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The National Alliance for Caregiving &
MetLife Foundation
2006 Family Caregiving Awards
Background Non-profit programs around the country applied for the awards in the categories of caregiver support, caregiver education, and technology—either as a small community (with a population of 100,000 or fewer) or a large community (100,001 or more). Their detailed applications addressed a battery of questions and were judged in the following categories: innovation, effectiveness or impact, basis in research, diversity, and potential for replication or adaptability. There were many outstanding applications and hundreds of fine programs identified. The following programs were chosen as the award winners. They have developed descriptions of their programs, with advice on replicating or adapting their efforts, for visitors to this website. Full contact information for each program is included, as well.
Award Recipients
For Caregiver Support
Eldercare Partners
West St. Paul, MN
Eldercare Partners Caregiver Services
Mountain Empire Older Citizens, Inc.
Big Stone Gap, VA
Family Support Services
For Caregiver Education
Stroke of Hope Club, Inc.
North Palm Beach, FL
Caregiver Manual
Wisconsin Alliance for Family Caregiving
Madison, WI
Strengthening the Delivery of Family Caregiver Education Through Partnerships
For Caregiver Education and Excellence in Alzheimer’s Caregiver Support
Alzheimer’s Association of Los Angeles, Riverside, and San Bernardino Counties
Los Angeles, CA
Asian American Dementia Care Network
For Technology
Family Caregiver Alliance
San Francisco, CA
Supporting Caregivers Through Technology
Eldercare Partners, West St. Paul, MN
Eldercare Partners Caregiver Services
Applicant Organization
Eldercare Partners is the service provision arm of the Strategic Alliance for Senior Services (SASS). SASS unites four of the most respected nonprofit organizations in the Minneapolis-St. Paul metropolitan area. We member organizations are geographically well-distributed and represent numerous points on the long term care spectrum including caregiver support, home health care, transportation, volunteer services, senior centers, housing, and more. We all have deep community roots, having been in service from 32 to 106 years. In 1999 we came together as a charitable supporting organization with a mission to preserve and enhance community-based, high quality, nonprofit services for elders and their family caregivers through the cooperative efforts of the member organizations. Our first venture in 2000 was a market-rate care management service. Recognizing the need for innovative approaches to caregiver support and education, we launched Eldercare Partners Caregiver Services in 2002.
Program
Through our Caregiver Services program, family consultants coach and counsel family caregivers so they have the information, skills, and life-balance tools to confidently provide care for as long as possible. Some caregivers simply have general questions about resources for themselves or the person they are caring for, and our family consultants advise them about community resources that will meet their needs. The heart of the program, though, is ongoing caregiver coaching and counseling.
The first step of this service, done in person, is a standard assessment of the caregiver – the caregiving tasks at hand, the caregiver’s own physical and mental health, the caregiver’s support system and family dynamics, legal and financial responsibilities, and the rewards the caregiver is experiencing in the role. The caregiver assessment is a critical step in helping the caregiver focus on self rather than solely on the care receiver. The Zarit Caregiver Burden scale is also administered at this time, both to help reveal what some of the key stressors are and to create a baseline for comparison when the scale is again administered after a few months of coaching occurs.
The caregiver and family consultant then work together to set realistic goals. Goals might include involving other family members in providing care, learning how to handle memory loss and other difficult situations, or resolving to take time for one’s own enjoyment to prevent caregiver burnout. The family consultant uses coaching strategies and techniques to guide the way. Metaphor is one technique family consultants employ. For example, coaching is like helping a car mechanic work on the mechanisms of life – handing them tools and holding the light so they can see what needs to be done and have both hands free to do it. Other techniques include reframing to introduce new perspectives, asking powerful questions that cause reflection and get to the heart of the matter, and requesting or inviting the caregiver to stretch beyond self-imposed limits. The family consultant communicates with the caregiver on a periodic basis to offer ongoing support and direction, especially as new issues arise.
In 2005, with a budget of nearly $140,000, we served 370 caregivers. Approximately 80% were women, with the number of men on the rise. While most caregivers were under age 60, Eldercare Partners served 20 caregivers over the age of 80 in 2005. The service is provided by 13 family consultants who are licensed social workers or other geriatric specialists with extensive caregiver service experience at the participating member organizations. A centralized intake function is staffed at one organization. Grant administration is handled by the part-time SASS executive director and an assistant, and supervision and program management are provided as an in-kind contribution by member organizations. The partner organizations are the Amherst H. Wilder Foundation, DARTS, Human Services Inc., and Senior Community Services. Managers from each organization meet monthly to oversee program activities, implement quality assurance and staff training initiatives, and contribute to program development. Family consultants from all organizations meet together quarterly for ongoing training, case consultation, and policy and process review.
How Criteria are Met
Innovation: Applying coaching techniques to caregiver services was a new concept when we began. A life coach was hired to train staff and serve as a mentor during the program start-up period. Unlike care coordination, education, or service planning, the coach is there to help the caregiver define reasonable, realistic, and attainable goals, to provide structure for making progress, and to support, validate, and nudge the caregiver forward.
The flexibility and affirmative nature of the service are also key innovations. After the initial assessment, the caregiver drives the process, selecting the frequency, method (whether in person at home or office, by telephone, or, increasingly, via e-mail), and focus of future contacts. Interaction with the family consultant may ebb and flow as goals are reached or revised, new caregiving challenges arise, or periods of calm are enjoyed. It’s somewhat trendy to have a career coach or a personal trainer to help you change and achieve goals. Capitalizing on the popularity of coaching and the positive association people have with it, we chose to apply that stigma-free and pathology-free approach to the world of caregiver support.
Effectiveness: In mid-2004, Dr. Terry Lum of the University of Minnesota evaluated the effectiveness of Eldercare Partners Caregiver Services. Using a pre- and post-test longitudinal design to determine the program’s impact on caregiver burden, and a survey questionnaire and case record review to examine other effects, Lum measured caregiver burden, expected duration of caregiving, ability to provide care, and access to support services. This evaluation found that the service does reduce caregiving burden. The first Zarit Caregiver Burden average score was 44 (indicating moderate to severe burden), and the average follow-up score was 39 (indicating mild to moderate burden), a statistically significant decrease. Survey results found that 91% of the caregivers believed the coaching helped them provide in-home care longer, with 50% stating it helped them provide care much longer. 75% of the caregivers reported that the service improved their communication skills with their care receivers. 95% said it helped them cope with their caregiving role better or much better. 86% reported gains in insight into their caregiving role. And 90% reported that it helped them understand the importance of taking care of themselves. Overall, 83% of the caregivers reported that they were much more or somewhat more able to provide care after receiving the services. Efforts are underway to revise intake, assessment, and goal-setting tools to enhance program effectiveness and align with a second program evaluation to be conducted in partnership with the University of Minnesota Family Caregiving Center, if funds allow. These enhancements include adding a depression screening tool and implementing a goal-attainment scaling process.
Basis in Research: The mental or emotional strain experienced by caregivers impacts not only their quality of life, but their length of life. A 1999 study found that elderly spousal caregivers experiencing caregiver strain had mortality risks 63% higher than non-caregiving controls. (Schulz R, Beach SR (1999), Caregiving as a Risk Factor for Mortality. JAMA 282(23):2215-2219). A recently released study showed that hospitalization of a spouse for a serious illness increases mortality of their partner as well. (NA Christakis et al. (2006) Mortality after Hospitalization of a Spouse. New England Journal of Medicine 354(7), 719-730). In 2001 our Area Agency on Aging convened focus groups of service providers and consumers to address how to reduce that strain and better support caregivers. They articulated what was missing – a one-to-one approach, connecting with someone who would get to know them and their situation and be there to call on throughout the twists and turns of their caregiving experience. It made sense for Eldercare Partners to help with systems development around these needs by augmenting members’ existing caregiver services with a program that would fill that void – a coach, a guide, a navigator for the caregiving journey.
Diversity: Although caregivers of all ages have used this service, it seems to especially resonate with adult children caregivers – baby boomers, many of whom are working caregivers, who appreciate the need to maintain balance among their many personal and professional roles.
This model’s applicability to diverse cultural and ethnic groups and to rural communities has been largely untested so far, but this is soon to change. One auxiliary feature of the service found to be especially useful to immigrant communities has been visits from a nurse, physical therapist, or occupational therapist to provide individual training or recommend adaptive equipment for specific caregiving situations. Tapping into the expertise of one member organization’s home care agency, Eldercare Partners makes these non-Medicare-eligible training visits available to clients of any agency in the [Twin Cities] Metropolitan Caregiver Network, a provider consortium initiated by SASS that now has 25 participating organizations. Group training for Hmong and Vietnamese caregivers has also been offered through this aspect of the program. Out of this connection has grown the potential to partner more formally with two organizations serving Southeast Asian and African families to bolster their caregiver services and to determine whether our coaching model suits those communities, or assess how to modify it to serve them well. Meanwhile, the Minnesota Department of Human Services has engaged Eldercare Partners to develop a curriculum and train caregiver coaches statewide. These trainings, the first of which take place December 2006, will reach practitioners from a wide variety of service settings in large and small cities and rural areas, thereby further exploring the potential applicability of the coaching model.
Replication or Adaptability
To our knowledge, our program is one of the first of its kind nationally. The collaborative nature of the service is one of its greatest strengths. By uniting the service menus, skill sets, and geographical reach of several organizations, Eldercare Partners can offer a level of expertise and an array of supports that is broader than any one agency could provide alone. Members use the same standards, definitions, policies, and procedures to ensure consistent high quality. The centralized intake function, staffed throughout business hours, streamlines program access and data collection. A call to one number from anywhere in this large metropolitan area connects the caregiver to a personal guide for their caregiving journey – a guide backed up by a multitude of related services. The program could be partially replicated (on a small or large scale) in a single agency if experienced staff have the appropriate training and procedures. A collaborative effort of several agencies requires more planning initially, but has the distinct advantages of broader geographic coverage, combined marketing and funding efforts, and peer oversight to ensure quality control. Since this was not the first service developed by our collaborative, much of the necessary infrastructure was already in place.
Our family consultants began with deep expertise in the fields of aging and caregiving, honed over years of direct practice in their respective organizations. The solid reputation of the practitioners and their organizations was a great asset for program promotion and acceptance. A similar experience base will be an important foundation for any new program. Whether replicated in a single agency setting, a multi-agency collaborative structure like ours, or even as a private practice, staff will require training in coaching techniques distinct from other skills. This is critical, and one of our most important lessons to date. As talented as our social workers and geriatric professionals were at the outset of the program, their academic and professional experience had not prepared them in the art of coaching, a significant skill in its own right. The initial training and periodic update sessions by a highly respected coach help staff become grounded in coaching philosophy and techniques. These skills are reinforced through quarterly family consultant meetings where peers share their successes and challenges. As a result, the Eldercare Partners staff have become increasingly confident in the efficacy of their coaching work and their ability to differentiate it from other possible interventions. Although our staff have not pursued coaching credentialing, this too is an option. There are a number of coaching training programs and professional associations that could serve as a resource to emerging programs.
In addition to the cost of staff training and establishing program policies and procedures, the major costs will be the portion of direct service staff assigned to the program, with the attendant costs for supervision (whether internal or consultative) and support staff. Critical start-up support for Eldercare Partners Caregiver Services came from a state service development grant offered for initiatives that help Minnesota’s long-term care system rebalance itself away from institutional care toward a stronger home and community based system. Since the end of that first year, our program has been supported by the Metropolitan Area Agency on Aging and the Minnesota Board on Aging through Title III-E funding from the federal Older Americans Act. It is a reimbursable service under our state’s Medicaid waivers for in-home services, but has yet to be tapped by case managers and families who are focused on the service package for the care receiver. This could change if family caregivers of older adults begin to embrace the consumer-directed service model now being encouraged in Minnesota. Outside sources of funding will be needed to establish a program like ours, since it’s unlikely the program could be supported initially through client fees.
Although the Eldercare Partners service model has not been formally replicated, the Minnesota Department of Human Services has identified caregiver coaching and counseling as an important service that should be made available throughout the state. Using our best practices and experience with hundreds of caregivers, Eldercare Partners is working with the state and the Metropolitan Area Agency on Aging to provide caregiver coach training that will assist other organizations in developing a caregiver coaching and counseling service in their area. We will be glad to provide additional information to aid program replication.
The potential for our program is clear; an estimated 320,000 caregivers live in the seven counties served by Eldercare Partners. The mission we’ve fostered since 1999 will reach new heights as we continue to develop and apply innovative approaches to caregiver support and education.
For more information, contact:
Beth Wiggins
Vice President of Community Services
DARTS/Eldercare Partners
1645 Marthaler Lane
West St. Paul, MN 55118
651-455-1560
beth.wiggins@darts1.org
Visit our website at www.eldercarepartners.org
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Mountain Empire Older Citizens, Inc., Big Stone Gap, VA
Family Support Services
Applicant Organization
Located in the mountains of southwestern Virginia in the midst of Central Appalachia, Mountain Empire Older Citizens, Inc. (MEOC), a private non-profit corporation, is the designated area agency on aging, public transit entity and Children’s Advocacy Center for the Virginia Counties of Lee, Wise and Scott and the City of Norton. Established in 1974 with a small $12,500 planning grant, MEOC presently operates a $5.2 million budget using 87 different funding sources to provide 35 direct services to older individuals and their families.
MEOC's mission statement states, in part, that it is committed to the prevention and unnecessary and/or inappropriate institutionalization of older persons by: the development and maintenance of comprehensive user- friendly community based long term care services; recognizing that families provide the bulk of care for older people and thus developing a user-friendly comprehensive infrastructure to support family caregivers; and serving as an active and responsible advocate on issues affecting older persons. MEOC is based on the strong belief that older people, if given the choice, prefer to live in their own homes in their own communities and not be placed unnecessarily and inappropriately in an institution. MEOC works to provide choices for caregivers.
Established in 1974, MEOC has a long, impressive history of successfully and effectively developing and delivering in-home services in a rural, mountainous area. The major in-home services developed by MEOC are: in-home respite services, home delivered meals, homemaker services, personal care and personal assistance services, emergency services, and Lifeline. An eight member Board of Directors and a 50 member Advisory Council govern MEOC. Members represent all jurisdictions served by MEOC and include a combination of professionals, older citizens, family caregivers, community leaders, church leaders and elected officials. MEOC also has eight additional program-specific advisory bodies for: Foster Grandparents Program/Retired Senior Volunteer Services; Employment Services for Older Workers; Kinship Care; Mountain Laurel Cancer Center; Healthy Families; Senior Navigator; Transportation and the Children's Advocacy Center. Also, a community task force was organized by MEOC to address concerns of families caring for frail older relatives.
In addition to the direct services provided by MEOC, it serves the area through its advocacy, program development and planning responsibilities.
MEOC has received national and international recognition for its family caregiving services from the National Council on Aging, the Carnegie Institute-United Kingdom, The Federal Transportation Administration, the Ohio Valley-Appalachian Regional Geriatric Education Center and has hosted the Family Caregivers Sub-committee of the national Advisory Committee on Rural health and Human Services.
Caregiver Support Services
MEOC's Family Caregiver Support Services address the needs of families caring for persons age 60 plus and the needs of relative caregivers with children 18 and younger. The caregiver support infrastructure developed by MEOC includes ten community group respite centers, an in-home respite program, adult day health care, care coordination and nine caregiver support groups (including two Alzheimer's groups, an online Alzheimer's support group and four relative caregiver groups). A Family Caregiver Resource Center, an annual Alzheimer's Seminar, caregiver education programs, a quarterly newspaper, pharmacy assistance, personal care, homemaker services, transportation and home safety program are additional services available to assist caregivers. The KinCare Program (relative caregivers) provides assistance annually with back to school supplies, monthly family social activities, case management, transportation and holidays for kids.
Since 1982, the agency has placed a major emphasis on services that support, encourage, empower and educate family caregivers. Since the inception of the program, thousands of family caregivers have received assistance and an average of two hundred caregivers receive respite assistance through the program monthly.
Each year MEOC serves over 2,500 family caregivers in its emergency, transportation, home delivered meals, care coordination, information and assistance and personal care services programs and through its support groups and educational offerings. Administrative positions require a bachelor's degree in a field related to social work or human services. All of MEOC’s field staff are required to possess a minimum of the required forty-hour Department of Medical Assistance Services training component for Community Based Care providers. Previous experience in working with older individuals and those suffering from Alzheimer's disease or a related disorder is preferred. All field staff participate annually in a minimum of 12 hours of training focused on professional growth and the upgrading of skills.
MEOC regards partnering as a key to all its efforts. Since its inception in 1974, the agency has realized the importance of developing close working relationships with other agencies and organizations. Key partners involved in this effort are area hospitals, Parish Nursing Program, Center for Independent Living, AARP, Community Health Clinics, Senior Navigator, churches, Volunteer Interfaith Caregivers, local Disabilities Services Board, Retired and Senior Volunteer Program, local governments, civic clubs, Brookdale Foundation, Virginia Department for the Aging, and the Northeast Tennessee/Southwest Virginia Chapter of the Alzheimer's Association. A key to the success of the Caregivers program is the ability to mobilize community resources around the needs of family caregivers and to organize the support of local, state and federal elected officials. MEOC puts primary emphasis on organizing community support and involvement in its programming. MEOC's annual budget for Family Caregiver Support Services is $1.6 million (excluding transit).
How Criteria are Met
Innovation: What is unique about MEOC’s Program for Family Caregivers is that it is not just a single service, but it is a comprehensive set of services intentionally developed over the years for the purpose of providing a one stop entity for caregivers and for caregivers to have access to an infrastructure of support services to meet their needs. Since the inception of MEOC’s program for caregivers, we have remained focused on the goal of making it accessible, seamless, user-friendly, comprehensive and culturally sensitive to people in our region. Since 1982, the needs of family caregivers have been central to MEOC’s mission. All ongoing and proposed MEOC efforts are based on meeting the needs of family caregivers.
Using an Asset Based Community Development Model, MEOC remains focused on the strengths of our Central Appalachian area in solving problems. The glass is always seen as half-full, not half-empty. Dr. Guy Fridell summarized this approach when he said, "If the problems are within the community, the solutions are within the community." MEOC organizes the community’s strengths, in partnership with private, state and federal resources, to address needs as expressed by the local community.
Effectiveness: MEOC has grown from an area agency on aging offering basic Older Americans Act services to a multi-funded agency providing a wide array of services to caregivers and older individuals. These programs have been built over the years by: listening and responding to the expressed needs of caregivers; locating and securing new funding sources; and developing strong, diverse partnerships.
Since the inception of the National Family Caregiver Support Program of The Older Americans Act, many organizations now offer limited services to family caregivers. However, MEOC has always made the needs of caregivers central to all its efforts. All ongoing and proposed efforts are evaluated as to whether or not and how well they meet the needs of caregivers. The infrastructure of support services for caregivers has been built incrementally over a number of years. Thus, with national interest in support for caregivers reaching a tipping point, MEOC finds itself well positioned.
Basis in Research: Evaluations of services are ongoing, including routine reviews of care plans, satisfaction surveys with all caregivers and an "open door" policy that encourages caregivers to contact MEOC at any time to discuss issues of concern and offer new ideas. Family caregiver surveys reveal that older family members do in fact avoid institutionalization because of MEOC’s services.
We employ various means in soliciting caregiver input. Community needs assessments are completed annually with caregivers. Focus groups are held to discuss needed services and programs. Agency personnel serve on numerous advisory boards and committees of other agencies and organizations on both a local and state level. Community speak-outs are held at MEOC community centers to solicit concerns and ideas.
Diversity: MEOC uses as its standard for cultural competency and diversity the following definition: the capacity to function in more than one culture, requiring the ability to appreciate, understand and interact with members of diverse populations within the local community. Our written policies and procedures include a statement on non-discrimination; we are an equal opportunity employer; we provide training opportunities on diversity issues (ethnicity, gender, disabilities, sexual orientation, religion and culture); and we make provisions for non-English speaking person. We provide community outreach to traditionally underserved populations. As Appalachians, we find that we must spend much time educating those outside of our region to our distinct culture and that oftentimes it would be helpful for the Appalachian culture and its people to be part of diversity and cultural competency trainings offered elsewhere.
Replication or Adaptability
To replicate what MEOC does, interested parties would need to examine what they were presently doing and decide if they would like to reconfigure their existing services to make them user friendly and useful to caregivers. This should be done in partnership with caregivers. A logical starting point would be to identify caregivers in your community and invite them to share their thoughts and ideas. The necessity for meaningful involvement of caregivers in program development and design cannot be emphasized too much. It is critical that programs be designed and retooled to meet real needs as identified by caregivers. Otherwise, efforts risk becoming guided by what best serves the organization and not by what best serves the public.
MEOC's efforts could be replicated if an organization truly commits to this mission, functions as a team and avoids departmentalism within and turf problems without. Each agency department must absorb some costs, including costs related to actual provision of service and staff time. All staff must be flexible and willing to wear several hats at once. Present times are very conducive to retooling existing programs and services and developing new initiatives to serve caregivers.
When MEOC began seriously to develop new programs for caregivers, we held a series of five public hearings across our region, one in conjunction with the State Alzheimer’s Commission and one in partnership with the State Department for the Aging, specifically to hear from family caregivers. We provided respite services and transportation for any caregiver wishing to attend and included lunch as a part of the activities. There was a great turnout and caregivers spoke movingly and emotionally of their loved ones and their situations. The major, overriding theme of each hearing was the need for regular, routine respite services. Thus, guided by the community to give our primary attention first to developing respite services, we proceeded to do just that. By listening to caregivers and acting on their advice, we established the environment of trust that is so important to our success
We first developed an in-home respite services program using a grant from The Global Ministries of The United Methodist Church. This was the seed money we needed to get started. The following year, we sustained and expanded the respite program by tapping in to Virginia General Assembly funding and matching it with local funds. Respite Services was our flagship program and all subsequent actions built on that program. We then were drawn to the Brookdale Foundation and its Social Model Community Group Respite Program. Caregivers said that they wanted opportunities for their loved ones to be able to get out of the house and be involved in activities specific to their abilities and which would provide mental stimulation. Brookdale provides seed grants to develop this type of community model and provides guidance on how to develop these programs. Their web site, www.brookdalefoundation.org, contains information on this initiative. Our decision to seek funding for a seed grant from
Brookdale was a major step in the development of our infrastructure of support services. We now have developed ten community group respite centers spread throughout our large geographic service area so that a group respite center is accessible to everyone in our service area. That was our goal when we opened our first center. We have co-located respite sites at Older Americans Act congregate nutrition centers and have been able to share the costs of space, staff, transportation, food and supplies with that program. Also, if a congregate nutrition site participant becomes too impaired to participate in the nutrition program, we can transition her/him in to the group respite program.
Developing win-win partnerships with a host of others is very important, no matter the service, initiative or activity. For example, we are able to offer top quality training for caregivers and professionals in our region because we have involved 20 other organizations and associations who each provide a small amount of funding which, when pooled, allows us to bring nationally and internationally respected speakers to the middle of Appalachia. We are able to teach high school students to teach caregivers to use the Internet because we have partnered with the local school board, the Health Sciences Library outreach staff of a major university, the Alzheimer’s Association chapter, adult basic education program and the transit, case management and family support services departments of MEOC. We have developed a technology manual and are developing a “Best Practices” manual that we will be happy to share when available which will guide in replicating this project elsewhere.
Whenever we undertake any initiative, we do it in partnership with others. Our advice is to choose your partners wisely and involve those organizations that share similar values and who understand partnerships and the concept of operating as a team. Unfortunately, not everyone knows how to play well with others and, as a result, these few entities and individuals can turn the best of plans toxic. Know your community and the players in it and involve those who bring positive energy to situations and who are guided by mission and not self-promotion.
We have consciously sought funding from scores of national, state and local funding sources to provide the array of caregiver services we offer. We would be happy to share all of our funding sources and amounts of funding with interested parties. We have become known as advocates for the needs of caregivers and work in concert with others to make this issue part of the public discussion. We always include the voices and faces of caregivers in all situations and never presume to speak as the expert. Caregivers are the experts and we recognize and honor that.
Establishing and maintaining the trust of caregivers is essential. Without it, your programs will flounder and never really take hold. We welcome the opportunity to share our experiences. We are committed to fully disclosing any and all information requested that would assist others in replicating and /or adapting our program.
We have consciously sought funding from scores of national, state and local funding sources to provide the array of caregiver services we offer. We would be happy to share all of our funding sources and amounts of funding with interested parties. We have become known as advocates for the needs of caregivers and work in concert with others to make this issue part of the public discussion. We always include the voices and faces of caregivers in all situations and never presume to speak as the expert. Caregivers are the experts and we recognize and honor that.
For more information, contact:
Julia Trivett Dillon
Mountain Empire Older Citizens, Inc.
P.O. Box 888
Big Stone Gap, VA 24219
276/523-4202
jtrivett@meoc.org
Visit our website at www.meoc.org
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Stroke of Hope Club, Inc., North Palm Beach, FL
Caregiver Manual
Applicant Organization
The Stroke of Hope Club, Inc., a not-for-profit organization , was founded in 1984. The mission of the Stroke of Hope Club, Inc. is to work toward increased awareness of stroke prevention, community education and to provide information to individuals and families affected by stroke. We provide services to all stroke “victors”, their families and friends, recognizing that no two strokes are the same and no two families coping with stroke do so in the same way.
The Stroke of Hope Club, Inc. began by offering monthly support group meetings for stroke “victors” and their families. From the first meeting, our meetings offered information in general, and also an opportunity for caregivers to meet separately from stroke “victors” in order to gain the support they so desperately need. Over the past 22 years, our organization has seen incredible growth. What has remained unchanged is that there are no dues or fees charged for our programs, although donations are accepted, and that we rely on volunteers for over 95% of our programs and services.
The Caregiver Manual
The purpose of the Caregiver Manual is to provide the guidance and information necessary for someone else to step in and take over for an individual caregiver. The Caregiver Manual is developed and printed while a caregiver and “victor” meet with a caregiver education volunteer. Information is typed directly onto the computer templates as each section is reviewed. The information is then printed, placed in protective plastic sheets and then these sheets are placed in a three-ring notebook. The Caregiver Manual is made up of seven sections:
- Primary Information:
This section contains all pertinent personal information – SS#, legal names and address, insurance information, physician information, and other items identified through discussion with the caregiver and stroke victor. Copies are made of all insurance cards and placed in the Manual.
- Medications:
A list of all medications, dosages, and how to administer these medications is prepared. This information is typed directly on to our “medications template”.
- Therapies, Social Activities and other Resources:
This section contains all contact information and scheduling information for: Occupational therapy, speech therapy, physical therapy, Stroke of Hope
Classes, hairdressers (manicure, etc), exercise programs, church/temple services, other.
- Phone Book:
This section includes all emergency contacts and physician information, immediate family contact information, professional advisors (therapy, etc.), general phone book (friends, distant family).
- Hurricane/Disaster Preparations:Needs are listed and plans are outlined
- Wishes/Advanced Directives: This section contains copies of each of the following documents:
Living Will, DNR, Health Care Surrogate, Power of Attorney, Funeral Arrangements, Other.
- Designs: This is where we discuss with each caregiver what we may have overlooked, what is important to them.
Each caregiver and victor is encouraged to inform their family as to what this Manual looks like, how and when to use it, and where it can be found in the home. Caregivers and victors are encouraged to meet with the caregiver education volunteer quarterly to update the information.
The Caregiver Manual program was first introduced in 2004. We have met with over 50 caregivers of stroke “victors” within our community. There is no limit as to the population of caregivers this Manual can serve. Any caregiver will benefit from taking the time to meet one-on-one with a caregiver education volunteer to develop their own Manual.
The cost of materials is less than $10 per manual. Staff needs include Caregiver Education Volunteers. Each volunteer completes an 8 hour in-service training program, meeting with the advisory board members of the Stroke of Hope Club, Inc. This in-service training review the policies and procedures of the Stroke of Hope Club, Inc., HIPAA laws and restriction, confidentiality procedures and education in the area of the needs of the caregiver. These volunteers need to demonstrate excellent listening skills, an ability to communicate well, and good time management abilities.
This program was developed by our own Caregiver Education volunteer, caregivers and stroke victors.
How Criteria are Met
Innovation: The Caregiver Manual is a program unique to the Stroke of Hope Club, Inc. It was developed in response to the needs of our caregivers, and no doubt enhances their quality of life. Caregivers report that by having someone help them record all of this necessary information, some of the daily stress and frustration is lifted. In addition, the long-term worry of “what happens if something happens to me?” is reduced as a result of the Manual.
Effectiveness: Each caregiver in our organization has been invited to meet and create a manual with our volunteers. Quarterly follow-ups have been offered to each caregiver. Thirty caregivers have participated in this program from within our organization. Effectiveness/impact has best been demonstrated through the on-going requests from other individuals or groups for assistance in developing their Caregiver Manual.
Basis in Research: The research base was direct contact and reporting from caregivers themselves. Through the many caregiver support groups we have held over the past 22 years, the overwhelming concern of “what if “and “who would take my place” and “how would they know what to do” became a constant theme. This program grew out of a caregiver’s simple statement, “I wish I had a book of all the information my daughter would need to do my job”. This was all the research that was necessary, in our opinion.
Diversity: The one-on-one communication between the caregiver and the caregiver education volunteer assures that individual needs among the diverse members of our community are met. Caregiver Education volunteers are trained to respect individual differences and to assure that each Caregiver Manual meets the needs of the individual caregiver and “victor”.
Replication or Adaptability
The Caregiver Manual program as developed by the Stroke of Hope Club, Inc. can easily be replicated and adapted. The Caregiver Manual is NOT specific to the population of stroke “victors” and caregivers. It is readily apparent to all that have used this Manual that it can provide great comfort and peace of mind to any and all caregivers. In the past six months, individuals have shared their Manuals with family members living in Michigan, Georgia and throughout Florida, assisting them in the development of their Manual. These other family members have experienced a variety of medical conditions and have come to greatly value having all of their medical and family information in one location. It is the intention and the hope of the individuals directly responsible for the development of the Caregiver Manual program that is established in any and all organizations, as long as the Program is replicated, and not just the Manual.
The success of the Caregiver Manual Program is first and foremost a result of the one-on-one communication between the caregiver, victor and the caregiver education volunteer. Any organization wishing to replicate this program must be cautioned, however, that development of the Manual with a trained caregiver education volunteer is imperative to the success of the Caregiver Manual Program. It has been our experience that caregivers are too over-whelmed with the many roles they already provide to be expected to develop their Manual on their own. The primary goal of the Caregiver Manual program is to lessen the burdens and concerns of the caregiver, not to contribute to them by providing them another task they need to complete. Through the one-on-one communication with a caregiver education volunteer, we are often able to identify needs of the caregiver that may be met by community services they had not yet obtained. We can refer caregivers to counseling services, respite or caregiver training offered through our offices.
The entire budget for the Caregiver Manual Program must include:
- the cost of the Manual itself, which is less than $10
- Potential costs of a staff member dedicated to providing in-service training for volunteers and who can monitor the development of the Caregiver Manual Program. The Stroke of Hope Club, Inc. is unique in that volunteers provide these services. The potential cost of a staff member will vary between organizations.
The volunteers who developed this program for the Stroke of Hope Club, Inc. will provide all the details necessary to allow other organizations to adapt or replicate the Caregiver Manual Program. Interested individuals may contact the Stroke of Hope Club, Inc. by telephone: 561-745-0400 or by email: info@strokeofhope.org Label your request “Caregiver Manual Program Development” and one of the volunteers directly involved in the development and implementation of this program will respond to your request. Samples of templates used to create the various sections within the Manual can be provided. Descriptions of materials used to create the Manual itself can be provided if necessary. Outlines of in-service training of volunteers for the caregiver education program can also be shared with interested organizations.
For more information, contact:
Liz Blake
Stroke of Hope Club, Inc.
860 U.S. Highway One, Suite 106
North Palm Beach, FL 33408
561-745-0400
lizblake@strokeofhope.org
Visit our website at www.strokeofhope.org
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Wisconsin Alliance for Family Caregiving, Madison, WI
Strengthening the Delivery of Family Caregiver Education Through Partnerships
Applicant Organization
The Wisconsin Alliance for Family Caregiving became a nonprofit organization in 2006 and grew from the success of teaching the curriculum, Powerful Tools for Caregivers. Caregiving professionals recognized the value of one organization providing leadership in the selection, training, dissemination and evaluation of family caregiver curricula statewide. A newly expanded 22-member board of directors, along with executive, finance, and education committees, leads the Alliance.
Program
The Alliance educates professionals who work directly with family caregivers. We are not a professional organization for paid caregivers. We have a statewide network of advanced instructors, or master trainers, who train individuals as class leaders in four caregiving curricula. Class leaders go on to conduct classes for family caregivers throughout the state. The Alliance also organizes a biennial Family Caregiver Institute; offers caregiving resources on our website (fact sheets, newsletters, publications and web links to state and national organizations); supports local caregiving coalitions; and creates networking opportunities.
The Alliance has existed for six years and has trained some 400 individuals – educators, social workers, health-care providers, aging-network professionals and others – as class leaders in one or more of four curricula. Class leaders have, in turn, reached more than 2,000 Wisconsin family caregivers through workshops, consultations, support groups and other activities.
Our budget ranges from $20,000 to $30,000 a year, with funds from AARP Wisconsin, UW-Extension, the Area Agencies on Aging, the Bureau of Aging and Long Term Care Resources in the state Department of Health and Family Services, and other grants. The Alliance has a half-time staff member. As our organization grows and takes on more educational curricula, we will need more staff. Up to now, board members have filled many of the duties normally expected of staff. As for credentials, staff must have excellent computer and conference-planning skills. They must be organized, flexible, willing to work independently, familiar with Wisconsin’s Aging Network, and understand family caregiving concerns.
The University of Wisconsin-Extension and AARP Wisconsin provided initial leadership to a 12-person steering committee. UW-Extension developed and currently maintains the website, while AARP has provided financial support. During the past year, we have forged stronger partnerships with Wisconsin’s Area Agencies on Aging, the Hope of Wisconsin, Wisconsin Respite Association, UW-Milwaukee, the Alzheimer’s Chapter Network, and the state Bureau of Aging and Long Term Care Resources.
Other partners include our 75-plus member organizations, representing a diverse network of professionals; other caregiving organizations, alliances and coalitions; and, most important, Wisconsin’s family caregivers.
How Criteria are Met
Innovation: The Alliance fills the enormous need for family caregiving education and support by offering a single statewide resource for innovative hands-on training; an innovative website giving professional trainers access to all the promotional, educational, and evaluation materials they need to conduct classes; and opportunities to build caregiving partnerships. The Alliance is unique in its ability to serve as a powerful “voice” for family caregiver issues and concerns as the state of Wisconsin redesigns its long-term care services.
Effectiveness: Class leaders are passionate about the changes they see in caregivers who attend family caregiving classes. ‘Powerful Tools’ class leaders tell Alliance members again and again: “These classes are life-changing. I’m amazed at the changes that occur immediately with individuals who take the class. They look better, are more confident, take control and feel as if they have options and choices. They’re able to take charge of the caregiving situation.”
We collect evaluation data on all our curricula. For Caregiving Relationships and Caregiving Near Life’s End, we have data on the number of caregivers reached and class leader feedback. Powerful Tools has the most evaluation data, which can be found at http://www.uwex.edu/ces/flp/impact/empowering.pdf
Pre- and post-evaluations show dramatic increases in caregivers' abilities to get needed help, cope with stress and discuss concerns. Caregivers embraced the tools taught during Powerful Tools’ classes. For example, evaluations from 800 participants show that after the class: 667, or 82 percent, began using action plans; 605, or 74 percent, use relaxation tools; 631, or 77 percent, use "I" messages; 346, or 42 percent, practice assertive communication; 590, or 72 percent, use positive self-talk; 196, or 24 percent, practice family meetings; and 229, or 37 percent do long-range goal setting.
Basis in Research: All our caregiving curricula build on the knowledge and research of university researchers. For example, University of Illinois Extension staff developed Caregiving Relationships; University of Florida researchers developed the evaluation for Caregiving near Life’s End; a retired Oregon State University Extension gerontologist created Powerful Tools; and a University of Wisconsin-Extension specialist and a county educator adapted Elder Care and Work to fit Wisconsin caregivers.
The Alliance supports several research projects at UW-Milwaukee. For example, Alliance members encourage caregivers to join the League of Experienced Family Caregivers, a registry of family caregivers, so that caregivers can share knowledge and insight on their caregiving experiences. League research is shaping the "caregiver identity change" theory being developed by Dr. Rhonda Montgomery of UW-Milwaukee and Dr. Karl Kosloski of the University of Nebraska at Omaha.
Last year the Alliance conducted its own research, asking 168 social workers, health-care providers and others during 12 listening sessions how we could fill statewide gaps in education, resources and support for family caregivers. In response, caregiving professionals identified six major concerns. Issues included family caregivers not identifying themselves as caregivers and thus not participating in educational programs, and caregivers’ reluctance to accept help. The Alliance used data gathered during listening sessions to develop a strategic plan to meet the educational needs of family caregivers throughout Wisconsin. To see a report on the listening sessions, visit http://www.uwex.edu/ces/flp/caregiving/alliance/news/index.cfm
Diversity: The Alliance addresses cultural, racial, ethnic, gender, age, and other disparities among caregivers and care receivers through partnerships with organizations representing many races, cultures, ethnic groups, ages, abilities, and income levels. We work closely with caregiving professionals to develop educational programs that acknowledge and honor Wisconsin’s geographic and cultural diversity. And we teach a variety of curricula to meet the diverse needs of Wisconsin’s family caregivers. Powerful Tools, for example, is a six-week course focusing on spouses and caregivers who have provided care for an extended time. Elder Care and Work, on the other hand, is a one-day course for employees trying to maintain full-time jobs while caring for family members.
Replication or Adaptability
Replicating an organization such as the Wisconsin Alliance for Family Caregiving requires a committed core of individuals who believe that by working together they can create something that none could create alone.
Vital to our success have been partnerships with family caregiving coalitions and organizations that provide services to family caregivers around the state. Listening sessions, held last year, added greatly to our understanding of family caregiver needs and what we could do to fill them.
During the past six years, we have learned to persevere despite obstacles, to build on our successes and to constantly evaluate the impact of our educational programs.
For those interested in replicating the Alliance, we recommend that you:
- Build on existing structures in your community, region or state.
- Become a nonprofit, a structure that allows everyone to contribute to a new entity that is owned by all, and also reduces turf battles.
- Find ways to use and build on the expertise of member organizations.
- Find objective, outside consultants to help your group work through strategic planning, vision and mission development.
- Develop a source of funding for staff and out-of-pocket costs.
A good starting point is meeting with committed individuals to fashion a vision for how you can help meet the educational needs of family caregivers. Building a state or regional network requires at least a part-time staff person, an organization capable of developing and maintaining a website, and, of course, fiscal support.
For those interested in replicating the Alliance, our board members and president are more than willing to share our experiences, expertise and advice. We can also share our perspectives on basic website needs. Our site is comprehensive, offering teaching materials for class leaders and master trainers; state and national caregiving organizations; caregiving reading; caregiving demographics; and statewide postings of family caregiving classes and conferences.
A group might want to adopt part of our model, starting small and listing a few caregiving classes and resources. Maintaining a website takes time and technical expertise, and should be tightly structured to fit an organization’s needs and interests.
Over the years, the Alliance has developed formal processes for training class leaders, standard materials for evaluating caregiving classes and collaborations, and templates for partnerships, which could also be replicated.
Our nonprofit organization would not be appropriate for replication where intractable turf issues exist between organizations, agencies, and other family caregiving groups. Replicating or adapting a network like ours requires, most of all, a desire to support family caregivers and a plan to make your vision a reality.
For more information, contact:
Mary Brintnall-Peterson
University of Wisconsin-Extension
432 North Lake Street, 301 Extension Building
Madison, WI 53706-1498
608/262-8083
Mary.Brintnall-Peterson@ces.uwex.edu
Visit our website at www.uwex.edu/ces/flp/caregiving
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Alzheimer’s Association of Los Angeles, Riverside, and San Bernardino Counties, Los Angeles, CA
Asian American Dementia Care Network
Applicant Organization
The Alzheimer’s Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for diverse populations with dementia, their families and caregivers; and to reduce the risk of dementia through the promotion of brain health. Our overall goal in Los Angeles is to meet the needs of an ethnically and culturally diverse population by developing and testing innovative models of service delivery for at-risk and under-served populations with Alzheimer’s and related dementias.
Program
The Asian American Dementia Care Network builds upon inter-organizational collaboration to develop and provide dementia care services in under-served ethnic communities. The Network brings together nonprofits, community stakeholders, and government entities to problem solve together in order to fulfill community needs in a culturally acceptable manner. The goals of a Dementia Care Network are to: (1) Establish linkages and build trust between local community organizations and the Alzheimer’s Association; (2) Assess community needs and barriers to service delivery; (3) Implement linguistically and culturally appropriate community outreach and education to reach caregiving families; (4) Facilitate access to existing services; (5) Facilitate program development and expansion; and (6) Evaluate existing translated information, develop linguistically and culturally appropriate materials, and disseminate them to the community through provider networks.
In July 2000 the Asian American Dementia Care Network began targeting Chinese and Japanese family
caregivers in Los Angeles and Chinese and Vietnamese families in San Jose, California. Later, the project
expanded to include the Chinese community in San Francisco and the Korean community in Los Angeles.
To date, 468 family caregivers have received hands on assistance, and over 8,000 have benefited from
linguistically matched education about memory loss and Alzheimer’s disease. In addition, direct caregiver
support activities that have been most used include respite care funds (223 families); support groups (6 new
groups established and conducted in Japanese, Chinese, Vietnamese and Korean); and caregiver training.
The annual budget for the implementation of four Networks during FY07 is $383,500. The program can be done in a single community for much less. Historically, this project has been supported through an assortment of public and private dollars. The minimum staffing for the project is a project coordinator and a Care Advocate. The project coordinator should have extensive knowledge of Alzheimer’s disease and experience in coalition building. Care Advocates are “home grown” – typically individuals that are bi-lingual, bi-cultural and very familiar with the targeted community. Past Care Advocates have ranged from relatively inexperienced individuals with undergraduate degrees to graduate level professionals with extensive experience. Generally, the Care Advocate is an employee of a partner agency that has presence in the target community. The role of the Care Advocate is to conduct outreach into the community through traditional locations like churches, senior centers, social service and medical agencies, and to identify non-traditional locations for outreach in the targeted community such as ethnic markets and cultural festivals. When new families are identified, the Care Advocate may conduct a home visit and safety check to evaluate the needs of the patient and family. She will then work with the family caregivers to develop a care plan and follow up with the family to assure that they connect with and receive needed services. The Care Advocate also delivers culturally and linguistically appropriate services such as caregiver support groups and educational programs. Finally, after acquiring experience and, sometimes in conjunction with the staff of the Alzheimer's Association, the Care Advocate is involved in educating colleagues within their agency about dementia and its implications through professional training workshops or case consultations. The goal of this work is to embed dementia knowledge into the host organization so that the community is left with a dementia capable resource even when the project’s funding ends.
The Alzheimer’s Association’s role is to work with members of the Dementia Care Network to complete a needs assessment, to train partner agency staff in issues around dementia, to translate and print materials, to process respite reimbursements and to collect program evaluation data. Although there are clear roles and responsibilities by different parties, the work is conducted and implemented jointly. Additionally, a community advisory board serves as an oversight committee, providing guidance and expertise in delivering appropriate services and programs.
How Criteria are Met
Innovation: Ethnically diverse individuals with dementia and their families face unique barriers to accessing services. Among the issues identified are language differences, cultural beliefs about dementia and the caregiver’s role, limited financial means, low educational backgrounds, isolation and alienation and lack of knowledge among community-based service providers in ethnic communities about dementia and services available to affected persons. The Dementia Care Network addresses these issues by increasing awareness of the disease through outreach and the ethnic media; creating culturally and linguistically appropriate literature; offering Care Advocates; providing support groups in the language of choice; and, helping families with their respite expenses. The strength of the project is the collaboration between agencies. These partnerships result in our collective ability to develop and offer culturally competent programs, and, it results in our partner agencies institutionalizing their newly acquired dementia capacity in the services they offer to the community. Examples of this type of collaboration include translation of materials, joint education presentations, and, cross training of staff on issues of dementia and cultural competency.
Effectiveness or impact: Data for the current project is limited as there is a lack of funds to collect and evaluate the data. Through more informal mechanisms, we monitor frequency of use and types of services, evaluate consumer satisfaction and assess the progress made addressing gaps in service. Extensive data collected for El Portal, the Latino Dementia Care Network model, demonstrated that the model led to a significant increase in service utilization by a community that historically underutilized existing programs.
Basis in Research: : Based on data collected through El Portal, the Administration of Aging deemed the Dementia Care Network as an evidence-based model that effectively reaches, serves, and provides quality programming for ethnically diverse families impacted by dementia. During 2002, nine focus groups were conducted in Chinese, Vietnamese and Japanese, in both Los Angeles and San Jose, to determine attitudes towards Alzheimer’s disease, challenges faced by Asian caregivers, and recommendations for promoting culturally sensitive dementia care. The focus group data had a strong influence on terminology and literature used for the project.
Diversity: The Dementia Care Network was developed for and replicated in diverse communities. In fact, to our knowledge, this model has never been replicated in a mainstream community. The Asian American population is a diverse group within itself. This model tailors the program and services to the specific needs and cultural values of each target community.
Replication or Adaptability
The Dementia Care Network is a model that has been successfully implemented in a total of six Asian American communities, as well as in Latino and African American communities in California. While each community had its own existing formal and informal network of agencies; cultural beliefs about health, memory loss and family obligation; and, varying immigration patterns, the core components of the model – the care advocate, community outreach and education, and partner cross-training – remain the same. The goal of the project within each community is to determine the most effective strategies of service delivery to reflect the nuances of the target community.
Created for community-based providers and agencies that wish to replicate the Dementia Care Network service delivery model in their communities, a replication manual exists and is available through the website www.alzla.org. The 85 page manual includes: a general overview of the model, its structure and components, key considerations, phases of development, profiles of the model’s implementation in the Asian American, Latino and African American communities, and sample forms. An accompanying CD provides sample forms, which can be adapted to suit the needs of individual projects. The Alzheimer’s Association agrees to full disclosure of all pertinent details to enable any other service provider to replicate the Dementia Care Network and provide a contact person to offer technical assistance to other agencies.
In order for another agency to replicate this project, the largest expense would be the two staff positions: one with dementia specific knowledge and one care advocate for the targeted community. Additional funding for creating culturally and linguistically appropriate literature would be a benefit although there is a wide range of materials in a variety of languages that already exists. Providing respite funds to reimburse families seems to have attracted some families to the project initially; they later benefited from the support and education.
The lessons learned from this project are varied and include the following:
- Utilize key community stakeholders or an advisory group. These individuals provide instant credibility and assist in navigating the target community and cultural norms.
- Maintain consistency, flexibility and an on-going commitment to serve the target community. Our experience is that the Alzheimer’s Association’s consistent presence in the community overtime, sometimes even years, allowed the community to build trust and understand our services.
- Mentoring care advocates. These individuals are the heart of the project and the greatest advocates for the families. Our experience is as these care advocates acquire new skills and knowledge, they grow into progressively more responsible positions. Within these new positions, they have the ability to continue to build the dementia capacity of their agency and their community.
- Allow time for “visible” results. Objectives around building trust and increasing awareness are difficult to measure. Frequently, it takes time to recruit clients and provide respite.
- Modify concept of the caregiver. Traditional thinking focuses on a primary caregiver. Our experience with these Asian communities is that the caregiver consists of the family unit with different family members responsible for different responsibilities.
- Standardize a translation protocol to ensure a high quality of materials. Poor translation can distance those that you are trying to attract. Additionally, an array of materials is beneficial as families are in need of information.
For more information, contact:
Susan Howland, MSG
Director of Education
Alzheimer’s Association of Los Angeles, Riverside, and San Bernardino Counties
5900 Wilshire Blvd, Suite 1100
Los Angeles, CA 90036
susan.howland@alz.org
323/930-6230
Visit our website at www.alzla.org
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Family Caregiver Alliance, San Francisco, CA
Supporting Caregivers Through Technology
Applicant Organization
Family Caregiver Alliance (FCA) is a not-for-profit organization that offers programs at national, state and local levels to support and sustain caregivers. Founded in 1977 by a small task force of families and community leaders in San Francisco, their commitment was to create support services for those struggling to provide long term care for a loved one who did not "fit" into traditional health systems: adults with Alzheimer's disease, stroke, Parkinson's, traumatic brain injuries and other debilitating disorders. Despite diverse diagnoses, the founding families shared common challenges: isolation, lack of information, few community resources, and changes in family roles. Their efforts formed Family Caregiver Alliance; began a statewide network of Caregiver Resource Centers (CRCs); and launched a national movement to recognize the immense contribution of family caregivers to the long-term health care of the ill and elderly in our country.
Today FCA, with a staff of 33, is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy. As the Bay Area CRC, FCA each year directly helps about 3,000 family caregivers who live in the greater San Francisco Bay Area. As the Statewide Resource Consultant, FCA assists the California Department of Mental Health in overseeing and advancing the statewide system of CRCs. As the National Center on Caregiving, FCA collaborates to accelerate development of high-quality, cost effective programs and policies for caregivers in every state in the country.
Program
For the past 20+ years, FCA has used technology as a solution throughout its programs, beginning with data collection and program reporting for the California Department of Mental Health and the California CRC system. Since 1990, FCA has concentrated on using technology to support family caregivers through education, services, research and advocacy, utilizing technology to further its core mission. There are programs that FCA has undertaken that can be lifted and used by most community organizations but there are other functions – like the website – that leverage FCA’s key core competencies of information and policy development that may be beyond the capacities of most organizations or not fit into the overall mission of service organizations. Under each section, information will be provided that covers practical considerations like budget and staff requirements and collaborative partnerships needed for a successful project. That section follows the discussion of how the criteria are met.
How Criteria are Met
Innovation: The key to technology adaptation within FCA lay not so much in application of a particular program but in an organizational culture that promotes technology as a possible solution to the challenges caregivers face or promotes dissemination of information to various audiences. Each use of technology responds to a problem defined by caregiver need or an enhanced communication strategy. FCA tracks trends in technology innovation and applications, always asking: “What’s useful at FCA? What is effective in disseminating policy and program data and in promoting grassroots advocacy efforts? How can we extend services to caregivers in a convenient way?” Technology solutions and experimentation are supported by FCA leadership and training has been done over the years to promote ease of use by staff. FCA has also formed partnerships with experts and researchers in technology to determine the most cost-effective means to meet the agency’s mission and serve its multiple audiences of researchers, policy makers, and families.
Effectiveness: The success of FCA’s technology programs are measured by a wide variety of benchmarks: usage rates, client satisfaction surveys, caregiver comments, levels of online group interaction, and follow up to determine if information linkage generates policy actions.
Basis in Research: Most of FCA’s technology innovations have been grounded in research, whether it is analysis of client data from the 11 Caregiver Resource Centers, field research in the 50 states, or online chronic disease self-management research (the basis for L2C). FCA continues to seek cost-effective methods to determine outcomes across its technology programs. Other programs, such as the Northern California Rural Caregiver Collaborative, have independent evaluators who bring their expertise in telehealth and telemedicine.
Diversity: Currently all of FCA’s technology projects are conducted in English with the exception of the availability of consumer information in multiple languages on the FCA website. However, many of the education projects have targeted rural and frontier communities in California. A pilot test is planned to test a Spanish language workshop by conference call in spring 2007 in collaboration with the Alzheimer Research Centers in California.
Projects and Services: Replication or Adaptability
Education Projects FCA developed and coordinated two Statewide Videoconference efforts, first in 1990 using satellite technology for sessions on legal planning and behavior management to 60 sites and in 2002, workshops on dementia care, Parkinson’s disease and Huntington’s disease held at 25 libraries, community colleges, schools and other community locations using Internet-based technologies. In 2005, FCA turned to Telephone Conference Call technology to deliver a three-part workshop series (long distance caregiving, behavior management, sibling negotiations) targeting rural and isolated caregivers and in which close to half of all participants were between 60 and 80. The teleconferences build on simple, ubiquitous telephone technologies that are free to the end user (a toll-free number), do not require transportation or substitute care of the care recipient, and can be scheduled during the day or evening hours. Best conducted in partnership with community organizations which can market and encourage participation by their clients, teleconferences offer a convenient, low-cost opportunity to reach those who may have never attended a community workshop. (About 50% of the CRC teleconference participants were new to caregiver education programs).
Replication and Practical Considerations Generally across the country, there has been investment in community videoconference technology infrastructure found in libraries, rural hospitals, health clinics, schools, distance learning centers, and county offices. These resources may be underutilized, depending on the community. Some, like telemedicine technologies, may have very busy periods of use during office hours but lay dormant after hours while libraries may not have trained staff to operate equipment after initial grants have expired. Despite some of these shortcomings, there exists in many parts of the country the infrastructure to conduct these programs with a likely expansion of telemedicine capabilities at the rural hospital and health clinic levels. Videoconference technology has the advantage of scalability to cover a local network, or regional or statewide capacity. It also offers interactivity depending on the number of sites involved. Videoconferences work best for topics needing a demonstration like the body mechanics of lifting a care recipient. Costs vary widely for use of these facilities although some sites may not have a use charge for community programs.
Conference call technology has the advantages of using an ubiquitous technology – the telephone – to deliver short (60 to 90 minutes) workshops. While this project usually requires an outside conference call service that can handle hundreds of callers, the price of this technology has decreased over time and the cost per minute has dropped to $.07/minute per caller recently. Using skilled staff in collaboration with experts in health, mental health, care management or legal areas, a focused hour of education can be provided for less than $10/per person (including marketing costs, telephone charges and registration costs).
Both of these programs need dedicated staff (1-2 depending on the size of the program) with backgrounds in education and aging issues working part time over a number of months to: identify the videoconference sites and the broadcast site; determine any cost of use for videoconference sites (some may be free, others need a fee for staff to be present during the program); set up agreements with a conference call vendor; possibly organize volunteers to be “greeters” and facilitators at the local videoconference sites; organize a planning committee; develop and disseminate marketing material; organize and train speakers; collect workshop handouts; conduct introductions to the programs, and evaluate the results.
Both types of programs are great partnership or coalition building opportunities. In fact, they will not succeed unless there are a wide variety of partners who can contribute expertise to planning and conducting the programs, resources for marketing to their clients and the general community and potentially identifying locations and volunteers to assist with the program. On statewide programs, FCA has had between 11 and 30 partners involved on some level of the project. In addition, both programs offer the possibility of targeting caregivers who need education in other languages and who may be spread out over a wide area that make smaller, in -person programs more expensive.
Recognizing the growing importance of the Internet and changing caregiving demographics towards more adult children, FCA launched its Website (www.caregiver.org) in 1995 with an emphasis on practical content for caregivers. Receiving over 750,000 visits annually (and averaging over 1,000 e-mail requests for assistance from caregivers nationally), it has won numerous awards for content and design.
Replication and Practical Considerations All community organizations should have a presence on the Internet. It is the way a majority of consumers will look for information in the community in the near future and it offers wide marketing opportunities. Having said this, there is a difference between having a web presence and operating a data-rich, interactive website. Unless an organization has as its core mission creating consumer information for wide dissemination or has significant capital to create original content or pursue licensing agreements to place content from other organizations or authors on their website, this is a very costly venture in both start up and maintenance. All service agencies should have a site that clearly states their mission, services, eligibility, hours of service, fees, location, contact information (including email) and other information that could provide a full description of the organization. If staff are available, the community agency should update their site with local program information (new projects, educational events, etc.) and consider providing a venue for consumers to start their application for services online. Costs for a simple web presence range from a low of $2,000 to tens of thousands of dollars per year,depending on the scope and staff involved.
At FCA, one of the core competencies is creating high quality consumer information, policy and research reports, and state databases that may be repurposed to suit a wide variety of audiences. The entire staff and a number of outside technology consultants are involved with the agency website, related technology initiatives, and information dissemination.
Service Delivery to Caregivers In 1999 with funding from The California Endowment and in collaboration with the University of Wisconsin, Madison, FCA launched Link2Care (L2C), a web-based information and support service (www.link2care.net) for high-risk caregivers of adults with dementia. In addition to information about medical conditions, behavior management and other practical information, L2C provides caregivers with a wide variety of interactive programs, including Ask the Expert (for advice on medical and legal caregiving issues), Journaling (a virtual spiral-bound notebook with tips and exercises), inviting the caregiver to write confidential thoughts, then add to them or delete them as desired; and an online Discussion Group to share ideas, get peer support and escape feelings of isolation so common when caring for someone with a dementing illness. Comments from two caregivers show the value of L2C:
I can't tell you how much I appreciate being able to ask questions and receive your helpful and supportive answers. And, it is so useful to use the Internet, because I can ask the question and get the answer when it is troubling me and not have to wait for several weeks until I can see someone.
I am very grateful for all the help and support I have received from L2C. For someone who was as computer-illiterate as I was when I first logged on, it was easy to understand and access the different sites.
Initially a five-CRC demonstration, L2C today is part of the CRC’s set of services and the only known statewide Internet-based service integrated within a traditional community-based caregiver support system. Currently over 1,600 caregivers participate actively in L2C, exchanging 10 to 30 messages daily through the Discussion Group and weaving technology-based solutions into their emotional support. For example, a caregiver seeking help to keep her parent from wandering away got tips within minutes on alarm systems—with links to vendors and installation instructions. In a 2004 satisfaction survey, 92 percent of the 208 L2C users surveyed said they were “satisfied” or “very satisfied” with service quality. Working in collaboration with the Alzheimer’s Research Centers in California, their clients will be able to enroll directly into Link2Care after clinical assessment. In 1997, FCA launched one of the first Online Support Groups for caregivers with approximately 800 caregivers currently participating in a very robust (20 – 30 messages per day) caregiver discussion group using a listserv format.
Replication and Practical Considerations Link2Care or similar type online support and education programs are recommended for consideration for large state or national organizations due to the initial investment and ongoing maintenance requirements. If organizations are considering a move into online services, it is strongly suggested that thought be given to licensing and modifying existing technologies. Another significant investment, aside from the site technology infrastructure is the initial cost of content development and ongoing maintenance. Again, this is an example of how FCA has leveraged its core competency of consumer information development into a different format for a targeted audience of CRC caregivers within California. Current staff for maintenance of the Link2Care site include the equivalent of one full-time staff person as well as technology consultants to refresh content, trouble shoot problems, create new programs and marketing materials and maintain contact with the CRCs for Link2Care questions and updates. The original grant from the California Endowment was for $333,000 and an estimated $150,000 has been spent in various platform and software updates during its operation. These figures do not include a valuation of content assets within Link2Care. For online support groups, the cost is fairly minimal – typically around $2,000 - $3,000 per group including monitoring – but marketing can be expensive. It has been our experience that unless you have a critical mass of around 300-400 participants using a listserv format, the group can be sporadically active at best. Bulletin board formats are very inexpensive but again, unless a critical mass uses your website, a call for help from a caregiver can sadly go unanswered for a long time.
Research FCA tracks service trends, caregiver characteristics, client satisfaction and reports on progress of the CRC system in California for the California Department of Mental Health. The data provides a rich context for determining new directions for service interventions and technology applications. In a current effort, FCA is conducting a project (the Northern California Rural Caregiver Collaborative) targeted to rural caregivers in partnership with a network of rural health clinics and hospitals to evaluate consumer preference and effectiveness of three modes of delivery for consumer education: videoconferences, teleconferences, and in-person programs. The evaluators are from the Kansas University Medical Center’s telehealth/telemedicine programs.
Replication and Practical Considerations FCA encourages additional research into consumer preferences and the effectiveness of using technology to extend service capacity of organizations. However, from our experience, two critical conditions must be in place for a research project to be successful. First, there has to be an investment of training and support for staff in using technologies in service delivery; and second, there has to be an existing relationship with the communities targeted by the research.
Advocacy State and federal policy makers, wanting ideas to improve policies for caregivers, inspired two other innovative uses of technology for advocacy. Since 2001, the bi-weekly Caregiving Policy Digest, sent by e-mail, has provided timely and relevant information such as new state and federal legislation related to caregiving concerns, state policy issues, national news, innovative programs, cutting edge research, conference opportunities, and media coverage on caregiver issues to over 2,800 subscribers. A recent example of how specialized information has worked in advocacy is how Washington State is now considering introducing legislation to include caregiver assessment within their Medicaid program modeled after the state of Idaho’s legislation was featured in Caregiving Policy Digest. The Caregiving Across the States Online Resource, based on FCA’s national field and survey research, became an interactive component of FCA’s website in 2005. It has information for each state and the District of Columbia on programs funded through the National Family Caregiver Support Program, Aged/Disabled Medicaid waivers, and state-funded programs that either have a caregiver-specific focus, or include a family caregiving component in their service package. FCA, learning that caregivers were also using the Caregiver Across the States database to research available services, will leverage the 50-state data base with expanded consumer information set to launch in early 2007 on its website under funding from The Langeloth Foundation.
Replication and Practical Considerations The power of using the Internet for advocacy purposes has been widely acknowledged as a viable and cost effective method for getting out key messages. FCA was neither the first nor the only organization providing policy information via email but the agency did focus its research and message to clear targets. In the Caregiving Across the States Online Resource, it came as a surprise that caregivers where using this section of the site as a way to understand benefits in an “at a glance” fashion since its original intent was to inform policy makers. Again, the agency used existing data as the core of building out a more consumer-friendly component of a resource data base of state level services for families. In these two programs, it is not the cost of technology that is the major consideration but rather the skill of the staff and the ongoing maintenance of effort that ensures the integrity of the information in the policy digest and database.
For more information, contact:
Kathleen Kelly, Executive Director
Family Caregiver Alliance
180 Montgomery Street , Ste 1100
San Francisco CA 94104
415/ 434-3388 or 800/ 445-8106
kkelly@caregiver.org
Visit our website at www.caregiver.org
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