Perhaps you never imagined yourself as the type of person to attend a support group to share your feelings with strangers. Or maybe you used to shudder at the idea of seeking out a social worker or psychological counseling. Maybe you hated to even borrow a cup of sugar from your neighbor. But if you’ve just learned that you have Alzheimer’s, you may start to rethink some of these preconceived notions about yourself. You may realize that you need more support from your friends and family than you ever dreamed you would. You may also find yourself tapping into community resources in a way you never did.
Creating a solid support network is important to people who have Alzheimer’s and their families. Having the disease or caring for a person who has it is not something you want to do alone—or should do alone. The love, support, and assistance of others can play a critical role in how well you and your family cope with the disease.
In an ideal situation, the person who has Alzheimer’s has not only one primary caregiver, but a whole network of loved ones and friends who can provide emotional support, practical assistance, and routine care. There would be relatives and friends nearby who could help the caregiver with meal preparation, house cleaning, and errands. There’d be people to stop by and stay with the person who has Alzheimer’s, so that the caregiver could get regular breaks.
Building that kind of a network may come easily for some families who are physically and emotionally close. Everyone may pitch in without question and lend a hand. But in today’s world, where families often live far apart, it may take considerable effort on the part of the patient and the primary caregiver to create such a network. Some families may also have difficulties getting along, and a diagnosis of Alzheimer’s may even cause rife and division. For these families, it may mean greater involvement by support groups, community agencies, and other organizations.
The good news is, the numbers of organizations and support groups for people diagnosed in the early stages of Alzheimer’s and their families has grown in recent years. As more people are diagnosed in the earlier stages of the disease, the need for more groups that serve them has grown, too. Experts are recognizing that the needs and abilities of people in the early stages of Alzheimer’s are considerably different from those in more advanced stages. Nonetheless, people in the early stages of the disease still need support and assistance.
SUPPORT GROUPS
No one who is diagnosed with Alzheimer’s is ever obligated to join a support group. Nor is a caregiver. After all, not everyone feels comfortable sharing intimate feelings with a room full of strangers. And some people may find all the support they ever need from their families and friends.
But for many others, joining a support group is one of the best ways for patients and their families to cope with the disease. Being in a support group means being among people who share similar circumstances and who can understand your plight better than others who have not been diagnosed with the disease. Support groups benefit patients and their families on several levels:
• Education. Support groups provide members with a forum for exchanging information about the disease and ways to cope with it. Whether it’s new research, strategies for dealing with difficult behaviors, or ways to manage new challenges, patients and caregivers learn from one another.
• Emotional support. Living with a chronic disease such as Alzheimer’s can arouse a host of feelings. Having a support group provides a safe, environment where you can verbalize your thoughts and emotions among others who share those same feelings.
• Community resources. Being among other people who have early Alzheimer’s and their families can help you learn about resources in the community that may not be well publicized, such as different respite programs. If you’re in the early stages, you may find these resources before you actually need them.
• Camaraderie. Among the greatest benefits of a support group are the friendships forged through a powerful, common experience. A support group may become a social outlet for patients and their families who may otherwise feel isolated by the disease. People who are living with Alzheimer’s may have difficulty relating to old friends, but may enjoy the new friendships made in these groups.