Dulce M. Matamoros, MS, PhD, PA.
July 2012
In 2011, new recommendations from
the National Institute on Aging and the Alzheimer's Association created a new
landscape for clinicians, patients, and families to explore Alzheimer disease
(AD) Progress over the last 20-plus years, since the 1984 guidelines4 reorganized
our way of thinking about AD, has enabled us to segment the larger universe of
"related dementias" into well-defined entities. It has also given us
both drug and nondrug therapies to treat the disease, at least symptomatically. In
addition, we are offered preclinical scenarios and predisease states based on
new biomarkers and neurocognitive studies that have helped to define the entity
known as "mild cognitive impairment.
Progress in our understanding of AD
has led to the creation of this 3-pronged approach to describing the disease.
Biomarkers -- including neuroimaging, functional imaging, and target
histochemistries (such as beta amyloid plaques and neurofibrillary tangles) --
have allowed for this redefinition. Moreover,
we have begun to better understand clinical disease states by recognizing the
underpinnings of illness, including the preclinical disease burden, as well as
multiple risk factors, including genetic contributions. Several compounds are
now available to mark amyloid accumulation or identify neuronal degeneration.
Techniques for measuring brain volume have vastly improved over the past
decade, allowing us to identify neuronal loss as the most critical feature of
the symptomatic disease.
As the population ages, the risk
rates for AD climb, by age 85, the prevalence rate reaches nearly 50%, and
patients with AD live on average an additional 7 to 10 years after diagnosis. The public health and economic
implications are staggering. Nonetheless, our approach to AD and our desire to
diagnose and treat it has had mixed results. More
than 5.3 million Americans had AD in 2011.16 Even as far back as
2007, it was estimated that 2.55 million people were diagnosed and treated,
approximately 500,000 were diagnosed but received no treatment, and almost 2
million remained undiagnosed. Although there are multiple reasons for these
lapses, sophisticated screening and diagnostic testing are available but
underused, even in long-term care (LTC) environment.
The Minimum Data Set, Version 3.0
(MDS 3.0), released almost 2 years ago, was significantly updated to better
reflect the clinical condition of LTC-facility residents with AD, as well as
their needs, expressed in resident interviews with clinicians. Many of the
assessment instruments originated in clinical practice, including the
importation of the Patient Health Questionnaire-9 (PHQ-9) for mood assessment.
The MDS 2.0 assessment for cognition was rarely used for clinical care and
decision-making. It was replaced by the Brief Interview of Mental Status
(BIMS). Although the BIMS is not a
common outpatient tool for screening, it does an admirable job in the nursing
home. The BIMS assesses the resident's attention, orientation, and ability to
register and recall new information. Addressing these issues is part of the
rationale for the Centers of Disease Control and Prevention's (CDC's)
Health-Related Quality of Life initiative and has clinical and
care-planning utility. LTC providers should be mindful of the BIMS and
incorporate their findings, including mood and behavioral assessments, to
better serve the resident.
AMDA last updated its clinical
practice guideline (CPG) for dementia in 2009. The guideline focuses on
resident health throughout the LTC continuum, including assisted living. As
with all AMDA CPGs, it has sections on recognition, assessment, treatment, and
monitoring. Treatment of the behavioral manifestations of AD is fully reviewed,
including drug and nondrug interventions. The "triggers" of the
behavioral manifestations of AD are also reviewed. Another CPG is devoted to
delirium; however, in the context of dementia screening, delirium has long been
considered a medical emergency and must be dealt with first. The CPG for
delirium contains a detailed discussion of the risks and benefits of
prescribing atypical antipsychotics.
Clinical guidelines have never
recommended widespread screening for AD, and this remains the position of the
US Public Health Service. The difficulties arise in screening a younger
population with lower risk rates than a more elderly population with
significantly higher risk rates. At present, no screening measure has been
tested in the general population from age 65 forward to determine incidence and
prevalence of AD. One study
suggested that screening was not valuable -- even in an internal medicine
practice -- for patients who had already identified their need for healthcare.
Screening tests perform better
when the population being tested is at risk. A screening measure works best
when there is a high incidence and prevalence of disease to begin with. To
assist the primary care provider, the Alzheimer's Association has outlined 10
warning signs of AD and formulated a checklist that explains the signs
and lists typical age-related changes for comparison.
In LTC environments, it is important
to ensure a correct diagnosis at the time of admission. However, recently
hospitalized patients transferred to LTC who present with delirium may take 2
to 5 months or longer to recover from their clouded sensorium before an
underlying cognitive deficit can accurately be identified. Altered mental
states are addressed in 2 separate AMDA CPGs: one on delirium and another on
depression in the LTC setting. Clinicians need to sort out these problems to
the best of their abilities so that the specific disorder can be addressed
appropriately. Depression is often prevalent in patients with early dementia
who have preserved insight. Even in
the nursing home, a sense of loss can cause depressive symptoms that will
worsen the clinical status relating to dementia. Moreover, patients entering
the nursing home often have established functional and behavioral problems,
which may evolve over time.
Once delirium and depression have
been ruled out, other causes of dementia can be addressed and appropriate
treatment initiated. Of importance, patients should not receive
acetylcholinesterase inhibitors if they do not have AD. Patients taking an
acetylcholinesterase inhibitor without a diagnosis of AD should be evaluated
for diagnosis, and if AD is not responsible for their symptoms, the acetylcholinesterase
inhibitor should be discontinued. This is one situation where the off-label use
of drugs to treat non-AD dementia has been tested and found ineffective.
The importance of diagnostic
disclosure is that it provides the patient and family with a starting point for
care planning. Frank discussions reduce uncertainty, provide information on the
disease process, and help with staging and healthcare needs. Early
communication allows families and practitioners to initiate and maintain
appropriate therapies and establishes realistic treatment expectations. This
also encourages planning to address financial, legal, and medical issues. With
a dementia diagnosis in place, such a discussion also provides a framework for
consideration of housing options and environmental supports and for developing
a timeline for crossing from independence to dependence based on cognitive
capacities that are preserved or lost as the disease progresses. The
opportunity to address environmental changes that would benefit the patient is
also touted as important in the National Prevention, Health Promotion and
Public Health Council's National Prevention Strategy.
Our reluctance to pursue AD is
related more to our perceived inability to treat the disease than to the
sensitivity and specificity of diagnostic testing available today.[ Among Medicare beneficiaries, up to 13% aged
65 years and older have AD and other dementias. In 2009, 68% of all nursing
home residents had some degree of cognitive impairment, including 27% who had
very mild to mild cognitive impairment and 41% who had moderate to severe
cognitive impairment. In 2011, 47% of all nursing home residents had a
diagnosis of dementia recorded in their nursing home records. Families advocate
for a diagnosis, and about half of our patients welcome an opportunity to
advance their understanding of AD as well. However, clinicians are reluctant to
engage in such discussions because they are time-consuming, with little
perceived benefit in making a diagnosis sooner rather than later.
We must acknowledge that very little
has come from 30 years of AD research with regard to controlled trials of both
drug and nondrug interventions. Experienced clinicians should know that the
acetylcholinesterase hypothesis has been with us for over 30 years and that 3
drugs that impact acetylcholine breakdown are approved for AD therapy:
donepezil, galantamine, and rivastigmine. These
drugs have more utility in the early stages of disease, when we generally see
cognitive decline, with modest effects in the middle or functional stages of
disease, and little evidence to support the behavioral modification of AD. The
glutamate receptor antagonist memantine is approved for patients with moderate
to severe AD. Little information is available about the effects of nondrug
interventions for patients with AD. As part of its Effective Health Care
Program, the Agency for Healthcare Research and Quality (AHRQ) has conducted a
systematic review of the effects of various settings and interventions in LTC
on residents with dementia. The AHRQ particularly examined characteristics of
care facilities including such things as organizational characteristics
(population, staffing, etc), and care structures and processes. The agency's
findings, including the effects of nondrug interventions and care facility
characteristics, will be published later in 2012.
Patients and families often consider
a diagnosis of AD a matter of black and white. This is not the case: a patient
will retain as well as lose competencies. Preserving what a patient can still
do -- even in a skilled nursing facility or an assisted living center -- is
where much of our effort should be directed. A patient-centered approach
focuses on the glass being half full, not half empty. Quality of life is
measured by how well patients enjoy their lives and the environment around
them, not by the frustrations that are a constant reminder of what might have
been lost. What remains should be celebrated and will affect a resident's
well-being.
Establishing a diagnosis allows a
family to plan for the future. In this way, the number of care transitions can
be reduced, better decisions can be made, and retained abilities can be better
preserved. The fewer environmental transitions our elderly patients make once a
diagnosis is established, the better off they generally are. This includes
limiting hospitalizations, reducing hand-offs among family members, and
eliminating unnecessary moves from home to an assisted living facility, memory
care unit, or nursing home, when some of these steps are unlikely to be of
benefit. Reducing the impact of losing a spouse, recovering from an injury, or
having an intercurrent medical issue reduces the patient's ability to regain
his or her former level of function. Minimizing transitions is now a goal. This
philosophy of care affects a patient's well-being, especially when providers
consider the patient's physical environment, the organization of the LTC facility
in which the patient resides, and the psychosocial needs of the patient.
In up to 80% of cases where dementia
is diagnosed, given the appropriate age of the patient and a history of disease
progression that spans 2 to 3 years, the underlying cause is AD. When
in doubt, confirmation that the patient has no other significant medical
illnesses (such as Parkinson disease, cardiovascular disease, history of
stroke) causing the decline, plus psychometric testing, use of Diagnostic
and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV-TR)
criteria (Table), and MRI, should clinically confirm an AD diagnosis.[59] We
must be mindful not to fall into the trap of ordering cerebrospinal fluid
examinations, positron emission tomography scans to detect amyloid plaques, or
functional tests for mildly impaired patients, since the overlap between normal
health and disease is still great. These tests distract clinicians, patients,
and families from approaching AD head-on, given our good understanding of the
diagnostic criteria for AD. Likewise, the clinician should avoid terms like
"mild cognitive impairment," "senility," or
"dementia" when a patient truly has AD.[ Although
our treatment options remain limited, an accurate diagnosis lets patient and
family appropriately prepare for the future, limits care-environment
transitions, and maximizes the patient's retained abilities.
Table. DSM-IV-TR Criteria for
Alzheimer Dementia
|
1. The development of multiple
cognitive deficits manifested by both:
2. The cognitive defects in each
cause severe impairment in social or occupational functioning and represent a
major decline from a previous level of functioning.
3. The course is characterized by gradual onset and continuing cognitive decline. 4. The cognitive deficits are not caused by any of the following:
5. The deficits do not occur exclusively
during the course of a delirium.
6. The disturbance is not better accounted for by another mental disorder (for example, major depressive disorder, and schizophrenia). |
DSM-IV-TR = Diagnostic
and Statistical Manual of Mental Disorders, 4th ed, text revision; HIV =
human immunodeficiency virus, adapted from the DSM-IV-TR. 2000: 154-158.
Too often, to soften or avoid a
time-consuming interchange with patient and family, the practitioner will give
the patient an incorrect diagnosis of mild cognitive impairment. Mild cognitive
impairment has its own diagnostic criteria. It is not to be confused with the
DSM-IV-TR criteria that we currently use to define dementia and AD. We must
also realize that a firm diagnosis of AD can be made based on the clinical
criteria. That is what DSM-IV-TR is for -- waiting for an autopsy to
confirm an AD diagnosis is just an excuse. Patients and families, as well as
clinicians, may need to be reminded that pathologic criteria used in the
research setting are not necessary to confirm the diagnosis of AD and move
forward with clinical care. In LTC, we should make an accurate, factual
diagnosis; discuss the risks and benefits of treatment with both drug and non-drug interventions; waste little time on the staging of disease (residents
are in a LTC facility because they are already experiencing functional and
behavioral decline); and provide compassionate, comprehensive care to the
patient and the family.
Mother Virgin Mary.