Dementia Care Collaborative

Dignity based care Empowerment of the patients and the community

Memory and Aging Center and Behavioral Health Institute Loma Linda University Dr. Dean Sherzai (Director of Memory and Aging Center) Dr. Harvey Elder (Professor of Internal Medicine) Dr. Randall Walker (Director Counseling & Family Sciences Clinic) Carrie Eskay (Clinical Educator, Department of Social Work & Social Ecology Program Director, M.S. in Gerontology) Director of adult day care services Occupational therapy (Allied health) Betty Winslow (Nursing) Pharmacy

Table of Contents

Background
The elderly population of the United States, those greater than 65 years of age, is expected to double from approximately 35 million today to more than 70 million by 2030. In California alone the elderly age group will increase 112 percent from 1990 to 2020. There are over three million dementia patients in nursing homes with over 300,000 in California alone at a cost of over $180 billion (refs) . This precipitous rise in the aging population makes prevention and treatment of dementia along with other chronic diseases, a priority. Separately considering the elderly population isolates their consequences from causative factors, such as lifestyle, social and economic decisions, and events that occurred earlier in their lives. Their financial position, the quality of their housing, and their longterm health represent the culmination of decades worth of events, past behaviors, and decisions (need to include genetic endowments). These actions and choices further complicate the challenges faced by individuals and families dealing with dementia. More and more it is becoming evident that dementia care collaboratives are critical parts of any effort to understand the magnitude and specifics of dement ia problems, to provide treatment,

and to reach out to the aging population in a given community . Many such centers have helped those suffering from memory and cognitive disorders have peace of mind because they can know that they will not need to tread the road ahead alone. It should be a core function of dementia care collaboratives to help separate dementia and associated diseases from prejudice and stigma while defining the needs and opportunities in dementia care for their constituent communities. They should also assist in the provision of preventive therapy and, when available, specific treatment for dementia. In addition, the complicated physical and psychosocial aspects of dementia demand that these efforts need to organize and provide support systems for those with dementia and for their care partners. Studies show an integrated and coordinated approach to early detection combined with prevention, treatment, and support to the patient and care partners can significantly delay transition to nursing homes reducing associated costs by billions of dollars to the family and the State . Despite these observations there are currently no centers coordinating provision of the multiple facets of care for this segment of the population as it begins to experience memory and cognitive deficits. We are in the process of establishing such a center at Loma Linda University in a collaborative effort between the Department of Neurology and the Behavioral Health Institute.
The collaboration is being designed

to

better understand the needs and preserve the dignity of the person We

with dementia while supporting the family and care providers.

propose a model for the this innovative collaboration between different aspects of academia and the community at our Loma Linda University center that will also focus the burden of dementia care onto the community while meeting unique challenges faced by members of those minority communities which may be at higher risk for development of memory and cognitive deficits. Through a comprehensive and integrated approach, the interdisciplinary center will provide ongoing support and connections to assist individuals and families to overcome obstacles and challenges often associated with dementia and Alzheimers. Faith communities will be integral to service provision. (Note partnership with Tim Gillespie and faith leaders/meetings/official name? Note the Catholic church 93 diocese) behavioral health (BHI) role, what is being done, history of, etc. Specifics (group) etc. BHI and psychology dept has been conducting these support groups for x number of years and working with neurology in connecting with the patients. BHI is supporting this. Speak to commitment. Neurology, BHI, Psychology, and Community. county demographics, regional problems. Loma Linda University and Medical Center (?) Efforts to Date

Loma Linda has led the way in developing programs and services designed to meet the needs of the dementia community. The urgency of this need has fostered enhanced action in the past year. Specifics: Neurologist and Memory Center Director Dr. Dean Sherzai has presented over 70 times in the community (this year?). In November, a series of four community forums was held targeting the needs of those with dementia and their caregivers. The event was titled Alzheimers: Communities of Care. Monthly meetings are held with faith communities in which Loma Linda Medicine and Behavioral Health hold collaborative roles. Catholic Church with 93 dioceses. An inter-professional team of physicians and behavioral health professionals has met weekly over the past 18 months discussing and developing programs and services to the dementia community and their families. One outcome was the aforementioned Alzheimers: Communities of Care event. The LLU Behavioral Health Institute (BHI) offers two support groups for those caring for a loved one with dementia or Alzheimers. Each targets a specific populationone is offered for the spouses who are caregivers, and the second for children, grandchildren, and friends who

are caregivers. Care Partners Support Group provide a supportive and compassionate place where caregiverscare partnerscan come to received support, education, and companionship. These groups are co-facilitated by graduate and doctoral students in the behavioral health disciplines. These include social work, psychology, and marriage and family therapy. These students and others who are involved with developing BHI services for caregivers and the dementia community are known as the Care Partner Team. They meet weekly to discuss the needs of the groups and to educate each other. The BHI has awarded seed money to develop a volunteer training program(Randall, can you talk about this if you get to it before I do?) What do we envision doing in the churches? ADHC Discuss soft landing.

San Bernardino County and Riverside Demographics

Loma Linda University is uniquely located in a region characterized by one of the largest and most diverse populations in southern California. Another unique feature of our population is its very high proportion of elderly people, maybe one of the highest proportions in America. As age is the most important risk factor for development of dementia, we assume that this area will be one of the three California areas most afflicted by cognitive disorders of aging. In addition, limited regional economic resources and social support systems combined with limited cultural responses to dementia may significantly contribute to a rapidly developing social disaster. Studies have shown a coordinated approach to early detection, treatment, and support of the at risk population and their care providers can significantly delay transition to nursing homes and subsequently reduce associated costs to the family and the State by billions of dollars. Despite the overwhelming need, no centers exist which coordinate provision of care for this segment of the population, which is beginning to experience memory

and cognitive deficits . In 2004 the population of the region, within 30 minutes drive, was 1,410,003, and the population within a 60 minute drive was 4,320,042. The population is expected to grow and by 2020 the population, within a 30 minute drive, is expected to grow to more than 12 million and within 60 minute drive 25 million. The cost of care for the elderly in the region will increase exponentially. State and County Population Projections by Major Age Group: Numeric and Percent Change 2010 to 2060 by Age Group

Source: State of California, Department of Finance, Report P-1 (Age): State and County Population

Projections by Major Age Groups, 2010-2060. Sacramento, California, January 2013.

Preschool School Age Age (5-17 (0-4 years) years) College Age (18-24 years) Working Age (25-64 years) Young Retirees (65-74 years) Mature Retirees (75-84 years) Seniors (85 or more years)

State/Co Total unty (All ages) Numer ic 15,384, California 201 2,024,9 Riverside 30

Perc Nume Perc Nume Perc Nume Perc Nume Perc Nume Perc Nume Perc Nume Perce ent ric ent ric ent ric ent ric ent ric ent ric ent ric nt 453,95 1,023,0 549,73 5,251,2 3,102,7 2,758,4 2,245,0 41% 18% 15% 14% 26% 135% 201% 370% 7 27 8 53 04 59 63 172,35 124,29 9617,7 295,76 218,93 172,17 92% 79,684 49% 38% 54% 89% 210% 255% 531% 0 3 30 1 7 5

San 1,394,5 614,01 249,27 185,91 151,27 68% 40,838 26% 94,935 22% 58,288 25% 59% 239% 325% 718% Bernardino 24 2 3 0 0

Changes in per capita costs due to aging: 2010 to 2050

County 2010 Elderly Population (65+) 259, 260 182, 667 2010 Healthcare cost due to aging $3,143 x 259, 260 = $814, 854, 180 $3,143 x 182, 667 = $574, 122, 381 2050 Elderly Population (65+) 780, 517 662, 697 2050 Healthcare cost due to aging $3,543 x 780, 517 = $2, 765, 371, 731 $3,543 x 662, 697 = $2, 347, 935, 471 2010-2050 Cost Increases $1, 950, 517, 551 $1, 773, 813, 090 71% 76%

Riverside San Bernardino

Sources: Population Projections: State of California, Department of Finance, Report P-1 (Age): State and County Population Projections by Major Age Groups, 2010-2060. Sacramento, California, January 2013. Projected Per Capita Healthcare Costs Due to Aging: Martini EM, Garrett N, Lindquist T, Isham GJ. The boomers are coming: a total cost of care model of the impact of population aging on health care costs in the United States by Major Practice Category. Health

Serv Res. 2007; 42(1 Pt 1):20118.

Proposed Program Description

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Normal aging or healthy aging is a widely used term to describe the degenerative changes that occur in the absence of recognized disease. Even though a certain degree of cognitive decline has long been recognized as a normal part of aging, The health care community has begun to recognize that cognitive decline of any cause affects multiple aspects of life. Thus there is growing interest towards better detection of cognitive decline and early interventions for those at high risk (vascular disease, stroke risk, poor nutrition, chronic diseases, polypharmacy, sedentary lifestyle, social and cognitive isolation, etc), as well as in those populations, such as the Hispanic population who are at much higher risk yet have had much lower diagnosis. The effects of cognitive impairment are far-reaching and include a decline in the quality of life, considerable emotional suffering of patients, their families and loved ones. In addition, there is a significant financial burden on the health care system. These monumental consequences on the patients and their families will be much greater if the diagnosis is made later after the patient has either already made poor decisions with regards to their own physical and/or socioeconomic health, or can no longer make informed decisions regarding body or fiscal health causing tremendous anxiety and potential loss to them. Yet as great as the impact is on the patient, the impact of the dementias on the family and others who love them and assist in their care is just as great and sometimes greater. In fact one study has shown that care givers of those suffering from dementia die 60% faster than the patients themselves. This stress, physical, psychosocial and financial can result in a cascade of events leading to physical or emotional breakdown, abusive behaviors or horrible living conditions at the

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end of life. That is to say, the major location for the problems caused by dementia occur in the home and in the community. Treating dementia patients of whatever cause in the hospital or clinic misses the dominant social consequences. A tremendous social calamity is rapidly approaching as the number of those suffering from dementia rapidly increases in our communities, communities that lack the knowledge and training to care for them. We have not started to address the home and community consequences of the expanding population with dementia. The only way to address these issues is to do so in the community, and in patients homes. Community-based approach The vast majority of people with dementia live at home, and more importantly, prefer to live at home. The greatest proportion of those with dementia have never been formally diagnosed. These people are unknown to the health and social care services at a time in their dementia history when early diagnosis is critical to slow progress and, more importantly, at a stage when they can make appropriate decisions for themselves. Many communities are reluctant to diagnose dementia even when the symptoms are obvious because of the negative attitudes and stigma often associated with the disease within families and communities. This is especially true in minority communities, where dementia has been shown to be even more prevalent (refs). In addition, erroneous, prevailing attitudes that

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nothing can be done for patients to alter the relentless progression of dementia causes reluctance to make early diagnoses hoping to avoid false expectations on behalf of patients or increase demands on existing, but scarce community care resources. The increased numbers of elderly in the coming decades will exaggerate the fiscal and social burden of dementia to health care systems. The multiple aspects of cost requires additional focus. Key strategies should address prioritizing dementia care. These include: Early intervention with education and training of patient, patients family and community Enhanced community based services for people with dementia and their caregivers, including early recognition of dementia and community-based support Co-ordination and integration of multi-disciplinary care provision. Doctors, public health nurses, nutritionists, physical therapists, faith community members, daycare facilities, and behavioral health workers are key to mobilizing and educating communities and providing support, as well as challenging prevalent prejudices toward those with dementia. Information, education, and emotional support are critical for people with dementia and their care givers. Education with emotional support can be especially important in the early stages to

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facilitate the participation of the person with dementia in the decisionmaking process, when they are still capable of making informed decisions. These are also critical for their care partners. In 2008, we established a Memory and Aging Center within the Department of Neurology in Loma Linda University. Our goal is to maintain a strong, coordinated relationship between the health/medical community (Neurology, PMNR, Orthopedics, Behavioral Institute, social work, nutrition, and physical therapy) as well as the communities where elderly subjects live and their faith communities. With this Center we provide diagnoses and therapy as well as advice on how to slow the progress of dementia and to face the challenges ahead. With this Center we are mobilizing and coordinating community resources as we provide sustained outreach and support to the aging community. At this time, it is relatively difficult for those who seek to break through the barriers of ignorance, shame, fear, prejudice and stigma to learn about diagnostic and therapeutic services and potential support structures. Centers like th e Memory and Aging Center need to serve not only as diagnostic and therapy centers but must also reach into communities with resources and education combined with relevant counseling and training for community leaders and dementia care facilities in churches and seniors centers. The Memory and Aging

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Center is reaching out to people with dementia and their families not just medically but also at a personal level. Concurrently, the Center provides a link to both specialist and community-based services through referral and advocacy. The Center also serves to increase public awareness and understanding of the needs of people with dementia and their care-givers. Through the Center, we are actively planning and working to provide a supportive and comprehensive system of service delivery, which will offer peace of mind to our community and protect the dignity of affected patients -- so both community resources and patients know that they will not need to provide supportive care alone.. It is the function of centers such as ours to help define the disease, provide a timely diagnosis, update-to-date treatment, provide a framework for community-based support systems, and mitigate the health and social burdens to the community.

Summary of the objectives for community-based Memory and Aging Center: Provide an interdisciplinary setting for neurologists to work side-byside with mid-level practitioners, such as a mental health professional, a neuropsychologist, and a community coordinator. Provide community education and awareness of the risk factors for dementia, stroke, and other neurodegenerative diseases that lead to cognitive impairment.

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Identifiy people at risk of developing these diseases. Develop a clinical database to assess the impact of different cultures and minorities on disease identification, treatment, and course to identify effective means of communicating difficult information across ethnic and cultural barriers

Identify and coordinate plans for currently available resources. Determine appropriate discharge from active treatment while transiting to ongoing community support for both clients and their families.

Create a network of regional screening clinics at locations convenient for those at highest risk to develop dementia where midlevel practitioners or other non-physicians can administer questionnaires and perform focused testing in patients with suspected cognitive decline.

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July 27, y 18:25 A7/P7

ceskay

July 27, y 18:25 A7/P7

This is very similar to what we are talking about but might want to generalize instead of social workers (though I am pro-social worker involvement) mental health professionals or similar and interns/trainees.

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Could this all be worded more in terms of deliverables targeting the intended recipients of the services? So that it reads:

Improve early identification of people at risk for developing memory and cognitive diseases by:

Providing at risk individuals and their families easy access to comprehensive assessment and treatment by an interdisciplinary team - neurologists working side-by-side with mental health professionals and community coordinators.

Educating and increasing community awareness of associated risk factors for dementia, stroke, and other neurodegenerative diseases leading to cognitive impairment through public workshops and lectures.

Developing and maintaining a clinical database to assess the impact of culture and minority status on disease identification, treatment, and course. This data base will permit identifying future, more effective means for communicating difficult information across ethnic and cultural barriers

Identifying and coordinating plans for currently available resources. Creating a network of regional screening clinics at locations convenient for those at highest risk to develop dementia where

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members of the interdisciplinary team can administer questionnaires and perform focused testing on individuals with suspected cognitive decline. Facilitating seamless transitions to positive, ongoing community supports for both clients and their families at discharge from active treatment.

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Budget
A preliminary budget for the main Memory and Aging clinic is based on:

Total Costs

Category Personnel Marketing Educational Materials

Total

$175,000 $15,000 $15,000

TOTAL

$205,000

Personnel

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Category

FTE

Work months: Year 1

Total

Nurse Practitioner (Bilingual)

50%

12

Reimbursements through insurance Reimbursements through insurance

Neuropsychologist

50%

12

Social Worker/ Family planner

50%

12

$50,000

Community Coordinator

50%

12

$25,000

Health Coordinators in 5 Faith communities 25%

$50,000

Physician time for education

20%

12

$50,000

TOTAL

$175,000

* The community coordinator is responsible arranges educational sessions with select regions, fosters a collaborative relationship with surrounding communities, and assists the social worker with outpatient services.

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Marketing

Category Flyers/ radio Pamphlets Website, & Internet

Item

Cost/ Month/Item

Total

3,000 3,000
Website, Adverts, Blog, Podcast

$1.00 $1.00

$3,500 $3,000 -$8,500

TOTAL

$15,000

* All marketing materials are in English and Spanish

Education materials

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Category Items for the main clinic Items for community outreach

Item

Cost/ Month/Item

Total

2,500 5,000

$1.50 $1.50 $1.50

$3,750 $7,500 $3,750

Items for the screening 2,500 clinic

TOTAL

$15,000

* All educational materials are in English and Spanish

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