§11201 — Title 42 The Public Health and Welfare | U.S. Code

Summary

Congress says there is a serious problem: between 2,000,000 and 3,000,000 Americans have Alzheimer’s disease or similar dementias. Current tests and data are not accurate. About one-half to two-thirds of nursing home patients meet dementia criteria. Caring for these people costs a lot—between $38,000,000,000 and $42,000,000,000 each year in direct costs. Families provide most of the care and often face big emotional and financial strain. Scientists have made progress, and programs from the Decade of the Brain may help, but no quick cure or large drop in need is expected soon. The law says we need better knowledge and coordination. It calls for more study of who gets these diseases and why, better early diagnosis and testing, what services work and cost, how to combine professional and family care, and what data already exist. The federal government must coordinate efforts, improve training for caregivers, and give the Social Security Administration information to set and update disability rules under titles II and XVI of the Social Security Act.

Title 42, §11201

The Public Health and Welfare — Source: USLM XML via OLRC

The Congress finds that—

(1)best estimates indicate that between 2,000,000 and 3,000,000 Americans presently have Alzheimer’s disease or related dementias;

(2)estimates of the number of individuals afflicted with Alzheimer’s disease and related dementias are unreliable because current diagnostic procedures lack accuracy and sensitivity and because there is a need for epidemiological data on incidence and prevalence of such disease and dementias;

(3)studies estimate that between one-half and two-thirds of patients in nursing homes meet the clinical and mental status criteria for dementia;

(4)the cost of caring for individuals with Alzheimer’s disease and related dementias is great, and conservative estimates range between $38,000,000,000 and $42,000,000,000 per year solely for direct costs;

(5)progress in the neurosciences and behavioral sciences has demonstrated the interdependence and mutual reinforcement of basic science, clinical research, and services research for Alzheimer’s disease and related dementias;

(6)programs initiated as part of the Decade of the Brain are likely to provide significant progress in understanding the fundamental mechanisms underlying the causes of, and treatments for, Alzheimer’s disease and related dementias;

(7)although substantial progress has been made in recent years in identifying possible leads to the causes of Alzheimer’s disease and related dementias, and more progress can be expected in the near future, there is little likelihood of a breakthrough in the immediate future that would eliminate or substantially reduce—

(A)the number of individuals with the disease and dementias; or

(B)the difficulties of caring for the individuals;

(8)the responsibility for care of individuals with Alzheimer’s disease and related dementias falls primarily on their families, and the care is financially and emotionally devastating;

(9)attempts to reduce the emotional and financial burden of caring for dementia patients is impeded by a lack of knowledge about such patients, how to care for such patients, the costs associated with such care, the effectiveness of various modes of care, the quality and type of care necessary at various stages of the disease, and other appropriate services that are needed to provide quality care;

(10)the results of the little research that has been undertaken concerning dementia has been inadequate or the results have not been widely disseminated;

(11)more knowledge is needed concerning—

(A)the epidemiology of, and the identification of risk factors for, Alzheimer’s disease and related dementias;

(B)the development of methods for early diagnosis, functional assessment, and psychological evaluation of individuals with Alzheimer’s disease for the purpose of monitoring the course of the disease and developing strategies for improving the quality of life for such individuals;

(C)the understanding of the optimal range and cost-effectiveness of community and institutional services for individuals with Alzheimer’s disease and related dementias and their families, particularly with respect to the design, delivery, staffing, and mix of such services and the coordination of such services with other services, and with respect to the relationship of formal to informal support services;

(D)the understanding of optimal methods to combine formal support services provided by health care professionals with informal support services provided by family, friends, and neighbors of individuals with Alzheimer’s disease, and the identification of ways family caregivers can be sustained through interventions to reduce psychological and social problems and physical problems induced by stress;

(E)existing data that are relevant to Alzheimer’s disease and related dementias; and

(F)the costs incurred in caring for individuals with Alzheimer’s disease and related dementias;

(12)it is imperative to provide appropriate coordination of the efforts of the Federal Government in the provision of services for individuals with Alzheimer’s disease and related dementias;

(13)it is important to increase the understanding of Alzheimer’s disease and related dementias by the diverse range of personnel involved in the care of individuals with such disease and dementias; and

(14)it is imperative that the Social Security Administration be provided information pertaining to Alzheimer’s disease and related dementias, particularly for personnel in such Administration involved in the establishment and updating of criteria for determining whether an individual is under a disability for purposes of titles II and XVI of the Social Security Act [42 U.S.C. 401 et seq., 1381 et seq.].

Notes & Related Subsidiaries

Editorial Notes

References in Text

The Social Security Act, referred to in par. (14), is act Aug. 14, 1935, ch. 531, 49 Stat. 620. Titles II and XVI of the Act are classified generally to subchapters II (§ 401 et seq.) and XVI (§ 1381 et seq.), respectively, of chapter 7 of this title. For complete classification of this Act to the Code, see section 1305 of this title and Tables.

Amendments

1992—Pars. (4) to (14). Pub. L. 102–507 added pars. (4) to (8), redesignated former pars. (7) to (12) as (9) to (14), respectively, and struck out former pars. (4) to (6) which read as follows: “(4) the care for individuals with Alzheimer’s disease and related dementias falls primarily on their families, and such care is very often financially and emotionally devastating; “(5) the cost of caring for individuals with Alzheimer’s disease and related dementias is great, and conservative estimates range between $38,000,000,000 and $42,000,000,000 per year solely for direct costs; “(6) although substantial progress has been made in recent years in identifying possible leads to the causes of Alzheimer’s disease and related dementias and more progress can be expected in the near future, there is little likelihood of a breakthrough in the foreseeable future which would eliminate or substantially reduce the number of individuals with such disease and dementias or the difficulties of caring for such individuals;”.

Statutory Notes and Related Subsidiaries

Short Title

of 2024 Amendment Pub. L. 118–93, § 1, Oct. 1, 2024, 138 Stat. 1565, provided that: “This Act [amending section section 11225 of this title] may be cited as the ‘Alzheimer’s Accountability and Investment Act’.” Pub. L. 118–92, § 1, Oct. 1, 2024, 138 Stat. 1562, provided that: “This Act [amending section section 11225 of this title] may be cited as the ‘NAPA Reauthorization Act’.”

Short Title

of 2011 Amendment Pub. L. 111–375, § 1, Jan. 4, 2011, 124 Stat. 4100, provided that: “This Act [enacting subchapter III–A of this chapter] may be cited as the ‘National Alzheimer’s Project Act’.”

Short Title

of 1992 Amendment Pub. L. 102–507, § 1, Oct. 24, 1992, 106 Stat. 3281, provided that: “This Act [enacting section 11261 of this title, amending this section and section 285e–5, 11211, 11212, 11221, 11223, 11251, 11253, 11263, 11292, and 11294 of this title, repealing section 11261 of this title, and amending provisions set out as a note under this section] may be cited as the ‘Alzheimer’s Disease Research, Training, and Education

Amendments

of 1992’.”

Short Title

Pub. L. 99–660, title IX, § 901, Nov. 14, 1986, 100 Stat. 3802, as amended by Pub. L. 102–507, § 2(a), Oct. 24, 1992, 106 Stat. 3281, provided that: “This title [enacting this chapter] may be cited as the ‘Alzheimer’s Disease and Related Dementias Research Act of 1992’.”

§11201 Findings

Summary

Title 42, §11201

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