are millions of caregivers in the United States and they
all have common needs: recognition, counseling,
support, information, problem sharing and, in many
cases, peer socializing.
One of the proven ways that many of
these needs can be met is by the formation of a local
Caregiver Support Group. Caregivers are one of
America’s most valuable assets, but often their needs
are lost in the care recipients’ problems.
Therefore, having a place where caregivers can be
themselves, share experiences and insights and have the
positive input of their peers is critical.
What is a Support Group and
how do you Start One?
A caregiver support group is a
regularly scheduled, informal gathering of people whose
lives are directly or indirectly affected by the
caregiving needs of another and who benefit from peer
acceptance and recognition for their common concerns and
are grateful for the wisdom, insight and humor of their
Who Runs a Support Group?
Informal support groups generally
are created by one or more individuals dealing with a
loved one who have an illness in common such as
Parkinson’s disease, or age (grandma) or category (kids
with special needs) that decide they need to reach out
and share to help others and themselves. It doesn’t take
special training, but it does take effort, dedication
The coordinator must be
dedicated to the cause of helping other people.
The coordinator needs to be
supportive, realistic, reassuring and empathetic.
Must be able to assess the
needs of the individuals and the group as a whole.
Set up meetings.
Lead group discussions.
Publicize the group.
Where Should We Meet?
The number one priority usually is
“Where are we going to meet?” A good first choice is a
local hospital: you can probably reserve a classroom or
small auditorium for your meetings. The education
department, administration secretary, or human resources
usually know whom to contact. Some groups meet at a
church, synagogue, community center, YMCA, library or
even a physician’s conference room. The meeting place
must be easily accessible and physically as well as
psychologically comfortable. Also check with local
nursing homes, adult day centers and assisted living
facilities as they directly benefit from caregivers
being exposed to their facilities. Also, if a loved one
must accompany the caregiver, there is a place for them
to go. All should be free of charge.
Helpful Hints When Looking for
These are some ideas to consider:
Is there a cost?
Are tables and chairs
Can I arrange them in a circle?
How many will the room hold?
Is it handicapped accessible?
Is the room adequately
air-conditioned and/or heated?
Is a restroom location near the
Is there a telephone available
near the meeting room?
How far is the entrance from
the meeting room?
Name and number of person in
charge of this area?
Is a kitchen available?
Would the facility assist in
advertising that your group is meeting there?
When Should We Meet?
You probably will have to poll the
interested parties regarding the best time to meet - day
or evening, weekday or weekend, as well as how often.
The most successful groups are well planned and plan
well. It helps to have a regular pattern: the first
Monday of every month or every Tuesday.
Depending on the time of day you
have chosen to meet, you may want to consider if your
group will be together during a mealtime. For example, a
mid-day gathering allows the possibility of a brown bag
lunch. Another possibility could be to have each member
contribute to a hospitality committee if your group
What If Your Loved One Cannot
be Left Alone?
Depending on the disease, there are
many different options to think about. If the patient
needs day care, some facilities may allow your loved one
to attend their facility one-day per month or week; the
same as with a respite program. Having a friend,
neighbor or relative stay with your loved one so the
caregiver can attend is another possibility. REMEMBER
this is for the caregiver and you must have some time
What Makes a Good Group
Many times, the co-coordinator is
also the group leader. However, as a group grows, others
may help facilitate and lead, while the coordinator
takes care of all the logistics. The leader must be
active and maintain an interest in the group. The leader
needs to stay current regarding new information and
advances in the areas of interest to the group. The
leader must be dynamic and motivated. Active
listening while guiding the group is important to the
success of the group. It is also important to end the
group meeting on a positive note. Periodic evaluation of
the program will ensure its viability.
Leader must be dedicated to the
cause of helping and caring.
Assess the needs of the
individuals and the group as a whole.
Set up meetings.
Finding other speakers such as
a physician or other professional is always a good
Publicize the support group.
How Do You Get the Word Out?
Getting the word out is mostly
about networking. Your church or synagogue may
print an announcement in their newsletter.
Distributing flyers around the area and placing
announcements in the community calendars of local
newspapers or Web sites can be helpful. Remember to put
in a phone number, email address or Web site and when
you can be reached.
Depending on the disease or
illness, you should talk to local physicians that treat
patients with that disease. He or she will refer
caregivers of patients living with that illness to you.
Maybe the doctor will even post a flyer in the office.
Remember, whoever the contact
person is, he or she should always remember that the
first contact is the most IMPORTANT! This person
may be the deciding factor when a caregiver is
considering attending the first meeting.
If you are choosing a local medical
center as your site, post the meeting in their lobby,
and notify their employee newsletter. Often they
will make an announcement welcoming your support group.
Many times, public or community relations departments
will assist you so it never hurts to ask. Also, try to
speak at some of the nurses’ meetings and let them know
about the group. Nurses would be delighted to be able to
point a caregiver in the right direction for support.
Don’t forget, local TV and radio stations also accept
Public Service Announcements.
Now you have a list of names and
telephone numbers and where and when you think you would
like to meet.
The first gathering may be a small
group of five or six people. Still, a great deal can be
accomplished. Remember, sometimes it takes quite a while
to get the group up and running. Be patient, and
remember if you help just one person, you have done an
You might think that the challenge
is getting people to come to your first meeting, but it
may not be difficult at all. The real challenge is
getting them to keep coming back!
Set up two tables, for
registration and refreshments. Perhaps the co-leader
or a volunteer could be at the refreshment table and
help people get accustomed to the new environment.
The registration table should
have a dated sign-in sheet with a space for name,
address, phone number and e-mail address.
Arrange the seating in a circle
or semi-circle. This facilitates conversation
and a friendly atmosphere. Remember, your goal is to
provide an open environment for the exchange of
thoughts, feelings and information that doesn’t go
beyond the group setting. There should be room for
laughing, hugging, crying and bonding; or quietly
sitting and listening. Never let any one person take
over the conversation for too long; you should allow
everybody to get his or her chance to speak. You may
have to interrupt and say, “Maybe we should see what
Mary thinks about that.”
If you have a speaker, be sure
to allow time for a question and answer period
following the speaker.
Restate the primary goals of
the group; this will help to give the group
Suggestions for Meetings
Lets get acquainted today.
Tell us the most difficult
thing you had to handle this week.
Remember, the best way to get a
good idea is to get a lot of ideas in front of the
Coping with caregiver worries.
Conquering caregiver fears.
Health strategies for active
Taking care of yourself.
Companionship, love and
Coping with the Stress.
Understanding this disease
Keep it Going
The leaders and coordinator must
take ownership of the process and remember to rotate
some responsibilities. In the beginning, the group will
focus on the disease information process, prescription
comparison and common symptoms and afflictions. It will
take time to move to a wide variety of common topics.
Eventually, all of the clinical things get known and
broader and more common problems get discussed. It is
not unusual for a group to go for years and to have
upwards of 100 members. They come and go as their needs
and schedules require and as their personal caregiving
It’s also a good idea to keep a log
of the meeting date, time and discussion topics of that
meeting. It helps resolve issues, arguments and
scheduling later on.
In time, the group may wish to look
into assessing the effectiveness of the information and
support it provides. When new caregivers first begin to
attend the meetings, you can ask caregivers to fill out
a reliable depression questionnaire; when done again in
six and 12 months, you could then prove the positive
outcomes of the support group. Periodically surveying
all caregivers for suggestions, additions and deletions
to the program provides an anonymous forum to allow for
constructive change (or at least its discussion) within
Caregiver support groups are an
invaluable tool to helping others and oneself deal with
the consequences of being a family caregiver. Taking the
initiative to begin one and follow through is a major
commitment, but with unlimited rewards. Once you are up
and going, you will really appreciate and love it. It is
one of the best things I ever did in my life, and I am
so grateful that I could really help and give back to
Suzette Levy is former
co-founder and Director of North Broward Hospital
District Neurological Institute; she presently is the
Caregiver Support Group Director for the National
Dysautonomia Research Foundation and a founding director
and President of the American Association for Caregiver
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