42 USC Ch. 118: ALZHEIMER'S DISEASE AND RELATED DEMENTIAS RESEARCH
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42 USC Ch. 118: ALZHEIMER'S DISEASE AND RELATED DEMENTIAS RESEARCH
From Title 42—THE PUBLIC HEALTH AND WELFARE

CHAPTER 118—ALZHEIMER'S DISEASE AND RELATED DEMENTIAS RESEARCH

SUBCHAPTER I—GENERAL PROVISIONS

Sec.
11201.
Findings.

        

SUBCHAPTER II—COUNCIL ON ALZHEIMER'S DISEASE

11211, 11212. Repealed.

        

SUBCHAPTER III—ADVISORY PANEL ON ALZHEIMER'S DISEASE

11221 to 11223. Omitted.

        

SUBCHAPTER III–A—NATIONAL ALZHEIMER'S PROJECT

11225.
The National Alzheimer's Project.

        

SUBCHAPTER IV—RESEARCH RELATING TO SERVICES FOR INDIVIDUALS WITH ALZHEIMER'S DISEASE AND RELATED DEMENTIAS AND THEIR FAMILIES

11231, 11232. Repealed or Transferred.
11241 to 11243. Repealed or Transferred.

        

Part 1—Responsibilities of National Institute of Mental Health

11251.
Research program and plan.
11252.
Dissemination.
11253.
Authorization of appropriations.

        

Part 2—Responsibilities of Agency for Healthcare Research and Quality

11261.
Research program.
11262.
Dissemination.
11263.
Authorization of appropriations.

        

Part 3—Responsibilities of the Centers for Medicare & Medicaid Services

11271.
Research program and plan.
11272.
Dissemination.
11273.
Authorization of appropriations.
11281 to 11283. Repealed or Transferred.

        

SUBCHAPTER V—EDUCATIONAL ACTIVITIES

11291.
Providing information for personnel of Social Security Administration.
11292.
Education of public, individuals with Alzheimer's disease and their families, and health and long-term care providers.
11293.
Education programs for safety and transportation personnel.
11294.
Authorization of appropriations.

        

Editorial Notes

Codification

Pub. L. 102–507, §2(b), Oct. 24, 1992, 106 Stat. 3281, struck out "SERVICES" before "RESEARCH" in chapter heading.

SUBCHAPTER I—GENERAL PROVISIONS

§11201. Findings

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.].

(Pub. L. 99–660, title IX, §902, Nov. 14, 1986, 100 Stat. 3802; Pub. L. 102–507, §4, Oct. 24, 1992, 106 Stat. 3281.)


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 sections 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'."

SUBCHAPTER II—COUNCIL ON ALZHEIMER'S DISEASE

§§11211, 11212. Repealed. Pub. L. 105–362, title VI, §601(a)(2)(E), Nov. 10, 1998, 112 Stat. 3286

Section 11211, Pub. L. 99–660, title IX, §911, Nov. 14, 1986, 100 Stat. 3804; Pub. L. 102–54, §13(q)(14)(A), June 13, 1991, 105 Stat. 282; Pub. L. 102–507, §5(2)[(a)], Oct. 24, 1992, 106 Stat. 3282; Pub. L. 103–171, §3(b)(3), Dec. 2, 1993, 107 Stat. 1991, related to establishment of Council on Alzheimer's Disease in the Department of Health and Human Services.

Section 11212, Pub. L. 99–660, title IX, §912, Nov. 14, 1986, 100 Stat. 3804; Pub. L. 100–607, title I, §142(c)(1)(E), Nov. 4, 1988, 102 Stat. 3057; Pub. L. 102–507, §5(b), Oct. 24, 1992, 106 Stat. 3282, related to functions of Council on Alzheimer's Disease.

SUBCHAPTER III—ADVISORY PANEL ON ALZHEIMER'S DISEASE

§§11221 to 11223. Omitted


Editorial Notes

Codification

Sections 11221 to 11223, which provided for the establishment of the Advisory Panel on Alzheimer's Disease, were omitted pursuant to section 11221(i), which provided that the Panel and all programs established under this subchapter shall terminate on Sept. 30, 1996. See section 11225 of this title.

Section 11221, Pub. L. 99–660, title IX, §921, Nov. 14, 1986, 100 Stat. 3806; Pub. L. 102–507, §6(a), Oct. 24, 1992, 106 Stat. 3283; Pub. L. 103–171, §3(b)(3), Dec. 2, 1993, 107 Stat. 1991; Pub. L. 106–129, §2(b)(2), Dec. 6, 1999, 113 Stat. 1670, established the Advisory Panel on Alzheimer's Disease within the Department of Health and Human Services.

Section 11222, Pub. L. 99–660, title IX, §922, Nov. 14, 1986, 100 Stat. 3807, related to the functions of Panel.

Section 11223, Pub. L. 99–660, title IX, §923, Nov. 14, 1986, 100 Stat. 3807; Pub. L. 102–507, §6(b), Oct. 24, 1992, 106 Stat. 3283, authorized appropriations to carry out this subchapter.

SUBCHAPTER III–A—NATIONAL ALZHEIMER'S PROJECT

§11225. The National Alzheimer's Project

(a) Definition of Alzheimer's

In this Act, the term "Alzheimer's" means Alzheimer's disease and related dementias.

(b) Establishment

There is established in the Office of the Secretary of Health and Human Services the National Alzheimer's Project (referred to in this Act as the "Project").

(c) Purpose of the Project

The Secretary of Health and Human Services, or the Secretary's designee, shall—

(1) be responsible for the creation and maintenance of an integrated national plan to overcome Alzheimer's;

(2) provide information on, and coordination of, Alzheimer's research and services across all Federal agencies;

(3) accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer's;

(4) improve the—

(A) promotion of healthy aging and reduction and mitigation of risk factors for Alzheimer's;

(B) early diagnosis of Alzheimer's disease; and

(C) coordination of the care and treatment of citizens with Alzheimer's;


(5) ensure the inclusion of ethnic and racial populations and other underserved populations, including individuals with developmental disabilities such as Down syndrome, at higher risk for Alzheimer's or least likely to receive care, in clinical, research, and service efforts with the purpose of decreasing health disparities in Alzheimer's;

(6) provide information on, and promote the adoption of, healthy behaviors that may reduce the risk of cognitive decline and promote and protect cognitive health; and

(7) coordinate with international bodies to integrate and inform the fight against Alzheimer's globally.

(d) Duties of the Secretary

(1) In general

The Secretary of Health and Human Services, or the Secretary's designee, shall—

(A) oversee the creation and updating of the national plan described in paragraph (2); and

(B) use discretionary authority to evaluate all Federal programs around Alzheimer's, including budget requests and approvals.

(2) National plan

The Secretary of Health and Human Services, or the Secretary's designee, shall carry out an annual assessment of the Nation's progress, across public and private sectors, in preparing for the escalating burden of Alzheimer's, including both implementation steps and recommendations for priority actions based on the assessment, including consideration of public-private collaborations, as appropriate.

(e) Advisory Council

(1) In general

There is established an Advisory Council on Alzheimer's Research, Care, and Services (referred to in this Act as the "Advisory Council").

(2) Membership

(A) Federal members

The Advisory Council shall be comprised of the following experts:

(i) A designee of the Centers for Disease Control and Prevention.

(ii) A designee of the Administration on Aging.

(iii) A designee of the Centers for Medicare & Medicaid Services.

(iv) A designee of the Indian Health Service.

(v) A designee of the Office of the Director of the National Institutes of Health.

(vi) The Surgeon General.

(vii) A designee of the National Science Foundation.

(viii) A designee of the Department of Veterans Affairs.

(ix) A designee of the Food and Drug Administration.

(x) A designee of the Agency for Healthcare Research and Quality.

(xi) A designee of the Department of Justice.

(xii) A designee of the Federal Emergency Management Agency.

(xiii) A designee of the Social Security Administration.

(xiv) 2 or more other designees, as determined by the Secretary of Health and Human Services, at least one of whom has expertise in risk factors associated with the development or the progression of Alzheimer's.

(B) Non-Federal members

In addition to the members outlined in subparagraph (A), the Advisory Council shall include 15 expert members from outside the Federal Government, which shall include—

(i) 2 Alzheimer's patient advocates;

(ii) 2 Alzheimer's caregivers;

(iii) 2 health care providers;

(iv) 2 representatives of State health departments;

(v) 3 researchers with Alzheimer's-related expertise in basic, translational, clinical, or drug development science, including at least one researcher with demonstrated experience in recruitment and retention of underrepresented groups into research or clinical trials related to dementia;

(vi) 2 voluntary health association representatives, including a national Alzheimer's disease organization that has demonstrated experience in research, care, and patient services, and a State-based advocacy organization that provides services to families and professionals, including information and referral, support groups, care consultation, education, and safety services;

(vii) 1 individual with a diagnosis of Alzheimer's disease; and

(viii) 1 representative from a historically underserved population whose lifetime risk for developing Alzheimer's is markedly higher than that of other populations.

(3) Meetings

The Advisory Council shall meet quarterly and such meetings shall be open to the public.

(4) Advice

The Advisory Council shall advise the Secretary of Health and Human Services, or the Secretary's designee.

(5) Annual report

The Advisory Council shall provide to the Secretary of Health and Human Services, or the Secretary's designee and Congress—

(A) annual evaluations of all federally funded efforts in Alzheimer's research, risk reduction, public health, clinical care, and institutional-, home-, and community-based programs and their outcomes;

(B) recommendations for priority actions to expand, eliminate, coordinate, or condense programs based on the program's performance, mission, and purpose;

(C) recommendations to—

(i) reduce the financial impact of Alzheimer's on—

(I) Medicare and other federally funded programs; and

(II) families living with Alzheimer's disease; and


(ii) improve health outcomes and reduce disparities; and


(D) annual evaluations of the implementation, including outcomes, of the recommendations, including priorities if necessary, through an updated national plan under subsection (d)(2).

(6) Termination

The Advisory Council shall terminate on December 31, 2035.

(f) Data sharing

Agencies both within the Department of Health and Human Services and outside of the Department that have data relating to Alzheimer's shall share such data with the Secretary of Health and Human Services, or the Secretary's designee, to enable the Secretary, or the Secretary's designee, to complete the report described in subsection (g).

(g) Annual report

The Secretary of Health and Human Services, or the Secretary's designee, shall submit to Congress—

(1) an annual report that includes—

(A) an evaluation; 1 of all federally funded efforts in Alzheimer's research, clinical care, and institutional-, home-, and community-based programs and their outcomes; and

(B) a summary of the Secretary's process for identifying and updating what conditions constitute Alzheimer's disease;


(2) an evaluation of all federally funded programs based on program performance, mission, and purpose related to Alzheimer's disease;

(3) recommendations for—

(A) priority actions based on the evaluation conducted by the Secretary and the Advisory Council to—

(i) reduce the financial impact of Alzheimer's on—

(I) Medicare and other federally funded programs; and

(II) families living with Alzheimer's disease; and


(ii) improve health outcomes and reduce disparities;


(B) implementation steps; and

(C) priority actions to improve the prevention, diagnosis, treatment, care, institutional-, home-, and community-based programs of Alzheimer's disease for individuals with Alzheimer's disease and their caregivers; and


(4) an annually updated national plan.

(h) Professional judgment budget

For fiscal year 2024 and each subsequent fiscal year, the Director of the National Institutes of Health shall prepare and submit, directly to the President for review and transmittal to Congress, after reasonable opportunity for comment, but without change, by the Secretary of Health and Human Services and the Advisory Council, an annual budget estimate for the initiatives of the National Institutes of Health pursuant to the reports and recommendations made under this Act, including an estimate of the number and type of personnel needs for the National Institutes of Health.

(i) Sunset

The Project shall expire on December 31, 2035.

(Pub. L. 111–375, §2, Jan. 4, 2011, 124 Stat. 4100; Pub. L. 118–92, §2, Oct. 1, 2024, 138 Stat. 1562; Pub. L. 118–93, §2, Oct. 1, 2024, 138 Stat. 1565.)


Editorial Notes

References in Text

This Act, referred to in subsecs. (a), (b), (e)(1), and (h), is Pub. L. 111–375, Jan. 4, 2011, 124 Stat. 4100, known as the National Alzheimer's Project Act, which enacted this subchapter and provisions set out as a note under section 11201 of this title. For complete classification of this Act to the Code, see Short Title of 2010 Amendment note set out under section 11201 of this title and Tables.

Codification

Section was enacted as part of the National Alzheimer's Project Act, and not as part of the Alzheimer's Disease and Related Dementias Research Act of 1992 which comprises this chapter.

Amendments

2024—Subsec. (c)(2). Pub. L. 118–92, §2(1)(A), substituted "on, and coordination of," for "and coordination of".

Subsec. (c)(4). Pub. L. 118–92, §2(1)(B), added subpar. (A) and redesignated former subpars. (A) and (B) as (B) and (C), respectively.

Subsec. (c)(5). Pub. L. 118–92, §2(1)(C), inserted "and other underserved populations, including individuals with developmental disabilities such as Down syndrome," after "populations" and substituted semicolon at end for "; and".

Subsec. (c)(6), (7). Pub. L. 118–92, §2(1)(D), (E), added par. (6) and redesignated former par. (6) as (7).

Subsec. (d)(2). Pub. L. 118–92, §2(2), inserted ", across public and private sectors," after "Nation's progress" and ", including consideration of public-private collaborations, as appropriate" before period at end.

Subsec. (e)(2)(A)(xi) to (xiv). Pub. L. 118–92, §2(3)(A)(i), added cls. (xi) to (xiv).

Subsec. (e)(2)(B). Pub. L. 118–92, §2(3)(A)(ii)(I), substituted "15" for "12" in introductory provisions.

Subsec. (e)(2)(B)(v). Pub. L. 118–92, §2(3)(A)(ii)(II), substituted "3 researchers" for "2 researchers" and ", including at least one researcher with demonstrated experience in recruitment and retention of underrepresented groups into research or clinical trials related to dementia;" for "; and".

Subsec. (e)(2)(B)(vii), (viii). Pub. L. 118–92, §2(3)(A)(ii)(III), (IV), added cls. (vii) and (viii).

Subsec. (e)(5)(A). Pub. L. 118–92, §2(3)(B)(i), substituted "annual evaluations" for "an initial evaluation" and "research, risk reduction, public health, clinical" for "research, clinical".

Subsec. (e)(5)(B). Pub. L. 118–92, §2(3)(B)(ii), struck out "initial" before "recommendations".

Subsec. (e)(5)(C). Pub. L. 118–92, §2(3)(B)(iii)(I), struck out "initial" before "recommendations" in introductory provisions.

Subsec. (e)(5)(C)(ii). Pub. L. 118–92, §2(3)(B)(iii)(II), inserted "and reduce disparities" before the semicolon.

Subsec. (e)(5)(D). Pub. L. 118–92, §2(3)(B)(iv), substituted "annual evaluations" for "annually thereafter, an evaluation".

Subsec. (e)(6). Pub. L. 118–92, §2(3)(C), substituted "2035" for "2025".

Subsec. (g)(1). Pub. L. 118–92, §2(4)(A), substituted "that includes—" for "that includes", designated remainder of existing provisions as subpar. (A), inserted semicolon after "an evaluation" and "and" after "their outcomes;", and added subpar. (B).

Subsec. (g)(3)(A)(ii). Pub. L. 118–92, §2(4)(B), inserted "and reduce disparities" before the semicolon.

Subsec. (h). Pub. L. 118–93, §2(2), added subsec. (h). Former subsec. (h) redesignated (i).

Pub. L. 118–92, §2(5), substituted "2035" for "2025".

Subsec. (i). Pub. L. 118–93, §2(1), redesignated subsec. (h) as (i).


Statutory Notes and Related Subsidiaries

Annual Budget Estimate

Pub. L. 113–235, div. G, title II, §230, Dec. 16, 2014, 128 Stat. 2492, provided that: "Hereafter, for each fiscal year through fiscal year 2025, the Director of the National Institutes of Health shall prepare and submit directly to the President for review and transmittal to Congress, after reasonable opportunity for comment, but without change, by the Secretary of Health and Human Services and the Advisory Council on Alzheimer's Research, Care, and Services, an annual budget estimate (including an estimate of the number and type of personnel needs for the Institutes) for the initiatives of the National Institutes of Health pursuant to the National Alzheimer's Plan, as required under section 2(d)(2) of Public Law 111–375 [42 U.S.C. 11225(d)(2)]."

1 So in original. The semicolon probably should not appear.

SUBCHAPTER IV—RESEARCH RELATING TO SERVICES FOR INDIVIDUALS WITH ALZHEIMER'S DISEASE AND RELATED DEMENTIAS AND THEIR FAMILIES


Editorial Notes

Codification

Pub. L. 100–607, title I, §142(c)(1)(B), (D), (2)(C), Nov. 4, 1988, 102 Stat. 3057, redesignated former subchapter V as IV and struck out heading for subchapter IV "AWARDS FOR LEADERSHIP AND EXCELLENCE IN ALZHEIMER'S DISEASE AND RELATED DEMENTIAS", consisting of sections 11231 and 11232, and struck out heading for part 1 "Responsibilities of National Institute on Aging", consisting of sections 11241 to 11243.

§11231. Transferred


Editorial Notes

Codification

Section, Pub. L. 99–660, title IX, §931, Nov. 14, 1986, 100 Stat. 3807, which provided for awards for biomedical research on Alzheimer's disease and related dementias, was redesignated section 445B of the Public Health Service Act by Pub. L. 100–607, title I, §142(a), Nov. 4, 1988, 102 Stat. 3057, and is classified to section 285e–4 of this title.

§11232. Repealed. Pub. L. 100–607, title I, §142(c)(1)(A), Nov. 4, 1988, 102 Stat. 3057

Section, Pub. L. 99–660, title IX, §932, Nov. 14, 1986, 100 Stat. 3808, authorized appropriations for fiscal years 1988 through 1991 to carry out program of awards for research on Alzheimer's disease and related dementias.

§§11241, 11242. Transferred


Editorial Notes

Codification

Section 11241, Pub. L. 99–660, title IX, §941, Nov. 14, 1986, 100 Stat. 3808, which provided for Director of National Institute on Aging to conduct, or make grants for conduct of, research on services for individuals with Alzheimer's disease and related dementias and their families, was redesignated section 445C of the Public Health Service Act by Pub. L. 100–607, title I, §142(a), Nov. 4, 1988, 102 Stat. 3057, and is classified to section 285e–5 of this title.

Section 11242, Pub. L. 99–660, title IX, §942, Nov. 14, 1986, 100 Stat. 3809, which provided for Director to disseminate results of such research to professional entities and the public, was redesignated section 445D of the Public Health Service Act by Pub. L. 100–607, title I, §142(a), Nov. 4, 1988, 102 Stat. 3057, and is classified to section 285e–6 of this title.

§11243. Repealed. Pub. L. 100–607, title I, §142(c)(2)(A), Nov. 4, 1988, 102 Stat. 3057

Section, Pub. L. 99–660, title IX, §943, Nov. 14, 1986, 100 Stat. 3809, authorized appropriations for fiscal years 1988 through 1991 to carry out programs of National Institute on Aging in research on services for individuals with Alzheimer's disease and related dementias and their families.

Part 1—Responsibilities of National Institute of Mental Health


Editorial Notes

Codification

Pub. L. 100–607, title I, §142(c)(2)(C), (D), Nov. 4, 1988, 102 Stat. 3057, redesignated part 2 as 1 and struck out former part 1 heading "Responsibilities of National Institute on Aging".

§11251. Research program and plan

(a) Grants for research

The Director of the National Institute of Mental Health shall conduct, or make grants for the conduct of, research relevant to appropriate services and specialized care for individuals with Alzheimer's disease and related dementias and their families.

(b) Preparation of plan; contents; revision

The Director of the National Institute of Mental Health shall—

(1) ensure that the research conducted under subsection (a) includes research concerning—

(A) mental health services and treatment modalities relevant to the mental, behavioral, and psychological problems associated with Alzheimer's disease and related dementias;

(B) the most effective methods for providing comprehensive multidimensional assessments to obtain information about the current functioning of, and needs for the care of, individuals with Alzheimer's disease and related dementias;

(C) the optimal range, types, and cost-effectiveness of services and specialized care for individuals with Alzheimer's disease and related dementias and for their families, in community and residential settings (including home care, day care, and respite care), and in institutional settings, particularly with respect to—

(i) the design of the services and care;

(ii) appropriate staffing for the provision of the services and care;

(iii) the timing of the services and care during the progression of the disease or dementias; and

(iv) the appropriate mix and coordination of the services and specialized care;


(D) the efficacy of various special care units in the United States for individuals with Alzheimer's disease, including an assessment of the costs incurred in operating such units, the evaluation of best practices for the development of appropriate standards to be used by such units, and the measurement of patient outcomes in such units;

(E) methods to combine formal support services provided by health care professionals for individuals with Alzheimer's disease and related dementias with informal support services provided for such individuals by their families, friends, and neighbors, including services such as day care services, respite care services, home care services, nursing home services, and other residential services and care, and an evaluation of the services actually used for such individuals and the sources of payment for such services;

(F) methods to sustain family members who provide care for individuals with Alzheimer's disease and related dementias through interventions to reduce psychological and social problems and physical problems induced by stress; and

(G) improved methods to deliver services for individuals with Alzheimer's disease and related dementias and their families, including services such as outreach services, comprehensive assessment and care management services, outpatient treatment services, home care services, respite care services, adult day care services, partial hospitalization services, nursing home services, and other residential services and care; and


(2) ensure that the research is coordinated with, and uses, to the maximum extent feasible, resources of, other Federal programs relating to Alzheimer's disease and dementia, including centers supported under section 285e–2 of this title, centers supported by the National Institute of Mental Health on the psychopathology of the elderly, relevant activities of the Administration on Aging, other programs and centers involved in research on Alzheimer's disease and related dementias supported by the Department, and other programs relating to Alzheimer's disease and related dementias which are planned or conducted by Federal agencies other than the Department, State or local agencies, community organizations, or private foundations.

(Pub. L. 99–660, title IX, §931, formerly §944, Nov. 14, 1986, 100 Stat. 3809; renumbered §931, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057; Pub. L. 102–507, §7(a)(1), (2), Oct. 24, 1992, 106 Stat. 3284.)


Editorial Notes

Prior Provisions

A prior section 931 of Pub. L. 99–660, which was classified to section 11231 of this title, was redesignated section 445B of the Public Health Service Act by section 142(a) of Pub. L. 100–607, and is classified to section 285e–4 of this title.

Amendments

1992—Subsec. (a). Pub. L. 102–507, §7(a)(1)(B), inserted "and specialized care" after "services".

Subsec. (b). Pub. L. 102–507, §7(a)(2), designated par. (1) as entire subsec. and redesignated former par. (1)(A) as par. (1), former par. (1)(A)(i) to (vii) as par. (1)(A) to (G), respectively, former par. (1)(A)(iii)(I) to (IV) as par. (1)(C)(i) to (iv), respectively, and former par. (1)(B) as par. (2).

Subsec. (b)(1). Pub. L. 102–507, §7(a)(1)(C)(i), substituted "The Director of the National Institute of Mental Health shall" for "Within 6 months after November 14, 1986, the Director of the National Institute of Mental Health shall prepare and transmit to the Chairman of the Council a plan for the research to be conducted under subsection (a) of this section. The plan shall" in introductory provisions.

Subsec. (b)(1)(A). Pub. L. 102–507, §7(a)(1)(C)(ii)(I), substituted "ensure that the research conducted under subsection (a) includes" for "provide for" in introductory provisions.

Subsec. (b)(1)(A)(iii). Pub. L. 102–507, §7(a)(1)(C)(ii)(II), added cl. (iii) and struck out former cl. (iii) which read as follows: "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 of such services, appropriate staffing for the provision of such services, the timing of such services during the progression of such disease or dementias, and the appropriate mix and coordination of such services;".

Subsec. (b)(1)(A)(iv). Pub. L. 102–507, §7(a)(1)(C)(ii)(III), inserted "the evaluation of best practices for the development of" before "appropriate".

Subsec. (b)(1)(A)(v), (vii). Pub. L. 102–507, §7(a)(1)(C)(ii)(IV), substituted "nursing home services, and other residential services and care" for "and nursing home services".

Subsec. (b)(1)(B). Pub. L. 102–507, §7(a)(1)(C)(iii), substituted "the research" for "research carried out under the plan".

Subsec. (b)(2). Pub. L. 102–507, §7(a)(1)(A), struck out par. (2) which read as follows: "Within one year after transmitting the plan required under paragraph (1), and annually thereafter, the Director of the National Institute of Mental Health shall prepare and transmit to the Chairman of the Council such revisions of such plan as the Director considers appropriate."

Subsec. (c). Pub. L. 102–507, §7(a)(1)(A), struck out subsec. (c) which read as follows: "In preparing and revising the plan required by subsection (b) of this section, the Director of the National Institute of Mental Health shall consult with the Chairman of the Council and the heads of agencies within the Department."

§11252. Dissemination

The Director of the National Institute of Mental Health shall disseminate the results of research conducted under this part to appropriate professional entities and to the public.

(Pub. L. 99–660, title IX, §932, formerly §945, Nov. 14, 1986, 100 Stat. 3810; renumbered §932, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057.)


Editorial Notes

Prior Provisions

A prior section 932 of Pub. L. 99–660 was classified to section 11232 of this title prior to repeal by section 142(c)(1)(A) of Pub. L. 100–607.

§11253. Authorization of appropriations

There are authorized to be appropriated to carry out this part such sums as may be necessary for each of the fiscal years 1992 through 1996.

(Pub. L. 99–660, title IX, §933, formerly §946, Nov. 14, 1986, 100 Stat. 3810; renumbered §933, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057; Pub. L. 102–507, §7(a)(3), Oct. 24, 1992, 106 Stat. 3284.)


Editorial Notes

Amendments

1992—Pub. L. 102–507 amended section generally. Prior to amendment, section read as follows: "To carry out this part, there are authorized to be appropriated $2,000,000 for each of fiscal years 1988 through 1991."

Part 2—Responsibilities of Agency for Healthcare Research and Quality


Editorial Notes

Codification

Pub. L. 106–129, §2(b)(2), Dec. 6, 1999, 113 Stat. 1670, substituted "Agency for Healthcare Research and Quality" for "Agency for Health Care Policy and Research" in part heading.

Pub. L. 102–507, §7(b)(1)(A), Oct. 24, 1992, 106 Stat. 3285, substituted "Agency for Health Care Policy and Research" for "National Center for Health Services Research and Health Care Technology Assessment" in part heading.

Pub. L. 100–607, title I, §142(c)(2)(D), Nov. 4, 1988, 102 Stat. 3057, redesignated part 3 as 2. Former part 2 redesignated 1.

§11261. Research program

(a) Grants for research

The Director of the Agency for Healthcare Research and Quality shall conduct, or make grants for the conduct of, research relevant to appropriate services for individuals with Alzheimer's disease and related dementias and for their families.

(b) Research subjects

The Director of the Agency for Healthcare Research and Quality shall ensure that research conducted under subsection (a) shall include research—

(1) concerning improving the organization, delivery, and financing of services for individuals with Alzheimer's disease and related dementias and for their families, including research on—

(A) the design, staffing, and operation of special care units for the individuals in institutional settings, as well as individuals in institutional settings,1 as well as individuals in home care, day care, and respite care; and

(B) the exploration and enhancement of services such as home care, day care, and respite care, that provide alternatives to institutional care;


(2) concerning the costs incurred by individuals with Alzheimer's disease and related dementias and by their families in obtaining services, particularly services that are essential to the individuals and that are not generally required by other patients under long-term care programs;

(3) concerning the costs, cost-effectiveness, and effectiveness of various interventions to provide services for individuals with Alzheimer's disease and related dementias and for their families;

(4) conducted in consultation with the Director of the National Institute on Aging and the Commissioner of the Administration on Aging, concerning the role of physicians in caring for persons with Alzheimer's disease and related dementias and for their families, including the role of a physician in connecting such persons with appropriate health care and supportive services, including those supported through State and area agencies on aging designated under section 3025(a)(1) and (2)(A) of this title; and

(5) conducted in consultation with the Director of the National Institute on Aging and the Commissioner of the Administration on Aging, concerning legal and ethical issues, including issues associated with special care units, facing individuals with Alzheimer's disease and related dementias and facing their families.

(Pub. L. 99–660, title IX, §934, as added Pub. L. 102–507, §7(b)(1)(B), Oct. 24, 1992, 106 Stat. 3285; amended Pub. L. 106–129, §2(b)(2), Dec. 6, 1999, 113 Stat. 1670.)


Editorial Notes

Prior Provisions

A prior section 11261, Pub. L. 99–660, title IX, §934, formerly §947, Nov. 14, 1986, 100 Stat. 3811; renumbered §934, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057; Pub. L. 102–54, §13(q)(14)(B), June 13, 1991, 105 Stat. 282, related to research relevant to appropriate services for individuals with Alzheimer's disease and related dementias, prior to repeal by Pub. L. 102–507, §7(b)(1)(B).

Amendments

1999—Subsecs. (a), (b). Pub. L. 106–129 substituted "Director of the Agency for Healthcare Research and Quality" for "Administrator of the Agency for Health Care Policy and Research".

1 So in original. The words "as well as individuals in institutional settings," probably should not appear.

§11262. Dissemination

The Director of the National Center for Health Services Research and Health Care Technology Assessment shall disseminate the results of research conducted under this part to appropriate professional entities and to the public.

(Pub. L. 99–660, title IX, §935, formerly §948, Nov. 14, 1986, 100 Stat. 3812; renumbered §935, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057.)

§11263. Authorization of appropriations

There are authorized to be appropriated to carry out this part such sums as may be necessary for each of the fiscal years 1992 through 1996.

(Pub. L. 99–660, title IX, §936, formerly §949, Nov. 14, 1986, 100 Stat. 3812; renumbered §936, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057; Pub. L. 102–507, §7(b)(2), Oct. 24, 1992, 106 Stat. 3286.)


Editorial Notes

Amendments

1992—Pub. L. 102–507 amended section generally. Prior to amendment, section read as follows: "To carry out this part, there are authorized to be appropriated $2,000,000 for each of fiscal years 1988 through 1991."

Part 3—Responsibilities of the Centers for Medicare & Medicaid Services


Editorial Notes

Codification

Pub. L. 108–173, title IX, §900(e)(5)(A), Dec. 8, 2003, 117 Stat. 2373, amended heading generally. Prior to amendment, heading read as follows: "Responsibilities of Health Care Financing Administration".

Pub. L. 100–607, title I, §142(c)(2)(D), Nov. 4, 1988, 102 Stat. 3057, redesignated part 4 as 3. Former part 3 redesignated 2.

§11271. Research program and plan

(a) Grants for research

The Administrator of the Centers for Medicare & Medicaid Services shall conduct, or make grants for the conduct of, research relevant to appropriate services for individuals with Alzheimer's disease and related dementias and their families.

(b) Preparation of plan; contents; revision

(1) Within 6 months after November 14, 1986, the Administrator of the Centers for Medicare & Medicaid Services shall prepare and transmit to the Chairman of the Council a plan for research to be conducted under (a).1 The plan shall—

(A) provide for a determination of the types of services required by individuals with Alzheimer's disease and related dementias and their families to allow such individuals to remain living at home or in a community-based setting;

(B) provide for a determination of the costs of providing needed services to individuals with Alzheimer's disease and related dementias and their families, including the expenditures for institutional, home, and community-based services and the source of payment for such expenditures;

(C) provide for an assessment of the adequacy of benefits provided through the Medicare and Medicaid programs and through private health insurance for needed services for individuals with Alzheimer's disease and related dementias and their families; and

(D) provide for a determination of the costs to the Medicare and Medicaid programs and to private health insurers (if available) of providing covered benefits to individuals with Alzheimer's disease and related dementias and their families.


(2) Within one year after transmitting the plan required under paragraph (1), and annually thereafter, the Administrator of the Centers for Medicare & Medicaid Services shall prepare and transmit to the Chairman of the Council such revisions of such plan as the Administrator considers appropriate.

(c) Consultation for preparation and revision of plan

In preparing and revising the plan required by subsection (b), the Administrator of the Centers for Medicare & Medicaid Services shall consult with the Chairman of the Council and the heads of agencies within the Department.

(Pub. L. 99–660, title IX, §937, formerly §949A, Nov. 14, 1986, 100 Stat. 3812; renumbered §937, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057; amended Pub. L. 108–173, title IX, §900(e)(5)(B), Dec. 8, 2003, 117 Stat. 2373.)


Editorial Notes

Amendments

2003—Subsec. (a). Pub. L. 108–173, §900(e)(5)(B)(i), substituted "Centers for Medicare & Medicaid Services" for "National Health Care Financing Administration".

Subsec. (b)(1). Pub. L. 108–173, §900(e)(5)(B)(ii), substituted "Centers for Medicare & Medicaid Services" for "Health Care Financing Administration" in introductory provisions.

Subsecs. (b)(2), (c). Pub. L. 108–173, §900(e)(5)(B)(iii), (iv), substituted "Centers for Medicare & Medicaid Services" for "Health Care Financing Administration".

1 So in original. Probably should be preceded by "subsection".

§11272. Dissemination

The Administrator of the Centers for Medicare & Medicaid Services shall disseminate the results of research conducted under this part to appropriate professional entities and to the public.

(Pub. L. 99–660, title IX, §938, formerly §949B, Nov. 14, 1986, 100 Stat. 3812; renumbered §938, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057; amended Pub. L. 108–173, title IX, §900(e)(5)(C), Dec. 8, 2003, 117 Stat. 2373.)


Editorial Notes

Amendments

2003—Pub. L. 108–173 substituted "Centers for Medicare & Medicaid Services" for "Health Care Financing Administration".

§11273. Authorization of appropriations

To carry out this part, there are authorized to be appropriated $2,000,000 for each of fiscal years 1988 through 1991.

(Pub. L. 99–660, title IX, §939, formerly §949C, Nov. 14, 1986, 100 Stat. 3813; renumbered §939, Pub. L. 100–607, title I, §142(c)(2)(B), Nov. 4, 1988, 102 Stat. 3057.)

§§11281, 11282. Transferred


Editorial Notes

Codification

Section 11281, Pub. L. 99–660, title IX, §951, Nov. 14, 1986, 100 Stat. 3813, which provided for establishment of Clearinghouse on Alzheimer's Disease, was renumbered section 445E of the Public Health Service Act by Pub. L. 100–607, title I, §142(a), Nov. 4, 1988, 102 Stat. 3057, and is classified to section 285e–7 of this title.

Section 11282, Pub. L. 99–660, title IX, §952, Nov. 14, 1986, 100 Stat. 3813, which provided for dissemination project to be conducted by national organization representing individuals with Alzheimer's disease and related dementias, was renumbered section 445F of the Public Health Service Act by Pub. L. 100–607, title I, §142(a), Nov. 4, 1988, 102 Stat. 3057, and is classified to section 285e–8 of this title.

§11283. Repealed. Pub. L. 100–607, title I, §142(c)(1)(A), Nov. 4, 1988, 102 Stat. 3057

Section, Pub. L. 99–660, title IX, §953, Nov. 14, 1986, 100 Stat. 3814, authorized appropriations for fiscal years 1988 through 1991 to carry out program of dissemination of information on Alzheimer's disease.

SUBCHAPTER V—EDUCATIONAL ACTIVITIES


Editorial Notes

Codification

Pub. L. 100–607, title I, §142(c)(1)(C), (D), Nov. 4, 1988, 102 Stat. 3057, redesignated subchapter VII as V, struck out heading for subchapter VI "DISSEMINATION", consisting of sections 11281 to 11283 of this title, and redesignated former subchapter V as IV.

§11291. Providing information for personnel of Social Security Administration

(a) The Secretary shall develop a mechanism to ensure the prompt provision of the most current information concerning Alzheimer's disease and related dementias to the Commissioner of Social Security, particularly information which will increase the understanding of personnel of the Social Security Administration concerning such disease and dementias.

(b) The Commissioner of Social Security shall ensure that information received under subsection (a) is provided to personnel of the Social Security Administration, particularly personnel involved in the process of determining, for purposes of titles II and XVI of the Social Security Act [42 U.S.C. 401 et seq., 1381 et seq.], whether an individual is under a disability.

(Pub. L. 99–660, title IX, §961, Nov. 14, 1986, 100 Stat. 3814.)


Editorial Notes

References in Text

The Social Security Act, referred to in subsec. (b), is act Aug. 14, 1935, ch. 531, 49 Stat. 620. Titles II and XVI of the Social Security 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.

§11292. Education of public, individuals with Alzheimer's disease and their families, and health and long-term care providers

(a) Training models grants

(1) Grants

The Director of the National Institute on Aging may award grants to eligible entities to assist the entities in developing and evaluating model training programs—

(A) for—

(i) health care professionals, including mental health professionals;

(ii) health care paraprofessionals;

(iii) personnel, including information and referral, case management, and in-home services personnel (including personnel receiving support under the Older Americans Act of 1965 (42 U.S.C. 3001 et seq.)), providing supportive services to the elderly and the families of the elderly;

(iv) family caregivers providing care and treatment for individuals with Alzheimer's disease and related disorders; and

(v) personnel of local organizations (including community groups, business and labor groups, and religious, educational, and charitable organizations) that have traditionally not been involved in planning and developing long-term care services; and


(B) with attention to such variables as—

(i) curricula development for training and continuing education programs;

(ii) care setting; and

(iii) intervention technique.

(2) Eligible entity

To be eligible to receive grants under this subsection, an entity shall be—

(A) an educational institution providing training and education in medicine, psychology, nursing, social work, gerontology, or health care administration;

(B) an educational institution providing preparatory training and education of personnel for nursing homes, hospitals, and home or community settings; or

(C) an Alzheimer's Disease Research Center described in section 285e–2(a) of this title.

(b) Educational grants

The Director of the National Institute on Aging is authorized to make grants to public and nonprofit private entities to assist such entities in establishing programs, for educating health care providers and the families of individuals with Alzheimer's disease or related disorders, regarding—

(1) caring for individuals with such diseases or disorders; and

(2) the availability in the community of public and private sources of assistance, including financial assistance, for caring for such individuals.

(c) Award of grants

In awarding grants under this section, the Director of the National Institute on Aging shall—

(1) award the grants on the basis of merit;

(2) award the grants in a manner that will ensure access to the programs described in subsections (a) and (b) by rural, minority, and underserved populations throughout the country; and

(3) ensure that the grants are distributed among the principal geographic regions of the United States.

(d) Application

To be eligible to receive a grant under this section, an entity shall submit an application to the Director of the National Institute on Aging at such time, in such manner, and containing or accompanied by such information, as the Director may reasonably require, including, at a minimum, an assurance that the entity will coordinate programs provided under this section with the State agency designated under section 305(a)(1) of the Older Americans Act of 1965 [42 U.S.C. 3025(a)(1)], in the State in which the entity will provide such programs.

(e) Coordination

The Director of the National Institute on Aging shall coordinate the award of grants under this section with the heads of other appropriate agencies, including the Commissioner of the Administration on Aging.

(Pub. L. 99–660, title IX, §962, Nov. 14, 1986, 100 Stat. 3814; Pub. L. 102–507, §8(a), Oct. 24, 1992, 106 Stat. 3286.)


Editorial Notes

References in Text

The Older Americans Act of 1965, referred to in subsec. (a)(1)(A)(iii), is Pub. L. 89–73, July 14, 1965, 79 Stat. 218, which is classified generally to chapter 35 (§3001 et seq.) of this title. For complete classification of this Act to the Code, see Short Title note set out under section 3001 of this title and Tables.

Amendments

1992—Pub. L. 102–507 amended section generally. Prior to amendment, section read as follows: "The Director of the National Institute on Aging, through centers supported under section 285e–2 of this title, professional associations, and continuing education programs, shall conduct education and information dissemination activities concerning the special problems of individuals with Alzheimer's disease and their families. Such activities shall be designed to enhance the understanding of such problems by individuals who provide care for individuals with Alzheimer's disease and related dementias, including physicians, nurses, psychologists, social workers, occupational therapists, nursing home administrators, nurses, and health care aides."

§11293. Education programs for safety and transportation personnel

The Director of the National Institute on Aging, through centers supported under section 285e–2 of this title, training academies, and continuing education programs, shall conduct education and information dissemination activities concerning Alzheimer's disease and related dementias for personnel involved in ensuring the public safety and providing public transportation. Such activities shall be designed to enhance the ability of such personnel to respond appropriately to individuals with Alzheimer's disease and related dementias whom such personnel may encounter in the course of their employment.

(Pub. L. 99–660, title IX, §963, Nov. 14, 1986, 100 Stat. 3815.)

§11294. Authorization of appropriations

(a) To carry out sections 11291 and 11293 of this title, there are authorized to be appropriated $1,000,000 for each of the fiscal years 1988 through 1991.

(b) There are authorized to be appropriated such sums as may be necessary for each of the fiscal years 1992 through 1996, to carry out section 11292 of this title.

(Pub. L. 99–660, title IX, §964, Nov. 14, 1986, 100 Stat. 3815; Pub. L. 102–507, §8(b), Oct. 24, 1992, 106 Stat. 3287.)


Editorial Notes

Amendments

1992—Pub. L. 102–507 designated existing provisions as subsec. (a), substituted "sections 11291 and 11293 of this title" for "this subchapter", and added subsec. (b).