Sponsored by:
Senator JOSEPH F. VITALE
District 19 (Middlesex)
Senator RICHARD J. CODEY
District 27 (Essex and Morris)
SYNOPSIS
Establishes Alzheimer s and Dementia Care Long-Term Planning Commission in DHS.
CURRENT VERSION OF TEXT
As introduced.
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 (one out of every 10 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 to 7.1 million by 2025 (a 22 percent increase) and to 13.8 million by 2050 (a 33 percent increase). In New Jersey, the total number of seniors living with Alzheimer s (190,000 in the year 2020) 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 (DALYs) and the fourth most burdensome disease in terms of the total number of years of life that are lived with a disability (YLDs).
e. In addition to burdening the person who suffers from the disease, Alzheimer s disease and related dementias 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 or other 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 or other dementias a contribution to the nation that is valued at $244 billion (or 11 times the total revenue of McDonald s in 2018). This included 448 caregivers who provided 510 million hours (or $6.6 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 dementias, because of the low pay in this area 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 and other dementias is projected to reach $305 billion (not including $244 billion in unpaid caregiver costs). While Medicaid and Medicare are expected to cover $206 billion (67 percent) of the total costs of dementia-related care, out-of-pocket spending is expected to amount to $66 billion in 2020 alone (22 percent of total payments).
i. In 2019, total per-person health care and long-term care payments from all sources for Medicare beneficiaries with Alzheimer s or other dementias were over three times as great as payments for other Medicare beneficiaries in the same age group ($50,201 per person for those with dementia compared with $14,326 per person for those without dementia).
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 or other dementias 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 other dementias, 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 ca