Guideline for Alzheimer’s
Disease Management
California Workgroup on Guidelines
for Alzheimer’s Disease Management
Final RepoRt
2008
Supported by the State of California,
Department of Public Health
California Version © april 2008

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Guideline for Alzheimer’s Disease Management
California Workgroup on Guidelines for Alzheimer’s Disease Management
Final RepoRt
2008
Supported by the State of California, Department of Public Health
California Version © april 2008

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Acknowledgments
We grateful y acknowledge the members of the California Workgroup on Guidelines for
Alzheimer’s Disease Management for their efforts in updating this guideline. This effort would
not have been possible without their participation in the following work groups:
Executive Committee
Debra Cherry, PhD (Co-Director)
James Howard, MS
Brian Mittman, PhD
Alzheimer’s Association, Calif. Southland
California Department of Public Health
VA Greater LA Healthcare System at West LA
Freddi Segal-Gidan, PA, PhD (Co-Director)
Kathony Jerauld, MPH
Dodie Tyrrell, MA
USC ADRC & USC/ Rancho Los Amigos ARCC
California Department of Public Health
California Department of Public Health
Patrick Fox, MSW, PhD
Neal Kohatsu, MD, MPH
Barbara Vickrey, MD, MPH
UCSF Institute for Health & Aging
California Department of Public Health
UCLA Alzheimer’s Center
Carol Hahn, MSN, RN (Manager)
Kit Lackey
Alzheimer’s Association, Calif. Southland
California Department of Public Health
Assessment
Treatment
Patient and Caregiver Education and Support
Josh Chodosh, MD (Co-Chair)
Bradley Williams, PharmD (Chair)
Linda Hewett, Psy.D (Chair)
VA Greater LA Healthcare System/
USC School of Pharmacy
UCSF- Fresno Alzheimer’s Research Center
UCLA Division of Geriatrics
Cynthia Barton, RN, MSN, GNP
Cordula Dick-Muehlke, PhD
Laura Mosqueda, MD (Co-Chair)
UCSF ARCC
CAADS & Alzheimer’s Family Services Center
Program in Geriatrics,
Jeffrey Cummings, MD
Bunni Dybnis, MA, MFT, CMC
UCI School of Medicine
Mary S. Easton Center
National Assoc. of Professional Geriatric Care
Linda Aoyama, MD
for AD Research at UCLA
Managers & LivHome
Healthcare Partners Medical Group
Denise Feil, MD, MPH
Elizabeth Edgerly, PhD
Michael-Anne Browne, MD
VA Greater LA Healthcare System
Alzheimer’s Association, Northern Calif.
Blue Shield of California

at West LA
& Northern Nevada
Tony Kuo, MD, MSHS
R. Ron Finely, BS Pharm, RPh.
Dolores Gallagher-Thompson, PhD
Office of Senior Health,
UC School of Pharmacy,
Dept. of Psychiatry & Behavioral Sciences,
LA County Dept. of Public Health
Dept. of Clinical Pharmacy
Stanford University School of Medicine
Verna Porter, MD
James Hendrickson, MD
Kathleen Kelly, MPA
UCLA Department of Neurology
SCAN Healthplan
Family Caregiver Alliance
Lisa Yarick, MSW
Cheryl Phillips, MD
Helene Martel, MA
Kaiser Permanente
On Lok Lifeways
Care Management Institute, Kaiser Permanente
Jennifer Serafin, RN, GNP
Thomas A. Porter
Natl Conference of Gerontological
AARP
Reporting Requirements
Nurse Practitioners
Ramón Valle, PhD
Elizabeth Smalley, MD
San Diego State University
Fay Blix, JD (Chair)
National Academy of Elder Law Attorneys
Healthcare Partners Medical Group
Roberto Velasquez, MSG
Alex Sherriffs, MD
Alzheimer’s Association, San Diego/Imperial
Kit Lackey
California Department of Public Health
UCSF-Fresno
Alzheimer’s Research Center
Janet Morris, JD
Bet Tzedek Legal Services
Additional Acknowledgments
We sincerely acknowledge the efforts of the Guideline Project’s Research Associate, Randi Jones, JD for her
remarkable efforts compiling data for this review and drafting significant sections of the report. Thanks also go to
Mira Byrd, PharmD candidate for her valuable assistance in the revision of the drug therapy tables. Final thanks
to Amy Landers of the Alzheimer’s Association for the development of a dissemination plan for this guideline.

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pReFaCe
This report updates and expands the Guidelines for Alzheimer’s Disease
Management (California Workgroup on Guidelines for Alzheimer’s Disease
Management, 2002), which itself was a revision of the California Workgroup’s
original Guideline published in 1998. All of these documents were based upon
work begun by the Ad Hoc Standards of Care Committee of the Alzheimer’s
Disease Diagnostic and Treatment Centers (ADDTCs) of California (Hewett,
Bass, Hart, & Butrum, 1995) and were supported in part by the State of California,
Department of Health Services, and the Alzheimer‘s Association, California
Southland Chapter.
Purpose and Scope of This Report
More than 5 million Americans now have Alzheimer’s Disease (Alzheimer’s
Association, 2008), an increase of 25% since the previous version of this
Guideline was published. Alzheimer’s Disease destroys brain cel s, causing prob-
lems with memory, thinking, and behavior severe enough to affect work, family
and social relationships, and, eventual y, the most basic activities of daily living.
Alzheimer’s Disease gets worse over time, it is incurable, and it is fatal. Today it
is the seventh leading cause of death in the United States, and the fifth leading
cause for individuals 65 and older (Alzheimer’s Association).
Since the 2002 revision was completed, there has been an explosion of re-
search in the field, generating new insights into the progression, treatment, and
management of Alzheimer’s Disease. The revised Guideline and this report are
based in large part on a review of journal articles and meta-analyses published
after 2001, incorporating the results of this tremendous body of new work.
Most older adults—including those with Alzheimer’s Disease—receive
their medical care from Primary Care Practitioners (PCPs) (Cal ahan et al.,
2006), who may lack the information and other resources they need to treat
this growing and demanding population (Reuben, Roth, Kamberg, & Wenger,
2003). Nevertheless, PCPs should be able to provide or recommend a wide vari-
ety of services beyond medical management of Alzheimer’s Disease and comor-
bid conditions, including recommendations regarding psychosocial issues, as-
sistance to families and caregivers, and referral to legal and financial resources
in the community. Many specialized services are available to help patients and
families manage these aspects of AD, such as adult day services, respite care,
and skilled nursing care, as well as helplines and outreach services operated by
the Alzheimer’s Association, Area Agencies on Aging, Councils on Aging, and
Caregiver Resource Centers. This Guideline is intended to provide assistance to
PCPs in offering comprehensive care to patients with Alzheimer’s Disease and
those who care for them over the course of their illness.
Because the Guideline is intended for use by PCPs who will encounter
Alzheimer’s Disease in the course of their work, we use the word “patients”
throughout this report. However, it is important to recognize that the needs of
people with Alzheimer’s Disease and their families extend far beyond the realm
of medical treatment, and that PCPs will be called upon to provide a wide spec-
trum of information and resources to assist them in dealing with this challeng-
ing, sometimes overwhelming condition.

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New Information
The 2002 Guideline was written prior to the development and testing of
some new pharmacological agents, as well as numerous non-pharmacological
interventions designed to improve disease management and quality of life for
both Alzheimer’s Disease patients and their caregivers. Although some of these
treatment methods were already in use, few were supported by evidence of effi-
cacy from well-designed clinical trials. In many cases, this evidence now exists,
and it is discussed in the current revision.
A notable advance in pharmacological treatment of Alzheimer’s Disease
was the introduction of memantine (Namenda) in October 2003, a year after
release of the previous version of this Guideline. The first drug approved by the
U.S. Food and Drug Administration (FDA) for treatment of moderate to severe
Alzheimer’s Disease, memantine has become an important component of treat-
ment for many patients. The Treatment section includes two tables devoted to
its use.
In the ensuing 6 years, additional emphasis on other topics relevant to
the treatment of Alzheimer’s Disease, along with the needs of patients and their
families, has become apparent. These topics include, among others:
• the importance of cultural and linguistic factors
in Alzheimer’s Disease treatment;
• the conduct of legal capacity evaluations; and
• the special needs of early-stage and late-stage
patients and their families
The revised report includes much new material regarding these critical y
important subjects, as wel as updated references for many points discussed in
previous versions.
New Format
This version of the report also has been reformatted for convenience and
ease of use, with appendices containing copies of many of the assessment instru-
ments and forms cited in the text. Websites containing valuable resources for
both PCPs and patients are included, and the online version of the report con-
tains links to many of these resources.
As with the previous versions, the Guideline’s recommendations them-
selves were designed to fit on one page for handy reference and organized by
major care issues (assessment, treatment, patient and family education and sup-
port, and legal considerations). The revised and expanded report has been or-
ganized to conform to this layout. Each section deals with one of the four care
issues and provides an overview of the issue, followed by the care recommenda-
tions and a review of the literature supporting them. The language used through-
out the report reflects the strength of the supporting evidence, either “strong”
(e.g., randomized clinical trial) or “moderate.” In some instances, recommenda-
tions that are not evidence-based are nevertheless supported by expert opinion
and Workgroup consensus, and are labeled as such.

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taBle oF ContentS
page 7
Guideline Recommendations
page 9
assessment
page 19
treatment
page 37
patient and Family education and Support
page 45
legal Considerations
page 49
References
appendices

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Guideline for Alzheimer’s Disease Management
Monitor Changes
Reassess Frequently
Assess Capacity
Conduct and document an assessment
reassessment should occur at
assess the patient’s
and monitor changes in:
least every 6 months, and sudden
decision-making capacity
• Daily functioning, including feeding, bathing, dressing, mobility,
changes in behavior or increase in
and determine whether a
nt
toileting, continence, and ability to manage finances and medications
the rate of decline should trigger
surrogate has been identified.
• Cognitive status using a reliable and valid instrument
an urgent visit to the PCP.
Identify Culture & Values
• Comorbid medical conditions which may present with sudden
Identify Support
identify the patient’s and fam-
worsening in cognition, function, or as change in behavior
identify the primary caregiver and
ily’s culture, values, primary
• Behavioral symptoms, psychotic symptoms, and depression
assess the adequacy of family and
language, literacy level, and
A
SSESSME
• Medications, both prescription and non-prescription (at every visit)
other support systems, paying par-
decision-making process.
• Living arrangement, safety, care needs, and abuse and/or neglect
ticular attention to the caregiver’s
own mental and physical health.
• Need for palliative and/or end-of-life care planning
Develop Treatment Plan
Treat Behavioral Symptoms
Non-Pharmacological Treatment First
Develop and implement an ongoing
Treat behavioral symptoms and
IF non-pharmacological approaches prove
treatment plan with defined goals.
mood disorders using:
unsuccessful, THEN use medications,
nt Discuss with patient and family:
targeted to specific behaviors, if clinically
• Non-pharmacologic approaches, such
• Use of cholinesterase inhibitors, NMDA
indicated. note that side effects may be
as environmental modification, task
antagonist, and other medications, if
serious and significant.
simplification, appropriate activities, etc.
t
ME
clinically indicated, to treat cognitive
• Referral to social service agencies or
decline
Treat Co-Morbid Conditions
support organizations, including the
Provide appropriate treatment for
t
r
EA
• Referral to early-stage groups or adult
Alzheimer’s Association’s MedicAlert® +
day services for appropriate structured
comorbid medical conditions.
Safe Return® program for patients who
activities, such as physical exercise and
may wander
recreation
Provide End-of-Life Care
Provide appropriate end-of-life care,
including palliative care as needed.
Integrate Medical Care & Support
Discuss Diagnosis & Treatment
Discuss Stages
integrate medical care with education
Discuss the diagnosis, progression,
Discuss the patient’s need to make care
and support by connecting patient and
treatment choices, and goals of
choices at all stages of the disease
caregiver to support organizations for
alzheimer’s Disease care with the
through the use of advance directives
linguistically and culturally appropriate
patient and family in a manner
and identification of surrogates for
i
L
y
educational materials and referrals
consistent with their values,
medical and legal decision-making.
to community resources, support
preferences, culture, educational
AM
groups, legal counseling, respite care,
level, and the patient’s abilities.
Discuss End-of-Life Decisions
consultation on care needs and options,
Discuss the intensity of care and
and financial resources.
Involve Early-Stage Patients
other end-of-life care decisions with
A
tion & Support
Organizations include:
Pay particular attention to the special
the alzheimer’s Disease patient
A
tion & Support
needs of early-stage patients, involv-
and involved family members while
• Alzheimer’s Association
ing them in care planning, heeding
respecting their cultural preferences.
p
A
ti
E
nt & F
(800) 272-3900 www.alz.org
E
D
uc
• Caregiver Resource Centers
their opinions and wishes, and refer-
E
D
uc
(800) 445-8106 www.caregiver.org
ring them to community resources,
including the alzheimer’s association.
• or your own social service department
Planning
Capacity Evaluations
Elder Abuse
Driving

include a discussion of the
Use a structured approach
Monitor for evidence of and report
report the diagnosis
importance of basic legal and
to the assessment of patient
al suspicions of abuse (physical,
of alzheimer’s Disease
financial planning as part of
capacity, being aware of the
sexual, financial, neglect, isolation,
in accordance with
L
EGAL
the treatment plan as soon as
relevant criteria for particular
abandonment, abduction) to adult Pro-
California law.
possible after the diagnosis of
kinds of decisions.
tective services, long Term Care
alzheimer’s Disease.
ombudsman, or the local police
c
o
n
S
i
D
E
r
A
t
i
o
n
S
department, as required by law.
California Version © april 2008

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Guideline for Alzheimer’s Disease Management
Alzheimer’s Disease
This is the third edition of this Guideline for
and Its Impact
Alzheimer’s Disease Management. The
alzheimer’s Disease (aD) currently afflicts over
first was disseminated in 1998 and updated
5.2 mil ion americans, including an estimated
in 2002. in the current version there are four
200,000 patients under the age of 65. The
substantive changes:
number of those afflicted is increasing annual y
• The advent of a new class of medication
as the population continues to age. fol owing
(NMDA Antagonists) for the management of
the aging of the baby boomers, prevalence will
moderate to advanced AD
escalate rapidly and is expected to double by
• Support for a team approach (medical
2020. The burden on families and the health
and social support strategies) to quality
care system wil be substantial as one out of ev-
management of AD
ery eight baby boomers develops this disease.
• Strong evidence linking positive patient
About the Guideline
outcomes to caregiver education and support
This Guideline presents core care recommen-
• New evidence on management of the
dations for the management of alzheimer’s
disease in the very early and end stages
Disease. it assumes that a proper diagnosis
(see the recommendations below)
has been made using reliable and valid di-
agnostic techniques. The main audience for

the Guideline is primary care practitioners.
Early-Stage Recommendations
However, many of the activities recommended
Patients in early-stage aD have unique con-
in the Guideline do not require a physician and
cerns. aD may progress slowly in the early stage.
can be done by other members of the treatment
fol ow up two months after diagnosis and every
team (care managers, nurses, community sup-
six months thereafter. Pay particular attention to
port organizations) working closely with the pa-
the special needs of early-stage patients, involv-
tient and caregiving family. The recommended
ing them in care planning and referring them to
activities do not have to be done in one visit.
community resources. Discuss implications with
respect to work, driving, and other safety issues
The California Workgroup on Guidelines for Alzheimer’s
with the patient. initiate pharmacologic therapy
Disease Management, which consists of health-
early. recommend interventions to protect and
care providers, consumers, academicians
promote continuing functioning, assist with in-
and representatives of professional and vol-
dependence, and maintain cognitive health in-
unteer organizations, developed the Guideline
cluding physical exercise, cognitive stimulation
through a review of scientific evidence supple-
and psychosocial support.
mented by expert opinion when research has

been unavailable or inconsistent. an expanded
Late Stage and End-of-Life
companion document, providing more in-depth
Recommendations
background information, is available through
as the patient’s dementia worsens and the
the alzheimer’s association’s California web-
ability to understand treatments and partici-
site www.caalz.org.
pate in medical decision-making declines, care
shifts to focus on the relief of discomfort. The
advisability of routine screening tests, hospital-
ization, and invasive procedures, including ar-
Prepared by the
tificial nutrition and hydration, will depend upon
California Workgroup on Guidelines
for alzheimer’s Disease Management
previously discussed care plan and the sever-
april 2008
ity of the dementia. Predicting the end-of-life
for a patient with severe aD is difficult. referral
to hospice should be considered.
California Version © april 2008

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GuiDeline for AlzheiMer’s DiseAse MAnAGeMent
aSSeSSMent
Assessment: Daily Functioning
Careful and competent functional assessment enables
the PCP and family to determine how best to maximize pa-
tients’ independence (Ensberg & Gerstenlauer, 2005; Holmes
Overview
A
& Adler, 2005; Kane, Ouslander, & Abrass, 1994). Functional
ppropriate treatment goals and plans that meet all of the
assessment includes evaluation of physical, psychological,
patient’s needs can only be developed through compre-
and socioeconomic domains. Physical functioning may fo-
hensive assessment of the patient, the family, and the home
cus on basic activities of daily living (ADLs) that include
environment. This assessment should address the patient’s
feeding, bathing, dressing, mobility, and toileting (Kane et
comorbid medical conditions, functional status, cognitive
al.; Katz, 1983). Assessment of instrumental (or intermediate)
status, and behavioral symptoms, including possible psy-
activities of daily living (IADLs) addresses more advanced
chotic symptoms and depression. The assessment should also
self-care activities, such as shopping, cooking, and managing
address the patient’s support system and decision-making ca-
finances and medications. Standardized assessment instru-
pacity, and identify the primary caregiver who, in addition to
ments such as the Barthel (Mahoney & Barthel, 1965) or Katz
other family members, is a critical y important source of in-
(Katz, Down, Cash, & Grotz, 1970) indices (see Appendix A)
formation. The Primary Care Practitioner (PCP) should so-
can provide information on the patient’s capacity for self-
licit and consider caregiver and family input in post-diagnos-
care and independent living. Proxies or patient surrogates
tic treatment planning.
can complete a number of these instruments when necessary
(Bucks, Ashworth, Wilcock, & Siegfried, 1996; Byrni, Wilson,
Bucks, Hughes, & Wilcock, 2000).
Recommendations
The cognitive changes commonly associated with
• Conduct and document an assessment
Alzheimer’s Disease first impact both the instrumental and
and monitor changes in:
eventual y, the basic activities of daily living (Fitz & Teri,
• Daily functioning, including feeding, bathing,
1994; Monl au et al., 2007; Park, Pavlik, Rountree, Darby, &
dressing, mobility, toileting, continence, and
Doody, 2007). The initial assessment of functional abilities is
ability to manage finances and medications;
important to determine a baseline to which future functional
• Cognitive status using a reliable
and valid instrument;
deficits may be compared. Assessment of a patient’s living en-
• Comorbid medical conditions which may
vironment can identify environmental supports that may be
present with sudden worsening in cognition,
needed to maximize function, ensure safety, and minimize
function, or as change in behavior;
caregiver stress. It will also provide realistic goal setting and
• Behavioral symptoms, psychotic symptoms,
treatment planning information and allow early supportive
and depression;
interventions to be initiated (Ham, 1997).
• Medications, both prescription and
Recommendation: Conduct and document an assess-
non-prescription (at every visit);
ment and monitor changes in daily functioning, including
• Living arrangement, safety, care needs,
and abuse and/or neglect.
feeding, bathing, dressing, mobility, toileting, continence,
• Need for palliative and/or end-of-life
and ability to manage finances and medications.
care planning
• Reassessment should occur at least every 6
Assessment: Cognitive Status
months, and sudden changes in behavior or
Cognitive status should be reassessed periodical y to
increase in the rate of decline should trigger an
identify sudden changes, as well as to monitor the potential
urgent visit to the PCP.
beneficial or harmful effects of environmental changes, spe-
• Identify the primary caregiver and assess the
cific medications, or other interventions. Proper assessment
adequacy of family and other support systems,
requires the use of a standardized, objective instrument that
paying particular attention to the caregiver’s own
mental and physical health.
is relatively easy to use, reliable (with less variability between
different assessors), and valid (results that would be similar
• Assess the patient’s decision-making capacity
and determine whether a surrogate has been
to gold-standard evaluations). A number of brief assessment
identified.
instruments have been developed, enabling PCPs to adopt
• Identify the patient’s and family’s culture, values,
instruments that are appropriate to their practices and pa-
primary language, literacy level, and decision-
tient populations.
making process.
The Mini-Mental State Exam (MMSE) (Folstein,
Folstein, & McHugh, 1975) has become the most common-
ly used tool for cognitive assessment. However, it has been
criticized for the influence of education and language on an
individual’s performance (Escobar et al., 1986; Grigoletto,
CaliFornia VerSion © april 2008
9

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Document Outline

• guideline-cover.pdf
• Guideline-web.pdf
• Appendices-web.pdf
  • #1 Barthel Index.pdf
    • References
    • Copyright Information
• guideline-backcover.pdf

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