the person with Alzheimer's when the caregiver is unavailable or needs a break. There are two types of services: residential, where the patient temporarily moves to a facility, and in-home, where a care worker temporarily supervises the patient at home. Click here to find a respite program in your area.

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Whether the patient lives in an assisted living or residential care facility, it is important to maintain ongoing communication with the care staff and friends who visit regularly. Here are some suggestions:

• Work with the managing nurse and physician. Agree on a time when you can call to get updates on the person's condition.
• Call family, friends, or other visitors and ask for their observations.
• When you visit, meet with staff members who care for the person the most.

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The primary caregiver may be a spouse, sibling, adult child or another relative who lives with or close to the person with Alzheimer's. As a long-distance family member, supporting the primary caregiver is one of the most important things you can do. Here are some ways to help:

• Stay in close touch with both the caregiver and the person with Alzheimer's through telephone calls, cards, e-mail, etc.
• Recognize that the primary caregiver must make most of the important care decisions. He or she provides the daily care and is usually the best person to decide what needs to be done.
• Take on caregiving tasks. You can help by handling bills, completing insurance forms, making phone calls, and finding out what support services are available in the caregiver's community.
• Plan periodic visits to give the caregiver a break. You can spend time with the individual, run errands for the caregiver and participate in planning for care.

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It is possible that the primary caregiver may feel resentment toward you for living far away or believe you are not helping enough. And you may disagree with the caregiver's decisions or feel shut out. To minimize conflicts, try to acknowledge these feelings and work through them. Here are some suggestions:

• Have a family meeting. Talking about caregiving roles and responsibilities, problems and feelings can help ease tensions. You may want to consult with a professional counselor or clergy.
• Recognize differences. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks.
• Share caregiving responsibilities. Make a list of tasks and include how much time, money, and effort may be involved to complete them. Divide tasks according to the family member's preferences and abilities.
• Continue to communicate. Periodic family meetings or conference calls keep the family up-to-date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer's and the caregiver, and decide if any changes in responsibilities are needed.
• Be aware of caregiver stress and sensitive to the needs of the primary caregiver. Offer as much assistance as you are able to provide to prevent caregiver burnout.

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Click here to go to the Planning Ahead section of this website for information about Legal and Financial issues, education meetings at the New York Chapter of the Alzheimer's Association, and links to our resource database.

Source: 2007 Alzheimer's Disease and Related Disorders Association, Inc.

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