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Identifying Persons With Dementia By Use of a Caregiver Telephone Interview
CLI~1VlCAL."AJ.7\lD. RESEARCH ·REPORT5'·
Identifying Persons With Dementia By Use of a Caregiver Telephone Interview Jacobo Mintzer, M.D. Patti Nietert, PI:J.D. Kerri Costa, B.S. PI:Jilip Rtlst, PI3.D. Kathleen Hoernig, B.S. .A telephone screening {/SSeSSJ11ent clesignee/ to identtfy persons /ikel.J' to baoe dementia uias conducted ill a random COlIlJl1l1I1i()' sampte of 4,403 adults. Be-
cause of tbe cognitive impatrment of tbe subjects, infonnatton toas obtained from caregivers. Ttoenty-nine subjects toere tdentified as likelJ' to baue dementia. Of these, 15 agreed to a complete dementia assessment conducted in tbeir residence, and (Ill toere diagnosed tottb dent en tia. Tbere uias lJigb reltabiltty bettoeen [be caregiver telephone interoietu (f11(/ tbe clinical examination. (Am J Geriatr Psychiatry 1998; 6: 176-179)
T
he diagnosis of dementia is costly and time-consuming. Effective and econornlcal screening would be useful in epldemiological studies, subject recruitment for clinical drug trials, and working with public health initiatives. Telephone assessment has been used to evaluate cornmunit)' needs and provide outreach and care management, I especially in rural areas."
The Telephone Interview for Cogni.. it modified version of the Mini-Mental State Exam (MMSE)," has been reported to have high sensitivity and specificity in diagnosing Alzheimer's disease (AD). These findings are limited, however, because the validation process did not include it community-based random sample, and the Information was supplied by the subject with dementia, who 111ay have had comrnunicution difficulties. Modifications of the TICS5 ,6 have also been described; these suffer from the same limltu.. tions. This article presents it telephone interview process based on lnformation provided by a caregiver, used in a random community sample to screen for elderly persons likely to have dementia.
rive Status (TICS),3
METHODS Subject Recruitment Subjects were recruited by means of a randomized digital dialing process performed by Schulman, Ronca, and Bucuvalas, Inc., a professional surveying company that sampled from the entire state of South Carolina and from EI Paso, Texas. A total of 2,334 South Carolina households in which an adult was present were identified. Of these, 81 caregivers answered "yes" to the question "Are you caring for someone who has mental impairment or disability and requires assistance, including those persons outside of your household?" and to a sec.. ond question that asked if the care recipient was 65 years or older. Of the 81 caregivers initially identified, 50 agreed to a follow-up interview and care-recipient evaluation by a geropsychiatrist. (Three re-
Received August 27, 1996; revised December 11,1996; accepted June 16,1997. From the Medical University of South Carolina, Institute of Psychiatry, Charleston, South Carolina. Address correspondence to Dr. Mintzer; 171 Ashley Avenue, Charleston, SC 29425-0742. Copyright © 1998 American Association for Geriatric Psychiatry 176
VOLUME 6 • NUMBER 2 • SPRING 1998
Mintzer et al.
fused further questioning, and 28 could not be contacted.) In the sample from EI Paso, Texas, 2,069 English-speaking and 402 Spanishspeaking households were contacted where an adult was present. For Spanish.. speaking persons, a Spanish version of the telephone interview was administered. From the EI Paso sample, only 26 house.. holds claimed that there was an elderly person with S0111e form of dementia being cared for in the horne. The sample from South Carolina was both rural and urban, whereas the EI Paso sample was mainly urban.
Procedures Caregivers were asked to provide in.. formation about the person receiving care. According to the complete Haycox De.. mentla Behavior Scale 7 and the functional subscale of the Blessed Dementia Scale," the care-recipient was considered likely to have dementia if the caregiver responses gave the care-recipient a score of 8 or higher on the Haycox Dementia Behavior Scale or 4 or higher 011 the Blessed Demen.. tla Functional Subscale. These cutoff scores were chosen by the author on the basis of clinical experience. Of the 50 caregivers identified in the South Carolina sam.. ple, 29 did not provide care for a patient who met criteria for dementia. Similarly, 8 of the 26 caregivers from the EI Paso sampie were screened out as ineligible. This left a total of 29 caregivers who completed the entire 20-40-nlinute telephone interview. Of the 29 caregivers identified by the telephone screening process, 15 agreed to participate in a personal interview. The face-to..face interview was identical to the telephone interview and was administered in the caregiver's horne for the purpose of testing the reliability of the instrument. The care-recipient was evaluated in the h0111e as well by a geropsychiatrist to validate the Information provided by the care-
giver and to confirm the diagnosis of de.. mentla. This evaluation included a physical and psychiatric examlnatlon, as well as the MMSE and the Blessed Dementia Functional Subscale. The geropsychiatrlst con.. tacted the care-recipient's primary care physician and reviewed medical records. Any relevant laboratory or neuroimaging data were examined and filed for future lISC. These procedures complied with the methods set forth by the National Institute of Neurological Communicative Disorders and Stroke (NINCDS-ADRDA) for the diagnosis of probable or possible AD. The mean length of time between the telephone and personal interviews was 73.0 days, with a minlmum of 30 days and a maximum of 125 days. Data collected regarding the health care utilization habits of caregivers showed that six already belonged to S0111e type of support group. All but one of the caregiv.. ers had seen a physician in the previous 12 months, and one of the caregivers had been hospitalized within the previous 6 months.
THE Al\tIERICAN JOURNAL OF GERIATRICPSYCHIATRY
Instru ments The Haycox Dementia Behavior Scale measured patients' cognitive ability, and the Blessed Dementia Functional Subscale measured patients' functional abilities. These scales have been shown to correlate well (r=0.61; P
Telephone Screen for Dementia
RESULTS Each of the 15 care-reciplents identified through the caregiver telephone interview (through the Haycox and Blessed scales) as having dementia were later clinically diagnosed with some form of dementia. Eleven satisfied the criteria for probable AD; one was diagnosed with possible AD; and three had multi-infarct dementia. This screening process was 100tKl effective (positive predictive value = 1.000) in identifying elderly persons with dementia. Table 1 lists some of the characteristics of both the caregivers and care-recipients. The test-retest reliability between the caregiver telephone versions of the Haycox Scale and Blessed Dementia Functional Subscale and the respective versions administered to the caregiver in person by a trained interviewer was high (Haycox, telephone vs. personal: r> 0.86; P
Characteristics of caregivers and care-recipients
Variable
Description
Caregiver's age, mean ± standard dcviation Caregiver's sex
62.1 ± 14.8 years
Caregiver's race
Caregiver's education
Caregiver's marltnl status
Caregiver's relationship to patient
Care.. recipient's age, mean ± standard deviation Care-recipient's sex
178
3 men 12,vonlcn 8,vhitc 3 black 4 Hispanic 6 less than high school 3 high school graduates 6 at least 1 year college 13 married 1 divorced 1 widowed 8 spouse o son 6 daughter 1 other relativc 76.0 ± 8.6 years
7 men 8,vonlen
sonal: r= 0.77; P
DISCUSSION The screening process presented demonstrates validity for identifying persons likely to have dementia. Of primary significance is the fact that all subjects who satisfied the criteria for eligibility by this screening process were clinically diagnosed as having dementia. Also, there was a high level of correlation between the telephone-administered and the in-person assessments.. Results of the telephone version of the instruments administered to the caregiver also correlated with results from the MMSE and the Blessed Dementia Functional Subscale administered by the geropsychiatrist to the care-recipient. The assessment described in this article may demonstrate an economical and effective method for identifying elderly persons with dementia. This process allows for the identification of persons living in the community, as well as those residing in long-term care facilities. Study Iimltations include small sample size (n = 15) and potential subjects who may not have been identified because of the study design. Because this methodology relies 011 the presence of a caregiver, it automatically excludes the growing number of persons who live alone and do not have a caregiver to answer a telephone in.. terview. Methods for identifying such persons need to be developed. Although the sensitivity of this approach is not known, the prevalence of deVOLUME 6 • NUMBER 2 • SPIUNG 1998
Mintzer et al.
TABLE 2.
Pearson correlations (,.) bctwccn telephone, personal, and psychiatric intcrviews
Huycox (phone)
Blessed (phone)
Haycox (personal)"
Blessed (personal):"
MMSE (psychlatrlst)"
Blessed (psychlatrfst)"
0.86·" 0.73*
0.73· 0.77·
-0.72* -0.73·
0.80" 0.72·*
Note: Haycox = Huycox Dcmentla Behavior Scale; Blessed = Blessed Dementia Scale; MMSE= Mini-Mental State Exam. •P <0.01; "P <0.001; ••• p <0.0001.
TABLE 3.
Blessed Haycox
l\1MSE
Means ± standard deviations of study variables (N =15) Psychiatrlst"
Personal"
Telephone"
20.4±8.2 n/a 6.6±7.9
19.9±8.8 25.1±12.1
18.6±6.7 24.5± 13.0
n/a
n/a
No te: Blessed = Blessed Demcntla Scale; Haycox = Haycox Dementia Behavior Scale; MMSE= Mlni-Mental State Exam. 01 Jnformation obtained from care-recipient. h
lnformntlon obtained from caregiver,
mentia in our sample is somewhat lower (0.7%, or 29/4,403) than that reported for the general population (1.2%). In summary, the data derived from this study support the effectiveness of telephone assessment in screening for elderly persons likely to have dementia. However, this method is not meant to replace the complete ruultldisciplinary evaluation
needed for definitive diagnosis. Additional research is needed to develop cost-effective tools to be used as part of the holistic assessment process.
TIJis study uias supported bJI Grant #R29 AG11248-03 from tbe National IIl-
stitute
Oil
Aging.
References 1. Curry S, McBride C, Grothaus L, ct al: A rnndornized trial of self-help materials, personalized feedback, and telephone counscling with nonvolunteer smokers, J Consult CUn Psychol 1995; 63;10051014 2. Kline E, Zillberman I, Lenox R, et al: Referral and screening patterns at a clinic for anxiety disorders: Implications for the planning of clinical studies. Isr J Psychiatry Rclat Sci 1991; 28:18-23 3. BrandtJ, Spencer M, Foistcin M: The Telephone In· tervlew for Cognitive Status. Neuropsychiatry, Neuropsychology, and Behavioral Neurology 1988; 1:111-117 4. Folstcin Mn Folstcin SE, McHugh PR: Minl-Mental State: a practical method for grading the cognitive state of patients for the clinician. J Psychlatr Res 1975; 12:189-198
THE Al\tlEIUCAN JOURNAL OF GEIUATRIC PSYCHIATRY
5. Gallo J, Breitner ): Alzheimer's disease in the NASNRC Registry for aging twin veterans, IV: performance characteristics of a two-stage telephone screcning procedure for Alzheimer's dementia. Psychol Med 1995; 25: 1211-1219 6. \Vclsh K, Breltncr J, Magruder-Habib K: Detection of dementia in the elderly using telephone screening of cognitive status. Neuropsychiatry, Neuropsychology, and I3ehavioral Neurology 1993; 6: 103110 7. Haycox J: A simple. reliable clinical behuvioral scale for assesslng demented patients.) Clin Psychiatry 1968; 45:23-24 8. Blessed G, Tomlinson E, Martin R: The association between quantitative measures of dementia and of scnile change in the cerebral grey matter of elderly subjects. Br J Psychiatry 1968; 114: 797-811
179
Identifying Persons With Dementia By Use of a Caregiver Telephone Interview Jacobo Mintzer, M.D. Patti Nietert, PI:J.D. Kerri Costa, B.S. PI:Jilip Rtlst, PI3.D. Kathleen Hoernig, B.S. .A telephone screening {/SSeSSJ11ent clesignee/ to identtfy persons /ikel.J' to baoe dementia uias conducted ill a random COlIlJl1l1I1i()' sampte of 4,403 adults. Be-
cause of tbe cognitive impatrment of tbe subjects, infonnatton toas obtained from caregivers. Ttoenty-nine subjects toere tdentified as likelJ' to baue dementia. Of these, 15 agreed to a complete dementia assessment conducted in tbeir residence, and (Ill toere diagnosed tottb dent en tia. Tbere uias lJigb reltabiltty bettoeen [be caregiver telephone interoietu (f11(/ tbe clinical examination. (Am J Geriatr Psychiatry 1998; 6: 176-179)
T
he diagnosis of dementia is costly and time-consuming. Effective and econornlcal screening would be useful in epldemiological studies, subject recruitment for clinical drug trials, and working with public health initiatives. Telephone assessment has been used to evaluate cornmunit)' needs and provide outreach and care management, I especially in rural areas."
The Telephone Interview for Cogni.. it modified version of the Mini-Mental State Exam (MMSE)," has been reported to have high sensitivity and specificity in diagnosing Alzheimer's disease (AD). These findings are limited, however, because the validation process did not include it community-based random sample, and the Information was supplied by the subject with dementia, who 111ay have had comrnunicution difficulties. Modifications of the TICS5 ,6 have also been described; these suffer from the same limltu.. tions. This article presents it telephone interview process based on lnformation provided by a caregiver, used in a random community sample to screen for elderly persons likely to have dementia.
rive Status (TICS),3
METHODS Subject Recruitment Subjects were recruited by means of a randomized digital dialing process performed by Schulman, Ronca, and Bucuvalas, Inc., a professional surveying company that sampled from the entire state of South Carolina and from EI Paso, Texas. A total of 2,334 South Carolina households in which an adult was present were identified. Of these, 81 caregivers answered "yes" to the question "Are you caring for someone who has mental impairment or disability and requires assistance, including those persons outside of your household?" and to a sec.. ond question that asked if the care recipient was 65 years or older. Of the 81 caregivers initially identified, 50 agreed to a follow-up interview and care-recipient evaluation by a geropsychiatrist. (Three re-
Received August 27, 1996; revised December 11,1996; accepted June 16,1997. From the Medical University of South Carolina, Institute of Psychiatry, Charleston, South Carolina. Address correspondence to Dr. Mintzer; 171 Ashley Avenue, Charleston, SC 29425-0742. Copyright © 1998 American Association for Geriatric Psychiatry 176
VOLUME 6 • NUMBER 2 • SPRING 1998
Mintzer et al.
fused further questioning, and 28 could not be contacted.) In the sample from EI Paso, Texas, 2,069 English-speaking and 402 Spanishspeaking households were contacted where an adult was present. For Spanish.. speaking persons, a Spanish version of the telephone interview was administered. From the EI Paso sample, only 26 house.. holds claimed that there was an elderly person with S0111e form of dementia being cared for in the horne. The sample from South Carolina was both rural and urban, whereas the EI Paso sample was mainly urban.
Procedures Caregivers were asked to provide in.. formation about the person receiving care. According to the complete Haycox De.. mentla Behavior Scale 7 and the functional subscale of the Blessed Dementia Scale," the care-recipient was considered likely to have dementia if the caregiver responses gave the care-recipient a score of 8 or higher on the Haycox Dementia Behavior Scale or 4 or higher 011 the Blessed Demen.. tla Functional Subscale. These cutoff scores were chosen by the author on the basis of clinical experience. Of the 50 caregivers identified in the South Carolina sam.. ple, 29 did not provide care for a patient who met criteria for dementia. Similarly, 8 of the 26 caregivers from the EI Paso sampie were screened out as ineligible. This left a total of 29 caregivers who completed the entire 20-40-nlinute telephone interview. Of the 29 caregivers identified by the telephone screening process, 15 agreed to participate in a personal interview. The face-to..face interview was identical to the telephone interview and was administered in the caregiver's horne for the purpose of testing the reliability of the instrument. The care-recipient was evaluated in the h0111e as well by a geropsychiatrist to validate the Information provided by the care-
giver and to confirm the diagnosis of de.. mentla. This evaluation included a physical and psychiatric examlnatlon, as well as the MMSE and the Blessed Dementia Functional Subscale. The geropsychiatrlst con.. tacted the care-recipient's primary care physician and reviewed medical records. Any relevant laboratory or neuroimaging data were examined and filed for future lISC. These procedures complied with the methods set forth by the National Institute of Neurological Communicative Disorders and Stroke (NINCDS-ADRDA) for the diagnosis of probable or possible AD. The mean length of time between the telephone and personal interviews was 73.0 days, with a minlmum of 30 days and a maximum of 125 days. Data collected regarding the health care utilization habits of caregivers showed that six already belonged to S0111e type of support group. All but one of the caregiv.. ers had seen a physician in the previous 12 months, and one of the caregivers had been hospitalized within the previous 6 months.
THE Al\tIERICAN JOURNAL OF GERIATRICPSYCHIATRY
Instru ments The Haycox Dementia Behavior Scale measured patients' cognitive ability, and the Blessed Dementia Functional Subscale measured patients' functional abilities. These scales have been shown to correlate well (r=0.61; P
Telephone Screen for Dementia
RESULTS Each of the 15 care-reciplents identified through the caregiver telephone interview (through the Haycox and Blessed scales) as having dementia were later clinically diagnosed with some form of dementia. Eleven satisfied the criteria for probable AD; one was diagnosed with possible AD; and three had multi-infarct dementia. This screening process was 100tKl effective (positive predictive value = 1.000) in identifying elderly persons with dementia. Table 1 lists some of the characteristics of both the caregivers and care-recipients. The test-retest reliability between the caregiver telephone versions of the Haycox Scale and Blessed Dementia Functional Subscale and the respective versions administered to the caregiver in person by a trained interviewer was high (Haycox, telephone vs. personal: r> 0.86; P
Characteristics of caregivers and care-recipients
Variable
Description
Caregiver's age, mean ± standard dcviation Caregiver's sex
62.1 ± 14.8 years
Caregiver's race
Caregiver's education
Caregiver's marltnl status
Caregiver's relationship to patient
Care.. recipient's age, mean ± standard deviation Care-recipient's sex
178
3 men 12,vonlcn 8,vhitc 3 black 4 Hispanic 6 less than high school 3 high school graduates 6 at least 1 year college 13 married 1 divorced 1 widowed 8 spouse o son 6 daughter 1 other relativc 76.0 ± 8.6 years
7 men 8,vonlen
sonal: r= 0.77; P
DISCUSSION The screening process presented demonstrates validity for identifying persons likely to have dementia. Of primary significance is the fact that all subjects who satisfied the criteria for eligibility by this screening process were clinically diagnosed as having dementia. Also, there was a high level of correlation between the telephone-administered and the in-person assessments.. Results of the telephone version of the instruments administered to the caregiver also correlated with results from the MMSE and the Blessed Dementia Functional Subscale administered by the geropsychiatrist to the care-recipient. The assessment described in this article may demonstrate an economical and effective method for identifying elderly persons with dementia. This process allows for the identification of persons living in the community, as well as those residing in long-term care facilities. Study Iimltations include small sample size (n = 15) and potential subjects who may not have been identified because of the study design. Because this methodology relies 011 the presence of a caregiver, it automatically excludes the growing number of persons who live alone and do not have a caregiver to answer a telephone in.. terview. Methods for identifying such persons need to be developed. Although the sensitivity of this approach is not known, the prevalence of deVOLUME 6 • NUMBER 2 • SPIUNG 1998
Mintzer et al.
TABLE 2.
Pearson correlations (,.) bctwccn telephone, personal, and psychiatric intcrviews
Huycox (phone)
Blessed (phone)
Haycox (personal)"
Blessed (personal):"
MMSE (psychlatrlst)"
Blessed (psychlatrfst)"
0.86·" 0.73*
0.73· 0.77·
-0.72* -0.73·
0.80" 0.72·*
Note: Haycox = Huycox Dcmentla Behavior Scale; Blessed = Blessed Dementia Scale; MMSE= Mini-Mental State Exam. •P <0.01; "P <0.001; ••• p <0.0001.
TABLE 3.
Blessed Haycox
l\1MSE
Means ± standard deviations of study variables (N =15) Psychiatrlst"
Personal"
Telephone"
20.4±8.2 n/a 6.6±7.9
19.9±8.8 25.1±12.1
18.6±6.7 24.5± 13.0
n/a
n/a
No te: Blessed = Blessed Demcntla Scale; Haycox = Haycox Dementia Behavior Scale; MMSE= Mlni-Mental State Exam. 01 Jnformation obtained from care-recipient. h
lnformntlon obtained from caregiver,
mentia in our sample is somewhat lower (0.7%, or 29/4,403) than that reported for the general population (1.2%). In summary, the data derived from this study support the effectiveness of telephone assessment in screening for elderly persons likely to have dementia. However, this method is not meant to replace the complete ruultldisciplinary evaluation
needed for definitive diagnosis. Additional research is needed to develop cost-effective tools to be used as part of the holistic assessment process.
TIJis study uias supported bJI Grant #R29 AG11248-03 from tbe National IIl-
stitute
Oil
Aging.
References 1. Curry S, McBride C, Grothaus L, ct al: A rnndornized trial of self-help materials, personalized feedback, and telephone counscling with nonvolunteer smokers, J Consult CUn Psychol 1995; 63;10051014 2. Kline E, Zillberman I, Lenox R, et al: Referral and screening patterns at a clinic for anxiety disorders: Implications for the planning of clinical studies. Isr J Psychiatry Rclat Sci 1991; 28:18-23 3. BrandtJ, Spencer M, Foistcin M: The Telephone In· tervlew for Cognitive Status. Neuropsychiatry, Neuropsychology, and Behavioral Neurology 1988; 1:111-117 4. Folstcin Mn Folstcin SE, McHugh PR: Minl-Mental State: a practical method for grading the cognitive state of patients for the clinician. J Psychlatr Res 1975; 12:189-198
THE Al\tlEIUCAN JOURNAL OF GEIUATRIC PSYCHIATRY
5. Gallo J, Breitner ): Alzheimer's disease in the NASNRC Registry for aging twin veterans, IV: performance characteristics of a two-stage telephone screcning procedure for Alzheimer's dementia. Psychol Med 1995; 25: 1211-1219 6. \Vclsh K, Breltncr J, Magruder-Habib K: Detection of dementia in the elderly using telephone screening of cognitive status. Neuropsychiatry, Neuropsychology, and I3ehavioral Neurology 1993; 6: 103110 7. Haycox J: A simple. reliable clinical behuvioral scale for assesslng demented patients.) Clin Psychiatry 1968; 45:23-24 8. Blessed G, Tomlinson E, Martin R: The association between quantitative measures of dementia and of scnile change in the cerebral grey matter of elderly subjects. Br J Psychiatry 1968; 114: 797-811
179