Social & Public Policy of Alzheimer's Disease in the United States

177 Pages·2019·2.02 MB·English

by  Robert H. Blank

SOCIAL & PUBLIC
POLICY OF
ALZHEIMER’S
DISEASE IN THE
UNITED STATES
Robert H. Blank
Social & Public Policy of Alzheimer’s Disease in the
United States
Robert H. Blank
Social & Public Policy
of Alzheimer’s Disease
in the United States
Robert H. Blank
Sarasota, FL, USA
ISBN 978-981-13-0655-6 ISBN 978-981-13-0656-3 (eBook)
https://doi.org/10.1007/978-981-13-0656-3
Library of Congress Control Number: 2018944278
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To Robert M. Sade, MD, and the Institute of Human Values in Health
Care at the Medical University of South Carolina
P
reface
The inspiration for this book came from an invitation I received to partici-
pate in the Pitts Memorial Lectureship in Medical Ethics at the Medical
University of South Carolina in April 2017. I was asked to present a public
policy perspective on Alzheimer’s disease. At the time, I knew little about
Alzheimer’s, but had written extensively on health and biomedical policy,
including three books on brain policy. At the lecture, I learned much
about the medical, ethical, social, and other aspects of AD from the other
panelists, but it became clear that to date much less attention has been
given to the policy dimension.
With further exploration, I found that although there is a huge scien-
tific and social literature and voluminous self-help and narrative books on
AD, the literature on public policy is considerably more limited. Recently
there have been many extensive commission and government reports,
including thorough studies from various AD associations, that include the
political and social aspects and provide excellent sources for information
and data, but they tend to be unwieldy. This book attempts to fill this void
and provide a readable overview of the social policy issues of AD and other
dementias. It synthesizes perspectives on wide range of issues raised by AD
as reflected in research funding, professional association reports and guide-
lines, commission reports, regulations, and laws.
Because of my long-standing interest in cross-national policy, I feel that
it is crucial to include the policies of countries other than the United
States. Although much of the current published AD policy work has a
US/European focus, recently there has been increasing activity on the
global impact of AD that underscores the considerable variation among
vii
viii PREFACE
countries as to how proactive they have been in dealing with it as well as
widespread differences in the perception of AD and how best to treat
affected individuals. Therefore, although this book concentrates on the
public policy and political aspects of AD in the United States, it includes
some coverage of the global dimensions and AD policies in other coun-
tries where appropriate.
Sarasota, FL, USA Robert H. Blank
c
ontents
1 Alzheimer’s Disease and Other Dementias: An Introduction 1
2 Public Policy Context: Funding and Policy Initiatives 27
3 The Alzheimer’s Marketplace 45
4 Caregivers, Long-Term Care, and Social Health 75
5 Public Health Approaches to Alzheimer’s Disease 101
6 End-of-Life Decision Making for Alzheimer’s Disease
Across Cultures 121
7 Alzheimer’s Policy: Future Directions 137
References 147
ix
a a
bout the uthor
Robert H. Blank, PhD (University of Maryland), is Adjunct Professor
of Political Science at the University of Canterbury in Christchurch, New
Zealand, and a research scholar at New College of Florida. He has been a
frequent guest professor at Aarhus University in Denmark and at National
Taiwan University in Taipei, Taiwan. His previous academic positions
include Chair of Public Policy at Brunel University in West London,
Professor and Associate Director of the Program for Biosocial Research at
Northern Illinois University, and Chair of Political Science at the University
of Idaho. He has held residential fellowships at Vanderbilt University,
Stanford University, Indiana University, and the Medical University of
South Carolina, and Fulbright Lectureships in Taiwan (1976–1977 and
2007) and New Zealand (1984). He has taught, lectured, and written
widely in the areas of comparative health policy, medical technology assess-
ment, genetic and reproductive policy, and neuroscience policy. Among
the many books he has written are Rationing Medicine, Regulating
Reproduction, Brain Policy, The Price of Life, Biology and Political Science,
Comparative Health Policy, 1st–5th editions, End of Life Decision Making:
A Comparative Study, Condition Critical, Governing Home Care,
Intervention in the Brain: Politics and Policy, and Cognitive Enhancement.
He was co-editor of The Palgrave International Handbook of Healthcare
Policy and Governance.
xi
CHAPTER 1
Alzheimer’s Disease and Other Dementias:
An Introduction
Abstract This chapter first discusses the definition of Alzheimer’s disease
(AD) and distinguishes it from other dementias. It illustrates how prob-
lematic it is to diagnose it precisely, in part because it is often mixed with
other types, but also because it can vary among individuals. The chapter
next examines the stages of AD and the accompanying symptoms at each
stage. It then turns attention to competing theories of the causes of AD
and to the range of frameworks for studying it. Although the disease
model is predominant in the literature, it is not without controversy. The
chapter then summarizes testing possibilities for AD, other forms of cog-
nitive impairment, and asymptomatic individuals at high risk of develop-
ing AD. Finally, it presents data on AD prevalence and deaths in the
United States and at the global level.
Keywords Alzheimer’s disease (AD) • Dementia • Mini Mental State
Examination (MMSE) • Stages of Alzheimer’s • Symptoms of Alzheimer’s
This chapter first discusses the definition of Alzheimer’s disease (AD) and
distinguishes it from other dementias. It illustrates how problematic it is
to diagnose, in part because it is often mixed with other types, but also
because it varies among individuals. The chapter next examines the stages
of AD and the symptoms at each stage. It then turns attention to competing
© The Author(s) 2019 1
R. H. Blank, Social & Public Policy of Alzheimer’s Disease in the
United States, https://doi.org/10.1007/978-981-13-0656-3_1