Alzheimer’s & Dementia 7 (2011) e51–e59

Alzheimer’s Disease Management Guideline: Update 2008Freddi Segal-Gidana,*, Debra Cherryb, Randi Jonesc, Bradley Williamsd, Linda Hewette,Joshua Chodoshf, for the California Workgroup on Guidelines for Alzheimer’s Disease

ManagementaUniversity of Southern California, Keck School of Medicine, Los Angeles, CA, USA

bAlzheimer’s Association, California Southland Chapter, Los Angeles, CA, USAcUniversity of Southern California, Los Angeles, CA, USA

dUniversity of Southern California, School of Pharmacy, Los Angeles, CA, USAeUniversity of California San Francisco–Fresno Alzheimer’s Research Center, Fresno, CA, USA

fVA Greater Los Angeles Healthcare System/David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

Abstract Background: Frequent review and update of guidelines are necessary for them to remain current and

*Corresponding au

E-mail address: se

1552-5260/$ - see fro

doi:10.1016/j.jalz.201

useful for clinical practices. This second revision of the postdiagnostic management of Alzheimer’sdisease (AD) guideline by the CaliforniaWorkgroup was prompted by significant advances in knowl-edge about appropriate care management, including pharmacologic and nonpharmacologic ap-proaches to treatment of the disease, accompanying behavioral problems, and functional decline.The focus remains explicitly on primary care, where the majority of it occurs for those with ADand other dementias.Methods: In all, 40 experts in dementia care were recruited from a variety of disciplines across Cal-ifornia. Four workgroups were created that reviewed recent research findings from a total of 569 pub-lications since 2002. The revised Guideline incorporates 305 new references, including 11 state andfederal laws, in addition to 78 references from the previous version.Results: The Guideline is divided into four sections that address postdiagnostic management: (1) as-sessment, (2) treatment, (3) patient and family education and support, and (4) legal considerationsassociated with AD. Significant revisions and changes in each area and the underlying research tosupport the recommendations are presented in this article. New topics related to early stage andend-of-life were identified and recommendations were developed for these specific populations.Conclusions: The Guideline recommendations provide a framework to inform and improve medicalcare for AD by primary health care providers.� 2011 The Alzheimer’s Association. All rights reserved.

1. Introduction

Alzheimer’s disease (AD) affects more than 5 millionU.S. citizens and their caregivers [1]. It is expensive, result-ing in substantially higher medical costs over the course ofthe disease compared with other patients of the same agebut without AD [2–4]. In 2005, an estimated 24.3 millionpeople had dementia, with 4.6 million new cases ofdementia each year (one new case every 7 seconds). Adoubling of the number of affected people is expectedevery 20 years, and it could reach up to 81 million by2040 [5]. Worldwide societal costs of dementia were

thor. Tel.: 562-401-6871; Fax: 562-803-6900.

galgi@usc.edu

nt matter � 2011 The Alzheimer’s Association. All rights r

0.07.005

estimated to be $315 billion in 2005 ($105 billion were forinformal care), which are certainly higher in 2010 [6].

Despite the availability of clinical practice guidelines,substantial deficits in quality of care of patients with ADcontinue to be reported. These include underdiagnosis[7–10], inappropriate use of psychoactive medications[11,12], under-reporting of abusive behavior toward theelderly population suffering from AD [13,14], and limitedaccess to and use of recommended institutional andcommunity resources [15,16]. Safety issues are infrequentlyaddressed, and there are only a few systematic proceduresin place to address concerns regarding persons with ADwho are driving, who are at risk for wandering or abuse, orwho have firearms at home [17]. Moreover, since the earlierpublication of these guidelines, we now know that

eserved.

F. Segal-Gidan et al. / Alzheimer’s & Dementia 7 (2011) e51–e59e52

systematic guideline-supported approaches to dementia carethrough care management result in reduced stress to thecaregiver and improvement in other psychosocial issues, inaddition to reduction in need for institutional care [18,19].

For guidelines to remain current and relevant, frequent re-view and updates are necessary. Significant advances in thepostdiagnostic management of AD have occurred since theCalifornia Workgroup’s original guideline was updated in2002 [20], prompting the need for this revision. These in-clude approval of the medication memantine by the U.S.Food and Drug Administration, widely publicized studieson antipsychotic use [21], a number of research reports onexercise benefits [22,23], and a growing body of publisheddata on care management in AD [18,19]. These recentlyrevised guidelines, like the original, are written forprimary care practitioners, as well as for patients and theirfamilies. However, the Guideline for Alzheimer’s DiseaseManagement is also a resource for administrators andpolicy makers who are working to improve the quality ofhealth care for those with dementia.

2. Methods

Experts from the State of California (academic researchand education, clinical practice, and administrative leader-ship) in one or more of the four content areas that formedthe structure of the previous Guideline (assessment, treat-ment, patient and family education and support, and report-ing requirements) were identified and invited to participateasWorkgroup members. An explicit attempt was made to in-clude all relevant disciplines, with representation fromacross the state.

A search of the published data was performed usingPubMed and PsycInfo databases, which was limited topeer-reviewed journals in English. Search terms included“Alzheimer” or “Alzheimer’s” plus “assessment,” “treat-ment,” “caregiver,” “capacity,” “elder abuse,” “primarycare,” “end-of-life,” “systematic review,” “early-stage,”“late-stage,” “meta-analysis,” and “guideline.” More than20,000 articles (PubMed search total 5 19,793; PsychInfosearch total 5 13,205) published between 2002 and 2007were identified. Additionally, the Cochrane Library Data-base of Systematic Reviews using the term “Alzheimer”identified 61 reviews. Links to related studies as well as ad-ditional studies by authors from the initial search, major re-search programs conducted by those authors, and otherreferences provided by members of the California Work-group were explored. Additional studies were located usingthe ancestry method (i.e., searching the references sectionsof studies from those described earlier in the text). Becauseof the large volume of published material, content reviewersfocused on reviews and meta-analyses, reports of relevantclinical trials, other intervention studies, and other guide-lines, published since 2002 and relevant to the content areaof that Workgroups. The Workgroup members discussedtheir reviews in multiple subgroup meetings and presented

their findings at an in-person meeting of all four subgroupstogether. Major areas needing revision were identified, rec-ommendations were discussed, and revisions to the previousGuideline were accepted and/or modified by consensus foreach of the four content areas. The four Workgroups devel-oped drafts of their respective sections for the full report,which were circulated among all the Workgroup membersfor review and editing in an iterative process which, afterseveral rounds, resulted in a consensus document. Duringthis period, members submitted additional articles not foundthrough the initial searches, which were incorporated insubsequent drafts where relevant.

3. Results

A total of 569 publications were reviewed (Table 1). Therevised Guideline incorporates 305 new references, includ-ing 11 state and federal laws, in addition to 78 referencesfrom the previous version.

The Guideline recommendations are based on the bestavailable evidence. When a thorough search turned up insuf-ficient or inconsistent data with respect to a specific aspect ofADmanagement, recommendations were made using expertopinion and Workgroup consensus, as described earlier inthe text.

The Guideline is divided into four sections that addresspostdiagnostic management. These include (1) assessment,(2) treatment, (3) patient and family education and support,and (4) legal considerations associated with AD. Significantrevisions and changes in each section are presented in thefollowing sections.

3.1. Assessment

Comprehensive assessment is the foundation of quality ofcare for affected patients and their families. The profound ef-fects of cognitive decline, along with the complexity ofco-occurring comorbid medical conditions, functional im-pairments, and behavioral and caregiver issues, demandthat while making assessments one must be careful and thor-ough so as to identify how best to address medical issues, im-prove quality of life, and maximize independence [24]. Theassessment section was revised to better address postdiag-nostic care, and includes a discussion of screening tools toevaluate the mental status of the patients. The need for care-ful assessment of comorbid conditions and the relationshipbetween cognitive changes and deterioration of comorbiddisease status has been highlighted. Behavioral assessmentand living arrangements, especially with respect to safety,medication management, end-of-life issues, and caregiverand capacity assessment, are other areas of focus. Finally,this section contains additional discussion on the frequencyof reassessment.

The Guideline recommends periodic cognitive reassess-ment using a reliable and valid tool. Although the Mini-Mental State Examination [25] is still commonly used, its

Table 1

Literature reviewed and incorporated into the guideline by work group section and literature type

Work group Assessment Treatment Patient and Family Legal Total/item type

Randomized control trials 0 25 5 0 30

Systematic reviews 1 23 1 0 25

Meta-analyses 0 6 4 0 10

Other reviews 42 36 37 2 117

Other studies 74 47 49 3 173

Guidelines 17 18 11 4 50

Miscellaneous other 10 2 6 15 33

Total references cited by

section (total reviewed)

144 (168) 157 (237) 113 (136) 24 (28) 438 (569)

NOTE. The 438 total references cited by section include duplications because of overlapping content in the total 383 references in the Final Guideline Report.

F. Segal-Gidan et al. / Alzheimer’s & Dementia 7 (2011) e51–e59 e53

limitations as a result of language and educational biases arewell known [26]. The recent commercial acquisition of thisinstrument as a proprietary tool has added to theadministration costs, motivating some to adopt otherscreening instruments. The final Guideline report includesa list of alternatives [27], and several instruments are pre-sented in Table 2.

The relationship between symptoms of comorbid diseaseand cognitive impairment is complex and dynamic. Achange in functional status may be inappropriately attributedto expectations of the decline. Medical conditions, present-ing either as a deteriorating preexisting condition or asa new medical problem, may not include typical signs andsymptoms but rather a worsening of cognition, delirium,and/or deterioration in function. Close monitoring of signsand symptoms, such as weight loss, behavioral change, or in-creased somnolence, is recommended for individuals with orwithout comorbid disease.

Table 2

Instruments of brief cognitive assessment

Name of instrument Number of items

time required

maximum score

Cognitive

BOMC 6 items

3 minutes

Maximum Score 5 28

Orientatio

CASI 25 items

15–20 minutes

Maximum Score 5 100

Attention

langua

MiniCOG 2 items

3 minutes

Maximum Score 5 5

Visuospat

MMSE 19 items

10 minutes

Maximum score 5 30

Orientatio

repetiti

MoCA 12 items

10 minute

Maximum score 5 30

Visuospat

abstrac

SLUMS 11 items

7 minutes

Maximum score 5 30

Orientatio

(Note:

Abbreviations: BOMC, Blessed Orientation Memory Concentration Test; CAS

Examination; MoCA, Montreal cognitive assessment; SLUMS, St. Louis Univers

An emphasis on medication prescription and administra-tion has been recently added to this version of the Guideline.The need to monitor medications (both prescription andnonprescription) is critical to the quality of care given themore recent recognition of the associated morbidity andmortality in older adults [28,29]. Thus, assessment andmonitoring for changes in medication use is recommendedfor every visit.

The Guideline now highlights the need to assess an indi-vidual’s living arrangements in the interest of understandingenvironmental supports and barriers to enhanced functionalindependence and reduced stress to the caregiver. Close at-tention to safety concerns will help structure an environmen-tal assessment. This assessment may also assist inidentifying potential neglect and/or abuse of elderly popula-tion with dementia. The Guideline includes risk factors(characteristics) for both caregivers and care recipients to as-sist the clinician in identifying possible abuse (Table 3).

functions assessed

n, concentration, short-term verbal recall

, mental manipulation, orientation, long-term memory, short-term memory,

ge, visual construction, word list fluency, abstraction and judgment

ial, executive functioning, short term recall (Note: Includes clock drawing)

n, registration, attention and calculation, short-term verbal recall, naming,

on, 3-step command, reading, writing, visuospatial

ial/executive functioning, naming, attention, repetition, verbal fluency,

tion, short-term verbal recall, orientation (Note: Includes clock drawing)

n, verbal recall, calculation, naming, attention, executive function

Includes clock drawing)

I, Cognitive Assessment Screening Instrument; MMSE, Mini-Mental State

ity Mental Status Examination.

Table 3

Risk factors for abuse of elderly care recipients

Characteristics of caregivers Characteristics of care recipients

Responsibility for dependent .75 years of age Physical or mental dependence on caregiver

Constantly lives with dependent Poor communication abilities

Inexperienced or unwilling to provide care Demanding and/or aggressive

Has overly high expectations of dependent Has abused caregiver in the past

Acts hostile, threatening, and/or aggressive Shows potentially provocative behavior

Has other care demands (e.g., spouse, children) Constantly lives with caregiver

Is subject to high external stressors Has history of hospitalization, especially falls

Isolation and lack of community support Is reluctant or unlikely to report abuse

History of mental health problems (especially clinical depression or anxiety) Becomes submissive, withdrawn, or depressed in presence of abuser

Poor physical health

History of alcohol or drug abuse

History of childhood abuse or neglect or family violence

Table 4

Nonpharmacological approaches for common behavioral symptoms and

mood disorders [38,39]

Behavioral symptoms Nonpharmacological interventions

Apathy Stimulation/activities

Simple tasks

Sleep disturbances Sleep hygiene practices

Stimulation during the day

(especially adult day services)

Reduction of excessive stimulation

and/or noise in the evening

Irritability/agitation Redirection

Breakdown of tasks into simple steps

Wandering Visual cues

Exercise

Safe places to wander

Enrollment in MedicAlert 1 Safe return

Mood disorders Exercise

Psychotic symptoms Reassurance

Distraction rather than confrontation

Removal of potential sources of confusion

(e.g., mirrors)

Eating/appetite

disorders

Offering simple, finger foods

Removal of distractions from dining area

Soothing music

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Caregiver assessment is an important addition to theGuideline. As with earlier versions, the critical need to iden-tify the primary caregiver and the adequacy of support forthat caregiver is emphasized. There is additional focus onthe health of the caregiver with greater appreciation of theincreased risk of serious illness [30], major depression[31], and higher mortality from caregiver strain [32].

Assessment of an individual’s capacity for decision-making is an important new component of the Guideline.“Capacity,” that is, one’s ability to make decisions, is distin-guished from “competency,” which is typically used as a le-gal term. Capacity is decision-specific and must be assessedeach time a decision by the individual with AD is needed.There is also evidence that objective cognitive testing canbe used to determine the ability to make decisions aboutmedical treatment [33]. The Guideline provides a list ofquestions to guide clinical assessment of their decision-making abilities.

There is little evidence to support how frequent patientsshould be reassessed. Thus, the Workgroup relied on a con-sensus recommendation that visit frequency be left to thediscretion of the practitioner, taking into account the pa-tient’s clinical status, as well as the skill and understandingof the caregiver but with minimum intervals at no less thanevery 6 months unless change in function, behavior, or clin-ical state warrants earlier reassessment. Consistent use ofstandardized instruments will guide clinicians in identifyingimportant changes over time.

3.2. Treatment

Medical research on pharmaceuticals, particularly cho-linesterase inhibitors, has included several clinical trialsand meta-analyses. Transdermal application of rivastigmineis now available with fewer adverse affects compared withoral rivastigmine [34]. A meta-analysis of cholinesterase in-hibitors used for at least 6 months showedmild improvementin cognition, daily function, and behavior [35]. Greater ef-fects regarding placement at a nursing home have beennoted, with a 20% reduction in placement at 25 months oftreatment [36]. Memantine, the only available N-methyl-D-

aspartate antagonist, is now approved by the U.S. Foodand Drug Administration for treatment of AD. When mem-antine is added to a cholinesterase inhibitor in patients withmoderate to severe impairment, an improvement may beseen in the behavior [37].

Nonpharmacologic therapy continues to be a mainstay ofAD treatment. The Guideline contains new information onthe use of nonpharmacologic treatment for behavioral symp-toms, including recommended activities to treat specificsymptoms (Table 4). Just as it is recommended that pharma-cologic treatments target specific behavioral symptoms, be-havioral approaches should also be similarly applied. Use ofnonpharmacologic approaches before pharmaceutical inter-ventions is further motivated by the potential for serious ad-verse effects with use of antipsychotic medications [40] aswell as their questionable effectiveness [41,42].

Table 5

Factors to consider in planning for end-of-life care [60]

Maximize options for comfort care through hospice referral

Avoid futile care and prolongation of the dying process

Discuss the benefits and risks of tube feeding

Review and simplify the patient’s medication regimen

Assess and respect the patient’s and family’s cultural values and preferences

F. Segal-Gidan et al. / Alzheimer’s & Dementia 7 (2011) e51–e59 e55

3.3. Patient and family education and support

Education and support services for both patients and fam-ilies affected by AD are critical for effective long-term man-agement of this progressive disease. The word “family”instead of the term “caregiver” has been used throughoutthis section so as to be more inclusive, reflecting the globaleffect that AD has on family members, even those notdirectly engaged in caregiving role.

Another new recommendation highlights the need to “dis-cuss intensity of care and other end-of-life decisions.” Knowl-edge and understanding of these issues is lacking among thegeneral population [43]. Primary care providers should givepatients and families sufficient information to make reason-able, informed decisions about medical treatments and otherissues [44,45]. Early in the course of the disease, thereshould be a discussion of values, preferences, and goalsrelated to death and dying, including the naming of healthcare proxies, and decisions about artificial nutrition and do-not-resuscitate orders [46,47].

3.4. Legal considerations

The section labeled in the previous Guideline version “re-porting requirements” has been renamed as “legal consider-ations” because the latter is considered to be broader inscope. Recommendations on reporting elder abuse of indi-viduals with dementia and driving by those with dementiawere retained. Two new specific recommendations regardingthe need for legal and financial planning and capacity eval-uations were added.

Because cognitive decline over time deprives patientswith AD of the ability to make decisions, major legal and fi-nancial decisions should ideally be made early in the courseof the disease. Providers of primary care should use theirunique position of trust and influence to convey the impor-tance of basic legal and financial planning and to make ap-propriate referrals for professional assistance [44]. As thedisease progresses, there may be times when a capacity dec-

Table 6

Support organizations and resources for Alzheimer’s disease patients and caregiv

Organization

Alzheimer’s Association

Alzheimer’s Disease Education and Referral (ADEAR) Center

Alzheimer’s Disease Research Centers of California

Area Agencies on Aging

Family Caregiver Alliance (Caregiver Resource Centers)

Eldercare Locator for Continuum of Services

laration is required before the patient’s chosen substitutedecision-maker can be authorized to act. A “structured ap-proach to the assessment of patient capacity” is recommen-ded, and guidelines for its application have been outlined.

3.5. New topic areas

A new recommendation focuses on the “special needs ofearly-stage patients,” recognizing that patients with earlyAD have unique concerns and issues. There is expert consen-sus that people with early-stage AD require a different ap-proach to care management than those in the moderate oradvanced stages of the disease [48,49]. With earlydetection and diagnosis, it is vital that the patient beincluded in decision-making. Affected individuals havemuch to gain from being involved in treatment planningand expressing their desires related to specific future plans[50]. Recent best practice guidelines for early-stage or newlydiagnosed patients recommend follow-up for 2 months afterdiagnosis, and every 6 months thereafter [51]. Efforts to di-agnose patients in earlier stages are supported by demon-strated benefits of earlier treatment. Early-stage ADpatients have shown improvements in cognition, mood,and behavior from cognitive stimulation [52], physical exer-cise [38,53–56], and psychosocial support [49,57].

Also new to the Guideline is a section on palliative andend-of-life care. As with other chronic diseases, treatmentgoals shift to relief of discomfort as the primary focus ascognitive function worsens. Weight loss from decreased ca-loric intake is a common and vexing problem for familiesand clinicians. Although a feeding tube is often considered,there is little evidence that this approach produces a clini-cally meaningful outcome or that it prolongs life [58,59].Primary care providers should initiate discussions of careoptions that maximize comfort while avoiding futiletreatments, taking into consideration the patient’s wishesand values (Table 5).

4. Discussion

Our approaches to postdiagnostic care for patients withAD continue to evolve. Motivation for revising the 2002 ver-sion of the Guideline grew directly from the growth in re-search, supporting both existing approaches and enhancedtreatments and strategies for postdiagnostic assessment andmanagement of AD. There are an increasing number of

ers

Telephone Website

1-800-272-3900 www.alz.org

1-800-438-4380 www.niapublications.org/adear

1-916-552-8995 www.dhs.ca.gov/alzheimers

1-800-510-2020 www.c4aging.org

1-800-445-8106 www.caregiver.org

1-800-677-1116

F. Segal-Gidan et al. / Alzheimer’s & Dementia 7 (2011) e51–e59e56

evidenced-based management approaches specific to ADcare [60]. These include care management, exercise, andnonpharmacological approaches to behavioral management.Primary care providers have access to several organizationsfor assisting patients and caregivers in need of education andsupport (Table 6). The increased attention on AD and its in-creasing prevalence may explain, in part, why more patientsare being diagnosed at earlier stages than when this Guide-line was last revised. Thus, primary care physicians havegreater opportunities for treatment earlier in the course ofthe disease.

Recent studies have demonstrated considerable gaps inquality of care for patients with AD and for their familiesand caregivers [39]. A key step to addressing quality defi-ciencies is the development of clinical guidelines. For prac-titioners, guidelines may be useful as decision-supportresources, particularly in areas of clinical uncertainty.Guideline development may be the initial activity for devel-oping performance measures to facilitate clinical practiceimprovements. However, guidelines only have utility whenpractitioners, health care plan administrators, and policymakers directly apply this information to patient care. Addi-tionally, clinical guidelines that are published in an easily ac-cessible form, such asWeb-based posting (this guideline canbe found at www.alz.org), can be important for patients’ andfamilies’ self-care strategies as well as for advocating for im-proved medical care.

The 2008 Guideline for Alzheimer’s Disease Manage-ment is intended to assist the primary care practitioner inproviding medical management to affected patients, manag-ing psychosocial issues, and making appropriate referrals tolegal and financial resources within the community. TheGuideline can also serve as an educational resource to estab-lish a standard of care, to improve continuity of care, and toraise provider and consumer awareness of the special con-cerns of patients with AD and their families.

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Appendix

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