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Everyone Needs Support - But Some Don't Like To Admit It

Support groups for Alzheimer's family members are extremely valuable - and free

CanStock Photo
Source: CanStock Photo

One of the most important tools for helping family members cope with the challenges of caring for a loved one with Alzheimer’s disease is available in nearly every community, and is free: the Alzheimer's support group. Sadly, many people don't go. The value of support groups is discussed in detail in the book I co-authored with Kesstan Blandin, The Emotional Journey of the Alzheimer’s Family, but here is a quick summary of the main points we discussed:

What are some good reasons to attend a support group?

  • To learn about the disease: A wealth of facts about the illness, including lots of practical information that may be hard to find in books, comes from support groups. This includes not only information about the typical signs and symptoms of the disease, the stages of the illness, the treatments available, and so forth, but also, valuable advice about how to manage challenging behavioral symptoms and other difficult issues. Commonly, the most helpful information comes not from the professionals who facilitate the group, but from the care partners themselves; they are the ones living with the disease on a daily basis.
  • To realize that “you are not alone”: Caring for a family member with Alzheimer’s is a unique (and often, a very lonely) experience: only someone who has cared for a loved one with the disease can completely understand what you are going through on a daily basis. Conversations with close friends – as helpful as these are – cannot replace the opportunity to interact with others who are actually going through the same challenges you are facing. Of course, it can be great to talk with a close friend who is also an Alzheimer’s family member, but even that one-to-one conversation may not offer all of the benefits of being a part of an Alzheimer’s support group, where there is the opportunity to talk with numerous people who have had or are currently having similar experiences. Something about the group process itself brings thoughts, experiences and feelings to the surface that may not to come up in one-to-one conversations.
  • To have an opportunity to share your feelings: Perhaps even more valuable than learning that others have similar experiences is learning that others have similar feelings in reaction to caring for someone with the disease. Nearly every family member who cares for someone with Alzheimer’s has to cope with some very difficult emotions – anger, guilt, anxiety, shame, and grief, to name some of the most common. Learning about how others cope, as they talk about (and often display) these emotions is a powerful experience, and can give you a sense of “permission” to experience these same difficult feelings, yourself. It may even help you to identify, for the first time, some of the painful emotions you have been having, but not fully understanding. If you are already aware of some of these feelings within yourself (but uncomfortable with them), hearing from others who are experiencing similar emotions may give you a greater degree of comfort and acceptance than you previously felt. This is a critical step in moving forward with the process of working through these difficult emotions, as you learn to adapt, psychologically, to having a loved one with Alzheimer’s.
  • To feel less stigma about the disease: Participating with others in a support group will help you feel that your loved one is not being looked down upon because of the illness, at least within the circle of the group. You may even feel more accepted and less stigmatized yourself.

Why don’t more people go to support groups?

Despite their myriad benefits, support groups are underutilized. Here are some of the common reasons care partners give for not going to a support group:

  • “I can’t get away.” You may feel you are not able to leave your loved one home alone while you attend a group, and don’t want to hire someone, or to ask a friend to help so you can attend a group. But going to a support group is one of the most important reasons you can have to ask a friend or family member to spend some time with your loved one. It is a great use of a “favor” and your true friends and family members should be glad to help out. But make sure that the problem is not simply that you are too reluctant, or too embarrassed, to make the request. A crucial task for every Alzheimer’s care partner is to become comfortable asking others for help. You simply can’t do this job alone.
  • “I can’t tell my loved one I am going to a support group”. Why not? In previous posts I have talked about the importance of decreasing the “discordance” that exists between the person with the disease and the care partner, and about the necessity of discussing the illness openly with the person who has Alzheimer’s. Some people with the disease may not like the idea that they are being discussed with others, or may simply not recognize that there is anything at all that needs to be discussed. If this is true in your situation, it is important to be able to say to your loved one, and yourself, that “I need this for me”.
  • “I don’t want to know what’s coming.” Perhaps you are reluctant to attend a support group because you don’t want to hear about the problems you may face in the future, as the illness progresses. While this may be understandable, it is defensive behavior that won’t, in the long run, help either you or the person with the disease. To be forewarned is to be forearmed.
  • “It is not a convenient time or place.” This in often an excuse used by family members who have other, defensive reasons for not wanting to attend a group. Find another group in your area that works better with your schedule, if this is really the case. Or, change your schedule.
  • “It is a private matter.” Maybe you are reluctant to share with others about how you are affected by the disease; or you may feel that to talk about your loved one's illness with others who are not close family members is somehow disloyal. These feelings are rooted in the stigma surrounding the disease, and not its objective reality. Presumably, you would not feel reluctant to share that your loved one had a broken leg, or suffers from heart disease. Attending a support group regularly is, in fact, one of the best ways to lessen the sense of stigma that you feel.
  • “I don’t need it.” This is probably the most common reason given by those who are reluctant to attend a support group. It is particularly common among male care partners - although it is not rare among females, either. Perhaps you don’t want others to think you are having difficulty coping with your family member's disease; maybe you don’t even want to admit that to yourself. Many people don’t like to acknowledge their need for support, for a variety of reasons. If you don’t want to concede that you need this, it is okay to tell yourself, and others, that you are simply going to the group to learn the best ways to manage the illness. No one has to know that you also get some support when you are there!