Planning for our Future: A REPORT ON ALZHEIMER’S DISEASE/ DEMENTIA IN OUR COMMUNITY
FROM THE CHAIR OF THE ALZHEIMER’S/DEMENTIA TASK FORCE (NAKUM*)
Kyla Epstein Schneider
Alzheimer’s disease and dementia are about people. My mother. Your father. Her brother. His wife. As I’ve engaged in the exploration and research of this disease, its presence in the Cleveland Jewish community, our many programs and services created to address patients, their families and caregivers, I am grateful for the tremendous candor and brave forthrightness of hundreds of people who have taken the time to meet, talk, and share their journeys. They are children, doctors, spouses, paid and unpaid caregivers, social workers, grandchildren, clergy, public policy professionals, lawyers, geriatricians, researchers - each touched by this disease – each struggling to make sense out of care, support, and planning. Their stories – our stories - have informed and shaped our work. It is essential to acknowledge both the enormous number of individuals and families affected by Alzheimer’s disease and dementia, as well as the depth and magnitude of its emotional, physical, financial and social toll on individuals, families and our entire community. I’m not sure that any of us involved in the Nakum: Alzheimer’s/Dementia Task Force, both professionals and laity, understood what an enormous job this would be – or how emotionally powerful and lasting many of our encounters would be. I owe a debt of gratitude to the fine, professional executives of our many community agencies who committed themselves to this process, brought their passion, personnel and programs with them and who engaged wholly in this effort, alongside one another, for the greater good. As well, my thanks go out to the diverse group of laypeople on this committee who brought heart, critical thinking, good sense and a generosity of spirit unparalleled. I have never chaired a committee with a better attendance track record or engaged participation. Last, but certainly not least, a shout-out to Shelley Fishbach and Melanie Halvorson who staffed this group and our process with finesse, diligence and commitment to integrity. All told, a finer group of people, working to make significant impact in the complicated world of dementia and aging, one could not find. As for me, this work was challenging – and generative. As a daughter with a mother who has suffered with Alzheimer’s disease for almost 18 years, I wasn’t sure I could bear the constant barrage of information or emotion this engagement would bring. But I present this document with a sense of real direction and hope. The recommendations chart pathways that can and should directly impact the lives of hundreds of families in the Cleveland Jewish community for the better over the course of the next two decades. These initiatives can help us change the landscape of how we think about dementia, our notions of living and aging well, our plans for how to plan, and the mechanisms and processes that will be necessary to provide efficient, compassionate care and support as our community continues to age. Alzheimer’s disease and dementia are about people. Now, it’s about you and me. . ולא אתה בן חורין להבטל ממנה,לא עליך המלאכה לגמור It is not incumbent on us to finish this work, but we may not desist from it. (Pirkei Avot 2:21) Kyla Epstein Schneider
Chair, Nakum: Alzheimer’s/ Dementia Task Force 2
*Nakum, the name of this Task Force, is a play on the verse from Leviticus: .והדרת פני זקן, ( ”מפני שיבה תקוםMipnay sayvah takum, v’hadartah p’nai zaken)…You shall rise up (stand) before the elderly, and honor the face of the old person.” Nakum expresses that this Task Force will stand up. In standing up, we are articulating a forward-thinking stance to anticipate the growing, complicated needs of our senior population. PLANNING FOR OUR FUTURE
BACKGRO U N D Following the national trend, in the next two decades, there will be dramatic growth in the population of older adults in Jewish Cleveland. The Jewish Federation of Cleveland’s 2011 Greater Cleveland Jewish Population Study estimated that 19% of Cleveland’s Jewish population is 65 years and older, and 29% are aged 50 to 64. We need to be prepared as this population ages and their need for services increases. Federation’s 2013 Older Adult Study found that individuals with Alzheimer’s disease and other dementias and their family caregivers are among the most vulnerable groups in Jewish Cleveland. J E W I S H F E D E R AT I O N O F C L E V E L A N D
3
OU R COM M I T M E N T The Cleveland Jewish community has continually committed itself to the highest level of care and attention to those in need. Our elderly will have growing needs in the coming decades, particularly in the realm of dementia care. The Jewish community pledges to honor them by maintaining, developing, and funding services and programs that will enable them to live, and to live well, with self-worth and dignity. Federation established the Nakum: Alzheimer’s/Dementia Task Force to identify unmet needs of individuals with dementia and their family members and to develop recommendations to address those needs for the next 10-20 years. The Task Force embodied the Jewish value of standing up for older adults and being proactive in caring for them by uncovering the growing, complicated needs of our senior population and the best ways to respond to those needs. Task Force members and staff conducted 75 face-to-face interviews with family members, physicians, paid caregivers, elder law experts, and clergy, in addition to meetings with leadership from Jewish Family Service Association, Mandel JCC, Menorah Park, Montefiore and the Alzheimer’s Association. 4
PLANNING FOR OUR FUTURE
RE AL I T I E S 1. T he population affected by Alzheimer’s disease and other dementias, and associated expenses, will increase dramatically in the next 20 years. 2. About half of individuals with dementia have not been formally diagnosed. 3. The medical community has uncovered preclinical Alzheimer’s Disease which indicates that the disease is present in the body 15-20 years prior to the onset of visible symptoms. This period of time represents a window of opportunity to intervene. 4. J ewish Cleveland is rich with services and resources for individuals with dementia and their families, but the offerings are disjointed and difficult to navigate (regardless of one’s means), especially during times of crisis. 5. F amilies affected by dementia often are not ready to seek assistance until the disease has progressed to a severe state.
A R E AS O F AC T I O N & I MPAC T NAVIGATION More effective and efficient guidance and access to programs and services will promote the best care possible for individuals with dementia and will reduce family caregivers’ stress.
ASSESSMENT & DIAGNOSIS Increased and earlier diagnosis of dementia will allow for more deliberate planning which leads to better outcomes.
CARE FOR FAMILIES & UNPAID CAREGIVERS A thoughtful, deliberate system of education, training, and support will reduce family caregivers’ stress and promote their emotional, physical, and financial health.
COMMUNITY AWARENESS & WELLNESS Helping individuals plan ahead for aging, promoting brain health and early diagnosis of dementia, and reducing the stigma and social isolation associated with dementia can improve the lives of older adults and their loved ones.
J E W I S H F E D E R AT I O N O F C L E V E L A N D
CARE FOR INDIVIDUALS The establishment of collaborative, integrated and innovative patient-centered care will enable individuals with dementia to live well throughout the process of cognitive decline.
LEGISLATIVE ADVOCACY & RESEARCH Communal advocacy for system-level legislative and research breakthroughs is crucial, because they will be the only vehicles for impacting the trajectory of Alzheimer’s disease. 5
RECO MM E N DAT I O N S The Task Force developed a number of wide-reaching recommendations to address the unmet needs it identified and to shift the culture to living well with Alzheimer’s disease and other dementias. Federation is now in the process of planning for implementation of the top recommendations listed below. For a complete list of recommendations, contact jhonigman@jcfcleve.org.
COMMUNITY AWARENESS & WELLNESS Develop a community-wide initiative that makes it possible to live well with dementia by: - Reducing the stigma of Alzheimer’s disease and dementia and inspiring a community more inclusive of those affected by dementia. - Addressing the value of early detection and diagnosis. - Increasing the percentage of community members living well with dementia by getting people to walk in the door for services earlier and fully utilize the existing innovative, interdisciplinary, high quality services. - Promoting the role of spiritual, physical and social wellness to brain health and aging. - Encouraging community members to plan ahead for all aspects of aging including making end-of-life wishes known.
NAVIGATION
FAMILY CAREGIVER SUPPORT
Create a Jewish dementia care navigation system that helps families find care options and make decisions throughout the progression of the disease. Staff will serve as an on-going resource and source of support for families as new challenges arise.
Create a comprehensive family caregiver support system that: - Provides dementia-specific education for engagement with a loved one throughout the trajectory of the disease. -E xtends support through social groups, wellness, and self-care. - Expands respite care resources.
6
P L A N N I N G F O R O U R F U T U R E
FAST FAC TS :
6 4,000 $236 TH
BILLION
$150 MILLION
27% $350
Alzheimer’s disease is the 6th leading cause of death in America, and is the only cause of death that cannot be prevented, slowed or cured.
In 2016: There are an estimated 4,000 members of the Cleveland Jewish community over age 65 with Alzheimer’s or other dementias (roughly 2,250 with Alzheimer’s, and about 1,750 with other types of dementia).
Alzheimer’s disease is the most expensive disease in America, costing more than heart disease or cancer. In 2016, caring for people with Alzheimer’s and other dementias will cost the U.S. an estimated $236 billion. Cumulatively, between now and 2050, it will cost $19.9 trillion, with nearly half of the cost being borne by Medicare.
In 2016: The current direct cost for caring for Jewish Clevelanders with dementia is estimated at $150 million per year, with $30 million coming from out-of-pocket spending. (Our cost estimates reflect care needed for the full range of individuals with dementia from those with no out-of-pocket expenses to those paying for 24/7 private duty care.)
By 2035: As the population 85 and older increases, the number of individuals in Jewish Cleveland with dementia is expected to increase by 27%.
By 2035: A projected $350 million will be spent annually on individuals with Alzheimer’s disease or other dementias in Jewish Cleveland, an amount nearly 250% of the current level of spending.
MILLION
J E W I S H F E D E R AT I O N O F C L E V E L A N D
7
N A KU M TAS K FO R C E Kyla Epstein Schneider, Chair Hedy Adler Susie Bichsel, Jewish Family Service Association Ken Bravo Rabbi Akiva Feinstein, Montefiore and Jewish Federation of Cleveland Lisa Goodlow, Jewish Family Service Association Bruce Goodman Penny Greenberger Rochelle Gross Lisa Michel Kim Pesses Gil Rubanenko, Mandel Jewish Community Center Sheri Sax, Jewish Family Service Association Diane Scholnick Mary Ann Shamis Marc Alan Silverstein Dan Steiger Seth Vilensky, Montefiore Adam Wieder Ross Wilkoff, Menorah Park Judy Willensky Idelle Wolf Federation Staff: Shelley Fishbach, Assistant Managing Director, Community Planning & Allocations Melanie Halvorson, Director of Community Services Erika Rudin-Luria, Senior Vice President, Organizational Development
FOR MORE INFORMATION Contact Jayme Honigman at jhonigman@jcfcleve.org or 216.593.2823 to find out how you can support the implementation of these recommendations.
The Jack, Joseph and Morton Mandel Building 25701 Science Park Drive, Cleveland, Ohio 44122 216-593-2900 info@jcfcleve.org www.jewishcleveland.org