The Gerontologist 41:406-409 (2001)
© 2001 The Gerontological Society of America
In-Home Assessment of Dementia by Nurses
Experience Using the CERAD Evaluations
Barbara Trapp-Moen, RN, MSN, GNPa,
Mary Tyrey, RN, BAb,
Gail Cook, RN-C, BSN, MEdb,
Albert Heyman, MDc and
Gerda G. Fillenbaum, PhDb
a School of Nursing, Duke University, Durham, NC
b Center for the Study of Aging and Human Development, Division of Neurology, Duke University Medical Center, Durham, NC
c Department of Medicine, Division of Neurology, Duke University Medical Center, Durham, NC
Correspondence: Gerda G. Fillenbaum, PhD, Box 3003, Duke University Medical Center, Durham, NC 27710. E-mail: ggf{at}geri.duke.edu.
Decision Editor: Eleanor S. McConnell, RN, PhD
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Abstract
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Purpose of Study: To maximize respondent participation in a study of the prevalence, incidence, and natural history of dementia. Design and Methods: Clinical research nurses were trained to carry out evaluations for dementia in the home. We describe the assessment and training procedures used and note the advantages and drawbacks of this approach. Results: Nurse identification of the presence of dementia agreed well with that of medical specialists (kappa = 0.84), but was slightly poorer regarding type of dementia (kappa = 0.71). Implications: Use of nurses for such activity need not be limited to epidemiological studies, but is relevant also in clinical practice.
Key Words: Diagnosis • Dementia • In-home evaluation
Although detailed assessments of progressive cognitive impairment and dementia in the elderly are generally administered by highly trained medical or neuropsychological specialists, the relative scarcity and higher costs of such professionals often limit their participation in major population studies. The present report describes our experiences in substituting trained clinical research nurses to administer a detailed neuropsychological and clinical evaluation for dementia in the homes of participants enrolled in a major epidemiological study of dementia. Such experience can be expected to be of relevance also to clinical investigators and medical care providers.
In 1986 the Consortium to Establish a Registry for Alzheimer's Disease (CERAD), with funding from the National Institute on Aging, began to develop a standardized assessment for the evaluation of Alzheimer's disease in tertiary care clinics. This assessment has since been used in epidemiological surveys of dementia (e.g., Fillenbaum et al. 1998
; Ganguli et al. 1996; Ganguli, Ratcliff, and Dekosky 1997; Hendrie et al. 1995). The two basic assessments used for evaluating dementia consist of the CERAD Neuropsychological Battery, which is designed to determine the type and severity of cognitive impairment, and the CERAD Clinical Battery, which assesses presence, type, and severity of dementia (Morris et al. 1989; Welsh, Butters, Hughes, Mohs, and Heyman 1991). Trained clinical research nurses administered both of these batteries and carried out independently a standardized, valid, and reliable assessment of dementia in the home.
Unlike the sterility of a clinic, in-home assessment may validate or correct reports of the participant's abilities. Erroneous descriptions of an individual's abilities may occur because of ignorance or fear of nursing home placement. For example, in a telephone interview, a daughter denied that her elderly mother, who lived next door, had memory loss or functional decline. During the home assessment, however, the mother was disoriented and unable to recall her address. She was able to live independently only because her grandchildren came in daily at specific times to remind her to take her medicine, to assist her in getting dressed, and to prepare meals.
Or consider another example. A niece reported that her uncle had a definite memory problem and could not maintain his appearance or manage his bills. If seen at the clinic, he would have appeared disheveled with a stained shirt and buttons askew. His hearing loss, cataracts, and illiteracy would impair performance on standard neuropsychology measures, and his appearance would raise concern about his ability to perform activities of daily living (ADLs). However, unable to find transportation for the 1-hour trip to the assessment clinic, he was seen at home. He looked unkempt, but he maintained an immaculate home. He described accurately the dosage time and indication for each of his six medications set out neatly on his table. He rode the bus to the senior center for lunch daily, remembering pick-up times and bus numbers. In fact, without a clothes washer and with only 1 year of education, he depended on his niece to pick up his laundry and pay his bills.
In this article, we describe the cognitive and clinical assessment batteries used, the training provided to the nurses, and the extent to which the nurses' diagnoses of dementia agreed with that of medical specialists.
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CERAD Neuropsychological and Clinical Batteries
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The Neuropsychological Battery used in this study consists of seven brief assessments that measure the areas of cognitive functioning usually implicated in Alzheimer's disease. These assessments are outlined in Table 1 . The entire battery takes 20–30 min to administer, depending on sensory deficits.
The Clinical Battery includes a detailed standardized inquiry with an informant to determine changes in the respondent's cognitive performance particularly with respect to the six areas listed in the Clinical Dementia Rating (CDR) scale (Morris 1993): memory, orientation, judgement and problem solving, community, home and hobbies, and ADLs. Information on possible changes in behavior and personality are also sought. Depression was assessed by direct inquiry of the participant using the Center for Epidemiologic Studies–Depression scale (Radloff 1977). Information was also obtained on instrumental and basic ADLs (Blessed, Tomlinson, and Roth 1968); verbal ability; calculation; orientation, memory, and concentration (Katzman et al. 1983); and the CERAD Clock Drawing Test (rated on a 4-point scale). The CERAD Clock Drawing Test assesses spatial orientation, dysphasia for numbers, and aspects of executive functioning. The nurse evaluators performed abbreviated physical and neurological examinations and reviewed medications to detect comorbidities, acute conditions, or drug effects likely to affect cognitive and physical function and behavior. In the present study, we notified primary providers of physical findings and medication problems of clinical concern.
The final section of the Clinical Battery provides algorithms, using information obtained earlier, to determine whether cognitive impairment was present, and if so, whether criteria for dementia have been met. In the latter case, the type of dementia that seems to be present is identified. In addition to the algorithms, which operationalize the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, criteria for dementia (American Psychiatric Association 1994), and modified National Institute for Neurological and Communicative Disorders and Stroke-Alzheimer's Disease and Related Disorders Association criteria for Alzheimer's Disease (McKhann et al. 1984), we asked the nurse to give a professional opinion as to the diagnosis and a CDR score. In doing so, the nurse integrated the information gathered on environmental, social and socio-economic factors, life history, and family involvement to develop a participant profile from a holistic nursing perspective. This information clarified the clinical relevance of the neuropsychological and functional performance scores, making a unique contribution.
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Establishing Proficiency in the CERAD Neuropsychological Battery
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We described the measures and administered them to the trainee nurses, who also viewed a video training tape. The nurses then administered the battery to several elderly friends. The project director (GGF) reviewed these completed batteries and discussed possible difficulties in administration and scoring. The nurses then administered the entire battery to the project director and scored it in her presence. After this latter step had been successfully completed, the project director permitted the nurses to administer this battery in the field. To ensure continued uniformity throughout the duration of the study, we continued to check each administration for completeness and accuracy of scoring.
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Establishing Proficiency in the CERAD Clinical Battery
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We established proficiency through the Geriatric Evaluation and Treatment Clinic at Duke University Medical Center. The nurses first observed evaluations carried out by the medical director before performing evaluations under his guidance. After they became competent, they made home visits with an experienced clinical research nurse or geriatrician. After the nurses observed evaluations, the supervisor permitted them to carry out their own examination under supervision until the supervisor deemed them competent.
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Time to Proficiency
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Each of the nurses, who at minimum had a bachelor's degree, had over 8 years of geriatric and nursing care experience and had worked in a research setting. With staff at this level, and a very focused program, it is possible to attain proficiency within 4 to 6 weeks, depending on the schedule of clinic precepting, familiarity with the assessment tools, and the availability of participants.
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Recording Clinical Data
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The CERAD Clinical Battery has been programmed for laptop use. The program automatically presents the interviewer with the next appropriate question. It sums scales, eliminating computation errors. Previously obtained information needed later in the interview appears at the appropriate time. Training in use of the laptop and the data entry system included experience entering hard copy forms and using the system during mock interviews. We have found the laptops are an "ice breaker," rather than a barrier to the encounter in the home.
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Participant Contact, Additional Information Sought, Diagnostic Determination
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Nurse evaluators telephoned participants or their caregivers beforehand, explained the study, and sought initial agreement. The nurses arranged a convenient time for the interview (and confirmed the evening before or the morning of the interview), and obtained directions to the residence. In the home, the nurses explained the study again. The participant read and signed the consent form, and the participant or caregiver received a copy. Where participants were wards of the court (true for some persons in institutions), the nurses obtained permission from the court-appointed guardian. The nurses administered the CERAD Neuropsychological Battery first, while the participant and interviewer were fresh. The brief physical and neurological examination followed, and then the rest of the CERAD Clinical Battery. The total interview required 90 to 120 min, depending on the level of competence of the participant, sensory deficits present, and environmental conditions.
On return to the office, the nurse evaluators checked materials for completeness. The nurses conducted telephone interviews with informants, if the informants were not seen earlier, and requested medical records for the past 5 years (relevant to the assessment of dementia). We have received 95% of the medical records requested. The nurse evaluators reviewed the records for information that might indicate the presence of dementia, including behavioral abnormalities. Working as a member of the consensus diagnosis team, the nurse then collated, summarized and presented the information gathered at a diagnosis consensus meeting attended by at least one geriatrician and one senior neurologist.
Table 2 indicates the diagnostic agreement, in gross categories, between the nurse evaluators and the diagnosis consensus committee for 105 participants with first study evaluations from 1997 to 1999. None of these participants was considered clearly normal. If we assume the diagnosis consensus committee to be correct, the nurses' diagnosis was in agreement for 92.9% of those participants classified as normal, 70.0% of those participants who were cognitively impaired, and 96.5% of those participants who were demented. Agreement across the three categories was 90.5% (kappa = 0.84). Agreement on specific diagnosis was 86.5% for Alzheimer's disease, 85.7% for vascular dementia, and 66.7% for other dementing disorders (kappa = 0.71; Table 3 ). According to generally accepted criteria, these values represent excellent and good agreement, respectively (Landis and Koch 1977).
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Table 2. Agreement on Dementia Status Between Nurse Evaluation and Diagnosis Consensus Committee Evaluation for 105 Participants
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Table 3. Agreement on Type of Dementia Between Nurse Evaluation and Diagnosis Consensus Committee Evaluation for 57 Participants with Dementia
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Comparison With Other Studies
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The few studies that have reported on the use of nurses for evaluation of dementia in the clinic or in the home have consistently indicated that nurses, using structured, and in some cases purpose-designed instruments, are able to make a diagnosis of dementia accurately (Dennis, Furness, Lindesay, and Wright 1998; Seymour, Saunders, Wattis, and Daly 1994; Sjobeck and Isacsson 1995). In these studies, kappa values (agreement beyond chance) range from 0.70–0.79 for agreement with specialists. This is comparable to the level of agreement found in the present study. As has also been found among medical specialists, there is less agreement on the type of dementia.
Unlike previous studies, the nurses in the present one were also involved in recruitment. This, as Wrobel and Shapiro 1999 indicated, is an onerous task, but one which yields a higher recruitment and retention rate than expecting patients or participants to come to the investigator. Prior to using in-home evaluation, participants severely resisted coming to Duke University Medical Center for evaluation because of distance, problems with transportation, loss of a day's earnings for a family member, or the participant's health. These are the same reasons that have led others to in-home evaluation. Those who declined our invitation to come to the medical center nevertheless welcomed the initial and annual in-home evaluations. Home visits also provided more accurate estimations of coping ability in the usual environment and allowed follow up in the nursing home. As with other studies that have used this approach, there are disadvantages also: a) inability to control the testing environment, b) conditions adverse to testing in the home, c) lack of ability to perform neuroimaging, and d) potential (if rare) danger to study staff.
Although our focus has been on the use of clinical research nurses in epidemiological surveys, others, as indicated, have found such professionals valuable in the clinic setting. The CERAD battery was developed in such a setting, and training tapes of both clinical and neuropsychological administration are available. As a multisite study, CERAD developed certification procedures on the basis of audiotapes of interviews with patients (with miniature camcorders, videotaping is now less intrusive and feasible) and a review of hard copy forms. CERAD conducted continued monitoring by spot checking randomly selected forms. The current study suggests that, with such procedures in place, carefully selected, CERAD-certified nurses could independently carry out assessments for the most common types of dementia either in the clinic or at home. Input from specialists would be desirable where the nurse is unsure of the diagnosis (typically the less common dementing disorders). Such an approach could result in a uniformity of diagnosis of dementia across sites that is not currently assured and facilitate follow up of patients with dementia.
In summary, we have found that it is eminently feasible to train clinical research nurses to make accurate diagnoses of dementia in the home. In-home evaluation, however, limits certain kinds of information that can be obtained (e.g., reduces the feasibility of neuroimaging studies), and the evaluation must sometimes be conducted under less than ideal environmental conditions (e.g., excessive noise, poor climate control, interruptions). Nevertheless, the participation rate is likely to be enhanced, because the subject need not move from a familiar environment and travel to an unfamiliar one. Once having been seen by the nurses, the participant is likely to remain a study participant, thus increasing retention rates.
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Acknowledgments
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This study was partially funded by National Institute on Aging (NIA) Grant AG08937 and NIA Contract N01-AG-1-2102.
Received for publication April 28, 2000.
Accepted for publication February 5, 2001.
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Abstract
CERAD Neuropsychological and...