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Assembling the Team: The Support Group

Their role as a support provider  ©

Structured Support Groups

Drop-in support Groups

The worst and the best

Where to find a group

The support group is the single most important point of entry for services for most caregivers and for many it is the only contact they will have.  A well run support group is a living resource of information on community services and how service providers have helped or hindered those in the group who have used them.  You can eliminate a lot of trial and error by listening to other’s experiences.

The support group is also where you learn to anticipate what is ahead of you as a caregiver, a place to meet those who have made it through your present situation. You will see people still laughing in spite of their tears.  And you will be surprised at how much laughter there can be in sharing the experience.  It is impossible to mourn 24 hours a day for any extended period of time.  You can feel sad for just so long. However, anxiety and stress can go on indefinitely with this or any other long term illness.  Your support group can make your ability to cope with the stress possible.

The support group is where you will meet other caregivers. These members of your group can be the most important connection you have to solving your challenges. Your group may contain the only people you can be truly open with, the only place in your life that allows you to examine your feelings as well as your options. They are your most valuable resource while you face the caregiving of your family member.

The support group fills many functions, all of them important, but for some it becomes the only source for human contact outside immediate family. The more involved your care needs become the more isolated you become.  Your group may be the only social interaction you have outside your immediate family.

Not all groups work in the same way.  It is always a good idea to get the name and phone number of the facilitator and talk to that person before attending your first meeting.  It is also  good idea to ask the leader what their care experience has been with Alzheimer's and what the scope of the group is.  In this way you will get a sense of what to expect, the types of problems people deal with in the group, and the basics of how the group functions. 

There are two types of caregiver groups: The Structured Support Group and the Drop-In Family Support Group.  Seek out and explore both resources. They offer different focuses and you will need different things from different people at different times.

 Structured Support Groups

The number of meetings are set over a period of days or weeks. These are limited to a certain number of people who must commit to attend as many meetings as possible and preferably all during the length of the course. The dates and times are set ahead of time so that participants can arrange their time before the program begins and there are often a minimal fee to attend this type of group.

These groups are usually topic oriented with a set curriculum so missing one meeting leaves you behind the others and forces them to let you play catch up when you return.  Missing a meeting slows everyone down and is unfair to those who make every meeting.

The group leader is there to facilitate discussion, but they are also there to keep the topics and the content in focus. I have found that the topics offer a jumping off place for any problem a caregiver brings with them. Everyone seems to get their problem on the table in these groups in spite of the structure.

These groups are not as free wheeling as some others and tend to be more homogeneous than drop-in groups. They target caregivers who share a specific purpose, such as the care of an aging parent or spouse, Early or Late Stage Care, Accessing Community Services, Grieving Issues, long-distance Caregiving, etc. This is the place where caregivers get to focus on their most pressing need.  An intensive program devoted to one or two issues can set the stage for how you will make other care choices as your family member’s needs increase. The homogeneous nature of the group also facilitates flow because the group leader and the participants have a common goal and a common experience.

The bonding between members also happens quickly because the same group of people meet together over a period of weeks, or days.  Many times, members of this type of group will bond so well that they continue to meet informally after the program ends. Many of these informal groups have followed each other through the stages of illness, through the death of the family members and for years after the caregiving ends.

Drop-In Support Groups

Attendance in these groups vary from meeting to meeting and this is the more typical group available through places like Senior Services or The Alzheimer's Association.  Caregivers attend when they can or when care needs become critical and they need specific help with a problem.  As a result the topics can vary widely from meeting to meeting. This is not a homogeneous group because of the drop-in nature of the group and it can be months before a new attendee bonds with the older more regular attendees.  These groups generally meet once a month, some meet more often.

The first portion of these meetings is usually spent introducing everyone to everyone.  A skilled group leader will limit the time for introductions and make sure no one monopolizes the time.  It is important to get past the introductions so that topics can be discussed.

Once the topic phase of the group begins, there should be an open flow of discussion among all members of the group.  Subjects such as incontinence, wandering, Sundowning, feeding, coping with the behaviors, how to adapt your home, combativeness, medications, how to find time for yourself, should be routinely discussed.

Group members should not wait to be called on and you shouldn’t have to raise your hand to be acknowledged. This is not grammar school and the leader is not your teacher.  The leader is there to facilitate discussion and to make sure everyone feels at ease in sharing their experiences.  It is their job to control the flow, not yours.

Bonding, when it happens will occur most easily between those members who attend most often and who become involved in the details of each other’s lives, but this is not to say that those who attend less frequently are left out.  You have the choice of becoming as involved as you wish in these meetings and with the other members of the group.  However, I think the strength of this type of group depends to a large degree on the core group. Their combined strengths and experiences are valuable and a skillful leader knows how to use this collective experience to the benefit of newer and less seasoned caregivers.  It is a team effort at its best and an essential resource for all caregivers.

Support Groups At Their Worst

• A clique forms of regulars who dominate the conversation.  

• Topics tend to revolve around the needs of the selected few.

• The only voice you hear is that of the support group leader who is possibly the one with the least hands on experience in the room.

• Long term caregivers tend to leave the group, particularly those doing home care leaving new comers with no frame of reference for anything but nursing home placement.

• The leader has made the nursing home choice for their family member and has not resolved their own feelings regarding that decision, consequently talk of home care is systematically squelched.

• Caregivers are subjected to clichés and myths instead of information, tools and resources.

• The main sign that there is 'Trouble In River City,' is the rapid turnover of attendees except for the core group.  

• It becomes unfulfilling for the majority of attendees and the drop out rate is high.  

At it's best it is a continuing source of information, camaraderie and empowerment.

Things to consider:

Most caregivers have to make arrangements for the care of their family member so that they can attend any group.  For many, that meeting may be the only time they have to air their problem for an entire month. To these people I say;

• Don’t waste your opportunity to be heard because you feel intimidated by someone else’s dominance.

• While all of us have pressing needs in care, it is by sharing each of our experiences that we all benefit.  However, there are times when your problems may feel overwhelming to you and if your problems fall into that category then perhaps a drop-in support group is not the best place for you to be at that time. You might want to consider some one-on-one counseling or a more structured group with people at the same place in caregiving as you.

• If one person always seems to monopolize the meeting, speak to the group leader about it.

• The role of the support group leader is to facilitate the flow of information between the group members and that includes being aware of everyone’s needs. They have the obligation to watch out for those of you who are more shy about speaking out and control those who are more dominant.

• The support group leader is not the only source of information.  In fact, unless they have actually done care themselves they are, very often, the ones with the least experience in that group and they should be as anxious to learn from those who have had the experience as the other members of the group.  The group should have a hum to it, an even exchange of ideas and thoughts from all the members of the group.  No one person should dominate including the group leader.

• The most important reason to attend a support group is to network with other caregivers like yourself.  There should be an open invitation for group members to share phone numbers and addresses, if wished.   While professionals who lead groups have a wide variety of services to tap into, the reality is that when a crisis happens it will most likely be at night when offices are closed and voice mail is the only game in town.  When a crises happens, you need to speak with someone immediately.  Sometimes the simple thing one caregiver tried in a similar situation is all you need to get through that night, that and a shoulder to cry on. 

• I also encourage those of you who attend groups and who lead groups to watch out for those who seem to be in trouble.  A phone call to a group member who has stopped attending because of care responsibilities can make the difference in how that caregiver handles the stress level facing them.

• Don’t assume you are imposing by calling a caregiver.  If they are up to their necks in their own problems when you call, they will tell you and call you back when they can.  They may need someone to talk to just as much as you.  Reaching out to others can be a strengthening and validating experience for both parties. 

• As stated earlier, although the group leader may have resources available to you, the crises rarely happens during working hours.  It is on the weekends and late at night when the problems escalate.   All the more reason to establish a calling list of other caregivers who are willing to share, lend an ear, give some advice or a shoulder to cry on.

~*~

Where to Find a Support Group That Fits Your Needs

The Alzheimer’s Association:

The Alzheimer’s Association runs numerous support groups in every state in the country, and this should be your first call for information.  For many, the Alzheimer’s Association is the first call for help that is made, even before the doctor is selected.  

• They offer counseling and basic information on all stages of care, including incontinence care through their help-lines, seminars and workshops.  

• Video tapes on the various levels of care are available for you to watch and they really are there to try to make your life as easy as possible for you.  

• If you can’t discuss your problems with anyone else you should be able to discuss them with the people in this organization. 

• They are the experts to go to in the beginning stages and they are the ones to get your started in taking control of your situation. 

• They all have libraries which contain information on all phases of care including incontinence. 

• They also have a very active Help line network and they are on the web.

• They all offer family drop-in groups and most have short term structured groups that focus on specific areas of care such as early or late stage, managing the behaviors, adapting the home, etc.   

• Some offer specialized groups for men, spouses, or adult children. 

• Most chapters have a newsletter, get on the mailing list. You can get information on the chapter nearest you by contacting the national office.

Phone the chapter in the major city nearest to where you live for the name, number and address of the support group in your area.  Always have the phone number of your local chapter at hand. 

ADRDA 919 North Michigan, Chicago, Illinois 60611-1676.

Phone: 800 272-3900

Fax: 312 335-1110

Web Site: http://www.alz.org/

Other Resources for Support Groups:

 

And Don’t Ignore the Unusual Suspects:

 

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