S1033 2R

An Act establishing a permanent Alzheimer’s and Dementia Care Long-Term ²[Planning] Advisory² Commission, supplementing Title 26 of the Revised Statutes, and repealing P.L.2011, c.76.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

²[1. The Legislature finds and declares that:

a. Alzheimer’s disease is a progressive, degenerative, and irreversible neurological disease. It is one of a group of dementias and related disorders that develop over a period of years, are of an undetermined origin, and are characterized by a progressive decline in intellectual or cognitive functioning that begins with gradual short-term memory loss and progresses to include a deterioration in all areas of cognition and executive functioning, such as analytical ability and reasoning, language and communication, perception and judgment, and personality, and that may eventually result in the inability to perform physical functions, including, but not limited to, the activities of daily life such as walking, dressing, feeding, and bathing.

b. According to a ¹[2020] 2022¹ Facts and Figures report released by the Alzheimer’s Association, nearly six ¹and a half¹ million Americans age 65 or older, or one out of every ¹[10] nine¹ Americans in this age group, are currently living with Alzheimer’s disease. Barring the development of medical breakthroughs to prevent, slow, or cure the disease, this number is expected to rise ¹[by a factor of 22 percent]¹ to 7.1 million by 2025, and to increase ¹[by a factor of 33 percent]¹ to 13.8 million by ¹[2050] 2060¹ . In New Jersey, the total number of seniors living with Alzheimer’s, which was 190,000 in the year ¹[2020] 2022,¹ is expected to increase by more than 10 percent, to 210,000, by the year 2025.

c. Although the complexities of death reporting systems make it difficult to accurately determine the total number of deaths that have been directly or indirectly caused by Alzheimer’s disease, the Alzheimer’s Association ¹[2020] 2022¹ Facts and Figures report estimated the ¹[2018] 2019¹ mortality rate for this disease to be ¹[37.3] 37.0¹ deaths for every 100,000 people nationwide and ¹[30.4] 29.6¹ deaths for every 100,000 people Statewide in New Jersey.

d. Alzheimer’s disease progresses in a gradual and insidious manner. ¹[While] Although¹ most persons with dementia live ¹four to¹ eight ¹[to 10]¹ years after receiving their diagnosis, some can live as long as 20 years as they continue to lose their ability to function. As of 2016, Alzheimer’s disease was ranked as the sixth most burdensome disease in the nation in terms of total disability-adjusted life years and the fourth most burdensome disease in terms of the total number of years of life that are lived with a disability.

e. In addition to burdening the person who suffers from the disease, Alzheimer’s disease and related disorders or other forms of dementia place a tremendous and years-long burden on caregivers, particularly family or other unpaid caregivers. These caregivers often assist persons with Alzheimer’s disease ¹and related disorders or other forms of dementia¹ in performing one or more activities of daily living, including bathing, dressing, paying bills, shopping, and navigating transportation systems. Caregivers also provide extensive emotional support and engage in a variety of other ancillary tasks, such as communicating and coordinating the care needs of the individual with Alzheimer’s ¹disease or a related disorder or other form of dementia¹ , ensuring the individual’s safety at home and elsewhere, and managing the individual’s other health conditions. Caring for a person with Alzheimer’s disease or ¹a¹ related ¹[dementias] disorder or other form of dementia¹ poses unique challenges, and caregivers are often required to manage the patient’s personality and behavioral changes for decades and provide increasing levels of supervision and personal care as the disease progresses. As symptoms worsen, the increase in caregiving obligations can cause emotional stress and depression and new or exacerbated health problems in the caregiver, as well as depleted income due, in part, to disruptions in the caregiver’s employment and the need for the caregiver to finance the health care or other services received by the person with Alzheimer’s disease ¹[and] or a¹ related ¹[disorders] disorder¹ or other ¹[forms] form¹ of dementia.

f. In ¹[2019] 2021¹ , more than ¹[16] 11¹ million caregivers provided an estimated ¹[18.6] 16¹ billion hours in unpaid assistance across the nation to persons with Alzheimer’s disease and related disorders or other forms of dementia – a contribution to the nation that is valued at ¹[$244] $271.6¹ billion, which is equal to approximately ¹[11] 14¹ times the total revenue of McDonald’s in ¹[2018] 2020¹ . This included ¹[448] 361¹ caregivers who provided ¹[510] 686¹ million hours equal to ¹[$6.6] more than $13¹ billion worth of unpaid care in New Jersey alone.

g. Although personal care professionals, certified nurse aides, homemaker-home health aides, and other direct care professionals may be capable of providing paid caregiving services to persons with Alzheimer’s disease and related disorders or other forms of dementia, because of the low pay for caregiving services and the tireless, difficult, and thankless nature of the work, there is currently a significant shortage of these professionals in the State, and turnover rates are high.

h. In addition to causing significant physical and mental burdens both to individuals who have the disease and to their caregivers, dementia, including Alzheimer’s ¹disease and related disorders¹ , is one of the costliest conditions to society. In ¹[2020] 2022¹ , the total nationwide cost of caring for persons with Alzheimer’s disease and related disorders or other forms of dementia is projected to reach ¹[$305] $321¹ billion, not including ¹[$244] $271.6¹ billion in unpaid caregiver costs. Although Medicaid and Medicare are expected to cover $206 billion or ¹[67] 64¹ percent of the total costs of dementia-related care, out-of-pocket spending is expected to amount to ¹[$66] $81¹ billion in ¹[2020] 2022¹ alone, which is equal to ¹[22] 25¹ percent of total payments under the programs.

i. In ¹[2019] 2021¹ , total per-person health care and long-term care payments from all sources for Medicare beneficiaries with Alzheimer’s disease and related disordersor other forms of dementia were ¹[$50,201] $41,757¹ per person for those with dementia and ¹[$14,326] $14,026 per¹ person for those without dementia, which is over three times as great as payments for other Medicare beneficiaries in the same age group.

j. In New Jersey, it is expected that total Medicaid payments for persons age 65 and older who are living with Alzheimer’s ¹disease and related disorders or other forms of dementia¹ will amount to nearly $2.2 billion in 2020 and will increase more than 19 percent to $2.6 billion by 2025.

k. The total lifetime cost of care for someone with Alzheimer’s disease and related disorders or other forms of dementia was estimated to be ¹[$357,297 in 2019] $377,621 in 2021 dollars¹ . According to the Alzheimer’s Association ¹[2020] 2022¹ Facts and Figures report, 70 percent of this lifetime cost of care is borne by family caregivers in the form of unpaid caregiving and payments for out-of-pocket expenses. These lifetime cost estimates, moreover, likely underestimate the financial impacts that a person’s dementia has on the health and workplace productivity levels of the person’s family caregiver.

l. Persons with dementia ¹, including Alzheimer’s disease or a related disorder,¹ are also more likely than others to have co-occurring health care conditions. Of persons with Alzheimer’s disease and related disorders or other forms of dementia, ¹[38] 46¹ percent also have coronary artery disease, 37 percent have diabetes, ¹[29] 46¹ percent have chronic kidney disease, ¹[28] 34¹ percent have congestive heart failure, ¹[25] 20¹ percent have chronic obstructive pulmonary disease, ¹[22] 13¹ percent have stroke-related care, and ¹[13] 10¹ percent have cancer. Medicare beneficiaries with Alzheimer’s disease and related disorders or other forms of dementia have higher rates of hospitalization than other patients for all of these co-occurring conditions and higher average per-person payments in all categories except in the case of hospital care payments for individuals with congestive heart failure.

m. In general, patients with Alzheimer’s disease and related disorders or other forms of dementia have a 30 percent greater risk than other patients of experiencing a preventable hospitalization event, and patients with both dementia and depression have a 70 percent greater risk of preventable hospitalization than persons without a neuropsychiatric disorder.

n. There is currently a shortage of specialized geriatric professionals in the State and nation to meet the needs of the rapidly growing population of individuals ¹[aged] age¹ 65 years or older and the complex needs of aging individuals who are living with Alzheimer’s disease and related disorders or other forms of dementia. The Alzheimer’s Association ¹[2020] 2022¹ Facts and Figures report estimates that, by ¹[2030] 2050¹ , an additional ¹[23,750] 41,082¹ geriatricians will be needed to ¹[meet the needs of the aging population] serve 30 percent of people age 65 and older¹ nationwide ¹, representing a nine-fold increase¹ . In New Jersey, moreover, the shortage of geriatricians is particularly great. As of ¹[2019] 2021¹ , the State had only ¹[205] 206¹ geriatricians. The ¹[2020] 2022¹ Facts and Figures report indicates that, by 2050, the State will need at least 398 geriatricians to serve a mere 10 percent of the population ¹[aged] age¹ 65 years or older and will require a total of 1,193 geriatricians, representing anearly six-fold increase, to serve 30 percent of the population in this age group.

o. With a significant shortage of geriatric specialists to meet current and future dementia care needs, primary care physicians (PCPs) will play an increasingly important role in caring for dementia patients along the continuum of the disease and should, therefore, be properly trained in identifying the warning signs of Alzheimer’s disease and related disorders or other forms of dementia, providing timely and competent ¹[dementia]¹ diagnoses ¹of dementia, including Alzheimer’s and related conditions¹ , and meeting the ongoing care and support needs of patients who are living with ¹Alzheimer’s disease or a related condition or other form of¹ dementia.

p. Although ¹[82] 75¹ percent of the 1,000 PCPs surveyed for the ¹[2020] 2022¹ Facts and Figures report indicated that they are already working on the front lines of ¹caring for patients with¹ Alzheimer’s ¹[care] disease and related disorders or other forms of dementia¹ , half reported that ¹[the medical profession is] they do¹ not ¹feel¹ adequately prepared to ¹[meet increased demand in this area] care for patients with Alzheimer’s disease and related disorders or other forms of dementia, and more than half reported that there are not enough specialists in their area to meet patient demand¹ . These PCPs also reported a lack of access to sufficient dementia-related training in medical schools and residency programs, and more than half indicated that they had not pursued additional training in dementia care following graduation or residency, due to challenges associated with obtaining such supplemental training.

q. Although the State has previously attempted to identify and address issues associated with Alzheimer’s disease and related disorders or other forms of dementia through the enactment of P.L.1983, c.352 (C.26:2M-1 et seq.) and P.L.2011, c.76 (C.26:2M-16 et seq.) and the establishment of two different study commissions thereunder, each of those study commissions was temporary in nature and dissolved after the submission of a single report.

r. In light of the severe ongoing and worsening impacts and burdens of Alzheimer’s disease and related disorders or other forms of dementia, the projections for rapid increases in the number of persons presenting with these conditions into the future, and New Jersey’s current lack of a robust professional workforce necessary to address the concerns of this growing population of patients and their families, it is both reasonable and necessary for the State to establish a permanent commission to engage in a concerted, proactive, and ongoing effort to study and develop innovative solutions to address and mitigate the effects of this disease on ¹the¹ citizens of this State, both now and into the future.]²

²[2] 1². a. The Alzheimer’s and Dementia Care Long-Term ²[Planning] Advisory² Commission is established in the Department of Human Services. The purpose of the commission shall be to provide for the ongoing evaluation of the State’s ¹system of care for¹ Alzheimer’s disease and ¹related disorders and other forms of¹ dementia ¹[care system]¹ and identify various innovative means and methods that can be used to address the ¹[significant]¹ shortcomings in that care system and otherwise expand and prepare the system to meet the increasing and evolving needs of a rapidly aging population.

b. The commission shall consist of 12 members, including:

(1) ¹[Three non-voting ex officio members or their designees as follows:]¹ the Commissioner of Health, the Commissioner of Human Services, and the New Jersey ¹[Long Term] Long-Term¹ Care Ombudsman ¹, or their designees, who shall serve as ex officio, non-voting members¹ ;

(2) two public members to be appointed by the ²Governor based upon the recommendation of the² President of the Senate ¹[as follows:] , including¹ one ¹member¹ who ¹[shall represent] represents¹ an organization that advocates for members of the Alzheimer’s ¹disease and related disorders or other forms of dementia¹ community and one ¹member¹ who ¹[shall represent] represents¹ a for-profit healthcare facility that offers memory care services;

(3) two public members to be appointed by the ²Governor based upon the recommendation of the² Speaker of the General Assembly ¹[as follows:] ¹, including¹ one ¹member¹ who ¹[shall represent] represents¹ an organization that advocates for members of the Alzheimer’s ¹disease and related disorders or other forms of dementia¹ community and one ¹member¹ who ¹[shall represent] represents¹ a non-profit healthcare facility that offers memory care services; and

(4) five public members to be appointed by the Governor ¹[as follows] including¹ : one ²[geriatician] geriatrician² who is currently involved in the provision of direct services to patients with Alzheimer’s disease and related disorders or other forms of dementia; one psychiatrist who provides specialized services to ¹[persons] patients¹ with Alzheimer’s disease and related disorders or other forms of dementia; one caregiver who provides paid services to persons with Alzheimer’s disease or related disorders or other forms of dementia; one unpaid caregiver of a family member who has Alzheimer’s disease or a related disorder or other form of dementia; and one neurologist who provides specialized services to ¹[persons] patients¹ with Alzheimer’s disease or a related disorder or other form of dementia.

c. Each public member of the commission shall serve for a term of four years ¹[; however] , except that¹ , of the public members first appointed, two shall serve an initial term of one year, three shall serve an initial term of two years, two shall serve an initial term of three years, and two shall serve an initial term of four years. Each public member shall serve for the term of ¹[their] the member’s¹ appointment and until a successor is appointed and qualified ¹[, except that a public member may be reappointed] . Public members shall be eligible for reappointment¹ to the commission ¹[upon the expiration of the member’s term]¹ .

d. All initial appointments to the commission shall be made within ²[60] 180² days after the effective date of this act. Vacancies in the membership of the commission shall be filled in the same manner ¹as is¹ provided for the original appointments.

e. ¹[Any member of the commission may be removed by the Governor, for cause, after a public hearing.

f.]¹ The commission shall organize as soon as practicable, but not later than the 30th day following the appointment of a majority of its members, and shall annually elect a chairperson and vice-chairperson from among its members. The chairperson shall appoint a secretary who need not be a member of the commission.

¹[g.] f.¹ Each year, the commission shall meet pursuant to a schedule to be established at its first annual meeting. The commission shall additionally meet at the call of its chairperson or at the call of the ²[Commissioner of Health or the]² Commissioner of Human Services. In no case shall the commission meet fewer than ²[four] two² times per year.

¹[h.] g.¹ A majority of the total number of members currently appointed to the commission shall constitute a quorum. A vacancy in the membership of the commission shall not impair the ability of the commission to exercise its duties and effectuate its purposes. The commission may conduct business without a quorum, but may only ²[vote on recommendations] take advisory action² when a quorum is present. Recommendations shall be approved by a majority of the members present.

¹[i.] h.¹ The members of the commission shall serve without compensation, but shall be reimbursed for travel and other necessary expenses incurred in the performance of their duties, within the limits of funds made available to the commission for its purposes.

¹[j.] i.¹ The commission shall have the power to:

(1) adopt, amend, or repeal suitable bylaws for the management of its affairs;

(2) ²[maintain an office at such place or places as it shall designate;

(3) solicit, receive, accept, and expend any grant moneys or other funds that may be made available for its purposes by any government agency or any private for-profit or not-for-profit organization or entity;

(4)] with the approval of the Commissioner of Human Services,² solicit and receive assistance and services from any State, county, or municipal department, board, commission, or agency, as it may require and as may be available to it for its purposes; ²and²

²[(5) enter into any and all agreements or contracts, execute any and all instruments, and do and perform any and all acts or things necessary, convenient, or desirable to further the commission’s purposes; and

(6)] (3)² consult with, and solicit and receive testimony from, any association, organization, department, agency, or individual having knowledge of, and experience with:

(a) the treatment and care of, or provision of caregiving and personal care services to, persons with Alzheimer’s disease and related disorders or other forms of dementia;

(b) the status or quality of the State’s professional workforce in relation to Alzheimer’s disease and ¹related disorders and other forms of¹ dementia care;

(c) the emotional, physical, or financial effects of Alzheimer’s disease and related disorders or other forms of dementia on individuals, families, and the State; or

(d) any other issues related to Alzheimer’s disease ¹and related disorders¹ or ¹other forms of¹ dementia.

¹[k.] j.¹ The Department of Human Services shall provide professional and clerical staff to the commission as may be necessary to effectuate the purposes of this act.

²k. The commission shall serve in an advisory capacity to the Department of Human Services.²

²[3] 2². a. The ²responsibilities of the² Alzheimer’s and Dementia Care Long-Term ²[Planning] Advisory² Commission established pursuant to this act shall ²[have the ongoing duty] include, but not be limited² to:

(1) ²[study] studying² the incidence, prevalence, and impact of Alzheimer’s disease and related disorders or other forms of dementia in the State and in each region of the State and make projections about the future Statewide and regional incidence, prevalence, and impact of these conditions;

(2) ²[gather, analyze, and disseminate] gathering, analyzing, and disseminating² to health care professionals, policymakers, and members of the public, as appropriate, data and information about: (a) the needs of persons with Alzheimer’s disease and related disorders or other forms of dementia, as well as the needs of their family members and caregivers; (b) the quality and consistency of care that is provided to persons with Alzheimer’s disease and related disorders or other forms of dementia in the State, including those members of the medically underserved community, the ¹[poor] low income¹ community, and the lesbian, gay, bisexual, transgender, questioning, queer, and intersex (LGBTQI) communities; (c) the affordability of ¹care for¹ Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia ¹[care]¹ in the State and the actual and projected Statewide costs and individual costs associated with Alzheimer’s disease and related disorders or other forms of dementia in New Jersey, including, but not limited to, the costs of health care, mental health care, long-term care, and personal care, and ancillary or incidental costs such as those associated with the lost work productivity of, or the treatment of stress-related physical conditions or depression and other mental health conditions in, family caregivers; (d) the cost savings attained by the State through the provision of unpaid caregiving and personal care services by family caregivers; (e) the capacity of the State’s health care and long-term care facilities to house and provide specialized services to ²[persons] patients² with Alzheimer’s disease and related disorders or other forms of dementia; (f) the status of Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia care in other states, as compared to New Jersey; and (g) ²with the approval of the Commissioner of the Department of Human Services and subject to the availability of funds as designated by the department,² any other issue deemed by the commission to be relevant to effectuate the purposes of this act;

(3) ²[assess] assessing² the availability and affordability of existing programs, services, facilities, and agencies in the State that are used to meet the needs of persons with Alzheimer’s disease and related disorders or other forms of dementia and the needs of their families and caregivers; ²[evaluate] evaluating² the capacity of those existing policies, programs, services, facilities, and agencies to adapt to ²,² and adequately address ²,² the changing needs of dementia patients and their families and caregivers in the face of a continually increasing demand for services; and ²[identify and recommend] identifying and recommending² improvements to existing policies, programs, services, facilities, or agencies or the institution of new policies, programs, services, facilities, or agencies to address unmet and expanding needs in this area;

(4) ²[study] studying,² and ²[outline] making recommendations to the Department of Human Services on,² the appropriate roles of State government, local governments, and health care facilities and professionals in providing or ensuring the provision of appropriate services and other assistance to persons with Alzheimer’s disease and related disorders or ¹[or]¹ other forms of dementia, including persons in ¹the¹ early stages of disease, and in providing or ensuring the provision of sufficient supportive and assistive services, including training and respite services, to unpaid family caregivers; and ²[identify] identifying² ways in which State and local governments and health care systems could increase their awareness of, and improve their ability to more effectively address, issues affecting persons with Alzheimer’s disease and related disorders or other forms of dementia and their families;

(5) ²[review and analyze] reviewing and analyzing² the capacity of law enforcement officers and emergency medical responders in the State to compassionately and effectively interact with, diffuse conflicts involving, and provide emergency services to, persons with Alzheimer’s disease and related disorders or other forms of dementia;

(6) ²[identify and recommend] identifying and recommending² best practices and training requirements for: (a) health care and mental health care professionals, particularly geriatric specialists and primary care practitioners, who are or will be practicing on the front lines of ¹caring for patients with¹ Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia ¹[care]¹ , in order to ensure that such professionals are properly trained and are capable of accurately and timely diagnosing Alzheimer’s disease and related disorders or other forms of dementia, understanding the progression of the disease, and recognizing and responding to the evolving needs of patients; (b) personal care professionals who provide services to patients with Alzheimer’s disease and related disorders or other forms of dementia, in order to ensure that such professionals are capable of providing compassionate and high quality personal care services and adapting to the evolving needs of their patients; and (c) law enforcement officers, emergency medical responders, and other public safety officers, in order to ensure that those officers understand the complexities of dealing with persons with Alzheimer’s disease and related disorders or other forms of dementia and are better prepared to compassionately diffuse or resolve conflicts and respond to emergencies involving such persons;

(7) ²[evaluate] evaluating² the sufficiency of the State’s Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia care workforce, ²[identify] identifying² current and future workforce needs, ²[anticipate] anticipating² future workforce shortages, ²[develop] developing² innovative strategies to encourage and increase the recruitment and retention of health care, mental health care, direct support, and personal care professionals who are trained to provide ¹care for¹ Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia ¹[care]¹ , and ²[take] taking² any other action necessary to encourage and facilitate the development and maintenance of a robust and specialized professional Statewide workforce that is capable of delivering high quality ¹care for patients with¹ Alzheimer’s ¹disease¹ and ¹[dementia-related care] related disorders or other forms of dementia¹ to a rapidly growing population in the State; and

(8) ²[study and make] studying and making² recommendations on any other issue related to Alzheimer’s disease and related disorders or other forms of dementia.

b. One year after the commission’s organizational meeting, ²[and]² annually thereafter ²for a period of no less than five years, and thereafter upon request of the Legislature or as determined by the commission², the commission shall prepare and submit a written report to the Governor and, pursuant to section 2 of P.L.1991, c.164 (C.52:14-19.1), to the Legislature. The written report shall contain, at a minimum:

(1) the commission’s annual findings on the issues described in subsection a. of this section;

(2) a description as to whether, how, and why the commission’s findings have changed over time, including an indication as to the implementation status of the commission’s prior recommendations, a description of actions that have been undertaken by any person or public or private entity in the State over the prior reporting period to implement those prior recommendations, and a description of the perceived or documented effects resulting from implementation of those prior recommendations;

(3) a copy of, or reference to, the statistical, demographic, testimonial, or other data or information that was used by the commission to: (a) support its current findings under paragraph (1) of this subsection; or (b) inform its analysis of the impact of the commission’s prior recommendations under paragraph (2) of this subsection. The data provided pursuant to this paragraph shall be presented in aggregate form and shall not contain the ¹[personally] personal¹ identifying information of any patient, caregiver, or other person; and

(4) the commission’s recommendations for ²[legislative, executive, or other]² actions that can be undertaken, or strategies that can be implemented, to: (a) improve the quality, consistency, or affordability of ¹care for¹ Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia ¹[care]¹ in the State and ensure ¹[its] the¹ accessibility ¹of care¹ to all who need it; (b) reduce, eliminate, or mitigate the societal and individual impact of, and the Statewide, local, and individual costs or financial burdens associated with, Alzheimer’s disease and related disorders or other forms of dementia; (c) ensure that the State’s professional workforce is adequately trained, is capable of providing affordable, high quality ¹care for patients with¹ Alzheimer’s ¹disease¹ and ¹related disorders or other forms of¹ dementia ¹[care]¹ throughout the State, and is sufficient in numbers and flexible enough to adapt to a rapidly increasing demand for services in the State; (d) ensure that unpaid caregivers in the State are recognized for their dedicated service and significant contributions to society and are provided with sufficient supportive and respite services, as well as financial assistance where possible and appropriate, as may be necessary for them to capably perform their caregiving tasks while avoiding unnecessary physical, mental, or financial strain; or (e) otherwise address the issues or mitigate the problems identified by the commission in its annual findings.

²[4.] 3.² P.L.2011, c.76 (C.26:2M-16 et seq.) is repealed.

²[5.] 4.² This act shall take effect immediately.