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Preserving Your Memory
Any professional will tell you
“support” is one of the most
important factors in dealing
with Alzheimer’s disease. Whether
you’re the person with the disease,
the caregiver or a family member,
an Alzheimer’s diagnosis can be a
lonely, terrifying experience. For many
families, the only source of information
is the doctor, books and internet
searches. Although they may offer
some solace, nothing compares to the
personal experience of others who have
“been there and done that” or are going
through the same situations as you.
The fastest and easiest way to find
people who can provide you with that
valuable information is by seeking out
a support group.
A Family Affair
Support groups are beneficial for
patients and their loved ones.
“Talking with people who are in the
same stage of the disease progression
allows the person to share what they’ve
been experiencing and take comfort in
knowing they’re not the only person
this is happening to,” says Brian Carpenter, Ph.D., a psychologist who specializes in aging at
in Washington University . Talking to others who St. Louis
are further along in the disease can give
a patient a sense of what might be coming down the road and how they might
be better prepared, he adds.
The social aspect is also a plus.
“Sometimes when people begin to
develop dementia, they find themselves
less comfortable going out in public
and being with other people because
they’re so conscious about their memory lapses,” Dr. Carpenter says. “Being
in a support group forces one to get out
and socialize with others in a setting
where they don’t necessarily need to
feel so self-conscious about any cognitive difficulties,” he says.
Support groups give caregivers a safe
environment to vent, share their experiences and learn different tips to help
manage daily care and handle more
severe symptoms like aggression or
wandering, Dr. Carpenter says.
For family members:
Support groups can help those in
non-caregiving roles to learn more
about dementia and ways the family
can support their loved one and the
What to Look for
“Support groups offer you the
opportunity to educate your mind and
your heart,” says Mary Underwood,
Corporate Director for Memory Care
Services for Maplewood Senior Living in
“You should Westport, Conn.
expect to intellectually learn something
about the disease and also learn how to
deal with it on an emotional level,” she
A good support group can be a wonderful resource. However, one that is
unorganized or improperly managed
can do more harm than good, experts
say. When searching for a support group,
ask yourself the following questions.
What kind of group do I/we need?
Although most groups are for caregivers, there are many types of groups
available. “There are groups for couples, for family members, for just the
patient, for just the caregiver, and there
are groups for both the patient and
caregiver,” says Nancy Squillacioti,
Executive Director of the Alzheimer’s
& Dementia Resource Center in
. There are also online and telephone support groups. Orlando
Who is the facilitator? Our preference is a group facilitated by a professional rather than a volunteer, Squillacioti says. A professional facilitator has the
skill and training to manage the group
well and to key in on critical issues that
shouldn’t be ignored, she explains.
What is the make-up of the group?
Having a diverse group of members
is important, says Underwood. “You
don’t want everybody there to be at the
beginning stage of the disease process
because there will be more questions
than answers. You want a combination
of people who have been caregivers for
several years and those who are just starting out, so that they can help each other
and offer different perspectives,” she says.
Is the time and location convenient? Make sure the group has times
and locations that work for you and
your loved one. If you frequently have
to miss meetings due to your schedule,
or you have to travel a far distance,
you’re less likely to benefit as much
from that particular group.
Are things confidential? Usually,
groups are confidential, but it’s best
to confirm the confidentiality policy.
“Unless there’s a serious risk [like talk
of harming yourself or others], what
you say in meetings should be confidential and not repeated outside of the
group,” Underwood says.
What to expect
Every support group is different;
however, things generally happen in
a similar format. Some groups do
introductions of first names, Squillacioti
says. Then, sometimes there are speakers. After introductions and any presentations, the facilitator usually asks if
anyone has anything pressing to share.
“This gives participants the opportunity to speak about any really serious
issues immediately,” Squillacioti says.
Once urgent matters are addressed,
Underwood says everyone has a chance
to talk about any issues, struggles or
exciting news. “You can share as little or as much as you’re comfortable
doing,” she says.
Usually support groups are free.
Depending on how many members and
whether there are any special speakers,
group meetings last anywhere from an
hour to two hours, Underwood says. ■