I 
109TH CONGRESS 
1ST SESSION H. R. 1262
To amend the Public Health Service Act to fund breakthroughs in Alzheimer’s 
disease research while providing more help to caregivers and increasing 
public education about prevention. 
IN THE HOUSE OF REPRESENTATIVES 
MARCH 10, 2005
Mr. SMITH of New Jersey (for himself, Mr. MARKEY, and Mr. BURGESS) in-
troduced the following bill; which was referred to the Committee on En-
ergy and Commerce, and in addition to the Committee on Education and 
the Workforce, for a period to be subsequently determined by the Speak-
er, in each case for consideration of such provisions as fall within the ju-
risdiction of the committee concerned 
A BILL 
To amend the Public Health Service Act to fund break-
throughs in Alzheimer’s disease research while providing 
more help to caregivers and increasing public education 
about prevention.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 
(a) SHORT TITLE.—This Act may be cited as the 
‘‘Ronald Reagan Alzheimer’s Breakthrough Act of 2005’’.
(b) TABLE OF CONTENTS.—The table of contents of 
this Act is as follows:
Sec. 1. Short title; table of contents. 
Sec. 2. Findings. 
TITLE I—INCREASING THE FEDERAL COMMITMENT TO 
ALZHEIMER’S RESEARCH 
Sec. 101. Doubling NIH funding for Alzheimer’s disease research. 
Sec. 102. Priority to Alzheimer’s disease research. 
Sec. 103. Alzheimer’s disease prevention initiative. 
Sec. 104. Alzheimer’s disease clinical research. 
Sec. 105. Research on Alzheimer’s disease caregiving. 
Sec. 106. National summit on Alzheimer’s disease. 
TITLE II—PUBLIC EDUCATION ABOUT ALZHEIMER’S DISEASE 
Sec. 201. Public education campaign. 
TITLE III—ASSISTANCE FOR CAREGIVERS 
Sec. 301. Increased funding for National Family Caregiver Support Program. 
Sec. 302. Alzheimer’s disease demonstration grants. 
Sec. 303. Safe return program. 
Sec. 304. Lifespan respite care.
SEC. 2. FINDINGS. 
Congress makes the following findings: 
(1) Alzheimer’s disease is a disorder that de-
stroys cells in the brain. The disease is the leading 
cause of dementia, a condition that involves gradual 
memory loss, decline in the ability to perform rou-
tine tasks, disorientation, difficulty in learning, loss 
of language skills, impairment of judgment, and per-
sonality changes. As the disease progresses, people 
with Alzheimer’s disease become unable to care for 
themselves. The loss of brain cells eventually leads 
to the failure of other systems in the body.
(2) An estimated 4,500,000 Americans have 
Alzheimer’s disease and 1 in 10 people have a family 
member with the disease. By 2050, the number of 
individuals with the disease could range from 
13,200,000 to 16,000,000 unless science finds a way 
to prevent or cure the disease. 
(3) One in 10 people over the age of 65, and 
nearly half of those over the age of 85 have Alz-
heimer’s disease. Younger people also get the dis-
ease. 
(4) The Alzheimer’s disease process may begin 
in the brain as many as 20 years before the symp-
toms of Alzheimer’s disease appear. A person will 
live an average of 8 years and as many as 20 once 
the symptoms of Alzheimer’s disease appear. 
(5) The average lifetime cost of care for an in-
dividual with Alzheimer’s disease is $174,000. 
(6) 
In 
2000, 
medicare 
alone 
spent 
$62,000,000,000 for the care of individuals with 
Alzheimer’s disease and this amount is projected to 
increase to $160,000,000,000 in 2010. 
(7) Forty-nine percent of medicare beneficiaries 
who have Alzheimer’s disease also receive medicaid. 
Of the total population dually eligible for medicare 
and medicaid, 22 percent have Alzheimer’s disease.
(8) Seven in 10 people with Alzheimer’s disease 
live at home. While almost 75 percent of home care 
is provided by family and friends, the average an-
nual cost of paid care for people with Alzheimer’s 
disease at home is $12,500 per year. Almost all fam-
ilies pay this cost out of pocket. 
(9) Nearly 60 percent of all nursing home resi-
dents have Alzheimer’s disease or a related disorder. 
The average annual cost of Alzheimer’s disease nurs-
ing home care is nearly $64,000. Medicaid pays half 
of the total nursing home bill and helps 2 out of 3 
residents pay for their care. Medicaid expenditures 
for nursing home care for people with Alzheimer’s 
disease 
are 
estimated 
to 
increase 
from 
$19,000,000,000 in 2000 to $24,000,000,000 in 
2010. 
(10) In fiscal year 2004, the Federal Govern-
ment will spend an estimated $680,000,000 on Alz-
heimer’s disease research. If our Nation achieves its 
research goals (preventing the onset of Alzheimer’s 
disease in those at risk and treating and delaying 
progression of the disease in those who have symp-
toms), the projected number of cases of Alzheimer’s 
disease can be reduced by approximately 40 percent 
by the middle of the century. The number of baby
boomers with moderate to severe Alzheimer’s disease 
can be reduced by 60 percent. 
(11) A study commissioned by the United Hos-
pital Fund estimated that the annual value of this 
informal care system is $257,000,000,000. Family 
caregiving comes at enormous physical, emotional, 
and financial sacrifice, putting the whole system at 
risk. 
(12) One in 8 Alzheimer’s disease caregivers be-
comes ill or injured as a direct result of caregiving. 
One in 3 uses medication for problems related to 
caregiving. Older caregivers are 3 times more likely 
to become clinically depressed than others in their 
age group. 
(13) Elderly spouses strained by caregiving are 
63 percent more likely to die during a given 4-year 
period than other spouses their age. 
(14) Almost 3 of 4 caregivers are women. One 
in 3 has children or grandchildren under the age of 
18 living at home. Caregiving leaves them less time 
for other family members and they are much more 
likely to report family conflicts because of their 
caregiving role. 
(15) Most Alzheimer’s disease caregivers work 
outside the home before beginning their caregiving
careers, but caregiving forces them to miss work, cut 
back to part-time, take less demanding jobs, choose 
early retirement, or give up work altogether. As a 
result, in 2002, Alzheimer’s disease cost American 
business an estimated $36,500,000,000 in lost pro-
ductivity, as well as an additional $24,600,000,000 
in business contributions to the total cost of care. 
TITLE I—INCREASING THE FED-
ERAL COMMITMENT TO ALZ-
HEIMER’S RESEARCH 
SEC. 101. DOUBLING NIH FUNDING FOR ALZHEIMER’S DIS-
EASE RESEARCH. 
(a) IN GENERAL.—For the purpose of conducting 
and supporting research on Alzheimer’s disease (including 
related activities under subpart 5 of part C of title IV of 
the Public Health Service Act (42 U.S.C. 285e et seq.) 
there is authorized to be appropriated $1,400,000,000 for 
fiscal year 2006, and such sums as may be necessary for 
each of fiscal years 2007 through 2010. 
(b) AGING PROCESS REGARDING WOMEN.—Section 
445H(b) of the Public Health Service Act (42 U.S.C. 
285e–10(b)) is amended by striking ‘‘2003’’ and inserting 
‘‘2010’’. 
(c) CLINICAL RESEARCH AND TRAINING AWARDS.—
Section 445I(d) of the Public Health Service Act (42
U.S.C. 285e–10a(d)) is amended by striking ‘‘2005’’ and 
inserting ‘‘2010’’. 
SEC. 102. PRIORITY TO ALZHEIMER’S DISEASE RESEARCH. 
Section 443 of the Public Health Service Act (42 
U.S.C. 285e) is amended—
(1) by striking ‘‘The general’’ and inserting 
‘‘(a) In General.—The general’’; and 
(2) by adding at the end the following: 
‘‘(b) PRIORITIES.—The Director of the Institute 
shall, in expending amounts appropriated under this sub-
part, give priority to conducting and supporting Alz-
heimer’s disease research.’’. 
SEC. 103. ALZHEIMER’S DISEASE PREVENTION INITIATIVE. 
Section 444 of the Public Health Service Act (42 
U.S.C. 285e–1) is amended—
(1) in subsection (d), by inserting ‘‘and train-
ing’’ after ‘‘conduct research’’; and 
(2) by adding at the end the following: 
‘‘(e) The Director of the National Institutes of 
Health shall, in collaboration with the Director of the In-
stitute, the directors of other relevant institutes, and with 
volunteer organizations and other stakeholders, undertake 
an Alzheimer’s Disease Prevention Initiative to—
‘‘(1) accelerate the discovery of new risk and 
protective factors for Alzheimer’s disease;
‘‘(2) rapidly identify candidate diagnostics, 
therapies, or preventive interventions or agents for 
clinical investigation and trials relating to Alz-
heimer’s disease; 
‘‘(3) support or undertake such investigations 
and trials; and 
‘‘(4) implement effective prevention and treat-
ment strategies, including strategies to improve pa-
tient care and alleviate caregiver burdens relating to 
Alzheimer’s disease.’’. 
SEC. 104. ALZHEIMER’S DISEASE CLINICAL RESEARCH. 
(a) CLINICAL RESEARCH.—Section 445F of the Pub-
lic Health Service Act (42 U.S.C. 285e–8) is amended to 
read as follows: 
‘‘SEC. 445F. ALZHEIMER’S DISEASE CLINICAL RESEARCH. 
‘‘(a) IN GENERAL.—The Director of the Institute, 
pursuant to subsections (d) and (e) of section 444, shall 
conduct and support cooperative clinical research regard-
ing Alzheimer’s disease. Such research shall include—
‘‘(1) investigating therapies, interventions, and 
agents to detect, treat, slow the progression of, or 
prevent Alzheimer’s disease; 
‘‘(2) enhancing the national infrastructure for 
the conduct of clinical trials;
‘‘(3) developing and testing novel approaches to 
the design and analysis of such trials; 
‘‘(4) facilitating the enrollment of patients for 
such trials, including patients from diverse popu-
lations; 
‘‘(5) developing improved diagnostics and 
means of patient assessment for Alzheimer’s disease; 
and 
‘‘(6) as determined appropriate by the Director 
of the Institute, the Alzheimer’s Disease Centers 
and Alzheimer’s Disease Research Centers estab-
lished under section 445. 
‘‘(b) EARLY
DIAGNOSIS
AND
DETECTION
RE-
SEARCH.—
‘‘(1) IN GENERAL.—The Director of the Insti-
tute, in consultation with the directors of other rel-
evant institutes and centers of the National Insti-
tutes of Health, shall conduct, or make grants for 
the conduct of, research related to the early detec-
tion and diagnosis of Alzheimer’s disease and of 
mild cognitive impairment or other potential precur-
sors to Alzheimer’s disease. 
‘‘(2) EVALUATION.—The research described in 
paragraph (1) may include the evaluation of diag-
nostic tests and imaging techniques.
‘‘(c) VASCULAR DISEASE.—The Director of the Insti-
tute, in consultation with the directors of other relevant 
institutes and centers of the National Institutes of Health, 
shall conduct, or make grants for the conduct of, research 
related to the relationship of vascular disease and Alz-
heimer’s disease, including clinical trials to determine 
whether drugs developed to prevent cerebrovascular dis-
ease can prevent the onset or progression of Alzheimer’s 
disease. 
‘‘(d) NATIONAL ALZHEIMER’S COORDINATING CEN-
TER.—The Director of the Institute may establish a Na-
tional Alzheimer’s Coordinating Center to facilitate col-
laborative research among the Alzheimer’s Disease Cen-
ters and Alzheimer’s Disease Research Centers established 
under section 445.’’. 
(b) 
ALZHEIMER’S
DISEASE
CENTERS.—Section 
445(a)(1) of the Public Health Service Act (42 U.S.C. 
285e–2(a)(1)) is amended by inserting ‘‘, and outcome 
measures and disease management’’ after ‘‘treatment 
methods’’. 
SEC. 
105. 
RESEARCH 
ON 
ALZHEIMER’S 
DISEASE 
CAREGIVING. 
Section 445C of the Public Health Service Act (42 
U.S.C. 285e–5) is amended—
(1) by striking ‘‘Sec. 445C. (a)’’ and inserting 
the following: 
‘‘SEC. 445C. RESEARCH ON ALZHEIMER’S DISEASE SERV-
ICES AND CAREGIVING. 
‘‘(a) SERVICES RESEARCH.—’’; 
(2) by striking subsections (b), (c), and (e); 
(3) by inserting after subsection (a) the fol-
lowing: 
‘‘(b) INTERVENTIONS
RESEARCH.—The Director 
shall, in collaboration with the directors of the other rel-
evant institutes and centers of the National Institutes of 
Health, conduct, or make grants for the conduct of, clin-
ical, social, and behavioral research related to interven-
tions designed to help caregivers of patients with Alz-
heimer’s disease and related disorders and improve patient 
outcomes.’’; and 
(4) in subsection (d) by striking ‘‘(d) the Direc-
tor’’ and inserting ‘‘(c) Model Curricula and Tech-
niques. —The Director’’. 
SEC. 106. NATIONAL SUMMIT ON ALZHEIMER’S DISEASE. 
(a) IN GENERAL.—Not later than 1 year after the 
date of enactment of this Act, the Secretary of Health and 
Human Services (referred to in this section as the ‘‘Sec-
retary’’) shall convene a summit of researchers, represent-
atives of academic institutions, Federal and State policy-
makers, public health professionals, and representatives of 
voluntary health agencies to provide a detailed overview 
of current research activities at the National Institutes of 
Health, as well as to discuss and solicit input related to 
potential areas of collaboration between the National In-
stitutes of Health and other Federal health agencies, in-
cluding the Centers for Disease Control and Prevention, 
the Administration on Aging, the Agency for Healthcare 
Research and Quality, and the Health Resources and 
Services Administration, related to research, prevention, 
and treatment of Alzheimer’s disease. 
(b) FOCUS AREAS.—The summit convened under 
subsection (a) shall focus on—
(1) a broad range of Alzheimer’s disease re-
search activities relating to biomedical research, pre-
vention research, and caregiving issues; 
(2) clinical research for the development and 
evaluation of new treatments for the disease; 
(3) translational research on evidence-based and 
cost-effective best practices in the treatment and 
prevention of the disease; 
(4) information and education programs for 
health care professionals and the public relating to 
the disease;
(5) priorities among the programs and activities 
of the various Federal agencies regarding such dis-
eases; and 
(6) challenges and opportunities for scientists, 
clinicians, patients, and voluntary organizations re-
lating to the disease. 
(c) REPORT.—Not later than 180 days after the date 
on which the National Summit on Alzheimer’s Disease is 
convened under subsection (a), the Director of National 
Institutes of Health shall prepare and submit to the ap-
propriate committees of Congress a report that includes 
a summary of the proceedings of the summit and a de-
scription of Alzheimer’s research, education, and other ac-
tivities that are conducted or supported through the na-
tional research institutes. 
(d) PUBLIC INFORMATION.—The Secretary shall 
make readily available to the public information about the 
research, education, and other activities relating to Alz-
heimer’s disease and other related dementias, conducted 
or supported by the National Institutes of Health. 
(e) AUTHORIZATION
OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section, 
such sums as may be necessary for each of fiscal years 
2006 through 2010.