The Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards: 2008 Awardees
Family Caregiver Alliance (FCA) and The Rosalinde and Arthur Gilbert Foundation are pleased to announce the winners of the first annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards.
Awards of $20,000 each will be presented to three nonprofit organizations to recognize extraordinary programs that address the needs of Alzheimer's caregivers. The winning programs qualified in one of three categories: creative expression; diverse/multi-culturalcommunities; and policy and advocacy. The programs will be honored at a national conference on aging in March.
Organization: CJE SeniorLife, Chicago, IL
Program: CULTURE BUS INSIDE AND OUT
CJE, a non-profit organization, responds to the needs of older adults and their families with a range of services including health care and rehabilitation, housing and community based services (such as in home care, home delivered meals and more). CJE serves 16,000 clients and their families in metropolitan Chicago on an annual basis.
Culture Bus Inside and Out began in the Fall of 2002 when participants in an early stage dementia support group, hosted by Northwestern Hospital's Cognitive Neurology Clinic, voiced a desire for more appropriate social and cultural activities than were available in traditional adult day service settings. In response, Northwestern and CJE partnered to create the Culture Bus program for people with Alzheimer’s disease and related dementias.
Culture Bus Inside and Out meets once a week for forty weeks per year. Meetings are supervised by one CJE staff person who is trained in art therapy, counseling and dementia and acts as planner and facilitator. Three volunteers augment staffing. Outdoor sessions last six hours and offer participants meaningful cultural experiences and socialization with visits to cultural venues, artist studios and restaurant dining. Past trips have included: a glass blowing studio, a yoga/meditation center, and the Museum of Lapidary Art. During the five hour indoor sessions, participants engage in expressive art activities and also dine together. Inside activities have included: a drumming circle, improvisational drama, poetry writing and oil painting. The paintings were exhibited in a professional gallery.
The program offers family caregivers much needed respite. In addition, family caregivers provide input and participate in group gatherings at the beginning of each session and a hands-on creative arts activity at the culmination of each season.
Comments: This program serves both persons with Alzheimer’s disease and other dementias and their caregivers and closes a gap in the care continuum by addressing the needs of persons with early stage disease. The Culture Bus not only builds community among participants, but it takes affected families out of institutions and the home setting into the community. The program is highly replicable. Northwestern University is evaluating the program and findings from the evaluation have informed the expansion of the program.
Organization: Chesed Project at Taos Jewish Center, Taos, NM
Program: APOYOS PARA LOS CUIDADORES
Non denominational project of the Taos Jewish Center, in collaboration with other local community based agencies, offers outreach, education, therapeutic and social activities to older adults from the rural, diverse communities of Taos Pueblo and neighboring villages.
APOYOS PARA LOS CUIDADORES (Support for the Caregivers) offers support services to family caregivers of older adults with Alzheimer’s disease and related dementias. Participants of this program are residents of Taos County and neighboring villages including Taos Pueblo and come from rural, low income and diverse communities (predominately Latino: 58% of Taos residents are Hispanic or Latino). APOYOS provides the only caregiver support services available in this rural low-income area.
Specifically, APOYOS PARA LOS CUIDADORES supports family caregivers by offering the following services:
Caregiver Education and Support Groups: Psycho/educational meetings offer peer support and education on topics such as Communication and Difficult Behaviors and Dealing with Stress Caregiver Wellness.
ArtStreams: An interactive art discussion that takes place at local museums and galleries provides caregivers with social interaction, group support, mental stimulation and respite. Other activities include yoga, exercise, Reiki and Scrabble.
Caregiver Resource and Referrals Center: Provides caregivers with guidance, information, and referrals. Caregivers have access to telephone consultations and a caregiver’s resource library which includes books, DVD’s and printed materials on a variety of subjects.
Comments: Apoyos Para los Cuidadores is highly replicable program and bridges the worlds of serving ethnically diverse and rural seniors, serving low-income Native American, Latino and Anglo persons affected by Alzheimer’s disease and their caregivers. The program is based in a Jewish center and serves all ethnic communities.
Organization: Labor Project for Working Families, Berkeley, CA
Program: CALIFORNIA WORK AND FAMILY COALITION
National nonprofit advocacy and policy organization that partners and collaborates with community based organizations and labor unions to improve public policies for working families. Labor Project for Working Families provides education, resources, and technical assistance to labor unions on work and family issues including quality child care, elder care, family leave and flexible work hours. Particular focus is placed on low income working families. The Labor Project chairs and convenes the California Work and Family Coalition.
The California Work and Family Coalition comprises a network of over 25 community and advocacy organizations and strives to educate California’s working families about policies such as the Paid Family Leave law so that more family caregivers in the state are able to utilize the benefits offered by the program. The Coalition also works on mobilizing the public and influencing lawmakers to create and enhance legislation that supports California’s family caregivers in their ability to balance their work and caregiving responsibilities.
Building on the successful passage of California’s groundbreaking Paid Family Leave (PFL) law, the Coalition reconvened in 2006 under the leadership of the Labor Project for Working Families to advocate for new statewide policies that help working families with caregiving responsibilities. The Coalition promoted three bills in 2007 to expand California’s paid and unpaid family leave laws and protect employees from discrimination at work based on their familial status such as having young children or elderly parents. The bills were passed by the state legislature but vetoed by Governor Schwarzenegger.
The Coalition has built momentum around the bills by drawing new supporters and organizations into its fold. The Coalition plans to reintroduce these bills in the near future.
Following the Coalition’s lobbying efforts, the state’s Employment Development Department (EDD) in 2008 established the first ever staffed unit devoted to outreach and education about the Paid Family Leave program.
After the coalition was successful in passing the nation's first paid family leave law in 2004, they reconvened in 2006 to work on issues around expanding the policy and doing more extensive outreach. One finding from the 2 years that the law had been in existence was that family caregivers were taking paid family leave at a much lower rate than new parents. Accordingly, many of the coalition's expansion efforts in 2006/2007 focused on caregivers - expanding the law to more caregivers (siblings, grandparents, etc) and getting the word out to more caregivers, a vast number of whom are caring for family members with Alzheimer's disease or related dementia.
In 2008, New Jersey passed a paid family leave law modeled after California's law. New Jersey also built a coalition around the issue and learned from California's experience how to successfully advocate for such a policy. One important component of both leave programs is that they rely on a small additional income tax designated to the paid family leave fund.
Comments: California’s model family leave laws are an essential support available to caregivers of persons with Alzheimer’s disease. The CA Work and Family Coalition has, over time, addressed gaps in the legislation and is now working to ensure that family caregivers, many of whom care for persons with Alzheimer’s disease, take advantage of these benefits. The policy and the Coalition’s advocacy approach have already been replicated by one state.