Support Groups Are Essential to Caregiver Wellbeing

by Rich O’Boyle, Publisher
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Sometimes the emotional side of Alzheimer’s Disease is just as hard to deal with as the physical side. You may have fears and concerns or feel overwhelmed by your situation. Everyone has different ways of dealing with these feelings. Your attitude about your Loved One’s condition, your expectations, and how well you cope with the disease can play a big part in the quality of life for both you and your Loved One.

We tend to rely on formal and informal networks of friends, family and professionals to help us through hard times. In general, having close and supportive ties with friends and family seems to have a positive impact on health. The people you’re closest to are the most likely to give you the support you need. Even so, you may have trouble asking for help. If you do have trouble asking for help, think about specific ways in which people can help, and start by asking one person to assist you with the easiest thing on the list. You may be surprised at how glad people are to help.

Sometimes only a professional counselor or other people facing the same disease can relate to the feelings and caregiving challenges that you are facing. A good counselor can help you cope with sadness, depression, and feelings of being overwhelmed. If you think counseling might be right for you, ask your doctor or other healthcare provider to recommend someone in your area. With a complex, poorly understood and relatively rare condition like Alzheimer’s Disease, your peers will have some of the best advice and deepest understanding of what you are going through.

Join a Support Group

Healthcare research has shown that support groups – groups of people with the same condition who get together on a regular basis to discuss their illness – often help people cope better with their condition. For example, a study looking at women breast cancer survivors revealed that the women who participated in a support group lived longer and had a better quality of life than similar women who did not participate in the group. The women in the support group learned coping skills and they shared their feelings with other women who were in the same situation.

You will need to make time in your schedule to regularly attend a group. It will be one of the most important things you do for yourself. The camaraderie and relief from isolation are essential to maintaining your emotional balance and wellbeing. "Caring for the caregiver" is one of the first – and most important – lessons that you will learn. Join a group early when the disease is diagnosed in your Loved One.

If you are interested in a support group, ask your doctor or other healthcare provider about available groups for Alzheimer’s Disease. Ask your local Alzheimer’s group for a list of local support groups. Churches and synagogues, and other houses of worship, hospitals, home health agencies and senior centers, might also have groups that could offer you the social support you need. The Eldercare Locator (1-800-677-1116) maintains a directory of support groups and services. Your county’s Area Office on Aging or university-based Alzheimer’s Disease Research Center maintains lists of local resources.

ElderCare Online's Neighborhood Networks contains links to state, county and local resources, including Alzheimer's Disease support groups and Area Agencies on Aging. We have listings for all fifty states and the District of Columbia.

When you consider joining a support group, you should look for one that:

  • provides a safe, secure and welcoming environment
  • respects your confidentiality
  • encourages respect among members
  • is convenient to your home or place of work
  • offers several meeting each week that fit your schedule
  • is run by both experienced professionals and supportive peers
  • accesses a network of guest speakers and professionals

Support groups are also a valid option if you have recently finished school and are wondering “What can I do with a Psychology Certificate?” An Industrial/Organizational Psychology Certificate Program can train individuals on organizational behaviors, legal issues in Healthcare Leadership, and strategic planning in Healthcare Diversity. Using these skills to assist others struggling with behavioral or health issues can make a positive influence. Though anyone is free to join these groups, the knowledge gained through studying psychology online will make you a valuable resource in any support group. Obtaining a psychology certificate has never been easier due to the advancement of online education. Getting a certification in this field can help to open more employment opportunities. It is an excellent opportunity to give back and help others break down barriers and cope with their illness, as the sound advice of a professional is a great asset to anyone currently struggling with health concerns.

Use Online Support Services

Commercial Internet service providers (such as AOL and MSN) offer forums and chat rooms for caregivers to Loved Ones with Alzheimer’s Disease. There are also a few for people in the early stages of the disease as well. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support services can complement your in-person support group and help you in between meetings.

Online support services come in several forms:

  • Chat Rooms: where caregivers type at the same time and talk with each other often with a set topic for the evening and with a designated "host" or "moderator" (View our chat schedule);
  • Newsgroups: where caregivers post a public message and read replies over a short period of time;
  • Message Boards: where caregivers post a message and then read replies over a long period of time (Participate in the ElderCare Forum);
  • E-mail Mailing Lists: where caregivers post messages that are delivered to your email address; and
  • Expert Discussions: where caregivers attend a question and answer forum with noted experts and professionals ("Alzheimer's Answers," a monthly "ask the expert" session co-produced by ElderCare Online and Columbia University's Taub Institute for Research on Alzheimer's Disease and the Aging Brain, appear in the Community Center's chat schedule).

ElderCare Online’s Caregiver Support Network provides links to caregiver Mentors and online support services. Caution: Online support services are generally places where people talk informally. All the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. If you read about something interesting and new, check it out with your doctor or other healthcare provider. The more you know, the better you will be able to cope with your condition on a day-to-day basis.

Online support services can be a lifeline to Alzheimer’s Disease caregivers. Many dementia caregivers have trouble getting out of the house and finding someone to watch their Loved One. Online support services allow you to stay at home and access other caregivers at any time of the day or night. The best online support services are those that have a host or moderator and welcome you with a minimum of chaos and confusion. The host can weed out potential troublemakers or commercial pitches. Your peers in the group can help answer your questions or give you a sense that you are not alone.

Some popular online support groups for dementia caregivers include:

ElderCare Online's Community Center includes a list of upcoming discussion groups and topics.

Additional Reading

- Understanding and Acknowledging Negative Emotions
- Overcoming Negative Emotions
- Caring for the Caregiver: Promoting Your Own Well Being
- Respite: What It Is, What It Isn't
- Identifying and Reducing Stress in Your Life

Finding Resources

- ElderCare Online's Neighborhood Networks include state-by-state links to State, County and local resources; County Area Agencies on Aging; Alzheimer's Association Support Groups; and geriatric care managers. Select your state from our complete listings.

- The Eldercare Locator can be reached at 800-677-1116.

- The Alzheimer's Disease Education and Referral Center can be reached at 800-438-4380.

Available from ElderCare Online™                ©2000 Prism Innovations, Inc.