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Recognition and Assessment
Guideline Overview No. 19
Background
Dementia is a syndrome in which progressive deterioration in
intellectual abilities is so severe that it interferes with the
person's usual social and occupational functioning. An estimated
5 to 10 percent of the U.S. adult population ages 65 and older is
affected by a dementing disorder, and the incidence doubles every
5 years among people in this age group.
Alzheimer's disease is the most common form of dementia in the
United States. It and related dementias affect at least 2
million, and possibly as many as 4 million, U.S. residents.
Despite its prevalence, dementia often goes unrecognized or is
misdiagnosed in its early stages. Many health care professionals,
as well as patients and family members, mistakenly view the early
symptoms of dementia as inevitable consequences of aging.
Some disorders that result in dementia are "reversible or
potentially reversible," which means that they can be
treated effectively to restore normal or nearly normal
intellectual function. Among the most frequent reversible causes
of dementia are depression, alcohol abuse, and drug toxicity. In
elderly persons, drug use—particularly drug interactions
caused by "polypharmacy" (simultaneous use of multiple
drugs)—is a common cause of cognitive decline. Depression
also is an underdiagnosed condition in this population.
The majority of dementias, including Alzheimer's disease, are
considered nonreversible. Even for these conditions, correct
diagnosis of the problem in its early stages can be beneficial.
Correct recognition can prevent costly and inappropriate
treatment resulting from misdiagnosis, and give patients and
families time to prepare for the challenging financial, legal,
and medical decisions that may lie ahead. In addition, many of
the nonreversible dementias such as Alzheimer's disease include
symptoms that can be treated effectively (for example,
incontinence, wandering, depression).
According to the National Institute on Aging, an estimated $90
billion is spent annually for Alzheimer's disease alone, and the
noneconomic toll is incalculable. Although State and local
governments and the Federal Government bear some of the economic
burden, largely through Medicare and Medicaid, a substantial
proportion is borne by families that provide unpaid care. Changes
caused by dementia may advance relentlessly over many years,
creating not only deep emotional and psychological distress but
practical problems related to caregiving that can overwhelm
affected families.
Addressing the Problem
In 1992, the Agency for Health Care Policy and Research, a
Federal Government agency within the Public Health Service,
convened a panel of private-sector experts to develop a clinical
practice guideline on screening for Alzheimer's disease and
related dementias. This topic was selected because:
- Dementia in the adult population is a serious and growing
medical, social, and economic problem.
- Alzheimer's disease and related dementias exact a massive
toll in health care costs, disability, and lost
productivity of both patients and family caregivers.
- Early symptoms of dementia are commonly overlooked,
mistakenly attributed to normal aging, or misdiagnosed.
- Failure to diagnose early-stage dementia can result in
needless and possibly harmful treatment.
After extensive literature searches and meta-analyses, the
panel decided to focus on early detection of dementia in persons
exhibiting certain characteristics or triggers that signal the
need for further assessment, rather than recommend general
screening of segments of the population, such as those over a
certain age. The panel made this decision after concluding that:
- No evidence exists to support recommending some of the
most frequently used screening tests over others.
- None of the tests has a high sensitivity for early or
mild dementia.
- No evidence supports the efficacy of a general screen for
Alzheimer's disease or related dementias, given the lack
of unequivocally effective treatment and the difficulty
of recognizing early dementia.
The panel subsequently limited its scope specifically to the
subject of recognition and initial assessment and therefore did
not address differential diagnosis, management, or treatment
issues after diagnosis.
Principal Objective
The panel's principal objective was to increase the likelihood
of early recognition and assessment of a potential dementing
illness so that (1) concern can be eliminated if it is not
warranted; (2) treatable conditions can be identified and
addressed appropriately; and (3) nonreversible conditions can be
diagnosed early enough to permit the patient and family to plan
for contingencies such as long-term care.
Specifically, the panel's goals were to:
- Improve the detection of Alzheimer's disease and related
dementias in their early stages in persons exhibiting
certain signs and behaviors.
- Educate health professionals, patients, and their
families about symptoms that suggest the need for an
initial assessment for a dementing disorder.
- Identify areas for further research on early recognition
of dementia.
Findings
The panel's major findings include:
- Certain triggers should prompt a clinician to undertake
an initial assessment for dementia rather than attribute
apparent signs of decline to aging.
- An initial clinical assessment should combine information
from a focused history and physical examination, an
evaluation of mental and functional status, and reliable
informant reports. It also should include assessment for
delirium and depression.
- An assessment instrument known as the Functional
Activities Questionnaire is a particularly useful
informant-based measure in the initial assessment for
functional impairment.
- Among effective mental status tests, the Mini-Mental
State Examination, the Blessed
Information-Memory-Concentration Test, the Blessed
Orientation-Memory-Concentration Test, and the Short Test
of Mental Status are largely equivalent in discriminative
ability for early-stage dementia.
- Clinicians should assess and consider factors such as
sensory impairment and physical disability in selection
of mental and functional status tests, and other
confounding factors such as age, educational level, and
cultural influences in interpretation of test results.
In asymptomatic persons who have possible risk factors (e.g.,
family history and Down syndrome for Alzheimer's disease), the
clinician's judgment and knowledge of the patient's current
condition, history, and social situation (living arrangements,
support services, isolation) should guide the decision to
initiate an assessment for dementia.
Initiating an Assessment
For a diagnosis of dementia, current criteria in the
Diagnostic and Statistical Manual of Mental Disorders, Fourth
Edition (DSM-IV), require evidence of decline from previous
levels of functioning and impairment in multiple cognitive
domains, not solely memory. Because evidence of decline in
previous abilities is critical in establishing dementia, a
personal knowledge of the patient is invaluable to the clinician
in assessing symptoms and interpreting results of an initial
assessment for dementia.
A focused history is critical in the assessment for dementia.
It is particularly important to establish the symptoms' mode of
onset (abrupt versus gradual); progression (stepwise versus
continuous decline; worsening versus fluctuating versus
improving), and duration.
A focused physical examination, including a brief neurological
evaluation, is an essential component of the initial assessment.
Special attention should be placed on assessing for those
conditions that cause delirium, since delirium represents a
medical emergency. During the focused physical examination,
health care providers should be alert to signs of abuse and
neglect of patients by caregivers and report suspected abuse to
the proper authorities.
Informant reports (information obtained from family members or
caregivers) can supplement information from patients who have
experienced memory loss and may lack insight into the severity of
their decline. Health care providers, however, should consider
the possibility of questionable motives of informant reports,
which may exaggerate, minimize, or deny symptoms.
Brief mental status tests can be used but they are not
diagnostic. They are used to (1) develop a multidimensional
clinical picture; (2) provide a baseline for monitoring the
course of cognitive impairment over time; (3) reassess mental
status in persons who have treatable delirium or depression on
initial evaluation; and (4) document multiple cognitive
impairments as required for a diagnosis of dementia.
Assessing for Depression
Depression can be difficult to distinguish from dementia, and
it can coexist with dementia. Changes in memory, attention, and
the ability to make and carry out plans suggest depression, the
most common psychiatric illness in older persons. Marked
visuospatial or language impairment suggests a dementing process.
The clinical interview is the mainstay for evaluating and
diagnosing depression in older adults. Two self-report
instruments with established reliability and validity are the
Geriatric Depression Scale (GDS) and the Center for
Epidemiological Studies Depression Scale (CES-D).
Interpreting Findings
Three results are possible from the combination of findings
from assessments of mental and functional status: (1) normal, (2)
abnormal, and (3) mixed.
When results of both mental and functional status tests are
normal and there are no other clinical concerns, reassurance and
suggested reassessment in 6 to 12 months are appropriate. If
concerns persist, referral for a second opinion or further
clinical evaluation should be considered.
When both mental and functional status tests yield findings of
abnormality, further clinical evaluation should be conducted.
However, a laboratory test should not be used as a screening
procedure or part of an initial assessment. Laboratory tests
should be conducted only after (1) it has been confirmed that the
patient has impairment in multiple domains that is not lifelong
and represents a decline from previous levels of functioning; (2)
delirium and depression have been excluded; (3) confounding
factors such as educational level have been considered; and (4)
medical conditions have been be ruled out.
Mixed results—abnormal findings on the mental status test
with no abnormalities in functional assessment or vice
versa—call for further evaluation. For example:
- Patients who have abnormal results on only the mental
status test require more complete testing. Results that
indicate possible neuropsychiatric or systemic
neurological problems call for referral to an appropriate
specialist.
- Patients who have declining function but normal mental
status test results require either (1) further
neurological evaluation for systemic neurological
diseases or (2) psychiatric or psychological evaluation
if evidence suggests depression or other emotional
problems.
The Role of Neuropsychological Testing
Neuropsychological tests can examine performance across
different domains of cognition. This broad battery of tests can
help in identifying dementia among persons with high premorbid
intellectual functioning, discriminating patients with a
dementing illness from those with focal cerebral disease, and
differentiating among certain causes of dementia.
The Importance of Followup
Followup, with assessment of declining mental function, may be
the most useful diagnostic procedure for differentiating
Alzheimer's disease from normal aging. For this reason, the
mental status test should be repeated over a period of 6 to 12
months. In cases of referral, it is important to make sure that
test results and medical records follow the patient from the
specialist back to the referring clinician.
Key Points About Alzheimer's Disease
For Health Care Providers
- Although changes in memory or cognition may accompany
normal aging, significant impairment and disability are
not a part of normal aging.
- It is important for clinicians, as well as patients and
family members, to recognize symptoms that should trigger
an initial assessment for dementia.
- Some causes of dementia can be treated effectively to
eliminate or greatly improve cognitive performance.
- Among older persons, depression and interactions from
multiple medications are two common and highly treatable
causes of dementia symptoms.
- An initial assessment for dementia can (1) lead to
effective treatment of causes; (2) prevent unnecessary
and possibly harmful treatment resulting from
misdiagnosis; and (3) avoid the trauma of a diagnosis of
dementia or Alzheimer's disease where it does not exist.
- The prolonged course of deterioration found in many
dementias takes a major emotional, psychiatric, and
physical toll among family members and caregivers.
- Learn more about symptoms that may indicate early-stage
dementia and how to conduct an initial assessment. Read Recognition
and Initial Assessment of Alzheimer's Disease and Related
Dementias, Clinical Practice Guideline No.
19, and use its companion Quick Reference Guide for Clinicians. Give the Consumer Version to
patients, family members, and other caregivers.
For Patients
- Dementia is different from normal aging. Only certain
tests can show that difference. Symptoms that suggest
Alzheimer's disease or a related dementia should be
brought to the attention of the family's health care
provider as soon as possible.
- Some memory and other problems can improve or disappear
with appropriate treatment.
- Although there is not yet a clearly effective treatment
for Alzheimer's disease, resources are available to help
patients and families cope with this condition and
prepare for the future.
- Order the consumer booklet, Early Alzheimer's Disease: Patient and Family Guide from the U.S. Government's Agency for Health Care Policy
and Research. It provides information about the early
stages of Alzheimer's disease and similar illnesses. It
also includes a list of resources where readers can find
out more about the medical, financial, and social support
services that are available in their communities.
- The Agency for Health Care Policy and Research also has a
Clinical Practice Guideline and a Quick
Reference Guide for health care providers about early
identification of Alzheimer's disease and other forms of
dementia.
Symptoms That Might Indicate Dementia
Does the person have increased difficulty with any of the
activities listed below? Positive findings in any of these areas
generally indicate the need for further assessment for the
presence of dementia.
- Learning and retaining new information. For example: is
more repetitive; has more trouble remembering recent
conversations, events, appointments; more frequently
misplaces objects.
- Handling complex tasks. For example: has more
trouble following a complex train of thought, performing
tasks that require many steps such as balancing a
checkbook or cooking a meal.
- Reasoning ability. For example: is unable to
respond with a reasonable plan to problems at work or
home, such as knowing what to do if the bathroom flooded;
shows uncharacteristic disregard for rules of social
conduct.
- Spatial ability and orientation. For example: has
trouble driving, organizing objects around the house,
finding his or her way around familiar places.
- Language. For example: has increasing difficulty
with finding the words to express what he or she wants to
say and with following conversations.
- Behavior. For example: appears more passive and
less responsive; is more irritable than usual; is more
suspicious than usual; misinterprets visual or auditory
stimuli. In addition to failure to arrive at the right
time for appointments; the clinician can look for
difficulty discussing current events in an area on
interest and changes in behavior and dress. It might also
be helpful to follow up on areas of concern by asking the
patient or family members relevant questions.
Guideline Development
The Agency for Health Care Policy and Research convened an
18-member private-sector, interdisciplinary panel composed of
psychologists, psychiatrists, neurologists, an internist,
geriatricians, nurses, a social worker, and consumer
representatives. The panel conducted extensive literature
searches to identify empirical studies of assessment of mental
status instruments for differentiating persons with and without
dementia and instruments used in the assessment of persons with
Alzheimer's disease. It conducted additional literature searches
related to assessment of functional impairment and risk factors
for dementia and conducted meta-analyses. The panel also held a
public hearing to give interested organizations, individuals, and
agencies an opportunity to present oral or written testimony for
the panel's consideration.
The results of the literature reviews and meta-analyses were
used to develop a draft guideline. Copies were distributed for
two peer review cycles. Reviewers were selected to represent a
broad range of disciplines and clinical practice areas. A total
of 109 reviewers submitted comments, which were collated and
reviewed by the panel co-chairs and used to develop the final
guideline.
Availability
Additional guideline information will be available later this
year (Winter 1996) in several forms:
- Clinical Practice Guideline, intended for the
health care provider, contains a discussion of the issues
and the panel's findings and recommendations, with
supporting evidence and references. It also includes a
series of tables and a flow chart summarizing the panel's
recommended approach to early recognition and initial
assessment of suspected dementia.
- Quick Reference Guide for Clinicians, also
intended for health care providers, is a brief summary of
and companion piece to the Clinical Practice Guideline.
It provides highlights of initial assessment and
interpretation of findings and presents the tables and
flow chart.
- Consumer Version, published in English and
Spanish,
is a brochure for patients, their families, and
the general public that describes the problem, outlines
procedures for identifying dementia in its early stages,
and provides resource information for those who must deal
with a diagnosis of probable Alzheimer's disease or a
related dementia.
To obtain further information on the availability of the Quick
Reference Guide or Consumer Version, call the AHCPR
Publications Clearinghouse at (800) 358-9295.
Single and bulk copies of the Clinical Practice Guideline,
Recognition and Initial Assessment of Alzheimer's Disease and
Related Dementias, may be purchased, when available, from the
U.S. Government Printing Office by calling (202) 512-1800.
The Clinical Practice Guideline, Quick Reference Guide, and
Consumer Version will also be available on the Internet
through the AHCPR Home Page. You can access the guideline
products by using a Web browser, specifying the URL http://www.ahrq.gov/clinic/, and clicking on
Clinical Practice Guidelines Online.
AHCPR, a part of the U.S. Public Health Service, is the lead
agency charged with supporting research designed to improve the
quality of health care, reduce its costs, and broaden access to
essential services.
Current as of September 1996
AHCPR Publication No. 97-R123