BetterConduct

Many studies for medication trials have used assessment instruments to determine the level of pain a dementia patient experiences.  Due to communication issues, more than one of these instruments may be used with input from various sources to try to determine the difference between cognitive and behavioral symptoms and to differentiate the effects of medication on each. 

 

The American Geriatric Society (2009) developed a list of six categories for determining if an elderly IWD is experiencing persistent pain.  A test utilizing these areas to assess pain was developed in 2003.  Called the Pain Assessment in Advanced Dementia Scale (PAINAD), this test measures five categories of pain assessment divided into three levels (Warden et al, 2003).  Categories include breathing independent of vocalization, negative vocalization, facial expression, body language, and consolability. The patient is observed during movement for 3-5 minutes and rated on a scale of 0 to 2 in each category.  The total score for each category is obtained:  a score of 1-3 would indicate mild pain, 4-5 moderate pain, and 7-10 severe pain.  The authors of the PAINAD note that these scores have not been “substantiated in the literature for this tool”.  It is important to note, however, that knowledge of the scale and its findings can still be useful in a discussion with a physician. The PAINAD can be completed by any caregiver.

 

Another assessment frequently used in medication trials to assess pain and its effect on BPSD is the BEHAVE-AD.  This is a rating scale developed to separate cognitive and functional levels from the behavioral and psychological aspects of AD.  Developed in 1986 by Barry Reisberg, MD and colleagues, the 25-item scale assesses 7 categories; each category is then rated on a 4-point scale for severity.  The information for the test is garnished from the caregivers regarding how often the symptom occurred during the previous 2 weeks. The seven categories are: 

            Paranoid and delusional ideation

            Hallucinations

            Activity disturbances – includes purposeless(?) activity like wandering or repetitive questioning

            Aggressiveness – physical, verbal, and agitation

            Diurnal rhythm disturbances – sleep issues such as frequent awakenings at night

            Affective disturbances – including depression

            Anxieties and phobias – fears about being alone, anxiety about upcoming events.

The four-point scale for severity indicates the symptom is not present (0), present (1), present with emotional component (2), and (3) present with an emotional and physical component.  In another version of the test, BEHAVE-AD-FW, a measurement of the frequency of the behaviors was added.  The occurrence of the behavior during the last two weeks is obtained from an independent 20-minute interview or caregiver report and rates the frequency of six of the 7 categories as occurring 1=once, 2=every several days, 3=daily, or 4=more than once daily. (The seventh category, Day-Night Disturbance, uses only the 3-point frequency rating as it cannot occur more often than ‘daily’.)  The BEHAVE-AD-FW is scored by multiplying the frequency score by the severity score on each item. This feature is important as it allows a comparison measure of the effects of treatment used or tested.  The clinician will know if the frequency -- not just the severity—of the symptom has decreased with the intervention applied.

 

The BEHAVE-AD-FW test premise is that the cognitive/functional symptoms are the same in each individual during the progression of the disease.  In a broad, general sense, this might be true; but each specific instance of AD is not predictable or patterned in its behavioral manifestations.  The authors do make a statement, however, that “All these symptoms demonstrate continued worsening with the advance of AD” (Reisberg et al. 1996).  Use of the BEHAVE-AD uncovered similarities in AD stages and linked them to behavioral occurrences.  For example, it was discovered that 40% of Alzheimer’s patients at GDS stage 5 have the specific delusion that others are stealing things.  Reisberg (1986) also determined that the fear of being left alone and anxiety for upcoming events are the most commonly occurring phobias/anxieties in AD.  Another finding of the BEHAVE-AD was the fact that there is a strong association between pain and aggression in AD.  There was a link between the severity of the pain and an increase in the frequency of aggressive behavior (Sampson et al, 2015). This same study showed the patient reported both fear and distress with pain at movement as well as at rest.    There was not as strong a correlation between anxiety and pain as there was with aggression and pain.  It was also found that treating depression in dementia did not decrease anxiety.

 

The author of the BEHAVE-AD also developed the Global Deterioration Scale (GDS) in 1982.  The GDS assesses cognitive function in 7 linear stages, including the most advanced stage of AD (stage 7) and GDS stage 2, a stage termed SCI.  SCI stands for Subjective Cognitive Impairment, which is believed to eventually develop into AD after a period of about 15 years (Prichep et al. 2006).  This stage occurs prior to the stage of MCI, Mild Cognitive Impairment, with its most common symptoms being tearfulness, anxiety about upcoming events, and phobias (Reisberg et al, 1989). Zero on the scale is the absence of dementia, or normal cognition. 

 

The BEHAVE-AD has been compared to the NPI, the Neuropsychiatric Inventory.  The NPI may distinguish different causes of dementia and includes the frequency and severity of symptoms for many conditions.  It takes 10 minutes to administer and assesses 10 domains (Cummings et al. 1994). The American Psychological Association explains the Neuropsychiatric Inventory (NPI) on its website as a survey for caregivers to assess dementia behaviors into 12 domains, which include delusions, hallucinations, agitation/aggression, dysphoria, anxiety, euphoria, apathy, disinhibition, irritability/lability, aberrant motor activity, night-time behavioral disturbances, and appetite and eating abnormalities  (Neuropsychiatric Inventory Construct:  Behavioral disturbances in dementia patients. (2018, July 9).  Retrieved from http://www.apa.org).  The last two domains were added in 1997 (Cummings, 1997).   The NPI has been shown to have content and test-retest validity and is available in 75 different languages and dialects. The NPI may be more helpful in identifying the presence of the symptom itself rather than its specific duration.  It is a broad-based test measuring additional symptoms that are not specific to AD, and item responses are not measured for frequency or severity.  The NPI has scales for other dementias and neuropsychiatric disorders, whereas the BEHAVE-AD has symptoms specific to AD. It is thought that measuring only the behaviors that occur specifically to AD will allow a clinical finding or result to be measured more clearly (Reisberg et al, 2014).  A few examples of areas measured by the NPI that do not occur in AD are Elation/Euphoria and Appetite/Eating Disorders.  These symptoms do occur in dementias other than AD. 

 

The Cornell Scale for Depression in Dementia is just what the title indicates—an assessment of mood in the presence of cognitive impairment.   It involves a 20-minute interview with the carer and 10 minutes with the client (Alexopoulos et al, 1988).

 

The Mini-Mental State Examination (MMSE) measures cognitive impairment and is administered by a trained interviewer in 10 minutes.  It can distinguish between those with depression, dementia, or a combination of the two, and is the most widely used measure of cognitive functioning (Folstein et al, 1975).  

 

The Seven-Minute Neurocognitive screening battery is another test of cognitive impairment designed to distinguish Alzheimer’s clients from normal controls.  It assesses 4 cognitive areas affected in AD: memory, verbal fluency, visuoconstruction (the coordination of fine motor skills with spatial abilities as when drawing a geometric figure), and time orientation (Burns et al, 2002).  

 

The Alzheimer’s Disease Assessment Scale (ADAS) is a standardized assessment used in pharmaceutical trials for measuring cognitive function.  It assesses 11 cognitive (memory, language, praxis or application) and 10 noncognitive aspects (mood state, behavioral changes).  It is administered by a trained observer (Rosen et al, 1984). 

 

The CDR, Clinical Dementia Rating, qualifies dementia into stages by assessing the domains of Memory, Orientation, Judgment and Problem Solving, Community Affairs, Home and Hobbies, and Personal Care.  It is completed by a clinician with detailed knowledge of the patient “and a reliable informant or collateral source” (Morris, 1993).  Ratings range from 0-non-impaired, to 0.5- ‘questionable’ dementia, 1-mild, 2-moderate, and 3-severe dementia (Berg, 1984).

 

The Cohen-Mansfield Agitation Inventory (CMAI) is a 10 to 15-minute assessment by a trained carer used to assess 29 agitated behaviors in dementia. The 29 behaviors are divided into 4 categories: physical/aggressive, physical/non-aggressive, verbal/aggressive, and verbal/non-aggressive.   Each behavioral item is rated on a 7-point frequency scale from 1 (never observed) to 7 (occurs several times an hour).   Examples of physical/non-aggressive behavior would be hiding or hoarding items, aimless wandering, disrobing, or intentional falling.  Verbal/non-aggressive examples include strange noises such as weird laughter or crying, negativism, repetitive questions, and constant unwarranted request for attention or help.  This test is predominantly used in nursing and residential homes (Cohen-Mansfield, 1989).

 

Several tests assess activities of daily living (ADL) in dementia.  ADL are selfcare and everyday tasks one performs in areas of personal care and household duties.  These tasks range from using the phone to dressing to managing money/bill paying.   As these skills deteriorate with the progression of dementia, it is believed they illustrate changes in cognition and overall functioning.  The Alzheimer’s Disease Functional Assessment and Change Scale (ADFACS) is a 20-minute survey used in drug trials that includes 10 activities such as performing household chores, using appliances, shopping, money, food preparation, mobility, hobbies and leisure, and the ability to understand and interpret situations.  These activities are in addition to self-care tasks such as toileting, dressing, grooming and personal hygiene, bathing, and physical ambulation (Galasko et al, 1997).

 

The Brief Psychiatric Rating Scale (BPRS) is a 16 item, 20-minute measurement of somatic concern, anxiety, emotional withdrawal, disorganization of concepts, guilt, tension, suspiciousness, hostility, unusual thought content, and several other psychiatric symptoms (Overall & Gorham, 1962).

 

Another test provides a formal diagnosis of psychiatric disorders (including paranoid disorder) as well as delirium, anxiety, depression, and four types of dementia through a combination of interview, observation, physical examination, medication notes, and informant input.  The Cambridge Mental Disorders of the Elderly Examination (CAMDEX) is widely used in research studies (Roth et al, 1986)

 

To assess the quality of life in dementia, the Quality of Life in Alzheimer’s Disease Patient and Caregiver Report (QoL-AD) can be used with input from both the patient and caregiver.  The test consists of 13 items rated on a 4-point scale regarding mood, memory, physical health, self-esteem, and the patient’s perception of his/her current situation in areas of relationships, energy level, and ability to do usual activities such as chores and recreation (Logsdon et al, 1999). 

 

Sources:

Alexopoulos G, Abrams R, Young R, et al (1988) Cornell Scale for Depression in dementia. Biological Psychiatry, 23, 271-284 (Medline).

 

Berg L. (1984) Clinical dementia rating (letter). British Journal of Psychiatry, 145, 339. (Medline)

(Morris JC.  The Clinical Dementia Rating (CDR): Current version and scoring rules.  Neurology 1993; 43:2412-2414. 

 

Burns A, Lawlor B, and Craig S. (2002) Rating scales in old age psychiatry. Br. J. Psychiatry, 180: 161-167.

 

Cohen-Mansfield J, Marx M, and Rosenthal A (1989) A description of agitation in a nursing home.  Journal of Gerontology, 44: M77-M84 (Medline).

 

Cummings JL.  The Neuropsychiatric Inventory:  Assessing psychopathology in dementia patients.  Neurology 1997;48: S10-S16.

 

Cummings J, Mega M, Gray K, et al (1994) The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44:2308-2314 (Abstract).

 

Folstein M, Fostein S, & McHugh P. (1975) Mini mental state: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12: 189-198. (Cross Reference)(Medline).

 

Galasko D, Bennett D, Sano M, et al (1997) An inventory to assess activities of daily living for clinical trials in Alzheimer’s disease. The Alzheimer’s disease co-operative study.  Alzheimer’s Disease and Associated Disorders, 11 (supl. 2), S33-39.

 

Logsdon R, Gibbons I, McCurry S. et al (1999) Quality of life in Alzheimer’s disease:  patient and caregiver reports.  Journal of Mental Health and Aging, 5 (1).

 

Morris, J. C. (1997). Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. International psychogeriatrics, 9(S1), 173-176.

 

Overall J, & Gorham D (1962) The brief psychiatric rating scale. Psychological Reports, 10: 799-812.

 

Prichep LS, John ER, Ferris SH, Rausch L, Fang Z, Cancro R, Torossian C, Reisberg B: Prediction of longitudinal cognitive decline in normal elderly with subjective complaints using electrophysiological imaging.  Neurobiol Aging 2006;27:471-481.

 

 

Reisberg B, Ferris HH, Crook T.  Signs, symptoms, and course of age-associated decline. In S. Corking et al (Eds.) Alzheimer’s disease:  A report of progress.  Aging, 1982; Vol. 19:177-181. New York: Raven Press.

 

Reisberg B, Ferris SH, Franssen E.  An ordinal functional assessment tool for Alzheimer’s-type dementia.  Hospital and Community Psychiatry, 1985;36(6):593-59.

 

Reisberg B, Franssen E, Sclan S, Kruger A, Ferris SH: Stage specific incidence of potentially remediable behavioral symptoms in aging and Alzheimer Disease: a study of 120 patients using the BEHAVE-AD. Bull Clin Neurosci 1989;54:95-112.

 

Reisberg B, Frannsen E, Bobinski M, Auer S, Monteiro I, Boksay I, Wegiel J, Shulman E, Steinberg G, Souren L, Kluger A, Torossian C, Sinaiko E, Wisniewski HM, Ferris SH: Overview and methodologic issues for pharmacologic trials in mild, moderate, and severe Alzheimer’s disease.  Int Psychogeriatr 1996; 8:159-193.

 

Reisberg B, Monteiro I, Torossian C, Auer S, Shulman M. Ghimire S, Boksay I, BenArous F, Osorio R, Vengassery A, Imran S, Shaker H, Noor S, Naqvi S, Kenowsky S, Xu J.  The BEHAVE-AD assessment system:   A perspective, a commentary on new findings, and a historical review.  Dement Geriatr Cogn Disord, 2014;38:89-146. 

 

Rosen W, Mohs R, Davis K. (1984) A new rating scale for Alzheimer’s disease.  American Journal of Psychiatry, 141: 1356-1364(Abstract).

 

Roth M, Tym E, Mountjoy C. et al (1986) CAMDEX: a standardised instrument for the diagnosis of mental disorder in the elderly with special reference to the early detection of dementia.  British Journal of Psychiatry, 149:698-709 (Abstract).

 

Sampson E, White N, Lord K, Leurent B, Vickerstaff V, Scott S, Jones L: Pain, agitation, and behavioral problems in people with dementia admitted to general hospital wards: a longitudinal cohort study.  Pain, 2015 Apr 156(4):675-83.

 

Warden V, Hurley AC, Volcier L.  Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4(1):9-15.