Family Caregiving Awards

The proposed program Ma:cig nu:kuda (Knowledge – Care Givers) replicates the Caregiver Connection – Telephone Support Groups and follows the format of the replicated program with minor changes for the local setting. It will be delivered to care giving tribal members of the Tohono O’odham Nation in their homes. It will be delivered via the program sponsor’s current umbrella palliative care organization entitled Desert Pathways (under an agreement with the Tohono O’odham Foundation).
Desert Pathways has operated for more than three years. It works with families to address the spiritual, physical, medical and social care needs of family members facing serious illness and potentially terminal conditions. Desert Pathways provides limited in person care giver training to family (and friend) caregivers.
The new caregiver support program will exponentially expand the needed training and education of members of the community who are family care givers. The program will utilize the telephone model due to the exceptional distances amongst the community members and lack of in home technology (other than telephone) and transportation.
Modernization of the culture means that the extended family isn’t available to function as it once did; we are providing a replacement for people who don’t have extended family support via the telephone support group model. The support groups and education and training will be offered in English and the traditional tribal language (O’odham) which is in widespread use amongst community members.
Additionally, the new program will pilot test the use of loaner Ipads (or similar devices). The approach will be to download related training and education resources and ‘loan’ the device to the care giver for their use. We will translate into O’odham content that will be loaded on to the devices. The new program will utilize the organization’s website which is www.totlc.org . More information can be obtained by contacting Lee Olitzky at lee@wit2tucson.com.

The Adult Day Adventures (ADventures) program combines elements from two caregiving programs listed in the replication guide: the Asian Community Center Drop-In Respite Cooperative and the Community Action Program of East Central Oregon’s Native Caring Conference. The Asian Community Center’s drop-in respite model has been shown to be effective in engaging caregivers who would otherwise resist seeking assistance. As the Asian Community Center demonstrates, caregivers value the opportunity to spend time with their loved one and be involved with program activities. Our program will offer joint respite to caregivers and their loved one. Respite is a core service to many of the innovative programs listed in the Replication Guide and it is one of the services most frequently requested by caregivers. Providing joint respite lessens the practical responsibilities of the caregiver while allowing them to spend time with their loved one. Joint respite activities will include trips to local museums that offer therapeutic programming designed for individuals with dementia. The joint respite will act as a point of entry to a wider array of supportive services. In conjunction with the field trips, the program will provide a series of psycho educational and skill building workshops featuring special speakers addressing a variety of issues faced by caregivers who are caring for an individual with dementia, including self care strategies and practical care skills. These topics will mirror topics addressed by the Native Caring Conference. These workshops help caregivers build skills that will help them manage their role. Additional information can be obtained by contacting Monica Guzman at mguzman@scsny.org.

Alzheimer’s Association of Oklahoma and Arkansas proposes to implement The Caregiver Latino Conference, to inform and empower the Latino community with an early detection of Alzheimer’s disease (or related dementia) and their families in a fun, yet relaxing educational manner. This partnered learning will enhance the relationship between the community, the caregiver, the family and the individual diagnosed as well as build and strengthen relationships among community agencies. A health fair atmosphere will be incorporated which includes free health screenings as well as community agencies that cater to the community. It will be a culturally infused event full of purposeful information delivered in a way they would appreciate and be comfortable with. Greater acceptance will occur if Latino community & religious leaders are involved in the planning, delivery, and evaluation of these educational efforts. Translators will be sprinkled throughout the event to aid with any language barriers. Because religion and family are such integral components of the Latino culture, location is also vital so having it in a Catholic Church will be the most appropriate site.
Covered topics include: general facts and figures about Alzheimer’s and related dementia, healthy brain strategies,, what it’s like to be a caregiver, how to communicate with healthcare professionals, the importance of getting an early diagnosis, available resources/referral information, self-care for the caregiver and free health screenings.
A various number of vendors will be participating. They will offer a wealth of information from their respected areas of expertise as well as door prizes to keep the interest level high. Appropriate cultural entertainment for the adults and children will be chosen. Respite volunteers will be on hand in a designated area to help while the caregivers learn valuable information. There will also be a children’s area for them to enjoy playing and interacting during the event. The menu will consist of Latino food. More information can be obtained by contacting Gail Bieber at gbieber@alz.org.

The Joe Martin ALS Foundation helps PALS (people with ALS) and their caregivers live actively with ALS (Lou Gehrig’s disease). Most of the primary caregivers we meet are family members who are desperate for information on how to provide better home care. They will be replicating ThisCaringHome.org.
Home Life for PALS is a web-based program designed to help families improve their quality of life by offering solutions to overcome the challenges presented by ALS. This web site will provide answers to questions about medical equipment, home modifications, plans for how to face new disabilities encountered as the disease progresses, educate caregivers about research proven methods of caring for people with ALS, and help families keep their loved one at home.
Clear images, instructive videos, concise text, and a user friendly website will make this valuable information available to all who have Internet access including iPhone, android, iPad, and tablet users. Images will have a “mouse-over” capability to provide users the ability to click on objects in the image. This will enable caregivers to learn about equipment and tools that will make it easier and safer for both the caregiver and patient. This project is unique in that there are no similar resources available for ALS patients or their caregivers. The program will be coordinated with the Carolinas Neuromuscular/ALS Center, the ALSA “Catfish Hunter” chapter, the North Carolina MDA chapter, and Apparo (IT professionals). Thousands will be able to access and benefit from this much needed web site and resource. Addit1onal information can be obtained from Neil Cottrell at neilcottrell@joemartinalsfoundation.org.

Connecticut-based VNA Community Healthcare (VNACHC) proposes to replicate Eldercare Partners’ coaching model and apply it to a specialized population, namely caregivers of cardiac patients. Innovations to be replicated with a minimum of 50 caregivers include adopting a more structured coaching format, screening caregivers for depression, assessing caregivers, setting specific initial goals, using coaching strategies and other techniques to guide the way, and offering ongoing support and direction as new needs arise. Caregivers will drive the process. Use of pre-post assessments and screenings will demonstrate lowered burden and reduced depression. Formalized evaluation will demonstrate program effectiveness and improve sustainability for VNACHC to serve the caregivers of tomorrow. VNACHC’s current program mirrors an early version of Eldercare Partners. VNACHC is in a strong position to evolve by replicating best practices currently in use by Eldercare Partners, whose program also evolved over time. Their website is www.ConnecticutHomecare.org. More information can be obtained by contacting Jo Ann Begley at jbegley@vna-commh.org.

The increasing levels of stress and burden experienced by home/family caregivers of persons with Alzheimer’s and other dementia diseases have created a public mental health crisis resulting in high levels of depression and a reduction in coping ability among home/family caregivers. For example, our local Alzheimer’s Association chapter has identified the need for mental health services for their caregiver support group attendees. Support groups have derailed due to severe distress of participants and subsequent need for crisis intervention.
The goal of the Dementia Caregiver Program (DCP) is to address mental health needs and reduce caregiver burden and stress. The DCP Program replicates the Eldercare Partners Program in St. Paul Minnesota, by combining professional services with caregiver support and education. The idea of “caregiver directed services” is also replicated by providing opportunity during counseling sessions to personalize concepts learned during group sessions, thus developing a more individualized approach to their care recipient. Additionally, caregivers may address salient personal issues which may or may not be related to their caregiver role. For example, during our recent pilot a caregiver discussed her marital problems at length.
The DCP program implements a multi-component intervention combining individual assessment and counseling, group psycho-education, and instruction in technological approaches. Specifically, six group psycho-educational sessions are provided in conjunction with individual or family counseling. Group activities will be offered for appropriate care recipients during the caregiver educational sessions, thus providing caregiver respite. Participants are given the Alzheimer’s Workbook during group sessions, which offers a holistic framework and checklists of suggested interventions for specific behaviors. At completion of sessions, we hope to offer caregivers an interactive website to track interventions.
We hope to demonstrate significant evidence of impact by improving caregiver scores on several researched measures, such as Zarit Caregiver Burden scale as well as anxiety and depression measures. Additional information can be obtained by contacting Cindy Anderson at peopleworks@q.com.

The Salvation Army Metropolitan Division requested seed grant funding from MetLife Foundation and National Alliance for Caregiving to support its Family and Community Services (FCS) program, Two Are Better Than One and replicate the Interfaith CarePartners Care Team Program.
FCS has a solid history of providing services to a diverse group of caregivers in Chicago and the surrounding suburbs and believes healthy individuals and families are essential for healthy and vibrant communities. Two Are Better Than One is a dynamic program that seeks to equip dedicated volunteers from local congregations to provide respite, in-home support, and companionship to caregivers in their communities. We plan to target two different groups of caregivers through this program: informal/formal caregivers caring for a senior (age 60 or older); older relatives (age 55 or older) caring for relative children. In order to most effectively meet the needs of caregivers, FCS will collaborate closely with local congregations and community groups; The Salvation Army Metropolitan Divisional Headquarters; other Salvation Army Centers; the City of Chicago Family and Support Services – Senior Services Division; and Age Options, the Area Agency on Aging for suburban Cook County. By replicating evidence-informed components of the Care Team Program from the Interfaith Care Partners, we anticipate caregivers will report that they feel less isolated after participating in the program; caregivers will report that they are engaged in enriching activities in their community; volunteers will self-report an increase in their understanding and capacity to provide services to caregivers; caregivers will report an increase in their skills and knowledge of caregiving practices; and volunteers/congregations/groups will increase their commitment to respond to the needs of caregivers in the community. More information can be obtained by contacting Leonard Johnson at leonard_johnson@usc.salvationarmy.org .

Rainbow Hospice and Palliative Care proposes to incorporate Powerful Tools for Caregivers (PTC) into its Comfort Care for Advanced Dementia (CCAD) Project. Supported by the Retirement Research Foundation and other local foundations, CCAD is an innovative training and capacity-building project to improve outcomes related to pain, comfort, and dignity for people with advanced dementia who receive care at home or at local nursing homes. Rainbow Hospice proposes to build on collaborative relationships it has established with The Abington of Glenview and Central Baptist Village in Norridge, and the municipalities of Des Plaines and Park Ridge, Illinois to provide PTC to caregivers. Through funding from the National Alliance for Caregivers, Project Director and PTC Master Trainer Daniel Kuhn will train a minimum of five PTC Class Leaders who will provide PTC to more than 40 caregivers; provide ongoing support for the caregivers through social media; and evaluate the results. The largest investment is staff time. While Rainbow Hospice and Palliative Care is reimbursed by Medicare for direct hospice services and some bereavement, community and system-level programs such as CCAD are funded through the generous support of private donors and foundations. The proposed integration of PTC into the dementia programming at Rainbow Hospice builds on the strengths of its bereavement, volunteer, and palliative care programs, and will enhance the quality of life for the caregivers. We will measure participant satisfaction and learning with a brief survey after each session, and use a pre- post-test survey to measure: self efficacy; self care (as measured by time spent exercising and relaxing); depression; vitality; and level of distress due to changes in the recipient of care. We will also use this year of “seed” funding to evaluate the staff time needed to sustain the PTC program, and to conduct a cost/benefit analysis of the program. Additional information can be obtained by contacting Shelly Ebbert at sebbert@rainbowhospice.org.

National Church Residences will be replicating the DARTS Workplace Eldercare Seminars. Our Working Caregiver/Employer Outreach Initiative will engage, inform, educate and empower working caregivers through a partnership with their employers and the local social service community. It is our goal to educate employers to the challenges working caregivers face and to demonstrate that an employer’s attentiveness to the issues of their caregiving employees is much more than an exhibition of altruism. It is not only the working caregiver whose finances are impacted by the responsibilities of caregiving. Employers who understand the incentives of providing basic resource and referral services to their caregiving employees should be expected to benefit from a more productive workforce and a more robust financial bottom line. Additional information can be obtained by contacting Susan Nocella at snocella@nationalchurchresidences.org.

Jewish Association Serving the Aging (JASA) requested a seed grant for JASA Connections, a care giving program that will be piloted in several south and mid-Brooklyn communities. JASA Connections will replicate Connections: Home-Based Activity Program for Persons with Dementia, an evidence-informed, caregiver support program developed by the Alzheimer’s Association, Central and Western VA and the University of Virginia. The Connections program is justified by research; appropriate activities are adapted and structured using Montessori Based Programming for Persons with Dementia, therapeutic recreation-based methods and cognitive intervention principles. The Program consists of an Activities Guide that promotes activity engagement, an eight (8) week series of home visits by staff and college students, and emphasizes the concept of ‘partnered volunteering’ in which the volunteer and/or student work with the caregiver as a team to engage the care recipient. The Connections Program is strength-based and individualized to the individual suffering from dementia. Activity programming is based on the individual’s past interests, current cognitive capacity and/or educational level.
JASA’s replication of Connections, JASA Connections will augment and enhance the range of services currently offered through JASA’s publicly funded Brooklyn Caregiver Respite Program, as well as maximize the utilization of an established core of volunteers who are affiliated with the program and work as experienced caregiver “mentors.” These volunteer mentors, as well as students from local colleges, will be trained, supervised and assigned to caregivers and their loved ones to implement the in-home enhancement project. Following the piloting of this initiative, we intend to implement JASA Connections in other communities in our large service area, which includes four boroughs of New York City (Manhattan, Bronx, Queens, and Brooklyn), and Long Island. More information can be obtained by contacting Amy Chalfy at achalfy@JASA.org .

Amherst H. Wilder Foundation replicated Powerful Tools for Caregivers, a six-week education program that helps family caregivers of older adults to develop and practice self-care “tools” to thrive as individuals while managing caregiving responsibilities, specifically for the Hmong American community in St. Paul.

Friends in Action replicated DARTS Workplace Eldercare Seminars, a program to enhance caregiver resourcefulness, competence and confidence as well as assist employers in providing work-life balance for caregivers.

The Arc of King County replicated Parent Advocacy Group, a program of regularly scheduled meetings where families of adults with developmental disabilities can learn about important issues, meet other families in similar circumstances, and receive training in advocacy for themselves and their loved one.

ALS Association Florida Chapter replicated Caregiver Connection Telephone Support Group, a program to meet the needs of family members caring for people with ALS. Support group facilitators will adapt an already established curriculum to add disease-specific information and coping skills needed by ALS caregivers.

Oakland County Interfaith Volunteer Caregivers replicated Interfaith CarePartners, a program that will mobilize volunteers and resources in local congregations and the community, offering an array of direct services such as transportation, chores, housekeeping, repairs and friendly visits, as well as resources, education and support for family caregivers, including in-home respite.

in Charlottesville, VA for its Connections: An Innovative Home Based Activity Program that provides caregivers with strategies needed to interact positively with an individual diagnosed with dementia and connect families to a full range of community services leading to increased caregiver confidence and support.

Learn more about Alzheimer’s Association Central and Western Virginia Chapter.

for Translation of ESP/Skills2Care, a collaborative project that involves an evidence-based program for caregivers of people with dementia that provides occupational therapy in a sustainable reimbursement environment.

Learn more about Fox GERI: Geriatric Education & Research Institute.

for its Care Team Program, a team of congregation-based volunteers who are trained and supervised to provide respite to caregivers and to forge relationships with cognitively or physically impaired persons in the family home or through activity programs at partner congregations.

Learn more about Interfaith Care Partners.

for its Parent Advocacy Group, a support group for single, older parents who provide friendship, support, hope and solutions to each other as they advocate for sons and daughters with intellectual challenges.

Learn more about Multicultural Community Services.

for its NYU Caregiver Intervention program, an evidence-based intervention to improve the well-being of caregivers of those with Alzheimer’s disease by mobilizing the support of naturally existing family networks, improving caregiving skills and providing the opportunity for ongoing counseling and support.

Learn more about Langone Medical Center.

for Ride Partners and Repairs with Care, which empowers older adults to remain independent in their own homes through a time-exchange network. This network provides assistance to older adults and caregivers for neighborly tasks, such as transportation and household repairs.

Learn more about Partners in Care.

for Telephone Support Groups, which enhance the effectiveness, accessibility and reach of a mainstay of caregiver support — the support group — by delivering an evidence-based program to family caregivers who are connected by telephone conference call.

Learn more about Senior Services of Albany.

for its Caring for the Caregiver program, which, unlike traditional caregiver programs, helps adult caregivers with cognitive disabilities who provide assistance to parents over the age of 60. This program was also honored with the Cultural Diversity Recognition Award.

Learn more about the Kennedy Center.

for ThisCaringHome.org, a new, interactive, multi-media Web site that offers caregivers innovative ways to learn research-based strategies that reduce caregiver stress and enhance the safety and well-being of loved ones with Alzheimer’s disease or other types of dementia. This award winner was also honored with the Alzheimer’s Recognition Award.

Learn more about Weill Cornell Medical College.

for the SAGE Caregiver Program, the only program in the country specifically designed to meet the complete care and support needs of LGBT caregivers, who are often marginalized from mainstream service and support.

Learn more about SAGE.

for the Caring for Caregiver programs that link low-income, uninsured caregivers with licensed mental health professionals to persons living with cancer, Alzheimer’s, and multiple sclerosis among others.

Learn more about the Pro-Bono Counseling Project.

for its Caregivers Community Network, which recruits and trains community volunteers and students to provide respite and companion care services to families caring for frail elderly.

Learn more about the Caregivers Community Network.

for its Dementia Skills Training for the Home Caregiver, an innovative educational program available in English and Spanish, designed to be sensitive to the needs of the caregiver and patient.

Learn more about Dementia Skills Training for the Home Caregiver.

for its Workplace Eldercare Seminars, which support caregivers in the workplace with education and resources bringing confidence to the caregiver, payback to the employer, and a needed spotlight on aging and caregiving.

Learn more about DARTS.

for Native Caring, a Native American Caregiver training conference that provides workshops and activities to integrally tied to spiritual, physical, and mental needs.

Learn more about the Community Action Program East Central Oregon.

collaborated to create Future Care Planning Services, which provides comprehensive life care planning services to assure peace of mind and a legacy of love for caregivers while providing autonomy for people with disabilities.

Learn more about Lifespan, Al Sigl Center, and , ARC of Monroe County, and Future Care Planning Services.

for an integrated programs caregivers with a fuller understanding and greater capability to managed their loved one’s dementia.

Learn more about MemoryCare.

for Caring for the Caregiver, a support program where the caregiver identified as the adult child of a family member over the age of 60 with cognitive disabilities.

Learn more about the Kennedy Center.

for AFA Teens, an Alzheimer’s disease online resource offering direct interaction with teens living with families affected by Alzheimer’s disease.

Learn more about AFA Teens.

for the Drop-In Respite and Caregiver Cooperative, in which caregiver-volunteers “earn and buy” respite time with other Co-op members, sharing their caregiving methods and engaging in self-learning, while building a community resource.

Learn more about the Asian Community Center.

for its Time Out Respite Program, which mobilizes college students to provide in-home respite services to caregiving families throughout the Philadelphia area.

Learn more about Temple University’s Center for Intergenerational Learning.

for Memory Mobile, the only mobile Alzheimer’s outreach, support, and caregiver education service delivery vehicle in the country targeting isolated, rural families dealing with, or at risk for Alzheimer’s disease.

Learn more about the Alzheimer’s Association-Gulf Coast Chapter.

for Caregiver’s Guide for Bone Marrow/Stem Cell Transplant, which was developed to educate loved ones about their vital role through the experiences and perspectives of fellow caregivers.

Learn more about the National Bone Marrow Transplant Link.

for Online Caregiver Support Groups, which provides virtual 24/7 access to support and information for people across the country caring for a loved one with cancer.

Learn more about CancerCare’s Online Caregiver Support Groups.

for Old Order Amish Caregiver Program, which provides support, counseling and training—with intense emphasis on cultural sensitivity to the Amish beliefs and ways—while overcoming obstacles that have kept the Amish from seeking help outside their faith.

Southern Caregiver Resource Center
San Diego, California

This innovative program brings volunteer artists together with caregivers to create custom-made journals-each a piece of art-with unique prompts to help caregivers find their voice by providing a safe place to write down their passions, hopes, new ideas, and worries.

Southern Caregiver Resource Center (SCRC) took an uplifting, new approach to reducing risk factors of caregiving, such as emotional and physical isolation, loss of self-esteem, fear, guilt, and anger. Three years ago, SCRC initiated a journaling program called A Space of Beauty, which has made numerous positive changes in the daily lives of caregivers participating in the program. This is no ordinary journaling program. Each unique journal is a piece of art created by an artist and specific to each caregiver.

San Diego artists generously volunteer their time and talent to create individual journals to help support current caregivers on their complex journey. These journals are filled with journaling prompts to encourage writing from the heart. The program includes a class called Steer With Your Pencil to help caregivers get started with putting their deepest thoughts down on paper.

The journals reflect caregivers’ passions, worries, hopes and dreams. Research shows writing is restorative and enhances a caregiver’s physical and mental heath, helps caregivers find their voice, clarifies, their thoughts, provides an opportunity to express gratitude, and helps caregivers be open to new resources in their communities. The journaling prompts that have made the most significant difference are those that help caregivers rediscover their past passions. Writing allows caregivers to step out of their current situation, see it more objectively, and find ways to reconnect with their passions.

Alzheimer’s Family Services of Greater Beaufort
Beaufort, South Carolina

This program for caregivers of persons with dementia excels in rising to the challenge of providing comprehensive support for a rapidly growing, racially diverse, rural retirement community.

The Home Educator began seven years ago to provide support, education, counseling, and consultation for caregivers at home and in the community. The program was designed to create easy access to assistance and a full range of services for older persons and their caregivers. The goal of the program is to make the caregiver’s life easier and relieve some of the stress associated with the caregiving responsibility. Many caregivers served by the program live on the remote islands off the coast of Beaufort County. Because caregiving crosses all boundaries, this program responds to the mix of cultures, socio-economic backgrounds, and races within Beaufort County.

Home Educator staff meets with the caregiver in the privacy of their home to assess the need for services and the level of Alzheimer’s disease of the care recipient. Information about Alzheimer’s disease is reviewed, an application for services completed, and a medical report requested for the older adult and caregiver to register for one or more of the agency’s many support programs. Home Educator staff stays in close contact with the caregiver through weekly phone calls and follow-up meetings as needed. This contact is critical because of the emotional issues the caregiver confronts every day. Evening hours are available each day for caregivers to telephone the Home Educator staff for consultation or conversation. A sense of comfort, security, and responsiveness is extended to caregivers who are often lonely and isolated.

Legacy Caregiver Services
Portland, Oregon

Powerful Tools for Caregivers is a highly effective educational program providing family caregivers with the skills and confidence to better care for themselves while caring for someone with a chronic illness.

Powerful Tools for Caregivers (PTC) consists of a six-week 2-1/2 hour program for up to 15 caregivers co-led by trained facilitators who employ a standardized curriculum. This program was developed over a three-year period of pilot testing, refinement, and evaluative research to assess the program’s effectiveness. Caregivers learn how to utilize community resources; better manage their stress; communicate effectively with friends, family and healthcare providers; cope with difficult emotions; and take steps to better care for themselves.

All PTC training materials including the class leaders’ script, flipcharts, presentations, video, relaxation exercises, and a supplemental guide written especially for the course are available in English and Spanish. A 90-minute six-week series and an on-line version of the program are also available. The six-week PTC class has been shown to have a significant positive impact on caregiver health for a diverse group of caregivers including spousal/partner caregivers, adult children and other family caregivers in a variety of settings, including those living in rural and ethnic minority communities. Data from class participant evaluations indicates: significant improvement in self-care behaviors, including exercise and use of relaxation techniques; increased ability to manage difficult emotions, including reduced anger, guilt, and depression; increased self-efficacy in coping with caregiving demands; and increased use of community services.

Powerful Tools for Caregivers is a national program sustained by extensive collaborations with community-based organizations. The program has reached more than 15,000 family caregivers in over 20 states.

The House of Justice – Bet Tzedek Legal Services
Los Angeles, California

One of the nation’s premier caregiver legal aid programs, JustCare offers pioneering educational trainings and clinics to low-income disabled adults, caregivers, and professionals throughout Los Angeles County promoting knowledge about advance planning and protecting seniors’ full and equal access to rights and justice.

JustCare: Caregiver Education Project offers highly innovative and effective strategies to address the major problems confronting low-income disabled and elderly Los Angelenos and their caregivers. JustCare has pioneered groundbreaking community models in legal literacy, and today is the leader in helping over 4,000 low-income disabled adults and their caregivers. JustCare’s pioneering approach of direct legal representation combined with outreach, education and training directly empowers vulnerable people with the knowledge and tools needed to protect their rights, gain full and equal access to justice, address basic legal issues on their own, and secure vital necessities like safe and affordable housing, fair wages, health care, and public benefits.

The JustCare program includes free multi-lingual workshops; innovative trainings for professionals and agencies who provide services to caregivers; publications such as The Caregiver Companion, a manual that addresses the most frequently encountered problems and issues regarding complex laws and regulations governing benefits available to caregivers and their elderly and disabled family members; one-stop legal clinics; and extensive outreach to isolated areas of Los Angeles City and County, ensuring that caregivers and their families have access to a wide array of educational materials, legal counseling, and other services in areas related to caregiver support. JustCare’s materials and publications reach an estimated 50,000-100,000 caregivers who would otherwise be forced to navigate complex healthcare, housing, and benefits information on their own.

Montana State University Extension
Bozeman, Montana

Developed by an interdisciplinary team in response to a community request, this highly successful educational program provides an effective approach in assisting rural caregivers cope with the multi-faceted aspects of Alzheimer’s disease.

Since 2002, the Montana State University Extension Service has collaborated with the Alzheimer’s Association Montana Chapter to increase the awareness and support for family caregivers through assistance with conferences and participation on the board of directors. Although conferences on the topic of Alzheimer’s disease are held annually, the location and time away from caregiving precluded most rural caregivers from attending. This need led to a request to hold a conference in a rural area of the state.

Due to the rural nature of the state, Alzheimer’s patients and their families are often isolated with few resources and supports creating greater challenges for the caregiver. Because of this and based on feedback from community professionals/practitioners and constituents, it was decided that each topic specialist spend a week in an area of the state presenting his or her seminar in several communities. This allowed more caregivers to participate in the series without having to leave their communities. The result was the development of a five-week educational series-The Alzheimer’s Caregiving Series- using diverse effective adult educational strategies in two and a half hour seminars focusing on: an introduction to Alzheimer’s disease; family interactions and caregiver stress; nutrition; financial planning and legal issues; and Alzheimer’s proofing the home. Program evaluations indicate that caregiver participants have significantly increased their self-confidence in caregiving and feel much better prepared for their role as a caregiver.

MinnesotaHelp Network
Rochester, Minnesota

Long-term Care Choices was developed to assist older Minnesotans and their caregivers to age well, live well, plan well and care well.

Developed through a collaborative effort among numerous aging and disability-related agencies and organizations, Long-term Care Choices is a widely used web-based decision tool for seniors, families, caregivers, and professionals. This tool can be used to identify needs, locate community services, and create a plan of care. People using Long-term Care Choices can learn about the various housing and care options available in Minnesota and receive a personal plan based on their needs. This program empowers caregivers to have more control in developing the care recipient’s care plan on a continuing basis. Anyone can use the tool at any time by logging onto www.longtermcarechoices.minnesotahelp.info.

Long-Term Care Choices is comprised of eight assessments; a section outlining housing options; a page to assist people relocate from a nursing home; and a guide called Next Steps for families who want to begin talking about long-term care needs. A completed assessment will generate a set of local service providers and add the service to a plan that is forming behind the scenes. When the user has completed the questions and selected services to meet their needs, the survey can be printed or saved. Information is stored on a secure server that can be accessed only with a valid login and password. Multiple plans can be developed for the same person to track conditions over time or a single plan can be modified as needs change.

Senior Services of Albany
Albany, New York

Caregiver Telephone Support Groups bring the support of peers and a professional social worker right to the caregiver, in the comfort and convenience of his or her own home.

Using teleconferencing technology to facilitate a support group eliminates barriers and allows group participation for many individuals otherwise unable to access such support. Caring for a loved one is often an isolating experience. Telephone Groups can reach caregivers isolated by distance, commitments, disability, transportation or social withdrawal. As operator of the teleconference, the group leader calls each group member and monitors the call via a webpage. Participants never navigate an automated system, have a charge on their phone bill, nor need any special equipment.

This technology is very effective, while at the same time inexpensive and user-friendly. Most agencies with caregiver programs sponsor support groups, but may struggle with issues of attendance, accessibility or reach. Such agencies can modify their existing program to include a telephone-based group using simple technology, which requires no up-front financial investment, and can train leaders with available manuals. The affordable, no-special-technical-abilities-needed and readily replicable qualities of this program set it apart from other support groups.

The results from a program evaluation indicated that adult children had increases in positive social interaction and emotional/informational support, effectiveness, knowledge of services, how to access services, and use of services. Adult child caregivers also had decreases in stress, strain and depression rates.

Asian Community Center
Sacramento, California

Drawing from their experiences as mothers swapping babysitting with other mothers, a group of caregivers formed the Caregiver Cooperative Model (co-Op) that operates as a caregiver-volunteer respite program in which caregivers “earn and buy” respite time with other Co-op members.

The mission of the Asian Community Center (ACC) is to promote the general welfare and enhance quality of life by identifying, developing and providing culturally sensitive health and social services for older adults and their caregivers. In 2003, the caregivers of the ACC Drop-In Respite developed the Caregiver Cooperative Model (Co-op) as a means to expand respite services. Caregivers participating in the Drop-In Respite program formed the Co-op, which operates as a caregiver-volunteer respite program that “earns and buys respite time with the Co-op.

The ACC challenged the traditional notion that respite is an opportunity for renewal where caregivers must break “away” from the care receiver. As Co-op members, family caregivers volunteer in the program once a month, equivalent to one respite day, in exchange for a full month of participation for their care receiver. Experiencing first-hand what the program is all about and by working collaboratively, Co-op members have control over how the program is run. They actively participate in, develop ways, and mutually experience creative ideas on ways to physically and mentally stimulate their loved ones at the program and at home.

Open to everyone, the Co-op delivers the respite program to Asians of Japanese, Chinese, and Filipino decent. Special characteristics of this service population lies in the disadvantages they face due to language barriers, cognitive and/or physical disabilities, and their unlikely willingness to access social and health services geared towards other population.

West St. Paul, MN
Eldercare Partners Caregiver Services

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.

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.

Big Stone Gap, VA
Family Support Services

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.

North Palm Beach, FL
Caregiver Manual
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.

Madison, WI
Strengthening the Delivery of Family Caregiver Education Through Partnerships
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.

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.

Los Angeles, CA
Asian American Dementia Care Network

he 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.

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.

San Francisco, CA
Supporting Caregivers Through Technology

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.