S.F. _____ Section 1. ALZHEIMER’S DISEASE RESPONSE STRATEGY —— 1 FINDINGS AND INTENT. 2 1. The general assembly finds all of the following based on 3 data compiled by the Alzheimer’s association: 4 a. In 2011, an estimated 5.4 million Americans were 5 diagnosed and living with Alzheimer’s disease, the most common 6 form of dementia. One in eight or 13 percent of people age 7 65 and older and 43 percent of people age 85 and older have 8 Alzheimer’s disease. With longer life expectancies and 9 increases in the number of persons reaching 65 years of age, 10 the number of new cases of Alzheimer’s disease among those 65 11 years of age and older is expected to double by 2050, when 12 someone in the United States will develop Alzheimer’s disease 13 every 33 seconds. 14 b. While the prevalence of Alzheimer’s disease is greater 15 among those over 65 years of age, younger onset Alzheimer’s 16 disease affects approximately 200,000 persons under age 65 17 nationwide. The impact can be financially devastating on the 18 individuals and their families during their working years, and 19 these individuals experience barriers to services and supports 20 that are generally designed for an older population. 21 c. The impact of Alzheimer’s disease is staggering in the 22 emotional and economic toll on individuals, their families, and 23 employers, in the increased loss of life, and in the costs of 24 providing care. 25 (1) (a) Alzheimer’s disease is a fatal condition with no 26 known means to alter the underlying course of the disease. 27 The symptoms of Alzheimer’s disease worsen over time, 28 slowly robbing individuals of their memories, autonomy, and, 29 ultimately, life. 30 (b) Caregivers experience high levels of stress and 31 negative effects on their health, employment, income, and 32 financial security. In 2010, 14.9 million family and friends 33 provided 17 billion hours of unpaid care to those with 34 Alzheimer’s and other dementias, at an estimated uncompensated 35 -1- LSB 5674SC (5) 84 pf/nh 1/ 14

S.F. _____ cost of $202.6 billion. 1 (c) In 2010, businesses lost $36.5 billion, including costs 2 of lost productivity, related to employees providing care for 3 individuals with Alzheimer’s or other dementias. 4 (2) Alzheimer’s disease is the sixth leading cause of death 5 across all ages in the United States, and the fifth leading 6 cause of death for those 65 years of age and older. While 7 the major causes of death —— stroke, prostate cancer, breast 8 cancer, heart disease, and HIV —— experienced significant 9 declines between the years 2000 and 2008, deaths attributable 10 to Alzheimer’s have increased by 66 percent. 11 (3) Average Medicare payments for people with Alzheimer’s 12 disease and other dementias are three times higher than for 13 those without the disease. Medicaid spending for seniors with 14 Alzheimer’s disease and other dementias is nine times higher 15 than for those without the disease. Nursing home admissions 16 are expected for 75 percent of those over 80 years of age 17 with Alzheimer’s disease, compared with only 4 percent of the 18 general population. 19 d. In 2011, approximately 69,000 Iowans had been diagnosed 20 with Alzheimer’s disease, with an expected increase in its 21 prevalence of 18 percent by the year 2025. Alzheimer’s disease 22 was the fifth leading cause of death for Iowans in 2009. In 23 2009, Iowans died from Alzheimer’s at the rate of 42 deaths per 24 100,000, almost double the national average of 24.7 deaths per 25 100,000. 26 e. Iowa’s challenge in confronting Alzheimer’s disease is 27 exacerbated by the state’s large and growing aging population, 28 fragmented service systems, lack of adequate disease data, and 29 growing workforce shortage. In the 2011 listening sessions 30 conducted by the Alzheimer’s association, Iowans reported 31 that the most critical issues associated with Alzheimer’s are 32 difficulty in obtaining a diagnosis, the need for training of 33 physicians and other health care providers, more funding for 34 federal research, the quality of care in facilities including 35 -2- LSB 5674SC (5) 84 pf/nh 2/ 14

S.F. _____ staffing ratios, activities, and turnover, and the availability 1 and accessibility of services. 2 (1) By 2030, according to the United States Census Bureau, 3 the population of Iowans 65 and older will constitute 22.4 4 percent of the state’s total population. 5 (2) A fragmented service system results in difficulty 6 for individuals and families in accessing information and 7 resources, eligibility for services is often complicated and 8 confusing, and while services are often developed to meet local 9 needs this local flexibility means that services and supports 10 are not consistently available across the state. 11 (3) (a) Workforce shortages and lack of training impact 12 care for persons with Alzheimer’s disease in day-to-day 13 hands-on care, primary care, and specialty care. 14 (b) The inadequate capacity and insufficient training 15 of the workforce requires enhancement of the geriatric 16 competencies of the entire workforce and increased recruitment 17 and retention of geriatric specialists and caregivers. 18 (c) It is estimated that direct care workers provide 70 to 19 80 percent of hands-on long-term care and personal assistance 20 for the elderly, persons with disabilities, and persons with 21 chronic conditions. The department of workforce development 22 projects the need for an estimated 11,000 additional direct 23 care professionals between 2008 and 2018. 24 (d) Sixty-two Iowa counties are designated as primary 25 care shortage areas. Primary care practices are the initial 26 point of diagnosis and information and ongoing care for many 27 patients and their families. Lack of primary care practices 28 delays response to patient needs and many clinicians have not 29 received the specialized or state-of-the-art training specific 30 to Alzheimer’s disease. 31 (e) Ninety Iowa counties are mental health professional 32 shortage areas. The specialty care areas most lacking in the 33 state are psychiatry and neurology, two areas most needed by 34 individuals with Alzheimer’s disease. 35 -3- LSB 5674SC (5) 84 pf/nh 3/ 14

S.F. _____ f. Lack of understanding and misperceptions of Alzheimer’s 1 disease delay diagnosis and perpetuate the pervasive social 2 stigma and feelings of isolation and denial about the disease, 3 delay early assessment and diagnosis and access to accurate 4 information and beneficial resources and services, and impede 5 efforts to improve system supports for those with Alzheimer’s. 6 As many as 50 percent of people meeting the diagnostic criteria 7 for dementia have never received a diagnosis. While there 8 is not a known cure for Alzheimer’s disease, early detection 9 affords the benefits of better management of symptoms, 10 behaviors, and coexisting conditions; facilitation of a 11 course of care; provision of training, education, and support 12 services; delay in progression of the disease and potential 13 institutionalization; and opportunity for advance planning for 14 the future. 15 g. (1) Transformation must take place in the way 16 individuals with Alzheimer’s and their families are perceived 17 and supported; in the way medical and long-term care is 18 provided and managed; and in the way communities prepare 19 for the challenge of a growing number of Iowans touched by 20 Alzheimer’s. 21 (2) Alzheimer’s disease is one of the greatest public 22 health challenges facing the current generation and requires 23 a comprehensive state response to provide persons with 24 Alzheimer’s disease, their families and caregivers, health 25 and long-term care providers, and society as a whole with a 26 strategy to confront this personally devastating and publicly 27 costly crisis. 28 2. It is the intent of the general assembly that the 29 comprehensive Alzheimer’s disease response strategy incorporate 30 all of the following principles: 31 a. Build the foundation to prepare for long-term 32 investments and comprehensive supports in the future. This 33 principle includes addressing the stigma of the disease, 34 collecting useful data, addressing workforce challenges, and 35 -4- LSB 5674SC (5) 84 pf/nh 4/ 14

S.F. _____ creating a state-level infrastructure to prepare the state for 1 the future. 2 b. Recognize that Alzheimer’s disease and related dementias 3 are best addressed with a social model of supports, rather than 4 a medical model of treatment. The social model incorporates 5 strategies such as delaying onset of the disease through 6 healthy behaviors, improving long-term health, and providing 7 psychosocial supports and education for individuals and their 8 families. 9 c. Expand partnerships between public and private entities 10 with interest or expertise in Alzheimer’s disease, and 11 efficiently utilize services within limited resources and 12 funding. Partnerships should include but are not limited 13 to federal, state, and local governments; community-based, 14 nonprofit, faith-based, health care, long-term care, and other 15 organizations; and other interested individuals and entities. 16 d. Endeavor to provide standardized and consistent access 17 to multiple, individualized services and supports. Initial 18 efforts should focus on providing access to information and 19 referral sources, and to home and community-based services. 20 e. Invest in evidence-based interventions. There are 21 proven interventions for Alzheimer’s disease, and the state 22 should use its limited resources to target proven strategies. 23 Sec. 2. NEW SECTION . 135P.1 Definitions. 24 As used in this chapter, unless the context otherwise 25 requires: 26 1. “Alzheimer’s disease” or “Alzheimer’s” means a 27 progressive, degenerative, fatal disorder that results in loss 28 of memory, loss of thinking and language skills, and behavioral 29 changes. “Alzheimer’s disease” includes related dementias 30 including vascular dementia, Parkinson’s disease, dementia with 31 Lewy bodies, frontotemporal dementia, Crutzfeldt-Jakob disease, 32 normal pressure hydrocephalus, and mixed dementia. 33 2. “Department” means the department of public health. 34 Sec. 3. NEW SECTION . 135P.2 Comprehensive Alzheimer’s 35 -5- LSB 5674SC (5) 84 pf/nh 5/ 14

S.F. _____ disease response strategy —— coordination hub, development, and 1 administration of strategy. 2 1. The department of public health shall coordinate the 3 state’s efforts to administer a comprehensive Alzheimer’s 4 disease response strategy including provision of a coordination 5 hub to facilitate, integrate, deliver, and monitor interagency 6 planning and policymaking; education, training, and public 7 awareness protocols and activities; provision of public 8 information and referral services; public and private 9 partnerships; and funding resources. 10 2. The department shall build a foundation to prepare 11 for long-term investments in and support of a comprehensive 12 strategy. In building this foundation, the department shall 13 expand partnerships between public and private entities 14 with interest or expertise in Alzheimer’s disease; emphasize 15 a social model of supports rather than a medical model of 16 treatment; increase public awareness and address the stigma of 17 the disease; develop a system of standardized and consistent 18 access to multiple, individualized, and least restrictive 19 quality services and supports; provide access to information 20 and referral sources; address workforce challenges; collect 21 and disseminate useful data; and invest in evidence-based 22 interventions. 23 3. The department shall formulate a multiyear comprehensive 24 Alzheimer’s disease response strategy to address Alzheimer’s 25 disease that includes short-term and long-term objectives. 26 Both short-term and long-term objectives should focus on 27 providing individuals with Alzheimer’s disease with the highest 28 quality care in the most efficient manner at all stages of the 29 disease and in all settings across the service and supports 30 continuum. The department shall update the initial strategy as 31 necessary to address the challenges presented with increased 32 prevalence of the disease and shall submit a progress report 33 annually in January to the governor and the general assembly. 34 4. In administering the comprehensive Alzheimer’s 35 -6- LSB 5674SC (5) 84 pf/nh 6/ 14

S.F. _____ disease response strategy, the department shall do all of the 1 following: 2 a. Infrastructure. The department shall create the 3 coordinated state infrastructure necessary to support and fund 4 Alzheimer’s disease-related activities in the state. 5 (1) The department shall establish the position of 6 Alzheimer’s coordinator within the department to work 7 in partnership with public and private entities and the 8 multidisciplinary advisory council to formulate and administer 9 the comprehensive Alzheimer’s disease response strategy, 10 to avoid duplication of public and private efforts, and 11 to leverage and efficiently utilize available funding and 12 resources. The coordinator shall do all of the following: 13 (a) In collaboration with the multidisciplinary advisory 14 council, initially formulate and subsequently update the 15 comprehensive Alzheimer’s disease response strategy. 16 (b) Coordinate a public awareness campaign with public and 17 private partners. 18 (c) Lead and coordinate data collection efforts among 19 public and private entities, and disseminate pertinent 20 information. 21 (d) Promote Alzheimer’s disease evidence-based practices, 22 including but not limited to caregiver education and training 23 and physician practice standards. 24 (e) Act as a liaison to the aging and disability resource 25 centers, area agencies on aging, state and national Alzheimer’s 26 association chapters, and other entities to ensure Alzheimer’s 27 disease is appropriately addressed statewide. 28 (f) Monitor relevant workforce projections and workforce 29 enhancement activities in coordination with the department of 30 workforce development, the health and long-term care advisory 31 council created pursuant to sections 135.163 and 135.164, and 32 other existing entities and efforts. 33 (g) Research, respond to, and coordinate funding 34 opportunities, including promotion of public-private 35 -7- LSB 5674SC (5) 84 pf/nh 7/ 14

S.F. _____ partnerships. 1 (h) Create accountability among public and private entities 2 responsible for providing services and supports for individuals 3 with Alzheimer’s disease and their families. 4 (i) Act as the state-level Alzheimer’s disease expert 5 to build and maintain relationships at the local, state, and 6 national levels. 7 (j) Provide staff support to the multidisciplinary advisory 8 council. 9 (2) The department shall create a multidisciplinary 10 advisory council to assist and advise the department and 11 the coordinator, to develop partnerships to coordinate, 12 collaborate, and support Alzheimer’s-related services and 13 programs throughout the state, and to advocate on behalf of 14 persons with Alzheimer’s and their families. The department 15 and coordinator may establish workgroups of the advisory 16 council as necessary to administer the response strategy. 17 The advisory council shall include but is not limited to 18 representation from all of the following: 19 (a) Individuals with Alzheimer’s disease and their 20 families. 21 (b) Caregivers and other consumers with an interest in 22 Alzheimer’s disease. 23 (c) Adult day services, respite, and other home and 24 community-based services. 25 (d) Primary care providers. 26 (e) Geriatricians, neurologists, and other specialty care 27 providers with expertise in Alzheimer’s disease. 28 (f) Nursing facilities, assisted living programs, and other 29 facility-based services. 30 (g) Hospitals, clinics, and other medical facilities. 31 (h) The Alzheimer’s association, Iowa chapter. 32 (i) The Iowa caregivers association. 33 (j) AARP Iowa. 34 (k) The Iowa association of area agencies on aging. 35 -8- LSB 5674SC (5) 84 pf/nh 8/ 14

S.F. _____ (l) The long-term care resident’s advocate. 1 (m) Faith-based entities. 2 (n) Community-based organizations with an interest in 3 Alzheimer’s disease. 4 (o) The department on aging. 5 (p) The department of human services. 6 (q) The department of inspections and appeals. 7 (r) The department of public safety. 8 (s) The department of workforce development. 9 b. Awareness and education. 10 (1) The department shall administer a public awareness 11 and education campaign to demystify and encourage public 12 understanding and acceptance of Alzheimer’s disease, promote 13 the importance of early detection and diagnosis, educate 14 physicians and other health professionals in best practice 15 standards for care of persons with Alzheimer’s, and disseminate 16 accurate information and promote available resources. 17 (2) The campaign shall educate the public about the true 18 prevalence of the disease, its social and economic impact 19 on families, government, and society, signs and symptoms 20 of cognitive problems in general and Alzheimer’s disease 21 specifically, how health care professionals should screen, 22 diagnose, and treat cognitive problems, services and supports 23 available, and the need for funding for research and services. 24 (3) The campaign shall target education to physicians and 25 other health care professionals to promote best practices in 26 diagnosis and referral, to increase early intervention and 27 diagnosis, and to provide more immediate access to information 28 and support for newly diagnosed individuals and their families. 29 (a) The campaign shall explore, endorse, and disseminate 30 dementia-specific curriculum and training programs tailored to 31 primary care providers to strengthen the role of primary care 32 providers in assessing, treating, and supporting individuals 33 with Alzheimer’s disease. 34 (b) The department may utilize existing professionally 35 -9- LSB 5674SC (5) 84 pf/nh 9/ 14

S.F. _____ developed performance measures, such as the dementia 1 performance measurement set developed by the physician 2 consortium for performance improvement, in assisting physicians 3 and other health care professionals in improving the quality of 4 care for persons with Alzheimer’s disease. Such performance 5 measures may include but are not limited to activities such 6 as performing cognitive assessments, determining functional 7 status, managing symptoms, conducting palliative care 8 counseling and advance care planning, and providing caregiver 9 education and support. 10 c. Providing information and resources to persons with 11 Alzheimer’s and their families. The department shall create 12 statewide partnerships to utilize and expand existing 13 information and referral, education, care planning, and care 14 coordination services to promote consumer access to quality 15 information and services and to provide guidance and support 16 to individuals with Alzheimer’s and their families throughout 17 the continuum of the disease. Partners may include but are not 18 limited to the Alzheimer’s association, Iowa chapter, and the 19 aging and disability resource centers. The department shall 20 ensure that any information or referral sources utilized are 21 dementia-capable and provide accurate, reliable information. 22 The efforts shall include educating community networks about 23 Alzheimer’s disease information and referral sources. The 24 department shall integrate the participation of appropriate 25 sectors of the community including but not limited to health 26 care, public safety, legal system, and others in addressing the 27 needs of and providing a coordinated network of support for 28 individuals with Alzheimer’s and their families. 29 d. Addressing workforce challenges. The department 30 shall endeavor to ensure that individuals with Alzheimer’s 31 disease receive appropriate, quality care and treatment by 32 professionals and caregivers who are Alzheimer’s disease 33 proficient and competency-based trained. The department 34 shall work to expand and enhance the available and adequately 35 -10- LSB 5674SC (5) 84 pf/nh 10/ 14

S.F. _____ educated and trained workforce necessary to address the needs 1 of people with Alzheimer’s disease. The department shall 2 define the elements of quality Alzheimer’s care, determine 3 the best indicators to measure whether quality care is being 4 delivered, and embed these measures throughout every level of 5 the medical and long-term care delivery systems to drive better 6 practice. 7 (1) The department shall invest in state-level efforts to 8 improve recruitment and retention of targeted professionals, 9 including but not limited to psychiatrists, gerontologists, 10 neurologists, and direct care professionals. 11 (2) The department shall coordinate with other state 12 efforts to align and implement curriculum recommendations and 13 dementia training requirements for direct care professionals 14 and to expand application of a curriculum to other 15 professionals and service providers who interact with persons 16 with Alzheimer’s disease. The department shall specifically 17 incorporate into the goal of addressing workforce challenges, 18 the directives relating to services, training, education, and 19 public awareness for providers of services and supports as 20 provided pursuant to section 231.62, Code Supplement 2011, to 21 create dementia care protocols for facilities, agencies, and 22 individuals that provide services and supports to individuals 23 with Alzheimer’s disease. 24 e. Increasing access to quality services. The department 25 shall assess and identify gaps in the supply and adequacy 26 of services and supports across the continuum of home and 27 community-based, residential, medical, and social services and 28 supports to address the needs of individuals with Alzheimer’s 29 and their families. 30 (1) The department shall promote coordinated, 31 interdisciplinary, team-based, and person-centered care across 32 the spectrum of medical, social, home and community-based, and 33 long-term care to address the numerous facets of Alzheimer’s 34 disease and to ease transitions for individuals in the 35 -11- LSB 5674SC (5) 84 pf/nh 11/ 14

S.F. _____ progression of the disease. 1 (2) In developing the system of care, the department 2 shall use and promote the availability of concepts and 3 characteristics such as the health home and preventive care; 4 promote and expand the availability of home and community-based 5 services and supports including but not limited to respite and 6 adult day services; expand the utilization of technologies such 7 as telemedicine that increase access to services for persons 8 with Alzheimer’s, especially in rural and underserved areas 9 of the state; and promote improvements in the capacity of 10 residential levels of care to provide dementia-capable quality 11 care for individuals with Alzheimer’s disease. 12 (3) The department shall promote equitable access 13 to affordable, necessary services and supports that are 14 universally available, and delivered by dementia-capable 15 providers. 16 f. Improving Alzheimer’s disease data collection in the 17 state. The department shall increase surveillance of the 18 prevalence of Alzheimer’s disease and its social, economic, and 19 personal impact in the state to develop a source of reliable, 20 quantifiable data. 21 (1) The department shall review, and to the extent possible, 22 utilize existing assessment tools to promote common data 23 elements and uniform collection of data to accurately capture 24 relevant data on the population of persons with Alzheimer’s 25 disease in the state. Data collection shall focus on enabling 26 better identification of Iowans with Alzheimer’s disease, 27 planning for services and efficient use of funding, and 28 supporting research on the disease. 29 (2) The department shall also collect data to identify the 30 unique needs and issues of persons with Alzheimer’s disease who 31 experience younger onset, and develop a plan to address the 32 needs of this population. 33 (3) The department shall specifically incorporate the 34 analysis of service utilization and future service needs as 35 -12- LSB 5674SC (5) 84 pf/nh 12/ 14

S.F. _____ directed in section 135.171, Code 2011. 1 (4) The department shall act as a centralized point of 2 data collection and serve as a clearinghouse of information 3 to assist individuals with Alzheimer’s, their families, 4 caregivers, policymakers, and others with interest in 5 Alzheimer’s disease. 6 Sec. 4. REPEAL. Sections 135.171 and 231.62, Code and Code 7 Supplement 2011, are repealed. 8 EXPLANATION 9 This bill relates to the state’s response strategy for 10 Alzheimer’s disease. 11 The bill provides findings and the intent of the general 12 assembly regarding Alzheimer’s disease. The findings include 13 national prevalence data; data regarding the individual, 14 social, and economic impact of Alzheimer’s; and data specific 15 to Alzheimer’s disease in this state. 16 The bill provides that it is the intent of the general 17 assembly that the comprehensive Alzheimer’s disease response 18 strategy incorporate the principles of building the foundation 19 to prepare for long-term investments and comprehensive supports 20 in the future; recognize that Alzheimer’s disease and related 21 dementias are best addressed with a social model of supports, 22 rather than a medical model of treatment; expand partnerships 23 between public and private entities with interest or expertise 24 in Alzheimer’s disease, and efficiently utilize services within 25 limited resources and funding; endeavor to provide standardized 26 and consistent access to multiple, individualized services and 27 supports; and invest in evidence-based interventions. 28 The bill creates a new Code chapter, Code chapter 135P, 29 to provide for a comprehensive Alzheimer’s disease response 30 strategy. The bill provides a definition of Alzheimer’s 31 disease which includes related dementias. 32 The bill directs the department of public health (DPH) to 33 coordinate the state’s efforts to administer a comprehensive 34 Alzheimer’s disease response strategy and to build a foundation 35 -13- LSB 5674SC (5) 84 pf/nh 13/ 14

S.F. _____ to prepare for long-term investments in and support of a 1 comprehensive strategy. The department is directed to 2 formulate a multiyear comprehensive Alzheimer’s disease 3 response strategy with short-term and long-term objectives, 4 to update the strategy as necessary, and to submit a progress 5 report annually in January to the governor and the general 6 assembly. 7 The elements of the comprehensive Alzheimer’s disease 8 response strategy relate to infrastructure, which includes 9 the establishment within the department of the position of 10 Alzheimer’s coordinator and creation of a multidisciplinary 11 advisory council; increased awareness and education of the 12 public and health care providers; provision of information 13 and resources to persons with Alzheimer’s and their families; 14 addressing workforce challenges; increasing access to quality 15 services across the continuum; and improving data collection on 16 Alzheimer’s in the state. 17 The bill repeals the Code section relating to a directive 18 to DPH to analyze Iowa’s population to determine the existing 19 service utilization and future service needs of persons with 20 Alzheimer’s disease and similar forms of irreversible dementia 21 (Code section 135.171) and the Code section relating to a 22 directive to the department on aging to review trends and 23 initiatives to address the long-term living needs of Iowans 24 with Alzheimer’s disease and similar forms of irreversible 25 dementia, and to expand and improve training and education 26 of persons who regularly deal with persons with Alzheimer’s 27 disease and similar forms of irreversible dementia (Code 28 section 231.62). Both of these directives are instead 29 incorporated into the duties of DPH under the new Code chapter. 30 -14- LSB 5674SC (5) 84 pf/nh 14/ 14