Senator JOSEPH F. VITALE
District 19 (Middlesex)
Senator RICHARD J. CODEY
District 27 (Essex and Morris)
Senators Diegnan and Pou
Establishes “Alzheimer’s and Dementia Care Long-Term Planning Commission” in DHS.
CURRENT VERSION OF TEXT
As reported by the Senate Health, Human Services and Senior Citizens Committee on February 9, 2021, with amendments.
An Act establishing a permanent Alzheimer’s and Dementia Care Long-Term Planning 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:
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 2020 Facts and Figures report released by the Alzheimer’s Association, nearly six million Americans age 65 or older 1[(one] , or one1 out of every 10 Americans in this age 1[group)] group,1 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 1by a factor of 22 percent1 to 7.1 million by 2025 1[(a 22 percent increase)] ,1 and 1to increase by a factor of 33 percent1 to 13.8 million by 2050 1[(a 33 percent increase)]1 . In New Jersey, the total number of seniors living with Alzheimer’s 1[(190,000 in the year 2020)] , which was 190,000 in the year 20201 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 2020 Facts and Figures report estimated the 2018 mortality rate for this disease to be 37.3 deaths for every 100,000 people nationwide and 30.4 deaths for every 100,000 people Statewide in New Jersey.
d. Alzheimer’s disease progresses in a gradual and insidious manner. While most persons with dementia live eight to 10 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 1[(DALYs)]1 and the fourth most burdensome disease in terms of the total number of years of life that are lived with a disability 1[(YLDs)]1 .
e. In addition to burdening the person who suffers from the disease, Alzheimer’s disease and related 1[dementias] disorders or other forms of dementia1 place a tremendous and years-long burden on caregivers, particularly family or other unpaid caregivers. These caregivers often assist persons with Alzheimer’s disease 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, 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 related dementias 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[or] and related disorders or1 other 1forms of1 dementia.
f. In 2019, more than 16 million caregivers provided an estimated 18.6 billion hours in unpaid assistance across the nation to persons with Alzheimer’s disease 1and related disorders1 or other 1[dementias] forms of dementia1 – a contribution to the nation that is valued at $244 billion 1[(or] , which is equal to approximately1 11 times the total revenue of McDonald’s in 1[2018)] 20181 . This included 448 caregivers who provided 510 million hours 1[(or $6.6 billion worth)] equal to $6.6 billion worth1 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 1[dementias] disorders or other forms of dementia1 , because of the low pay 1[in this area] for caregiving services1 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, is one of the costliest conditions to society. In 2020, the total nationwide cost of caring for persons with Alzheimer’s 1disease1 and 1related disorders or1 other 1[dementias] forms of dementia1 is projected to reach $305 billion 1[(not] , not1 including $244 billion in unpaid caregiver 1[costs)] costs1 . 1[While] Although1 Medicaid and Medicare are expected to cover $206 billion 1[(67 percent)] or 67 percent1 of the total costs of dementia-related care, out-of-pocket spending is expected to amount to $66 billion in 2020 alone 1[(22] , which is equal to 221 percent of total 1[payments)] payments under the programs1 .
i. In 2019, total per-person health care and long-term care payments from all sources for Medicare beneficiaries with Alzheimer’s 1disease and related disorders1 or other 1[dementias] forms of dementia1 were 1$50,201 per person for those with dementia and $14,326 person for those without dementia, which is1 over three times as great as payments for other Medicare beneficiaries in the same age group 1[($50,201 per person for those with dementia compared with $14,326 per person for those without dementia)]1 .
j. In New Jersey, it is expected that total Medicaid payments for persons age 65 and older who are living with Alzheimer’s 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 1disease and related disorders1 or other 1[dementias] forms of dementia1 was estimated to be $357,297 in 2019. According to the Alzheimer’s Association 2020 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 are also more likely than others to have co-occurring health care conditions. Of persons with Alzheimer’s disease and 1related disorders or1 other 1[dementias] forms of dementia1 , 38 percent also have coronary artery disease, 37 percent have diabetes, 29 percent have chronic kidney disease, 28 percent have congestive heart failure, 25 percent have chronic obstructive pulmonary disease, 22 percent have stroke-related care, and 13 percent have cancer. Medicare beneficiaries with Alzheimer’s 1disease and related disorders1 or other 1[dementias] forms of dementia1 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 1disease and related disorders1 or other 1[dementias] forms of dementia1 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 1[aging] population of individuals aged 65 years or older1 and the complex needs of aging individuals who are living with Alzheimer’s disease and related 1[dementias] disorders or other forms of dementia1 . The Alzheimer’s Association 2020 Facts and Figures report estimates that, by 2030, an additional 23,750 geriatricians will be needed to meet the needs of the aging population nationwide. In New Jersey, moreover, the shortage of geriatricians is particularly great. As of 2019, the State had only 205 geriatricians. The 2020 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 aged 65 years or older and will require a 1total of 1,193 geriatricians, representing a1 nearly six-fold increase 1[in geriatricians (or a total of 1,193 geriatricians)] ,1 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 1[dementias] disorders or other forms of dementia1 , providing timely and competent dementia diagnoses, and meeting the ongoing care and support needs of patients who are living with dementia.
p. 1[While] Although1 82 percent of the 1,000 PCPs surveyed for the 2020 Facts and Figures report indicated that they are already working on the front lines of Alzheimer’s care, half reported that the medical profession is not adequately prepared to meet increased demand in this area. 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 1[dementias] disorders or other forms of dementia1 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 1[dementias] disorders or other forms of dementia1 , 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 citizens of this State, both now and into the future.
2. a. The Alzheimer’s and Dementia Care Long-Term Planning 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 Alzheimer’s disease and dementia care system and identify various innovative means and methods that can be used to address the significant 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 1 121 members, including:
(1) 1Three non-voting ex officio members or their designees as follows:1 the Commissioner of Health, the Commissioner of Human Services, 1and1 the New Jersey Long Term Care Ombudsman 1[, the Director of the Division of Aging Services in the Department of Human Services, the Director of the Office of the Public Guardian for the Elderly in the Department of Human Services, the Director of the Office of Minority and Multicultural Health in the Department of Health, the Director of the Division of Medical Assistance and Health Services in the Department of Human Services, the President of Alzheimer’s New Jersey, the Executive Director of the Alzheimer’s Association Greater New Jersey Chapter, the Executive Director of the Alzheimer’s Association Delaware Valley Chapter, the President of the New Jersey Health Care Quality Institute, the President of the Home Care and Hospice Association of New Jersey, the President of the New Jersey Hospital Association, the President of LeadingAge New Jersey, the Executive Director of Caregivers of New Jersey, the President of the New Jersey chapter of the AARP, and the Executive Director of the National Alliance on Mental Illness in New Jersey, or their designees, who shall serve ex officio]1 ;
(2) two 1public1 members 1to be appointed by the President1 of the Senate 1[who are not of the same political party, one of whom shall be appointed by the President of the Senate and one of whom shall be appointed by the Senate Minority Leader] as follows: one who shall represent an organization that advocates for members of the Alzheimer’s community and one who shall represent a for-profit healthcare facility that offers memory care services1 ;
(3) two 1public1 members 1to be appointed by the Speaker1 of the General Assembly 1[who are not of the same political party, one of whom shall be appointed by the Speaker of the General Assembly and one of whom shall be appointed by the Minority Leader of the General Assembly] as follows: one who shall represent an organization that advocates for members of the Alzheimer’s community and one who shall represent a non-profit healthcare facility that offers memory care services1 ; and
(4) 1 five1 public members to be appointed by the Governor as follows: 1[two health care professionals] one geriatician1 who 1[are] is1 currently involved in the provision of direct services to patients with Alzheimer’s disease 1[or other related dementias, one of whom shall be a geriatric specialist and one of whom shall be a primary care physician] and related disorders or other forms of dementia1 ; 1[two mental health care professionals] one psychiatrist1 who 1[provide] provides1 specialized services to persons with Alzheimer’s disease 1[or related dementias, at least one of whom shall be a psychiatrist] and related disorders or other forms of dementia1 ; one 1[personal care assistant, one homemaker-home health aide, and one certified nurse aide, each of whom provides] caregiver who provides1 paid services to persons with Alzheimer’s disease or related 1[dementias] disorders or other forms of dementia1 ; one 1[citizen who is an]1 unpaid caregiver of a family member who has Alzheimer’s disease or a related 1disorder or other form of1 dementia; 1and1 one 1[citizen] neurologist1 who 1[is an unpaid caregiver of a family member who has both] provides specialized services to persons with1 Alzheimer’s disease or a related 1disorder or other form of1 dementia 1[and at least one other significant co-occurring disease, disorder, or condition; and one senior citizen 65 years of age or older. Of the public members appointed to the commission, not more than five shall be of the same political party]1 .
c. Each public member of the commission shall serve for a term of four years; however, of the public members first appointed, two shall serve an initial term of one year, three shall serve an initial term of two years, 1[three] two1 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 their appointment and until a successor is appointed and qualified, except that a public member may be reappointed to the commission upon the expiration of 1[their] the member’s1 term.
d. All initial appointments to the commission shall be made within 60 days after the effective date of this act. Vacancies in the membership of the commission shall be filled in the same manner provided for the original appointments.
e. Any member of the commission may be removed by the Governor, for cause, after a public hearing.
f. The commission shall organize as soon as practicable, but not later than the 30th day 1[,]1 following the appointment of a majority of its members 1,1 and shall annually elect a chairperson and vice-chairperson from among its members. The chairperson shall appoint a secretary 1[,]1 who need not be a member of the commission.
g. 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 1[the Commissioners of Health or Human Services] at the call of the Commissioner of Health or the Commissioner of Human Services1 . In no case shall the commission meet 1[less] fewer1 than four times per year.
h. 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 vote on recommendations when a quorum is present. Recommendations shall be approved by a majority of the members present.
i. The members of the commission shall serve without compensation, but shall be reimbursed for travel and other 1[miscellaneous] necessary1 expenses incurred in the 1[necessary]1 performance of their duties, within the limits of funds made available to the commission for its purposes.
j. The commission shall have the power to:
(1) adopt, amend, or repeal suitable bylaws for the management of its affairs;
(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) solicit and receive assistance and services from any State, county, or municipal department, board, commission, or agency, as it may require 1[,]1 and as may be available to it for its purposes;
(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) 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 1related disorders or1 other 1[dementias] forms of dementia1 ; (b) the status or quality of the State’s professional workforce in relation to Alzheimer’s disease and dementia care; (c) the emotional, physical, or financial effects of Alzheimer’s disease and 1related disorders or1 other 1[dementias] forms of dementia1 on individuals, families, and the State; or (d) any other issues related to Alzheimer’s disease or dementia.
k. The Department of Human Services shall provide professional and clerical staff to the commission1[,]1 as may be necessary to effectuate the purposes of this act.
3. a. The Alzheimer’s and Dementia Care Long-Term Planning Commission 1[,]1 established pursuant to this act 1[,]1 shall have the ongoing duty to:
(1) study the incidence, prevalence, and impact of Alzheimer’s disease and related 1[dementias] disorders or other forms of dementia1 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) gather, analyze, and disseminate 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 1[dementias] disorders or other forms of dementia1 , 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 1[dementias] disorders or other forms of dementia1 in the State 1, including those members of the medically underserved community, the poor community, and the lesbian, gay, bisexual, transgender, questioning, queer, and intersex (LGBTQI) communities1 ; (c) the affordability of Alzheimer’s and dementia care in the State and the actual and projected Statewide costs and individual costs associated with Alzheimer’s disease and related 1[dementias] disorders or other forms of dementia1 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 1[cost-savings] cost savings1 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 persons with Alzheimer’s 1[or related dementias] disease and related disorders or other forms of dementia1 ; (f) the status of Alzheimer’s and dementia care in other states, as compared to New Jersey; and (g) any other issue deemed by the commission to be relevant to effectuate the purposes of this act;
(3) assess 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 1and related disorders1 or other 1[dementias] forms of dementia1 and the needs of their families and caregivers; evaluate the capacity of those existing policies, programs, services, facilities, and agencies to adapt to and adequately address the changing needs of dementia patients and their families and caregivers in the face of a continually increasing demand for services; and identify and recommend 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) study and outline 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 1and related disorders1 or 1[related dementias] or other forms of dementia1 , including persons in 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 identify 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 1and related disorders1 or other 1[dementias] forms of dementia1 and their families;
(5) review and analyze 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 1[dementias] disorders or other forms of dementia1 ;
(6) identify and recommend 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 Alzheimer’s and dementia care, in order to ensure that such professionals are properly trained and are capable of accurately and timely diagnosing Alzheimer’s disease and related 1[dementias] disorders or other forms of dementia,1 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 1[or related dementias] and related disorders or other forms of dementia1 , 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 1[other dementias] related disorders or other forms of dementia1 and are better prepared to compassionately diffuse or resolve conflicts and respond to emergencies involving such persons;
(7) evaluate the sufficiency of the State’s Alzheimer’s and dementia care workforce, identify current and future workforce needs, anticipate future workforce shortages, develop 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 Alzheimer’s and dementia care, and take 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 Alzheimer’s and dementia-related care to a rapidly growing population in the State; and
(8) study and make recommendations on any other issue related to Alzheimer’s disease 1[or other dementias] and related disorders or other forms of dementia1 .
b. One year after the commission’s organizational meeting, and annually thereafter, 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 personally identifying information of any patient, caregiver, or other person; and
(4) the commission’s recommendations for legislative, executive, or other actions that can be undertaken, or strategies that can be implemented, to: (a) improve the quality, consistency, or affordability of Alzheimer’s and dementia care in the State and ensure its accessibility 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 1[other dementias] related disorders or other forms of dementia1 ; (c) ensure that the State’s professional workforce is adequately trained, is capable of providing affordable, high quality Alzheimer’s and dementia care 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.
4. P.L.2011, c.76 (C.26:2M-16 et seq.) is repealed.
5. This act shall take effect immediately.