1. How can I deal with my family member’s challenging behaviors without losing my patience?

People with cognitive impairment may exhibit a range of frustrating behavioral problems. These might include communication difficulties, becoming fixated on an idea or constantly repeating a question, aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment and wandering. Common causes of cognitive impairment include Alzheimer’s disease and related dementias, stroke, Parkinson’s disease, brain injury, brain tumor or HIV-associated dementia.

Various strategies can help you deal with challenging behaviors. In many communities, the Family Caregiver Support Program or another community organization offers classes and training sessions that teach skills useful in handling troublesome behavior. There you can receive information about your relative’s ability to understand and communicate. Joining a support group also can be helpful. A support group is a good place to share your frustrations and discuss coping strategies with people who are in the same situation, caring for their family members or friends. While many support groups meet in person, online and telephone groups also exist.

It’s important to remember that it’s the disease, not the person, causing the behavior. Anticipating that there will be ups and downs through the illness can provide important perspective to help, maintain your patience. Compassion and a sense of humor also may enable you to cope more effectively with difficult behavior.

FWH has fact sheets with helpful suggestions for how to manage stress, communicate effectively and safety-proof your home. These include:

To find a support group in your area or to join an online discussion, contact or visit online:

Family Caregiver Alliance
FWH manages a variety of online support groups and discussion boards.
www.caregiver.org Alzheimer’s Association
Provides reliable information and care consultation, caregiver training and classes, supportive services for families, and funding for dementia research.
www.alz.org/findchapter.asp Caregiver.com
This online resource locates in-person support groups in communities across the country.
resources.caregiver.com Eldercare Locator
Connects older Americans (60+) and their caregivers with the local Area Agency on Aging’s Family Caregiver Support Program, which offers classes and trainings, support groups and other services for caregivers.
eldercare.acl.gov Well Spouse
Locates support groups across the country for wives, husbands, and partners of the chronically ill and/or disabled.

2.  How can I help my family member if I don’t live nearby?

If you are helping an older or disabled family member who lives far away, you know that one of the most difficult and time-consuming tasks is coordinating care for that person. Whether you live an hour away, in another state or on separate coasts, finding resources, arranging services and coordinating your own visits and travel plans can be overwhelming. There are many options to be considered, and you’ll want to make informed, well thought-out decisions about your family member’s care.

The first step is to determine what types of services your family member needs. Educate yourself on the resources and services available in the community where your family member lives. Most information gathering can be done by calling the local Area Agency on Aging or by searching the Internet. Although every community is unique, there are similar kinds of services found throughout the U.S., such as adult day services, in-home care, and nursing homes.

If there are no close family members or friends who can help, a care manager can arrange and monitor hands-on services to help your relative. Care managers or social workers may be available through your relative’s local department on aging. Another option is to hire privately a care manager or other professional, such as a nurse, to help coordinate services and respond quickly to challenging situations.

Remember to obtain emotional support for yourself. It may be helpful to talk to friends or to find an in-person or online support group where you can talk about your caregiving challenges. Discussing your situation, letting your feelings out and listening to other points of view can provide some relief and help you to refuel.

Eldercare Locator
Connects older Americans (60+) and their caregivers with the local Area Agency on Aging’s Family Caregiver Support Program, which provides information about local aging services, support groups and other services for caregivers.
eldercare.acl.gov Aging Life Care Association (formerly National Association of Professional Geriatric Care Managers)
Geriatric care managers have expertise in overseeing the care of seniors and can do a thorough assessment of your family’s situation. They are typically paid out of pocket and their fees vary. This organization lists geriatric care managers near you:

3.  How can I get my family member to accept help?

While many services exist to help older people and adults with disabilities, the person who needs help may see the service as an invasion of privacy, a loss of independence or a waste of money. Many adults resist having strangers come into their home, do not want to think about attending an adult day program or consider moving into a senior housing community, for example.

Here are a few suggestions that others have found helpful in making these transitions easier. The first step is to listen to and acknowledge your family member’s fears and reasons for not wanting assistance. Express your understanding of those feelings. If possible, get your family member involved in choosing the in-home aide, adult day program or residential facility. Having a ‘say’ will help your family member to feel more comfortable with the decision.

Next, introduce the new assistance into your family member’s life gradually. For example, begin by having an in-home care aide come only a couple of hours each week, then add hours as your loved one builds a relationship with the worker. Similarly, you can also have your family member visit a day program once or twice or try a short-term or “trial stay” in a residential facility. Involving your family member’s primary care physician may be useful. Physicians are often seen as authority figures and your family member may be more willing to accept help that is required or “prescribed” by a doctor.

To help your family member maintain a sense of dignity and independence, express the need as yours, for your own well-being. You can explain that knowing someone else is with your family member when you are not there allows you to not worry. Make it clear that you are not abandoning him or her.

Keep in mind that as long as your family member does not have dementia or other memory loss, he or she has the right to make ‘bad’ decisions. Exercising this might make your role harder, but you cannot bully a family member into doing things he or she is not ready or willing to do. For more detailed information, read the following FWH Fact Sheets:

4.  What should I do to help get my family member’s legal and financial affairs in order?

When a family member has dementia or another disabling health condition, it’s easy to feel overwhelmed by the many legal and financial questions that can arise. There are questions like: Who gets to make decisions about their financial and personal affairs? When is it time to consult with an attorney? What is the difference between conservatorship, guardianship and durable power of attorney? How are we going to pay for long-term care?

FWH has a number of fact sheets that can help answer these questions:

If you are looking for an attorney, you can ask your local Area Agency on Aging for a legal consult, you can call the senior legal hotline in your state, or you can hire an attorney who specializes in eldercare law.

Eldercare Locator
Connects older Americans (60+) and their caregivers with the local Area Agency on Aging’s Family Caregiver Support Program, which provides information, assistance, and other services to caregivers, and community-based organizations.
eldercare.acl.gov National Academy of Elder Law Attorneys (NAELA)
NAELA maintains a comprehensive list of elder care attorneys whom can also provide mediation services for families.

If you still have questions that are not addressed here, our online Caregiver Inquiry form is getting reassessed for security of your information; in the meantime you can call us at (747) 229-6047.