Award Recipients

“For persons living with dementia who are living in the community, regularly scheduled opportunities for arts-based activities are few and far between.” Jewish Family Services of Salt Lake has woven together a variety of programs that collectively provide a dementia-welcoming arts and support environment for home-based caregivers and for those directly receiving their care. The sum is even greater than the individual programs as about 115 individuals actively participate in multiple free or low-cost programs. With many opportunities each month for families to connect with each other, the friendships and support they find often extend outside of scheduled activities, with many clients becoming life-long friends.

Couples and families have the option to match their interests and pursue new opportunities in a fully non-judgmental digital and in-person space. Whether it’s the Gleeful Choir, Music & Memory program, Dementia Friendly Activity social group, or Exploring Creativity group, participants can choose a few or all as it works for them.  All of the activities are held in concert with three caregiver support groups, including a Pre-Loss Grief Group, as well as individualized counseling  with an Older Adult social worker when needed. These create safe spaces for asking questions and sharing experiences  centered on dementia caregiving.

Serving individuals and families from all denominations, Jewish Family Services Salt Lake’s Arts and Aging Programs aims to improve the quality of life for many families whose lives were uprooted due to an Alzheimer’s or related dementia diagnosis.

Young people and their families affected by younger-onset dementia (diagnosis before age 65) are empowered to shift an often isolating and stigmatizing journey into one framed by community building, reducing isolation and helping families to be seen, understood and embraced. An estimated 2000+ individuals are reached by this program each year. From a 23yr/old, “often people are unaware about our parent’s diagnosis and may make unnecessary comments – causing uncomfortable feelings and placing us in an unfair situation. At Lorenzo’s House, we grapple together and are designing our own tools and mindsets to respond, restore our own sense of family dignity, and shine a light on stigma [to] dismantle it.”

At its core, Lorenzo’s House created the EmpowermentPLUS Model, actively engaging and building capacity in young people thrust into a caregiving role early in life. Through a well-organized structure of youth Clubs (age-appropriate virtual hangouts for those age 4 to 18+), annual Youth Summit and Clubs for carepartners, individuals are educated about dementia and learn practical tools to employ for their personal context and adapt to the diagnosis. They gain strategies and strength to manage dementia stigma at home and in their community and undertake this skillset to train others using a train-the-trainer model. Last year they reached youth from 47 states and more than 16 countries. Through regular speaking engagements, social media and publications they are working to dismantle dementia stigma, locally, nationally and globally.

The California Elder Justice Coalition (CEJC) works to improve the quality of life for older Californians including those living with dementia. More than 1.6 million individuals provide unpaid care for a person living with Alzheimer’s Disease in the state. A subset of these caregiving situations will result in an environment of elder abuse or neglect.

Since 2010 CEJC has led efforts to include caregiving as a core component of elder justice policy and practice. Early efforts demonstrated that successful caregiving strategies and support can prevent and mitigate the impact of elder abuse and neglect. Failure to address contributing risk factors, (e.g., a lack of caregiver or care receiver financial and functional support, caregiver stress, a lack of recognition of cultural norms, a history of problematic family relationships, and more), can lead to serious negative consequences for both caregiver and care receiver.

The Coalition has pioneered approaches to preserving the autonomy of adults with dementia while reducing stresses and uncertainties that family caregivers face in balancing their own needs with those for whom they care. This has included a concentrated focus on extending free or affordable legal services for estate planning, promoting advanced directives, access to planning and conflict resolution within families, promoting alternatives to conservatorship that protect older adults with dementia that are safe while preserving their rights and freedoms to as great an extent as possible.

CEJC is a founding member of the National Network of State Elder Justice Coalitions (now with 20 coalition members and growing) and remains actively involved in promoting the development of elder justice coalitions across the country.

Seeking to offer an empowering program that destigmatizes living with dementia, Dementia Friendly Saline+ partnered with their local movie cinema, Emagine Theaters, to offer monthly screenings of classic movies in a safe and welcoming environment. In their words, “America’s first Dementia friendly movie program offers…an extraordinary yet “ordinary” program re-enabling caregivers to … once again enjoy going to the movies, but now in a beautiful, moving way, in the relaxed company of their loved one [living with dementia.]” An estimated 1,000 people are served by the program annually.

A sampling of features that make this program accessible, welcoming meaningful and innovative include: curbside reverse-valets who wait/sits with the a loved one while the caregiver parks the car – note: a similar service is offered inside the theater when the caregiver needs to go to the bathroom – , an easy to access welcome table selling affordable tickets, offering free name badges, programs and an array of goodies for guests to assemble their own goodie bags. Opening the theater doors early allows for pre-movie social time to meet and chat with others, enjoy a buffet of finger food including free popcorn and soda,  and pick up information and educational material. When the movie is about to begin, an Emcee invites people to be seated and engages attendees in activities, while volunteers help guide guests to their reserved seats,  offer free roll-up sandwiches or other bites to guests during the movie, and help guide people to and from the correct restroom and the Quiet Room off of the lobby.  During the movie theatre lights are on with the sound not overwhelming, and no one is “shushed”, instead theater goers are welcome to sing along, clap, stand up and dance and comment out loud! A post-movie door prize drawing is held before the emcee closes the afternoon event

A caregiving wife said, “You changed our lives.  We have so much to look forward to now! The movie was so much fun! He loved it! The volunteers were so nice, and so helpful! We felt totally safe and comfortable.”

Dementia Friendly Saline+ helps people with dementia and their caregivers to live in the community with less difficulty and more dignity.  Led by current caregivers, and persons living with dementia, this dedicated group successfully put suburban Saline, MI with an estimated population of  9,000 of which 25% are 65+, as the only designated Dementia Friendly City in Michigan with an officially declared and trained dementia friendly municipal workforce.  Due to the success of the Dementia Friendly Saline+ – A Friendly Day at the Movies program, the program has already expanded in Michigan and Wisconsin, and  the team is working with local organizations to replicate the program in Ohio and Utah.

Connected Horse’s goal is to use the therapeutic value of equine assisted learning and sensory engagement to support the reduction of isolation and stress, and the stigma associated with Alzheimer’s disease and related dementias for people living with dementia, their family and informal caregivers. Through innovative and research-informed equine-assisted therapy programs, Connected Horse has inspired more than 800+ participants in interpersonal and animal connection, engagement, and emotional healing by delivering in-person workshops and the interactive Barn At-Home activities. The organization also offers training certification to become a Connected Horse facilitator extending the reach of the program beyond California to communities across the US.

In the Connected Horse in-person workshops, trained facilitators guide interactions between these beautiful and gentle horses, family and friend care partners and the person living with dementia as they experience exercises that focus on mindfulness, self-awareness, nonverbal communication, and joy. The Barn At-Home program extends the experience by providing specially curated activity kits containing sensory tools (tactile, aromatherapy, conversation prompts, music, and photo exploration in a virtual barn environment) via home visits, adult day center sessions, senior living communities and interactive Zoom workshops.

A caregiving daughter said, “We learned to relax and focus on what is in the moment. I felt more tuned into myself in a way that I hadn’t been for a while, and I also felt more connected with my mother. I could see that she was happier after the [Connected Horse] workshop.”

Incorporated as a not-for-profit in 2017, Connected Horse grew out of The Equine Guided Support Pilot Study conducted in partnership with UC Davis and Stanford University where findings showed innovative opportunities for stress reduction and social engagement for care partners (CPs) and persons living with dementia (PLWD). A natural outgrowth of the program is the organic growth of an intergenerational volunteer program. It has provided the opportunity for younger volunteers to learn about the aging process and connect with older adults, while the adults enjoy the youthful positive energy and non-judgmental friendship offered by the volunteers.

Created by caregivers, the Alzheimer’s Family Support Center (AFSC) provides an array of cost-free personalized services to families, individuals, and caregivers on Cape Cod currently living with Alzheimer’s and other dementia-related diseases. The goal of the AFSC is to help families navigate the complexities and challenges they face across the span of these diseases, within a research-based, service driven social model.

One of the AFSC’s programs is the Alzheimer’s Family Community Center at the Cape Cod Mall. This unique site offers a multi-service resource within a local shopping mall setting, potentially the first one in the nation. The public shopping mall location, with its brightly-lit sign and great visibility, helps to reduce stigma about seeking help while increasing dementia care accessibility to people from across racial, ethnic, sexual preference and socio-economic backgrounds, including significant populations of Brazilian, Central American, Native American, LGBTQIA+ and rural community members.

Opening their doors for service in July 2014, The Alzheimer’s Family Support Center provides a comprehensive array of personalized services to individuals, caregivers, families, and communities on Cape Cod currently living with Alzheimer’s and other dementia-related diseases. Services include psychoeducational caregiver support groups, conversation groups for people with ADRD, dementia-specific bereavement groups, education, cognitive health screenings, insurance support, phone support, counseling, care consultation and planning, respite services, and social and cultural activities. All services are provided free of charge, regardless of the ability to pay. The AFSC partners with local health, service, and cultural organizations in an ongoing effort to extend the service reach to all throughout the community.

Launched in 2015, the Library Memory Project harnesses the power of the Bridges Library System’s 24 public libraries to offer a rotating series of memory cafés.  Six themes-based memory cafés are convened each month at 21 libraries across Jefferson and Waukesha counties in Wisconsin in partnership with the Alzheimer’s Association and county Aging and Disability Resource Centers.  Individuals living with memory loss and their care partners can count on finding warm companionship, acceptance to be who they are, and enjoyable discussions and engagement in music, art, theater, poetry, literature and more. 200 individuals participate annually, with many couples attending multiple monthly cafés at multiple locations. One unique feature is that the memory café facilitators (librarians) attend each other’s cafés to offer support, which is especially critical for the smaller libraries who otherwise may not be able to provide more than one staff person to facilitate the café.  The consistency and structure of the cafés means community members living near smaller libraries can enjoy the same dementia programming as those living closer to larger facilities.  Eleven facilitators have also been trained in StoryCorps to collect and preserve the oral histories of participants.

The Library Memory Project began holding their popular “Family Day” event in 2019.  Convened at a local nature center one weekend afternoon a year, participants are invited to extend an invitation to their adult children, grandchildren, and close friends to join them for an enhanced memory café type gathering that includes guided hikes led by a naturalist on accessible trails, live music, and planetarium shows among other activities.

The Library Memory Project continues to grow. In 2022, they held their first all-day symposium, a professional development opportunity for facilitators to learn more about dementia, brainstorm ideas for cafés, and plan for the future. “The memory cafés give us an opportunity to get to know others who are negotiating the ups and downs of this journey” shared Pam, a memory café attendee. “No one really knows until they have ‘walked in our shoes.’ There is a strong common bond of the family members at the café.”

Striving to improve health outcomes and eradicate dementia related disparities in the African American community, Alter recruits worship centers to become Faith Community Champions for their local community. Launched by Dr. Epps and her team in 2019 the Atlanta program serves an estimated 200 individuals annually.  In addition, the program has secured over 40 African American faith community partners in eight (10) different states (Georgia, Florida, Illinois, Kentucky, Minnesota, Arkansas, New York, Tennessee, Wisconsin, and North Carolina) expanding the reach of Alter to close to 40,000 individuals.

Faith communities who commit to offering Alter receive support customized to their community, dementia and older adult well-being education from content experts and a stipend to help offset the cost of delivering the program.  Each worship center must demonstrate their willingness and interest in becoming a dementia-friendly and inclusive community adopting tested practices and offering an array of activities and resources, e.g. education sessions, support group(s), financial stipends or respite care, dementia friendly worship services, and more. A trusted and well-regarded ministry leader or parishioner is selected to serve as the ambassador responsible for implementing the program and serving as the champion for the program within their community.

In addition, the Alter program staff deliver public health education designed for African American communities with the goal of promoting dementia awareness, educating community members on the high incidence of dementia in African Americans, and working to reduce stigma of dementia and how to find trusted medical resources to receive care.  They have also prioritized partnering with dementia-oriented organizations to offer welcoming community based convenings in multiple locations.

Alter is a program of the Emory University’s Nell Hodgson Woodruff School of Nursing, one of the top 5 schools of nursing in the nation and the number 1 school in Georgia. They make a substantial commitment to promote optimal health and wellness for all including strong support for social action in their local and global communities.

The Amazing Grace Choir (AGC) seeks to improve the lives of seniors living with Alzheimer’s and other dementias and family and friend caregivers through the healing power of gospel music. Primarily serving African American participants from the Minneapolis/St. Paul, MN metro area, the program helps to reduce isolation and increase opportunities for personal enrichment while simultaneously creating a trusted and culturally relevant space to encourage families to safely seek out dementia healthcare and support.

Started five years ago, the program holds 20 biweekly 1.5-hour chorus gatherings annually culminating with a public performance at a senior community organization. Their work highlights dementia awareness in a cultural context and healthy aging through the lens of African American music. These events are also recorded and posted online. Every bi-weekly chorus gathering includes a “Wellness Moment” segment spotlighting healthy aging, dementia awareness, music and memory exercises, stress management and more. Additionally, staff check-in with participants by phone between sessions for customized wellness support and information.

AGC has been recognized by the Minnesota Board of Aging for working to increase dementia awareness in the African American community through music and the Minnesota Humanities Center for arts and cultural heritage programming.

AGC is a program of Walker West Music Academy, founded in 1988. The Academy offers a robust array of vibrant music programs for an estimated 6,000 people annually (65% people of color) and across the age spectrum from infants to senior adults. Advancing equity through music rooted in the African American tradition is at the heart of their work. In 2021 the Academy was recognized by the McKnight and Ford Foundations, receiving a Regional Cultural Treasure award for their significant impact on the region’s cultural landscape over decades.

Using the Spirit-Centered Care® philosophy at its core, Elderwise teaches, models, and promotes culture change among caregivers, family members, and healthcare professionals by recognizing the intrinsic value of each person and their capacity to live a rich and joyful life regardless of their cognitive or physical condition. For more than 24 years Elderwise has been providing arts-based activities, guided discussion, and movement with music, while fostering a safe environment for adults living with memory loss in Seattle, Washington.

Like many adult day programs across the nation, Elderwise was forced to temporarily suspend in-person activities. In efforts to stay connected with its community, Elderwise mailed pictures and letters to participants. One participant shared “Dear L– and all the group at Elderwise. (It) just made me cry to see the pictures and letter you sent. Not being with you all is the worst part of the virus for Patty and me.” Annually serving 100 adult day program participants pre-Covid, Elderwise pivoted to create two online communities: MiniWise, to foster connectivity through small conversations, and ArtWise, a six-week art program in which participants create and share watercolor art.

Witnessing the benefit of online communities, Elderwise intends to continue providing these programs to participants who may continue to be unable to leave their homes once in-person programming reopens.

Additionally, during the pandemic Elderwise began developing an online training course for professional and family caregivers using The Elderwise Way: A Different Approach to Life with Dementia, authored by Elderwise co-founder Sandy Sabersky and Ruth Neuwald Falcon. The book, published in 2020, is often described as “graceful” and sparks comments such as: “This Elderwise approach has put a new thought into my head/heart.  It’s not so much what I need to “do” for John, but who I need to “be” for him.”

Elderwise is part of the inaugural group of collaborating organizations that in 2021 opened the Memory Hub, a partnership created by the University of Washington Memory and Brain Wellness Center.

“Art Is…In” is a technology-free, professionally curated art-at-home program that aims to engage and encourage meaningful creative expression for caregivers and individuals living with dementia who cannot participate in virtual activities or those with limited access or ability to use a computer or internet. To date, “Art Is…In” has distributed over 1,200 free art kits to individuals with dementia and their caregivers of diverse backgrounds in partnership with The Memory Center at The University of Chicago Medicine.

The weekly art kit contains two images focusing on dementia-related themes (i.e., sleep, food, music), text (poetry or song lyrics), and discussion points that allow caregivers and people living with dementia to share stories, strengthen relationships, and improve the overall quality of life. One participant said, “You can tell this is so much more than a mere art project. This program is uniquely captivating…the curriculum that includes thoughtful and provocative guided questions truly ‘lit up’ [my husband] and unlocked his engagement and enthusiasm.” Apart from receiving an art kit participants receive a 20-minute weekly check-in call from a student volunteer, many of whom are in the medical field and interested in the health and wellness of the aging population.

“Art Is…In” is an award-winning at-home adaptation of the “Art Is…” program, an in-person art class for persons with dementia and their caregivers, celebrating 10 years of partnership between GoldMind Arts and The Memory Center at UChicago Medicine.

Sunnyside Community Services (SCS) based in Queens is a multifaceted organization serving one of the largest growing Spanish-speaking Latin American groups in the United States. In response to the growing linguistic and cultural needs, their program CARE NYC created a comprehensive targeted program to honor the differences in cultural, linguistic, family dynamics, and religious identities for caregivers of individuals with Alzheimer’s disease or other dementias seeking and receiving services. CARE NYC matches 1,400 caregivers annually to staff members who provide and connect them to a range of support services (i.e., counseling, support groups, education workshops, respite, and supplemental/financial resources) and community-based organizations in their native language.

With over 17 years of experience building community trust, immersing within neighborhoods, and serving hard-to-reach widespread Latino communities, CARE NYC has partnered with various community-based organizations such as libraries, ESOL programs, and churches to raise awareness among caregivers and medical providers who care for people with Alzheimer’s disease and other dementias, and the benefits of an early diagnosis for at-risk populations. Furthermore, with the aid of community partners, CARE NYC has also been able to expand their services to reach growing immigrant populations in the Forest Hills and Rego Park areas. CARE NYC continues to advocate for marginalized caregiving communities by holding public presentations, participating in advocacy campaigns, and appearing in multiple media outlets discussing caregiving topics (i.e., NY1 Noticias, Telemundo, and Univision) as well as bringing services directly to underrepresented and underserved communities in Queens.

Launched in March of 2018, Caregiver/Storyteller is a unique storytelling podcast that provides a platform for Alzheimer’s and dementia caregivers to share personal stories and experiences. The Alzheimer’s and dementia caregiving focused podcast goals are to provide support to caregivers, empower caregivers, and reduce the stigma associated with Alzheimer’s and dementia diagnoses. The monthly free podcasts are available on all major podcast streaming services and CaringKind’s website, estimated to reach more than 300 caregivers and people living with dementia of all ages annually. Since launching, listeners have spent more than 4,655 hours listening to the podcasts, which are well produced, first-person narratives that share a wealth of tips, wisdom, and experience.
“Caregiver/Storyteller believes that all caregivers have a story to tell, and every story is not just personal, but unique.” Often listeners feel isolated and disconnected as they navigate their caregiving journey. The podcast fosters a space for caregivers to share authentic stories that resonate with other caregivers who may find themselves in a similar situation. This structured narrative podcast has also served as a vehicle for caregivers to become involved with the organization, serving as advocates for CaringKind and caregivers.
Caregiver/Storyteller is a program of CaringKind, a robust Alzheimer’s caregiving service and advocacy organization (i.e., Helpline, support groups, a team of social workers, a training program for family and professional caregivers, etc.) established 40+ years ago and rebranded in 2016, they, “work with community partners to develop the information, tools and training to support individuals and families affected by dementia.”

Established in 2014 in response to the need for culturally relevant Alzheimer’s and dementia support for African American community members, the program has now expanded to serve the unique needs of East African (Somali, Ethiopian) and Hmong caregivers, care receivers, and their families. Culturally Responsive Caregiver Support and Dementia Service focuses on building trust and engagement within the community. Their goal is to improve caregivers’ ability to provide care, cope with stress related to caregiving, and localize services within the community.

An estimated 425 caregivers and people living with dementia are served by the Culturally Responsive Caregiver Support and Dementia Service program annually. Programs are offered daily for people living with dementia and caregivers of all ages via in-person (following CDC health and safety protocol), telephone, and video conference. The financial and personal stress that this pandemic has imposed has further increased caregiving stressors, amplifying the need for continued support among diverse older adults, caregivers, and families. The program focuses “on neighborhood-based support services that meet the people served where they are, building on relationships that are founded on trust.”

In response to identified concerns, the organization created and runs the only mobile medical clinic in the country that offers dementia awareness and services, they built a home modification service to allow families to continue caring at home, and they provide an active multi-lingual (Hmong, Somali, Oromo) caregiver support phone line.

A program of Volunteers of America, “for more than 124 years, [they] have closed the gap between people and possibility across Minnesota and Wisconsin.“

“Existing policies in California to support [4 million] caregivers have not kept pace with changing needs.”

In response to this plea, the California Task Force on Family Caregiving was created by the California Legislature in September 2015 through assembly Concurrent Resolution (ARC)38 to examine the challenges faced by family caregivers and primarily caregivers of those living with dementia. Funded by the Archstone Foundation and AARP, USC’s Family Caregiver Support Center convened a diverse, multicultural team of professionals and lay caregivers to conceive of, research, and propose a set of policies with the following fundamental values: supporting diverse needs, including cultural awareness, cultural competency and sensitivity, person and family-centered care, work-life balance, choice, and options for caregivers (e.g., capacity to be a caregiver) and support paid caregivers.
The final report, “Picking up the Pace of Change in California,” included seven actionable recommendations, released to the public, and available online. To date, several pieces of legislation have directly or indirectly been influenced by the work of this groundbreaking Task Force. Several members were appointed to the California Master Plan on Aging, where they continue to bring forward the goals and recommendations of the Task Force, resulting in heightened inclusion of caregiver needs in the plan development. States and countries, including China, have used the report as a template to build efforts to secure funding for caregiver services in their communities.

Giving Voice Initiative (GVI), created in 2015, is a leader in the worldwide movement to help people with Alzheimer’s disease and their partners to live better lives, and to strengthen connection to their community by singing together. This model music chorus program uses a well- honed learning paradigm that includes accessible well adapted music, uniquely trained music leaders, built-in social time, all culminating in celebratory concert performances for the community. Their foundational belief is that creating music together is a gateway to demonstrating how to live well with dementia. Today over 200 members, most 65+ yrs, sing in three flagship choruses in Minnesota. GVI has inspired over 40 choruses across the US, Canada and Australia.

Key accomplishments include demonstrating that people living with dementia are capable of new learning. In 2018, a collaboration with the American Composers Forum created the opportunity to tell the singer’s own stories of struggle, resilience and gratitude. Nine original songs were performed by 170 singers at the Ordway Center for the Performing Arts (St. Paul, MN) before 1,000 people. The Love Never Forgets concert was a significant achievement in defying stigma and acknowledging creative expression.

GVI engages community partners for quantitative and qualitative research to document the powerful connection between neurochemistry and the psycho-social benefits of singing, for both persons with dementia and care partners. Their program model, rooted in replication, offers a free online toolkit, including detailed assistance in planning and operating choruses for use in a variety of different communities, webinars and on-line learning, and an annual 2-day national convening of chorus programs to help foster collective learning, share best practices, and build a collaborative network to help bring these program to communities far and wide!

Founded in 2011, Sweet Readers pairs middle school students with adults living with dementia and their care partners. In an intimate group setting, through creative human engagement, they make life-affirming connections. The program serves close to 300 adults annually. Led by a trained facilitator (often a school or art educator), each program is comprised of 5-9 weekly, one-hour sessions. Sessions are held in school classrooms, museums and/or eldercare centers. Together, participants explore and create art, music, poetry and/or movement, using themes such as identity, home, love, community, and adventure. In the process, they discover each other and make lasting bonds.

Year-over-year evaluation shows a consistent impact on young participants with over 90% expressing how the program has taught them to “see the person behind the disease,” empowered them to feel more confident to interact with people living with dementia and better educated them about Alzheimer’s disease, care needs, and overall brain health. Care Partners express that they see their loved one through a “new lens” and all adult participants express the joy they experience by joining in the program activities.

Sweet Readers has collaborated with dozens of community partners including: The Metropolitan Museum of Art, The Jewish Museum, The New York Historical Society, The Nightingale-Bamford School, Ramaz School, the Icahn School of Medicine at Mount Sinai, and also a growing community of Geriatric Care Managers.

Centro Tyrone Guzman is the oldest and largest Minneapolis-based multi-service Latine organization. Their program, Centro Wise Elders, actively engages community members in sustaining an informed, safe, and respectful environment to support the health and well-being of Spanish speaking individuals living with Alzheimer’s disease and other dementias, and their families. The program serves Spanish-speaking Latine families in Minnesota, targeting low-income immigrant families. Since 2015, they have provided Alzheimer’s-related support and resources to more than 1,600 caregivers, elders, and community members.

A key initiative, conducted over the course of the past two years with the support of Latine elders and their caregivers, was the creation of a culturally and linguistically appropriate Toolkit based on the “House of Memories” museum dementia awareness-training program. Wise Elders staff, using this new Toolkit, guide Latine elders and their caregivers through the process of identifying objects of importance from the elders’ past and using these objects to initiate conversations, strengthen family connections, and contribute to the self-esteem and well-being of the person with Alzheimer’s and experiencing memory loss.

Centro Wise Elders staff has pioneered the adaptation of evidence-based model programs and resources for use in the Latine community including: “House of Memories” dementia awareness training; Montessori-inspired tools and strategies; and Respite Education and Support Tools (REST) in Spanish. Centro partnered with Teatro del Pueblo to create an original, culturally-appropriate, Spanish-language play to provide awareness and information on the ten warning signs of Alzheimer’s disease; worked with the Minneapolis Institute of Art (Mia) to engage elders in creating Alzheimer’s activity mats, and served as a cultural consultant for the Minnesota ACT on Alzheimer’s Initiative -revising the “Dementia Friends” curriculum and providing feedback to make it culturally responsive.

For nearly 20 years, the Charlotte Symphony Orchestra (CSO) has reached out beyond the traditional music main stage, to bring professional musicians to individuals living with early to mid-stage Alzheimer’s and dementia. In the last two years they have strengthened their efforts to focus more fully on reaching underserved communities.

Ever evolving, the CSO has incorporated the latest research and has served as a study subject for the Charlotte-based Queens University study (Music Therapy program), tailoring their concerts and interactive intentional music selections to positively affect mood, interpersonal relationships, and even some demonstrated improvement in cognitive functioning for both the individual living with Alzheimer’s and their caregivers.

Last year the CSO presented 24 Healing Hands programs and plans for at least 22 programs this year. Healing Hands is the only program in North Carolina to bring the level of full string orchestra performances to seniors living with dementia, and particularly to those with lifelong limited access to main stage performances due to economic, ethnic or cultural barriers.

Down Syndrome Network of Arizona’s Aging Matters: Growing Older with Down Syndrome program is leading the provision of person-centered, dementia capable care for adults with Down syndrome and their families. Monthly programs focus on exercise, nutrition, self-expression in art and music, meaningful peer relationships, research and caregiver education. There are 250 regularly attending program participants. Since establishment in 2016, there has been 50% annual participation growth. The program is aided by volunteers who provide 300 hours/year of physical and safety supports, as well as encouragement.

This is the first generation of individuals with Down Syndrome who are living long enough to acquire Alzheimer’s. Adults with Down syndrome experience accelerated aging and may begin experiencing geriatric complications 20 years earlier than their typical peers. Life slows down in their 30s and 40s. By age 60, 56% of adults with Down syndrome are diagnosed with Alzheimer’s, and 80% will experience some type of dementia. But when the adult is placed with typical aging peers for support, they do not feel like they belong since they don’t see a reflection of themselves.

Because of childhood medical advances, the life expectancy for those with Down syndrome has nearly doubled in the past quarter century, from about 25 years in 1983 to 60 years today. For the first time, adults with Down syndrome are outliving their caregivers. Aging Matters empowers individuals and families to prepare for the unique challenges associated with growing older with Down syndrome and supports them every step of the way.

Eighteen (18) independent not-for profit organizations agreed to work together, unifying their voice and sharing common language to promote public policy that benefits older adults and family caregivers in Tennessee. They were ultimately successful in increasing access to services (permit religious organizations-churches, synagogues, etc.) to offer limited respite services without licensure for adult daycare, expand systemic protection for elder and vulnerable adult victims of abuse and neglect, and retain access to affordable health insurance. It is estimated that more than 110,000 people 65 or older are affected by Alzheimer’s in Tennessee. In the next decade, that number is expected to increase by up to 44 percent.

The coalition is currently working with Tennessee’s Area Agencies on Aging and the Tennessee Commission on Aging to develop financial resources to benefit elder community members and their caregivers. The membership include: Tennessee Respite Coalition, Tennessee Justice Center, Mental Health America of the Midsouth, Fifty Forward, Tennessee Commission on Aging and Disability, League of Women Voters of Tennessee, AARP, UT College of Social Work, Tennessee Disability Coalition, Tennessee Chapter of NASW, Council on Aging of Middle TN, West End Home Foundation, Alzheimer’s Tennessee, Greater Nashville Regional Council, Tennessee Association of Adult Day Services and the Tennessee Conference on Social Welfare.

This broad based group chose to put their differences aside to fight for older Tennesseans, an excellent role model for other states facing similar challenges to gaining critical support for resident elders and family caregivers. Now after two years their work together continues with equal energy towards improved policy.

The Percolator Memory Café Network (“Percolator”) reduces social isolation and increases meaningful activity and creative expression among people living with dementia and their caregivers by scaling access to high quality memory cafés throughout Massachusetts. The Percolator has enabled dementia support providers to share knowledge and resources rather than competing, thereby making Massachusetts home to the largest number of memory cafés in the nation. Accomplishments include supporting the launch of over 70 new memory cafés, including two Spanish speaking cafés and 13 cafés designed to include people who have both dementia and a developmental disability. The teaching artists—who lead dance, singing, drumming, theater games, poetry writing, art making, and more—share their expertise among the cafés.

JF&CS opened the second memory café in Massachusetts in spring 2014. Guests immediately asked for more hours and locations. JF&CS responded by starting the Percolator to help other organizations launch cafés, a sustainable approach that would foster cafés to fit each unique neighborhood. The Percolator has grown to 418 participants; 62 teaching artists participate in the guest artist directory; over 2,500 caregivers and persons with dementia participate in a café activity annually. The Memory Café Toolkit (also in Spanish) has been downloaded over 450 times since its release in August 2016. New community sectors, including two libraries and several houses of worship, have used the Toolkit for help in starting their own café.

The ACTS 2 Project meets the needs of distressed African American caregivers of older adults with dementia. The Florida-based program provides culturally-sensitive, no-fee, skills-training and support (also known as cognitive-behavioral intervention) to dementia caregivers over toll-free telephone. The project also conducts a robust outreach effort to raise awareness about dementia through community presentations (reaching 4,000 annually) while also giving telephone consultations and community referrals.

Research has found many African American adults do not participate in social service programs outside their culture and community. In addition, financial challenges and limited transportation options to get to appointments prevent caregivers from accessing help. To overcome these barriers, ACTS 2 has successfully trained 17 faith community workers (lay pastoral care facilitators) to deliver faith-based, skills-building and support sessions (a 12-part series ranging from relaxation training integrated with prayer and meditation to problem-solving through goal setting). Over 50 family caregivers enroll in the program each year. Caregivers report improvements in emotional functioning, caregiving skills, and self-care, stating that the ACTS 2 groups led to:

• significant relief in depression.
• significant improvement of caregiving problems.
• strong bond between caregivers and lay facilitators who offer on-going support.

One participant said, “The responsibility of caring for a parent with Alzheimer’s was very scary for me. I was a wife, mother of two children, and working full-time when I became responsible for the daily needs of my mother with Alzheimer’s. ACTS 2 allowed me to communicate, from the comfort of my own home, with other caregivers experiencing many of the same situations, feelings, and challenges. The telephone counseling sessions were conveniently conducted around my busy schedule and focused on dealing with difficult behaviors. This helped me to keep close to, and respect the dignity of, my dear mother. ACTS 2 was truly a blessing!”

ARTZ @ Jeff is a collaboration initiated by ARTZ Philadelphia with Thomas Jefferson University’s medical and health professions schools. ARTZ @ Jeff is a first-of-its kind program, interweaving individuals living with dementia, their family caregivers, and health professions students through arts-based interactions. Due to the symptoms associated with dementia—memory loss, difficulty communicating, and confusion—patients often become voiceless and marginalized by society, specifically in health care settings. ARTZ @ Jeff works to reverse the traditional provider-patient hierarchy and enlists people with dementia as the teachers and mentors to health professions students, teaching them empathy and the “real” story about living with dementia .

The program pairs students with mentors (those living with a dementia-related disease and/or caregivers) for six to eight weeks. Together they participate in conversations about art, using these initial encounters with each other to spur more intimate discussions about life and living with dementia. Most mentors return to mentor a second or third time, saying the work gives them a sense of purpose and offers a meaningful avenue to help improve the healthcare experience for others living with dementia. Many of the students reflect on the strong positive influence the mentor/mentee relationship offers them. Mentors’ and students’ responses to the program are documented in a series of YouTube videos. The arts advocacy program and medical school collaborators recently secured a significant grant from the Pew Center for Arts & Heritage. The newly funded project draws on ARTZ Philadelphia’s high quality arts and dementia programming while also building on Jefferson’s nationally recognized humanities curriculum and creating a new arts-based collaboration with another Philadelphia organization, Theater of Witness; but it stays true to its core emphasis on the power of the mentor/student interactions.

“The focus on the program’s mentor-student relationship is completely unique in this context of arts-centered engagement, growing into an extended relationship between health professionals and people living with dementia over time,” said Susan Shifrin, founding director of ARTZ @ Jeff. For students, the program serves as an “inoculation” against the future loss of empathy that sometimes occurs when they enter the clinical setting.

Opening Minds through Art (OMA) is an intergenerational art-making program designed for people with dementia. It was founded in 2007 at Scripps Gerontology Center at Miami University, an Ohio Center of Excellence in Cultural and Societal Transformation. OMA has become a central expression of the Scripps commitment to this transformation in aging policy and practices.

OMA is a bridge-building program that partners students, families, caregivers and volunteers with people who have dementia to provide them with innovative opportunities for artistic expression. OMA has developed over 100 visual art projects that enable people living with dementia to successfully generate artwork. The resulting artwork is comparable to modern art created by master artists. At conferences, OMA often shows its artwork next to images by master artists and asks the audience to guess which piece was created by an OMA participant. The audience usually has difficulty deciding.

OMA has been replicated at over 50 retirement communities throughout the US and Canada. At Miami University, OMA’s home base, over 1,000 students have gone through the program. OMA recently received a grant from the state of Ohio to replicate the program in 100 additional retirement communities.

OMA has a strong research record with multiple academic publications, generates beautiful artwork, and has developed all the tools for successful replication. It provides an opportunity for volunteers, families and caregivers to engage around the strengths of the person with dementia.

Zuni Adult Day Care and respite program services have created an oasis where elders with dementia and their family caregivers thrive. Prior to the Center’s establishment in 2007, elders on the reservation living with dementia and other critical care needs had to leave the reservation for nursing home care. Almost universally, the elders would be deceased within a week or two. The richness of being Native American, speaking a language unique to their people, living with deep traditions and customs also conspired to make off-reservation care difficult to provide.

Zuni tribal members began looking for better ways to help their elders age in place, while also supporting the elders’ family members. Zuni Pueblo is located in a rural, remote area on the Zuni Indian Reservation, far from mainstream America and residents are mostly low income. Tribal members had not only to work diligently, but also seek out creative ways to find a sustainable path to build a dementia care program that could succeed.

There is no word for Alzheimer’s disease in the Zuni language and little was known about the illness. Members learned all they could about dementia, sought state and federal resources and other tribal programs—including non-Zuni tribes—to secure funding and worked to establish a model program that would be acceptable to tribal members and tribal elders living with dementia.

Today, the Adult Day Care program gives family caregivers respite to take care of themselves and their needs, including the very high percentage of tribal members living with diabetes. Ongoing caregiver training is provided through the Ashiwi Support Group including reaching out to the greater New Mexico community to build knowledge about Alzheimer’s disease and other dementias and dealing with challenging dementia care behaviors, all with cultural humility.

The Dementia Cal MediConnect Project is making critical progress towards improving the quality of care delivered to people with dementia and their family caregivers in California’s “duals” (Medicare/MediCal) demonstration project. Since inception in 2013—and in collaboration with the California Department of Aging (CDA), Alzheimer’s Greater Los Angeles (ALZGLA), the Alzheimer’s Association in Northern California, Alzheimer’s San Diego, and ten health plans in six California counties—the project works to improve access to quality healthcare and supports for poor and ethnically diverse people with dementia. This is done by:

• advocating with and providing technical assistance to health plans;
• training their care managers;
• providing support and disease education to patients and their caregivers.

An evaluation by University of California San Francisco (UCSF) found staff reported significant improvements in dementia-capable care coordination practices, including identifying and supporting the caregiver.

As of fall 2016 almost 300 care managers and over 500 family caregivers had received disease education or support. Over 40 Dementia Care Specialists are in place at eight of the participating health plans. In response to dedicated, collaborative advocacy, the Centers for Medicare & Medicaid Services (CMS) initiated action to issue a critically important CMS Informational Bulletin focusing on the quality and business case for health plans and states to create improved systems of care for people with dementia, especially within the Duals Pilot. The State of California will receive the Bulletin, followed by Texas, and then other states where advocacy is underway to improve dementia care based on the promising practices begun in the Dementia Cal MediConnect Project.

“Retaining Identity: Exploring the Role of Creativity in Healthcare” is the motto for the Memory, Aging & Expressive Arts community engagement course offered through the University of Michigan Stamps School of Art & Design. This intergenerational program benefits university students and individuals with Alzheimer’s disease and related dementias (through the Silver Club Memory Programs) and their caregiver(s). Paired one-to-one, participants meet weekly over 13-weeks to engage in dance, music, writing, visual art exercises, and more. Students from multiple disciplines (social work, medicine, gerontology, public health, art, and design) engage in an interdisciplinary course on aging, dementia, and the role of art in health education. Silver Club members are able to enjoy a structured opportunity for camaraderie with peers, keeping their mind and body active, and the opportunity to teach students how to cope with life’s challenges. In turn, the students enjoy teaching their elder partners to explore creatively. Family caregivers report that the program has increased communication with their family member and has helped improve their family member’s sense of self-worth.

The Arts & Minds program at the Studio Museum in Harlem reaches an economically disadvantaged and culturally underserved population with Alzheimer’s disease and related dementia and their caregiver(s). Recognizing class, education, and geographic barriers to accessing museum arts programs at other institutions, a Harlem based physician and museum educator started Arts & Minds at the Studio Museum in 2010 (200 programs conducted to date) for the Harlem community. The organization has since initiated the first Spanish-language arts museum program in New York City, reaching out to the East Harlem neighborhood. All programs are offered free of charge. Held weekly, participants start each 90-minute session with an introduction to a work of art chosen as the focus of the group’s inquiry for the day. A facilitated session, incorporating both verbal and non-verbal communication, encourages the exchange of observations and emotions. Following the session is a thematically related art-making workshop, using quality material, led by museum educators and volunteer interns. The entire staff at the museum, from security guards to facilitators, is oriented to and participates in making the experience positive for the “the deeply forgetful individual” and their caregiver.

The Campaign to Eliminate the Inappropriate Use of Psychotropic Drugs and Improve Dementia Care in Nursing Homes is working to replace a “culture of drugging” with person-centered care. FDA warnings and numerous studies show the harmful effects of drug use with this population and CANHR found that nearly one-third of California’s nursing home residents living with dementia still received powerful antipsychotic drugs that are neither intended nor FDA-approved for their medical condition. CANHR’s campaign has documented a reduced use of “chemical restraints” by 20%+ for residents with dementia statewide. The long-term goal is to reduce usage of these drugs only for those instances where they are medically indicated. Since launching in 2010, CANHR has co-hosted 13 dementia care symposia bringing palliative care experts from around the country to teach evidence-based, nonpharmacological models for managing aggression, agitation, wandering, and other behaviors commonly associated with dementia reaching thousands of dementia care practitioners, social workers, nurses, facility administrators, and family caregivers. To improve transparency for caregivers, CANHR publishes quarterly data (collected through the Freedom of Information Act) on nursing home psychoactive drug use. CANHR also uses targeted media campaigns (statewide and nationally), provides curricula and training material, and offers consultation to others seeking to replicate this work.

The Guardianship Fraud Program and Hotline offers a best practice standard to combat elder financial abuse (fraud, waste, and financial mismanagement) in the area of guardianship and conservatorship. The program employs monitoring, education, and outreach activities providing a pro-active, consumer responsive, advocacy service for caregivers and individuals living with dementia. The program assists caregivers by investigating alleged guardianship fraud cases and since the Hotline began in 2010, over 800 guardianship cases have been audited and investigated; over $4.4 million in unsubstantiated disbursements, missing assets, and fraud identified; and 45 cases have been referred to law enforcement and other agencies resulting in two arrests. Of the population served, 60% are individuals living with dementia or Alzheimer’s disease. The program is currently being replicated in 25+ counties in Florida. The Guardianship Fraud Program and Hotline tackles this difficult problem through enhanced auditing utilizing professional auditing standards, educating guardians and attorneys, offering training classes and education seminars, building relationships with community and criminal justice partners, and maintaining a consistent outreach program to educate the community.

Tales and Travel – Alzheimer’s Memories Project is an innovative program that provides library services directly to persons with early and mid-stage Alzheimer’s disease and their caregivers. Created by Gail Borden Public Library District, the highly replicable program has been adopted by other libraries and by memory care centers. Staff and volunteers use materials already in library collections to stimulate memories and conversation through reading and music resources via “excursions” to different regions or countries around the world. The location is identified on a globe, encouraging conversation. A brief folktale, legend or myth, interesting facts about the location and text are read aloud. Books rich in color photos are browsed to further engage participants in conversation and music and food from the destination may also be incorporated. The program is currently being adapted for at-home caregivers, who will check out “carry-on bags” at the library for use in the home.

Orange County, California is home to the largest population of Vietnamese residents in the U.S. They are aging while retaining traditional customs and language. Orange Caregiver Resource Center has served this community since 1997 providing the first culturally and language competent Vietnamese family caregiver resources to caregivers of persons with Alzheimer’s disease and related disorders and other chronic illnesses in California. Family caregiving is already challenging; cultural and linguistic factors create added barriers to service access. The Vietnamese Family Caregiver Support Group is offered monthly and accompanied by a variety of supportive services including assessment and care planning, information and referral, counseling, and educational workshops. Workshops that include guiding caregivers through understanding and completing advance health care directives for themselves and loved ones; a ground breaking intervention within this community. Caregivers report increased knowledge and awareness of community resources and that they feel more competent as caregivers and better able to take care of their own health through participation in the programs.

ACT on Alzheimer’s is a volunteer-driven, statewide collaboration seeking large-scale social change and community capacity-building to transform Minnesota’s response to Alzheimer’s disease and related dementias. ACT was established in 2011 by a subgroup of the State’s Alzheimer’s Disease Working Group to implement recommendations made to the Legislature. The long-term goal is to stimulate statewide action on public policies and programs that will advance and sustain Alzheimer’s readiness and community-wide support. A volunteer-composed Leadership Council, Steering Team, Leadership Groups in five major goal areas and thirty-three Community Action Teams of volunteers are collaborating to help communities create a supportive environment for people living with Alzheimer’s disease and their caregivers. Successes to date include development of best-practice educational curricula and practice tools for clinicians that have been adopted by four health systems; development of a web-based toolkit to help communities assess and advance dementia capability; and an economic model that projects health care cost savings in Minnesota associated with participation in in-person caregiver intervention. The ACT on Alzheimer’s provider practice tools and interdisciplinary curricula will be the foundation for a national dementia curriculum developed by the Health Research and Services Administration (HRSA), resulting in national dissemination.

Success Through a Unified Vision: the Fight to Preserve Alzheimer’s Care in California saved Adult Day Health Care (ADHC) from elimination as a Medi-Cal benefit through a concentrated effort utilizing public interest litigation, grassroots advocacy and persuasive media stories. As a result of decisions made by the Governor and Legislature to eliminate ADHC as a State Plan Benefit in 2011, 252 centers made plans to discharge 37,000 frail elders including an estimated 15,000 persons with dementia and their families by November 30, 2011. No other state has ever proposed wholesale elimination of the ADHC benefit. Due to the severity of the state’s actions, CAADS’ advocacy prevent significant harm to beneficiaries and the families had to follow an innovative course. Key collaborators included attorneys, Disability Rights of California, AARP, California Hospital Association, and the Alzheimer’s Policy Council. A legal settlement with the state stopped the discharges on December 1, 2011. In addition to reopening the doors to ADHCs across the state, the campaign evidenced other successes: changes in ADHC eligibility requirements, grassroots mobilization, an extensive media campaign resulting in extensive coverage of “impact” stories; and application of the principles of the Americans with Disabilities Act to obtain a temporary injunction based on immediate harm and ultimately a federal court settlement creating the Community Based Adult Services Medi-Cal benefit under managed care. Even so, by mid-2012, 52 ADHCs permanently had closed their doors. The campaign’s key elements and lessons learned could be replicated or adapted in other states.

Receiving the Award:
Gary Glazner, Director, New Mexico Literary Arts

The goal of the Alzheimer’s Poetry Project (APP) is to improve the quality of life of people living with Alzheimer’s disease and related dementias by facilitating creative expression through poetry. The rationale for using poetry with people living with dementia stems from research that shows aerobic benefits and increased synaptic activity when reciting poems and significant emotional and psychological benefit from being able to access the creative part of one’s identity. Since 2003, APP has provided professional arts programming in 24 states and internationally serving over 15,000 people with early to late-stage dementia and their caregivers. It also provides training for professional caregivers and teaching artists. The result has been an innovative, highly replicable arts intervention to improve the quality of life of people living with dementia and their families.

Receiving the Award:
Kathleen Herd, Grants Administrator and Mark Cornett, Chief Executive Officer, Alzheimer’s Community Care

Alzheimer’s Community Care launched the Family Nurse Consultant (FNC) program in the Everglades agricultural region of Palm Beach County, reaching the underserved communities of Belle Glade, Pahokee and South Bay. The program provides Alzheimer’s caregivers with education, support and access to community-based services to continue home-based care and experience quality of life for themselves and their loved ones. The minority population of predominantly farm workers faces many challenges including poverty, low education levels, and high unemployment. Because minority populations have been at greater risk for Alzheimer’s disease, the need for access to dementia-specific interventions is critical. The Family Nurse Consultant (FNC) program serves as a lifeline for families living with Alzheimer’s disease. The program’s goal is to provide caregivers with support, tools and resources needed to continue providing home-based care for their loved ones with Alzheimer’s disease. The FNC provides interventions, home visits, needs assessments, and care plans designed to meet the needs of the family caregiver and care recipient throughout all stages of the disease. These interventions have reduced caregiver stress and reduced or eliminated the need for nursing home placement. The results have been improved quality of life and safety for caregivers and their loved ones.

Receiving the Award:
Banker White and Anna Fitch, Co-Directors

WeOwnTV is a nonprofit organization that produces educational documentary films that explore critical issues of our time by creating robust social campaigns and educational outreach activities around its productions. The organization produced The Genius of Marian, a visually rich and emotionally complex, feature-length, documentary film, that explores the heartbreak of Alzheimer’s disease, the power of art and the meaning of family. The documentary follows Pam White and her family for three years following her Alzheimer’s diagnosis as her son, the filmmaker, documents the changes that occur in all of their lives. The Genius of Marianhas been particularly resonant for family caregivers, caregiving professionals and those directly affected by Alzheimer’s disease and age-related disabilities because it prominently features family caregiving in action. The objective of the film is to inspire new thinking about how we define health and wellness and to change the way we cope, as individuals and as a society, with Alzheimer’s disease, aging and loss.

The Center on Age & Community’s activities focus on leading in the field of long term care by offering cutting edge educational programs and products, and creating national models of person-centered dementia care. TimeSlips is one such model. TimeSlips opens creative storytelling to people with dementia by replacing the pressure to remember with the freedom to imagine. It inspires others to see beyond loss to recognize their strengths; and improves the quality of life of people with dementia and their caregivers. The program offers training, certification and consulting, and acts as a resource for those dedicated to transforming dementia care through creative engagement. The project also hosts a free, interactive website where caregivers can facilitate storytelling wherever they are—at home or in congregate settings. Approximately 3,000 caregivers have been trained through in-person and online workshops over the past 14 years.

The Amherst H. Wilder Foundation is a nonprofit health and human service organization that assists thousands of people each year through direct service programs, research, leadership and community capacity building. About 19% of caregivers self-identify as such. Most caregivers do not access resources to help them in their role, and as a result do not access supports that could help them in their role. This creates a domino effect of negative health and economic consequences. Wilder’s response to this problem was to develop and launch an innovative approach to identifying and engaging caregivers before the crisis. This public awareness campaign has had tremendous impact on creating community awareness of caregivers. Approximately 45,000 caregivers of those with dementia were reached by the year-long campaign.

The Los Angeles Gay & Lesbian Center operates the only fully integrated Seniors Services program for lesbian, gay, bisexual or transsexual (LGBTQ+) seniors in the Greater Los Angeles area. Alzheimer’s disease impacts LGBTQ+ seniors at the same rate as their heterosexual peers. As a result, the Center’s Seniors Services program developed monthly Alzheimer’s (Disease) Caregiver and Bereavement support groups. These are the only support groups specifically for LGBTQ+ caregivers and partners living with Alzheimer’s disease in the nation. Those who participate in the Caregiver support groups also have access to a system of comprehensive wrap-around care with legal, medical, and mental health services.

Kairos Dance Theatre is a community-based arts organization including an intergenerational dance company in Minnesota. Most of the organization’s energy is focused on 7 to 8 weekly The Dancing Heart program sites. Kairos’ work is based on a collaborative artistic engagement model within healthcare systems; and a fundamental shift from the traditional medical model, where caregivers see and respond to the recipients’ deficits, to an assets building model. The organization’s goal is to create an environment where participants, caregivers, and volunteers are valued and their gifts are woven into our creative work together. Kairos brings dance, storytelling, and community building expertise into collaboration with caregivers in healthcare settings. Website: www.kairosdance.org

The Vital Caregivers Program of the Kairos Dance Theatre improves the well-being of caregivers who work in or have a loved one with Alzheimer’s disease in a memory care adult day program or assisted living facility. It is based on The Dancing Heart: Vital Elders Moving in Community, Kairos’ pioneering, national program that has improved caregiver satisfaction and institutional cultures while providing measurable health benefits to participants, and cost-of-care savings to institutions. Using participatory community-based performing arts creation strategies, it provides in-depth opportunities for artistic development, higher-level physical activity, and community connection. The program has been shown to measurably slow the process of dementia, and sustain or improve physical, emotional, and cognitive health in participants, and to vivify caregivers.

Rush Alzheimer’s Disease Center (RADC), one of 29 Alzheimer’s disease research centers across the country designated and funded by the National Institute on Aging, supports the Without Warning Program. RADC provides a full spectrum of services in the diagnosis and care of people with Alzheimer’s disease and other dementias. The organization has a special emphasis in supporting both the patient and the caregivers through the following areas: research; clinical care services; educational outreach to patients, family members and professionals; and the Without Warning (WW) Program. WW is a free, ongoing, multifaceted advocacy program tailored for both the person with younger-onset Alzheimer’s disease (YOAD) and his or her entire family. For over 7 years, through advocacy and support efforts, WW has helped hundreds of families living with YOAD who live in the Chicago area and beyond. Advocacy efforts include group meetings, presentations, interviews, and public hearings. Website: https://www.rush.edu

Without Warning (WW) is an advocacy, education, and support program. The overarching goal of WW is to provide a voice to all family members living with younger-onset Alzheimer’s disease (YOAD). Frequently overlooked by national advocacy campaigns that focus on older adults with AD, people with YOAD and their families often describe themselves as “voiceless”. Using the resources and support of WW, members seek to raise awareness, develop relationships, and instigate change. WW advocacy efforts occur on a personal level, through support group meetings; within the larger community, through presentations and interviews; and nationally, through policy hearings. WW members state that engaging in advocacy efforts increases their sense of purpose and connectedness while decreasing stress and depression. In the greater community, advocacy efforts by WW members have effected change among the Social Security Administration, state and federal representatives, healthcare professionals, clergy, youth, and the general public.

The mission of Southern Caregiver Resource Center (SCRC) is to assist families and communities master the challenges of caring for adults with chronic and disabling conditions. Established in 1987 as a private nonprofit 501c3, SCRC is the leading provider of support services to family caregivers in San Diego and Imperial Counties. Over the years, the organization has helped thousands of families caring for their loved ones through information and referral, comprehensive caregiver assessments, short and long-term care planning and consultation, individualized short-term caregiver counseling, caregiver training, community education and outreach, professionally facilitated support groups and respite services through contract vendors. These are the services proven to help families remain healthy, employed and keep their loved ones safe. Services are provided by highly trained professional staff at no cost to clients, and are available in Spanish. SCRC and collaborating partners serve approximately 32,000 people annually. Website: www.caregivercenter.org

The program is designed to help reduce caregiver depression and burden, and improve caregiver coping skills and health of Spanish speaking Latino family caregivers of persons with Alzheimer’s and associated dementias (ADAD). The program’s overall goal is to provide a culturally and linguistically appropriate mental health intervention for Latino family caregivers. Latinos are the fastest growing population at greatest risk for developing ADAD, and Latino caregivers experience greater levels of distress when compared to other populations. Activities include translating the evidence-based REACH (Resources for Enhancing Alzheimer’s Caregivers Health) intervention into a structure feasible to deliver in a social service setting; providing outreach through Promotoras; and providing psycho-educational interventions. The program reduces caregiver burden and depression, and increases ability to cope with care receiver memory and behavior problems.

The African American Alzheimer’s and Wellness Association was established in 2005, and the Allegheny West Conference of SDA, as the fiscal agent, was established in 1950. Both are non-profit organizations. The AAAWA has a board comprised of 11 individuals, representing healthcare professionals and community organizations. As a result of the growing numbers of individuals of African descent suffering from Alzheimer’s disease, this organization was established. The organization provides support, education and linkages to families that are suffering from this debilitating disease. The Bridge Program was instituted to fill the gap that exists in these communities due to culture differences. The AAAWA has been recognized by the Ohio Senator’s Office as a much needed program in the local communities. The AAAWA conducts annual fundraisers, from awareness walks to formal banquets, to raise the necessary capital to make these services available to vulnerable communities of African descent. Website: www.africanamericanalz.org

The primary goal of the Bridge Program is to provide families of African descent with Alzheimer’s disease caregiver resources.. Many of the caregivers suffer from Post Traumatic Syndrome (PTS) from experiencing wars and violence in their home countries which include Somalia, Ethiopia and Ghana. By providing respite, translation, support groups, memory screenings, linkage to legal resources, family consultations and other services, the Bridge Program has assisted many families care for their family members who have Alzheimer’s Disease. The Bridge Program provides a doorway for caregivers to find culturally appropriate relief and support throughout the long journey of providing care for their loved ones with Alzheimer’s disease.

Songwriting Works Educational Foundation, a 501(c)3 organization based in Port Townsend, WA, operates internationally providing workshops, trainings, tools, and respite activities that engage hundreds of elders, families, caregivers and music / arts professionals each year. The program’s mission is to restore health and community through the power of song. In conjunction with local, regional, and national arts, aging, health and education partners, Songwriting Works seeks to ensure quality of life for older adults across the cognitive spectrum and to transform the health and well-being of society.

The organization grew out of the Songwriting Works method of musical engagement that founder and director Judith-Kate Friedman developed as California Arts Council artist-in-residence at Artworks / Institute on Aging / Mt. Zion/UCSF (1990-92) and replicated with elders across the care continuum (Marin Arts Council 1995-99, Jewish Home of San Francisco 1997-present, et al.). To date, more than 3,000 older adults and caregivers have participated, composing 300 songs. The Songwriting Works experience has been likened to musical mural painting. Elders and families join together with trained professional songwriters to collectively compose and perform their own original songs. Workshops take place at skilled nursing, assisted living, adult day and community centers. 80% of Songwriting Works‘ family programs serve participants who have early to late-stage Alzheimer’s or other dementias.

The overall goal of the program 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. In order to fulfill this goal, the objectives include offering culturally and linguistically appropriate patient and family services to assist those affected with Alzheimer’s disease; educating both the public and health care professionals through community and caregiver education and professional training; supporting research into the cause, prevention, treatment and cure for Alzheimer’s disease and related disorders; and advocating improved public policy and promoting needed legislation.

The Asian Pacific Islander Dementia Care Network – L.A. (API DCN) addresses gaps in the community-based continuum of care for API’s by expanding culturally and linguistically competent services for caregivers and building the capacity of community-based partner agencies in Los Angeles. The overall aim of the project is to enhance the capacity of a community-based network of health, aging and ethnic support service providers to better serve caregivers of older adults with dementia. The project seeks to address the specific needs of API caregivers in Los Angeles by building on community strengths and addressing gaps in the service continuum that have been identified through a needs assessment and community based asset mapping.

In July 2000, the API DCN first began targeting family caregivers of individuals with dementia (Chinese, Vietnamese and Japanese communities in the Bay Area and Los Angeles). Four years later, the project’s second cycle expanded to include Korean (L.A.) and Vietnamese (Orange County) families. The current cycle (2009), expands efforts in the Chinese and Japanese communities and begins services for Filipinos in Los Angeles. Through participating DCN agencies, caregivers receive culturally-appropriate assistance from Care Advocates, (trained bi-lingual, bi-cultural paraprofessionals), who provide support, education about the disease and how to care for the caregiver, service referrals, translation, and subsidized respite care referrals.

The Alzheimer’s Foundation of America (AFA) is a national nonprofit 501(c)(3) organization with a mission “to provide optimal care and services to individuals confronting dementia, and to their caregivers and families, through member organizations dedicated to improving quality of life.” AFA currently comprises 1,400+ member organizations nationwide that provide a range of hands-on services. AFA supports individuals and families through caregiver education, crisis counseling by licensed social workers, and respite care grants. AFA also provides technical and financial assistance to local non-profit member organizations to enhance programs and services.

Recognizing that teens are impacted by the rising incidence of Alzheimer’s disease, AFA Teens educates, engages and supports teens with direct, online education and interaction. Embracing teenagers’ thirst for the Internet, the division’s hallmark since 2003 has been its dedicated website, which at the time of this writing, was receiving between 35,000 and 45,000 hits each month. The site conveys information about the disease and caregiving tips in the peer-friendly and practical language that teens need while providing teens with several creative outlets for their thoughts and emotions. There is a moderated message board and Facebook page where teens can post observations and concerns and receive advice from AFA social workers, and teens may submit creative contributions, such as poems, essays, videos and scanned artwork, on an ongoing basis.

AFA added many of the creative enhancements in 2008, when AFA recruited a seven-member AFA Teens Advisory Board, consisting of interested high school students from across the country who provide leadership, feedback and blog entries. Also in 2008, a new network of AFA Teens chapters nationwide further fostered teen activism at the community level. Since, an increasing number of teens, individually or through chapters, have sponsored school/community events, volunteered and/or submitted blogs and creative contributions. AFA is aggressively seeking to recruit additional chapters. Partially in recognition of the financial stresses caregiving families face, but largely to provide a powerful creative outlet for teen caregivers, AFA introduced an annual $5,000 college scholarship in 2008; in 2010, more than 1,500 students competed.

Mountain Projects, Inc. is a non-profit that assists those in need to remain as independent as possible. The agency has served the residents of Haywood and Jackson Counties for 45 years with a reputation for integrity and compassion. Haywood Community Connections is a program of the Senior Services Department that brings nonprofits, government entities, businesses and community members together in collaboration, and is responsible for forming the Alzheimer & Dementia Workgroup.

The Alzheimer & Dementia Workgroup‘s overarching goal is to increase awareness of Alzheimer’s and other dementia-related illnesses and to advocate for increased supportive services. The workgroup was formed in response to a county-wide assessment that revealed Alzheimer’s or other related dementia to be an area of concern to seniors. The target population consists of those diagnosed and their caregivers. The workgroup has brought Safe Return and Project C.A.R.E. to Haywood County. They have incorporated an Alzheimer’s training component in every law enforcement training series across the county.

The workgroup developed a training program for clergy, lay leaders, congregation members, and faith-based volunteers, entitled Day-by-Day. The program teaches faith-based organizations how to reach out into the community and serve those diagnosed with Alzheimer’s and their caregivers.

In addition, the workgroup has served as a vehicle to initiate collaboration among various churches and nonprofits: a true systems change. The Alzheimer’s & Dementia Workgroup is comprised of representatives from the Alzheimer’s Association, Haywood Community Connections, Cooperative Extension, Area Agency on Aging and United Way.

Founded in 1929, MoMA is dedicated to being the foremost museum of modern art. MoMA manifests this commitment by establishing, preserving, and documenting a permanent collection of the highest order; presenting exhibitions and educational programs of unparalleled significance; sustaining a library, archives, and conservation laboratory; and supporting scholarship and publications of preeminent intellectual merit. MoMA welcomes 2.8 million visitors annually.

“Meet Me at MoMA” is MoMA’s free program for people with early to mid-stage Alzheimer’s and related dementias and their caregivers. Through the program, MoMA offers interactive gallery tours, led by trained educators, to individuals once each month from September through June, and to groups from day care centers and assisted living facilities upon request year-round. MoMA also offers a multi-week series of art making classes. The goal is to provide people with Alzheimer’s and their caregivers with mutually beneficial opportunities for self expression, connection, and learning that enrich their lives. Looking at, discussing, and making art require no access to short-term memory, yet provide emotional and intellectual stimulation.

Banner Alzheimer’s Institute (BAI), a division of Banner Health, was established in 2006 with a threefold mission: To end Alzheimer’s disease without losing a generation; to set a new standard of care for patients and families; and to forge a model of (biomedical) collaboration. The Memory Disorders Center (MDC) provides diagnosis, treatment and on-going care to over 200 patients per month. The Clinical Trials program offers over 20 therapeutic, imaging and quality of life studies involving over 300 patients. The Family and Community Services department provides education, support and practical assistance to every patient and family seen in the MDC or Clinical Trials. BAI collaborates extensively with the Arizona Alzheimer’s Consortium and numerous community health organizations.

The BAI Native American Outreach Program was established to increase awareness of Alzheimer’s disease and related dementias among the 22 Arizona Native American (NA) tribal members and health care providers. The program’s goals are to improve diagnosis and treatment and to assist caregivers with the daily challenges in caregiving. Scheduled outreach activities to tribes and an annual conference now in its 6th year have resulted in reaching over 1,500 family and professional caregivers. An 8-DVD featuring three NA families sharing their unique caregiving story has been widely used and distributed along with a 55-page culturally appropriate book Navigating through Memory Loss.

The program first began in 2004 with outreach efforts to the tribes located around the greater Phoenix area. Since 2008, the program has expanded throughout the state of Arizona and been reaching out to three distinct audiences: family caregivers, professional caregivers, and medical providers.

Family caregivers have been significantly impacted by the program’s outreach efforts and the annual conference. The evaluations and follow up with caregivers demonstrate that caregivers learn how to understand and manage challenging behaviors, how to utilize activities to enhance quality of life, and how to identify helpful resources (even on the reservation).

A Native American Outreach Coordinator and Administrative Assistant (both Natives) provide the bulk of staffing for the program. Twelve NA volunteers serve in advisory capacity providing direction to the program while another core group of 15 volunteers design and execute the annual conference. Outreach and education are provided by physicians, nurses and social workers from BAI. The program collaborates with individual tribes to design and execute outreach and training efforts specific to their identified needs. Additional community partners include the larger Native American community in Arizona, the Alzheimer’s Association, Native American Area Agency on Aging, and other medical providers.

The San Francisco Department of Aging and Adult Services (DAAS) funds and coordinates services to older adults, adults with disabilities and their families to maximize self-sufficiency, safety, health, and independence so persons can remain living in the community as long as possible and maintain the highest Quality of Life. DAAS facilitates the 37-member Long Term Care Coordinating Council (whose policy initiative resulted in this Strategic Planning process). DAAS also provides the Community Living Fund, In-Home Supportive Services, Adult Protective Services, Veterans Services, Intake, Referrals, Advocacy and Legal Services, Services for Frail Seniors, Vulnerable Adults and Their Families, and is the central point for Collaborations in Community Care.

An innovative 11-year Strategic Plan with recommendations for dementia care excellence to policymakers, caregivers, care-receivers, service providers and the public was the accomplishment of the Alzheimer’s/Dementia Expert Panel. Formed in November 2008, the panel was appointed by the Mayor of the City of San Francisco at the urging of the Long Term Care Coordinating Council. To kick-off the Strategic Plan and engage the larger community, a Day-Long Summit for family caregivers, providers, media and the public was held at the City Hall of San Francisco on July 8, 2009.

The Summit was organized collaboratively by DAAS, Mental Health Association, and FamilyCaregiver Alliance. The 300 attendees were family Caregivers, nontraditional informal Caregivers, professional researchers, clinicians, service providers, policymakers, media, other agency personnel including police, and persons with early dementia. The event was conducted in English with simultaneous translation in Spanish and Cantonese. The Mayor of San Francisco was excited to speak at the event and commented on the uniqueness and importance of the Strategic Action Plan. He was impressed to see 300 persons attending the Summit and engaged in moving the Plan forward.

In San Francisco, with 18% of persons over age 60, dramatic increases are expected in Alzheimer’s/Dementia prevalence by 2020. San Francisco Strategy for Excellence in DementiaCare’s goal is to avert the growing crisis in Long-Term Dementia Care and its many negative impacts.

CJE, a non-profit organization, responds to the needs of older adults and their families with a range of services including health care and rehabilitation, housing and community based services (such as in home care, home delivered meals and more).  CJE serves 16,000 clients and their families in metropolitan Chicago on an annual basis.

Culture Bus Inside and Out began in the Fall of 2002 when participants in an early stage dementia support group, hosted by Northwestern Hospital’s Cognitive Neurology Clinic, voiced a desire for more appropriate social and cultural activities than were available in traditional adult day service settings. In response, Northwestern and CJE partnered to create the Culture Bus program for people with Alzheimer’s disease and related dementias.

Culture Bus Inside and Out meets once a week for forty weeks per year. Meetings are supervised by one CJE staff person who is trained in art therapy, counseling and dementia and acts as planner and facilitator.  Three volunteers augment staffing.  Outdoor sessions last six hours and offer participants meaningful cultural experiences and socialization with visits to cultural venues, artist studios and restaurant dining. Past trips have included: a glass blowing studio, a yoga/meditation center, and the Museum of Lapidary Art. During the five hour indoor sessions, participants engage in expressive art activities and also dine together. Inside activities have included: a drumming circle, improvisational drama, poetry writing and oil painting. The paintings were exhibited in a professional gallery.

The program offers family caregivers much needed respite. In addition, family caregivers provide input and participate in group gatherings at the beginning of each session and a hands-on creative arts activity at the culmination of each season.

Comments: This program serves both persons with Alzheimer’s disease and other dementias and their caregivers and closes a gap in the care continuum by addressing the needs of persons with early stage disease. The Culture Bus not only builds community among participants, but it takes affected families out of institutions and the home setting into the community. The program is highly replicable. Northwestern University is evaluating the program and findings from the evaluation have informed the expansion of the program.

Non denominational project of the Taos Jewish Center, in collaboration with other local community based agencies, offers outreach, education, therapeutic and social activities to older adults from the rural, diverse communities of Taos Pueblo and neighboring villages.

Apoyos Para Los Cuidadores (Support for the Caregivers) offers support services to family caregivers of older adults with Alzheimer’s disease and related dementias. Participants of this program are residents of Taos County and neighboring villages including Taos Pueblo and come from rural, low income and diverse communities (predominately Latino: 58% of Taos residents are Hispanic or Latino). Apoyos provides the only caregiver support services available in this rural low-income area.

Specifically, Apoyos Para Los Cuidadores supports family caregivers by offering the following services:

• Caregiver Education and Support Groups: Psycho/educational meetings offer peer support and education on topics such as Communication and Difficult Behaviors and Dealing with Stress Caregiver Wellness.
• ArtStreams: An interactive art discussion that takes place at local museums and galleries provides caregivers with social interaction, group support, mental stimulation and respite. Other activities include yoga, exercise, Reiki and Scrabble.
• Caregiver Resource and Referrals Center: Provides caregivers with guidance, information, and referrals. Caregivers have access to telephone consultations and a caregiver’s resource library which includes books, DVD’s and printed materials on a variety of subjects.

Comments: Apoyos Para los Cuidadores is highly replicable program and bridges the worlds of serving ethnically diverse and rural seniors, serving low-income Native American, Latino and Anglo persons affected by Alzheimer’s disease and their caregivers. The program is based in a Jewish center and serves all ethnic communities.

National nonprofit advocacy and policy organization that partners and collaborates with community based organizations and labor unions to improve public policies for working families. Labor Project for Working Families provides education, resources, and technical assistance to labor unions on work and family issues including quality child care, elder care, family leave and flexible work hours. Particular focus is placed on low income working families. The Labor Project chairs and convenes the California Work and Family Coalition.

The California Work and Family Coalition comprises a network of over 25 community and advocacy organizations and strives to educate California’s working families about policies such as the Paid Family Leave law so that more family caregivers in the state are able to utilize the benefits offered by the program. The Coalition also works on mobilizing the public and influencing lawmakers to create and enhance legislation that supports California’s family caregivers in their ability to balance their work and caregiving responsibilities.

Building on the successful passage of California’s groundbreaking Paid Family Leave (PFL) law, the Coalition reconvened in 2006 under the leadership of the Labor Project for Working Families to advocate for new statewide policies that help working families with caregiving responsibilities. The Coalition promoted three bills in 2007 to expand California’s paid and unpaid family leave laws and protect employees from discrimination at work based on their familial status such as having young children or elderly parents. The bills were passed by the state legislature but vetoed by Governor Schwarzenegger.

The Coalition has built momentum around the bills by drawing new supporters and organizations into its fold. The Coalition plans to reintroduce these bills in the near future.

Following the Coalition’s lobbying efforts, the state’s Employment Development Department (EDD) in 2008 established the first ever staffed unit devoted to outreach and education about the Paid Family Leave program.

After the coalition was successful in passing the nation’s first paid family leave law in 2004, they reconvened in 2006 to work on issues around expanding the policy and doing more extensive outreach. One finding from the 2 years that the law had been in existence was that family caregivers were taking paid family leave at a much lower rate than new parents. Accordingly, many of the coalition’s expansion efforts in 2006/2007 focused on caregivers – expanding the law to more caregivers (siblings, grandparents, etc) and getting the word out to more caregivers, a vast number of whom are caring for family members with Alzheimer’s disease or related dementia.

In 2008, New Jersey passed a paid family leave law modeled after California’s law. New Jersey also built a coalition around the issue and learned from California’s experience how to successfully advocate for such a policy. One important component of both leave programs is that they rely on a small additional income tax designated to the paid family leave fund.

Comments: California’s model family leave laws are an essential support available to caregivers of persons with Alzheimer’s disease. The CA Work and Family Coalition has, over time, addressed gaps in the legislation and is now working to ensure that family caregivers, many of whom care for persons with Alzheimer’s disease, take advantage of these benefits. The policy and the Coalition’s advocacy approach have already been replicated by one state.