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A History of Volunteering
F amilies of people with dementia founded the NYC Chapter and its support-group
program in the late 1970’s. This is how many grassroots non-profit organizations begin:
concerned citizens come together to figure out how to meet their common needs for
programs, services, advocacy and economic and political reform. Once this happens, an informal
structure evolves that can be sustained by volunteers. In time, volunteers cannot manage the
responsibilities of a growing organization and this creates the need for professionals, who have
the skill and expertise to direct and expand the work.
The Chapter’s support-group program has been led by professionals since the mid 1980’s.
It has grown to 110 group leaders and 130 groups for spouses, partners and adult children
taking care of their relatives with Alzheimer’s disease, Lewy Body dementia, and Frontotemporal
dementia. Groups are also led by Spanish-, Russian- and Chinese-speaking group leaders. There
is also a SAGE (Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders) group
for caregivers.
The program offers three annual group-leader trainings, educational workshops specifically
designed for group leaders, supervision, clinical consultations and ongoing support as well as
special programs for support group members.
Volunteer group leaders continue to make a critical contribution to the program, especially
because of experiences as caregivers and former support-group members. Their commitment to
the Chapter’s vision of a person-centered approach to both the treatment and care of people with
dementia and emphasis on the need for caregivers to care for themselves is crucial and is a great asset.
Nancy Shamban is one of our exceptional volunteers. Nancy, a psychiatric nurse
and psychotherapist, was a group member for a period of time before becoming a
group leader. In 2007, she volunteered to be a support-group leader and has been
leading one of the Chapter’s support groups for adult children who are long-distance
caregivers.
Her partner, Marilyn, was diagnosed with Frontotemporal dementia in 2004.
Nancy was her primary caregiver for over two years until — because of the rapidity
of the progression of the dementia — Marilyn needed more care and moved to an
assisted living residence.
Nancy has always wanted to volunteer overseas and will be leaving for Sri Lanka
in November 2009 to be a volunteer teacher, mentor and supervisor to mental health
staff in psychiatric hospitals there. She is volunteering through Voluntary Services
Overseas.
Nancy’s professional background and personal experiences were clearly perfect
training for a support-group leader, but the Chapter still needs former caregivers and
retired and working professionals who come from other backgrounds and different
experiences. If you consider yourself empathetic and kind and you are interested in
leading support groups, we can teach you the medical facts and psychosocial aspects
of dementia, group dynamics and group leadership theory and techniques. New
groups are always forming and new volunteers are always needed.
There are groups for adult children, spouses, partners and significant others. All the groups
can be seen here or a support group list will be mailed to you if you call the 24-
hour Helpline at 646-744-2900. If you would like to discuss the right group for yourself or other
questions, please call 646-744-2917.
Support Group Leader Training Seminars
Winter Training
January 22, 2010
January 29, 2010
February 5, 2010
February 12, 2010
Registration requires a commitment to attend all 4 days of training. To register, for information
about future workshops, or ongoing supervision groups for support group leaders, please call
Sharon B. Shaw, LCSW, CGP, at 646-744-2932.
This program has been approved by NASW-New York State for 22.0 contact hours under approval number A-915.
For more information, please contact Sharon Shaw at 646-744-2932 or sshaw@alznyc.org or
Wendy Panken
at 646-744-2917 or wpanken@alznyc.org.
— Wendy Panken, LCSW
Manager, Support Groups
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