TIPS AND TRICKSBuild on elements from the Uniform Data Set recommendations for neuropsychological, functional, and behavioral assessment to assess dementia outcomes
| Domain assessed | Assessment instrument |
| Cognition | |
| General cognitive | Mini-Mental State Examination |
| verbal recall | Wechsler Memory Scale-Revised Logical memory IA immediate |
| Delayed verbal recall | Wechsler Memory Scale-Revised Logical memory IA delayed |
| Attention | Digit span forward and backward |
| Executive function | Trailmaking test-part B |
| Psychomotor speed | Trailmaking test-part A Wechsler Adult Intelligence Scale, revised digit symbol |
| Language | Category fluency (animals, vegetable) Boston Naming Test |
| Functional status | Functional Assessment Questionnaire |
| Behavioral assessment | Neuropsychiatric Inventory-Questionnaire Geriatric Depression Scale |
While the development of the UDS was mainly research driven, its goal of providing a common set of clinical observations to be collected over time serves as an established standard for discussing outcomes in dementia care at the clinical level. While the UDS does not provide for comprehensive evaluation across the full range of domains, building on this model to develop a clinically relevant set of outcome measures for use in day to day practice will encourage quality improvement in dementia care. This chapter aims to describe some of the most commonly used, validated tools that may be used for tracking dementia outcomes across domains in the clinical setting, and to further highlight the role tracking outcomes may play in dementia care in the future.
Cognition
Cognitive decline is the archetypal feature of all neurodegenerative dementias and is the source of other dementia-related problems. A full cognitive assessment, as part of the mental status examination, is the central element of a dementia work-up and subsequent follow-up over time. Initial assessment across cognitive areas, including memory, executive function, language, visuospatial skills, and praxis, is useful for differential consideration of dementia diagnosis and to understand a patient’s particular cognitive strengths and weaknesses. Following diagnosis, degree of cognitive impairment provides an indicator of disease progression and response to interventions. There are a number of standardized cognitive examinations that aid in quantifying cognitive impairment. Many of these brief cognitive assessments were initially developed as screening tools for dementia or mild cognitive impairment (MCI) and not necessarily as rating scales (i.e. outcome measures) to assess progression of cognitive decline. Some scales may not be adequate or comparable for assessing non-Alzheimer’s dementias. However, their reliability, convenience, and ability to provide a composite score that can be followed over time have led to their widespread use as outcome indicators in clinical settings.
Mini-Mental State Examination
The MMSE was originally designed to provide a brief, standardized assessment of mental status that would differentiate between organic and functional disorders in inpatient psychiatric patients, but has since become the most widely used brief cognitive assessment in dementia care. It is a 30-point scale assessing orientation (10 points), registration (3 points), attention and calculation (5 points), recall (3 points), and language (9 points). Administration time is typically about 10 min. In patients with dementia of the Alzheimer’s type (AD), scores typically decline by 2–3 points per year, whereas frontotemporal dementia (FTD) patients decline at a rate as high as 6–7 points per year.
SCIENCE REVISITED- Mini-Mental State Exam (total score = 30)
2–3 point decline in AD
6–7 point decline in FTD
- Montreal Cognitive Assessment (total score = 30)
2–3 point decline in AD
- Alzheimer’s Disease Assessment Scale-Cognitive subscale (total score = 70)
4–6 point increase in AD, with slower decline in early and late stages
- Neuropsychiatric Inventory (total score = 144)
2–3 point increase in AD
- Clinical Dementia Rating Scale-Sum of Boxes score (total score = 18)
1–2 point increase in AD
The widespread use of the MMSE over many years has the advantage of allowing comparisons across institutions or with historical patient records. The MMSE has been translated into a number of languages. Limitations include ceiling and floor effects, in which patients with high premorbid intelligence or education may not display impairment and patients with severe cognitive impairment score at the bottom of the range despite worsening dementia, respectively. Education-adjusted norms should be used for this reason. It is not particularly sensitive to MCI and also has limited use in assessing frontal-subcortical cognitive deficits. Additional testing may be needed to assess these areas.
Of note, the MMSE was copyrighted in 2001 and the official version must be ordered and paid for through Psychological Assessment Resources, Inc, which may make the test too costly for some settings.
Montreal Cognitive Assessment (MoCA)
The MoCA is a brief screening tool originally designed for detection of MCI. The total possible score is 30 points. It assesses various cognitive domains: attention and concentration (6 points), executive functions and conceptual thinking (4 points), memory (5 points), language (5 points), visuoconstructional skills (4 points), and orientation (6 points). Administration time is approximately 10 min. A score of 26 or above is considered normal. The rate of change in AD has been shown to be comparable to the MMSE. The MoCA’s strength lies in its high sensitivity for both MCI and AD (90% and 100%, respectively). This makes it useful for screening and following patients with mild cognitive complaints who are not yet experiencing significant functional decline. In fact, due to some overlap in scores for MCI and AD, the suggested MoCA cut-off score is the same for both (<26), with the difference being accompanying functional decline in the case of AD. The MoCA can also be used in cases where cognitive impairment is suspected but the patient performs normally (>25) on the MMSE. The MoCA is available free at www.mocatest.org and has been translated into over 30 languages.
St Louis University Mental Status Examination (SLUMS)
Like the MoCA, the SLUMS was developed to be a more sensitive tool than the MMSE for detecting MCI. The SLUMS consists of 11 items, and measures aspects of cognition that include orientation (3 points), short-term memory (13 points), calculations (3 points), verbal fluency (3 points), working memory (2 points), and visuospatial ability (6 points, includes a clock draw). Scores range from 0 to 30, with scores of 27–30 considered normal in a person with a high school education. Scores between 21 and 26 suggest MCI, and scores between 0 and 20 indicate dementia. Administration time is typically about 7 min. Strengths of the SLUMS include the sensitivity to MCI, increased assessment of executive and visuospatial abilities compared to MMSE, and the use of two recall tasks, a five-word recall and a story recall. However, it is not as widely used as the MMSE and psychometric properties have not been as thoroughly validated. It is available free through the St Louis University medical school website.
CAUTIONAlzheimer’s Disease Assessment Scale-Cognitive subscale (ADAS-Cog)
The ADAS-Cog should be mentioned as it is the cognitive outcome measure most widely used in trials of antidementia medications. It consists of 11 subtests examining memory, language, and praxis but lacks adequate testing of attention and executive function. Total scores range from 0 to 70, with higher scores (≥18) indicating greater cognitive impairment. A four-point change on the ADAS-Cog at 6 months has been recognized as indicating a clinically important difference in cognitive performance in clinical trials. However, the measurement error of the instrument has been thought by some to limit its use for assessing disease progression over the short term. Furthermore, the administration time for the ADAS-Cog typically is typically 30-45 min, depending on the stage of the patient’s dementia, which may limit utility in the clinical setting.
Neuropsychological testing
Neuropsychological testing, as performed by a neuropsychologist, is an important tool employed in the diagnosis of dementia. It is useful for assessing deficits across multiple cognitive domains in a detailed manner. The resulting neuropsychological profile aids in differential diagnosis and formulation regarding what type of dementia is affecting a patient. In most cases it is not necessary to repeat a full neuropsychological battery later in the disease course as brief, less intensive assessments are adequate for tracking dementia. However, detailed neuropsychological outcomes may be useful in cases where further questions arise regarding the specific dementia profile displayed by the patient. Furthermore, while initial neuropsychological testing is mainly concerned with assessing deficits, later testing may be useful in assessing patient strengths, which may be called upon in developing an optimal treatment plan. The detailed information offered by a full battery of neuropsychological tests will also be important in assessing outcomes as improved cognition-sparing treatments are developed in the future. (The Tips and Tricks box includes the baseline neuropsychological battery recommended for the National Institute on Aging Consortium to Establish a Registry for Alzheimer’s Disease.)
TIPS AND TRICKS- Montreal Cognitive Assessment: www.mocatest.org
- St. Louis University Mental Status Exam: http://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf
- Functional Assessment Questionnaire: www.alz.washington.edu/NONMEMBER/UDS/DOCS/VER1_2/b7.pdf
- Quality of Life-AD: www.dementia-assessment.com.au/quality/QOL_handout_guidelines_scale.pdf
- Neuropsychiatric Inventory: http://npitest.net/
- Geriatric Depression Scale (Short Form): www.stanford.edu/~yesavage/GDS.english.short.html
- Zarit Burden Interview: www.aafp.org/afp/2000/1215/p2613.html#afp20001215p2613-f1
- Revised Memory and Behavior Problem Checklist: www.alz.org/national/documents/C_ASSESS-RevisedMemoryandBehCheck.pdf
- Clinical Dementia Rating Scale (free for individual and clinical use; training and resources): http://alzheimer.wustl.edu
Functional abilities
Functional abilities, including instrumental activities of daily living (IADLs) and activities of daily living (ADLs), are assessed along with cognition to determine dementia severity and stage. A patient’s ability to independently carry out daily activities affects quality of life for both the patient and caregiver, and ultimately may determine whether costly institutionalization is needed. Furthermore, tracking functional outcomes is important in cases where there is potential for rehabilitation. There are numerous scales in existence to assess degree of disability and independence, but some have not been validated in dementia populations or include other domains in the assessment (i.e. behavioral problems), which may skew functional assessment. The oldest and most widely used scales to assess functional ability are as follows.
Lawton Instrumental Activities of Daily Living Scale
This instrument assesses how a patient is functioning across eight domains, including using a telephone, shopping, food preparation, housekeeping, laundry, mode of transportation, responsibility for medications and ability to handle finances, providing an 8-point score with a higher score indicating better functioning and more independence. Traditionally, men were scored on only five of the domains, with housekeeping, food preparation, and laundry excluded. This is a brief and convenient scale, but has the disadvantage of relying on self- or caregiver report, which may lead to under- or overestimation of deficits.
The Katz Index of Independence in Activities of Daily Living
The Katz ADL ranks adequacy of performance in the six functions of bathing, dressing, toileting, transferring, continence, and feeding. It is scored from 0 to 6, with higher scores indicating better function. It is convenient and allows communication about function between providers, but has limited sensitivity to small degrees of change over time.
(Pfeffer) Functional Assessment Questionnaire (FAQ)
The FAQ consists of 10 items that assess functional activities including writing checks, paying bills, and keeping financial records; assembling tax or business records; shopping alone; playing games of skill; making coffee or tea; preparing a balanced meal; keeping track of current events; paying attention and understanding while reading or watching a TV show; remembering appointments, family occasions, and to take medications; and traveling out of the neighborhood or arranging transportation. Scores are based on information from an informant. Each element is scored on a scale from 0 (normal) to 3 (dependent). Overall scores range from 0 to 30 points, where higher scores indicate more functional impairment.
Quality of life
Over the past 20 years there has been a paradigm shift away from symptomatic medical treatment toward a more patient-focused model of care, in which overall well-being is paramount. This shift led to increased focus on quality of life (QoL), with resulting efforts to measure it in research and clinical practice. Lawton’s model of QoL laid the groundwork for these scales by highlighting the multidimensional nature of QoL, requiring the need for both subjective and objective assessment of four main dimensions: behavioral competence, perceived QoL, psychological well-being, and environmental quality. What constitutes QoL continues to be a topic of debate, and attempts to quantify and measure a concept that is largely subjective and individual has led to a number of QoL rating instruments for various populations. Tailoring QoL measurements for assessment of dementia patients presents a specific set of issues to consider.
Quality of life in dementia is itself multifaceted and changes throughout the course of the disease. While patients with early dementia may experience high levels of autonomy related to their activities and environment, their psychological capacity, behavioral control, and environment may be drastically different in later stages. Many dementia QoL measures are stage specific for this reason. The ability of patients with progressive cognitive decline to accurately assess and report on their quality of life has also been questioned, leading to the use of caregiver report for a number of scales. Lastly, operational definitions of QoL in dementia can blur into other domains, such as function or neuropsychiatric symptoms. Clarification of which elements should be included in the potentially broad concept of QoL will be important for reliably tracking outcomes in this area. The following are a few of the most commonly used instruments for measuring QoL in dementia.
Alzheimer’s Disease-Related Quality of Life (ADRQL)
The revised 40-item ADRQL assesses behaviors across five domains: social interaction (12 items), awareness of self (eight items), feelings and mood (12 items), enjoyment of activities (four items), and response to surroundings (four items). It involves a structured interview of a caregiver (formal or informal) by a trained interviewer or clinician. The overall score is determined as a percentage of 0 to 100, with higher scores reflecting higher quality of life. It was developed with the goal of assessing QoL response to therapeutic interventions for patients with AD across stages of disease and across various care settings.
Cornell-Brown Scale for QoL in Dementia (CBS)
The CBS is a 19-item scale developed on the premise that high QoL as it relates to dementia is indicated by the presence of positive affect, physical and psychological satisfaction, and self-esteem, and the relative absence of negative affect and experiences. It is administered by a clinician with combined input from both the patient and caregiver. Each item is scored from -2 to 2, with total scores of -38 to +38. Negative scores indicate poorer QoL and positive scores indicate better. Lower CBS QoL scores have been correlated with more severe dementia.
Quality of Life-Alzheimer’s Disease (QoL-AD)
The QoL-AD consists of 13 items assessing mood, physical health, memory, relationships, self- esteem, and living situation. It uses combined information from both the patient and the caregiver, although they are assessed separately. Each item is rated on a four-point scale, with 1 being poor and 4 being excellent. Total scores range from 13 to 52. It generally takes about 15 min to administer, with the caregiver section requiring about 5 min and the patient section about 10 min to complete.
Neuropsychiatric symptoms
Neuropsychiatric symptoms are a defining characteristic of dementias, with up to 90% of dementia patients developing behavioral or psychological disturbance over the course of their illness. The symptoms experienced may include agitation, physical aggression, depression (with or without suicidal behavior), hallucinations, delusions, disinhibition and sexually inappropriate behavior, anxiety, apathy, and disturbances of appetite and sleep. Each dementia type has a typical neuropsychiatric symptom profile, but patients with any neurodegenerative illness may experience the range of symptoms. Furthermore, different symptoms may become more prominent at different stages of illness. To optimally address neuropsychiatric symptoms in dementia, they must be identified early and accurately, and outcomes should be followed over the course of the disease.
Assessing neuropsychiatric outcomes is instrumental in dementia care. These symptoms diminish quality of life for the patient and caregiver, increase financial costs and institutionalization, and worsen disease prognosis. Ongoing assessment is necessary in order to ensure safety and offer timely intervention. Patients experiencing neuropsychiatric symptoms should be seen routinely at least every 3–6 months, but more frequently in the setting of severe or dangerous symptoms and following changes in treatment. Inpatient psychiatric hospitalization should be considered in cases where the patient poses harm to themselves or those around them. The effect that neuropsychiatric symptoms have on caregivers should be considered in the assessment. A number of instruments have been developed to identify and track neuropsychiatric symptoms in dementia. Scales are available to conveniently assess global neuropsychiatric symptoms in dementia, as well as for tracking individual symptoms or sets of symptoms.
Neuropsychiatric Inventory (NPI)
The NPI is the instrument most widely used to assess global psychopathology in people with Alzheimer’s disease and other dementias. It utilizes caregiver report to examine recent neuropsychiatric symptoms across 12 domains, including delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, aberrant behaviors, nighttime behaviors, and appetite changes. It provides scores for both symptom “frequency” and “severity,” with a total resulting “frequency × severity” scores range from 0 to 144, with higher scores indicating greater psychopathology. It also incorporates a “distress” score to indicate how distressing a particular symptom is for the caregiver on a five-point scale. The NPI is useful in characterizing symptom profiles in specific neurodegenerative illness, and is sensitive to change in relation to treatment. As it was first developed to assess neuropsychiatric symptoms in the inpatient setting, it is clinically oriented. There is also an NPI-NH designed specifically to elicit information from formal caregivers in the nursing home setting and an NPI-Q version which is specifically used for assessing neuropsychiatric symptomatology in clinical practice settings. Both have been validated against the original NPI. The full version takes approximately 15 min to administer. It has the advantage of widespread use and has been translated into a number of languages.
Geriatric Depression Scale (GDS)
Depression is a common manifestation in nearly all forms of dementia. The GDS is a depression assessment tool commonly used in the clinical setting. The original form consists of 30 “yes” or “no” questions in reference to mood symptoms over the past week. A short version consisting of 15 questions has been developed and is now more common in clinical practice. The GDS is based on patient self-report, which limits utility in patients with moderate-to-severe dementia. However, its brevity and the simplicity of dichotomous answer choices make it easy to understand and administer to patients with mild-to-moderate dementia. Administration time for the short form is about 5–7 min. Scores of 0–4 are considered normal; 5–8 indicate mild depression; 9–11 indicate moderate depression; and 12–15 indicate severe depression. While the GDS is useful for screening and tracking depression symptoms, it is not a substitute for diagnostic interview by a mental health professional. It does not assess for suicidality.
Caregiver burden
Dementia affects not only individuals suffering from the illness but also the people caring for them. The majority of individuals with dementia are cared for at home by family members, with an estimated 15 million Americans providing unpaid care for a person with dementia. The concept of caregiver burden has come to encapsulate the emotional, physical, social, and financial burdens experienced by caregivers. Caregiver burden is high in those caring for dementia patients. As a group, caregivers experience higher levels of anxiety and depression, poorer physical health, and shortened life. Caregivers may become patients themselves because of the emotional and physical decline they experience, making caregiver distress a major public health issue. This distress continues even after a loved one with dementia is placed in a nursing facility, as many caregivers continue to provide emotional support and help with day-to-day care, as well as participating in medical, end-of-life and legal decision making. Interventions that lower caregiver distress have been shown to improve outcomes for caregivers themselves, as well as improving quality of life and delaying nursing home placement for those receiving care, all of which have major implications for healthcare costs and society.
The caregiving experience in dementia is complex and can be affected by a multitude of factors, including but not limited to depression and anxiety, cultural and ethnic background, other obligations of the caregiver (children, employment), the stage of the patient’s dementia, family conflict, and the caregiver’s own level of functioning. Efforts to incorporate interventions and track outcomes related to caregiver distress into clinical practice should take these factors into consideration. Available interventions typically consist of education, support groups, respite care, family therapy, individual therapy, or some combination of these. It is hoped that the development of new pharmacological treatments that slow or prevent cognitive deterioration will result in lower aggregate levels of caregiver burden over time. Various tools have been developed to assess and track levels of distress in those who care for individuals with dementia. It is important to utilize measures that incorporate psychological, physical, psychosocial, and financial aspects of caregiver burden into assessing outcomes.
Zarit Burden Interview
The Zarit Burden Interview was developed to measure subjective burden among caregivers of adults with dementia. The 22-item revised version is the instrument most widely used for assessment of caregiver burden in dementia research (the original version is 29 items and a short version is 12 items). It is completed by caregiver report. Each question is scored on a five-point scale from 0 (never) to 4 (nearly always present). Total scores range from 0 (low burden) to 88 (high burden). Items assess experiences regarding emotional state, health, finances, social life, and interpersonal relations.
Revised Memory and Behavior Problem Checklist (RMBPC)
The RMBPC consists of 24 caregiver report items inquiring about observable behavioral and memory problems in dementia patients and caregivers’ reaction to these problems in the previous week. If the caregiver indicates that a particular problem has occurred, they then rate the degree of distress experienced due to the behavior on a five-point scale from 0 (not at all) to 4 (extremely). Scores range from 0 to 96, with higher total scores indicating greater behavioral burden. It provides a total score plus scores for three subscales: memory-related problems, affective distress, and disruptive behaviors. The RMBPC has been validated for use with ethnically diverse caregivers in several studies.
Caregiver time-based assessments
One method for assessing caregiver burden is to utilize time spent on caregiving activities as a surrogate measure. Caregiver time includes time spent assisting an individual with dementia with IADLs, ADLs, behavioral problems, and other dementia-related needs. These scales have the advantage of quantifying the time requirements of caregiver burden in a way that allows the financial impact of both formal and informal caregiving activities to be calculated. Time-based methods are sensitive to change in cognitive function. Their disadvantages include a decreased ability to capture the subjective distress of the caregiver and dependence on caregiver recall for reporting, which may result in bias. An example of time-based caregiver burden scales is the Caregiver Activities Time Survey.
Global assessment
Global measures in dementia utilize information across domains to provide an overall impression of disease severity or to detect change in disease progression. Instruments for global dementia assessment are usually based on a semi-structured interview with the patient and a caregiver. They have the advantage of taking into account a breadth of information across domains, and unlike performance-based measures, these instruments provide information on clinically meaningful disease progression based on “real-world” outcomes. Global scales that assess severity of dementia provide a standard by which to communicate about a patient’s dementia stage, but due to the heterogeneity among dementia patients, may not be particularly useful in appreciating effects of treatment or predicting illness course. On the other hand, a number of global dementia measures assess disease-related change. These scales are more useful for assessing response to treatment over time. Global assessments do not offer the sensitivity to small changes in specific domains provided by more specific assessments. Initial clinical global impression instruments were simple, unstructured scales that were found to inadequately detect treatment-related change. However, more structured, complex instruments have been developed over the past 20 years.
Clinical Dementia Rating Scale (CDR)
The CDR is a global assessment instrument that clinically stages the severity of cognitive-functional impairment in dementia. It involves a semi-structured interview with both patient and caregiver, with an estimated administration time of 40–75 min. It provides both a global score and a sum of boxes (SB) score. The global score uses an algorithm to transform ratings across six domains (memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care) into a categorical staging of disease severity (none, questionable, mild, moderate, or severe). The SB score can range from 0 to 18 (0–3 points in each domain), with higher scores indicating greater impairment. More recently, it has been proposed that using the continuous CDR-SB scores to stage dementia severity offers advantages over using the global score, including easier calculation and increased precision in tracking changes over time. The amount of time required for administration of the CDR may be a disadvantage in the clinical setting.
Alzheimer’s Disease Cooperative Study-Clinical Global Impression of Change (ADCS-CGIC)
The ADCS-CGIC is a seven-point categorical scale that provides a single global rating of change from baseline. It utilizes both direct observation of the patient and interview of an informant in order to observe change in the patient’s cognitive, functional, and behavioral performance. Scores range from 1 to 7, with a score of 1 indicating marked improvement, a score of 7 marked worsening, and a score of 4 no change. As with other CGI scales, an overarching assumption is that the rater is a skilled clinician.
Hospitalizations, Nursing Home Placement, and Mortality
The number of people with Alzheimer’s disease and other dementias will continue to grow as the world’s population ages, with an estimated 115 million people expected to have Alzheimer’s disease by 2050. This presents a major public health concern given the increased morbidity associated with dementia. The total cost of caring for patients with Alzheimer’s disease in the US in 2011 was $183 billion, and it has been estimated that caring for patients with Alzheimer’s disease costs Medicare 60% more than treating those without dementia. The increased costs to society and the increased suffering experienced by dementia patients make working to improve outcomes in terms of hospitalizations and nursing home placement a crucial pursuit in healthcare. While tracking these outcomes is generally done through large epidemiological studies, reviewing the current knowledge about morbidity and mortality outcomes in dementia provides perspective on how quality improvements in the domains discussed earlier in the chapter may also improve “downstream” outcomes related to hospitalization, nursing home placement, and mortality.
Related posts:
Diagnosis and Differential Diagnosis of Dementia
An Approach to the Problem of Normal Pressure Hydrocephalus
Ethical, Legal, and Social Issues in Dementia
Depression: Cause or Complication of Cognitive Decline?
After the Diagnosis: Continuing Neurological Care of the Outpatient with Dementia
Using Psychotropic Medications to Manage Problem Behaviors in Dementia
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