1
$330 Poster Session P2: Social and Behavioral Research - Methods in Recruitment and Retention more) was used. For the purpose of determining which cognitive domains best discriminated subjects with cognitive impairment based on criterion 1 and 2, discriminant analysis under stepwise method for the selection of variables was used. Results: The weight of the different cognitive domains showed an homogenous pattern among surveys. Primary memory is the least discriminant cognitive domain, while orientation, attention and secondary verbal memory have more weight in discriminating cognitively impaired subjects. Discussion: Although different assessment instruments are used, similar results may be obtained with a percentilar distribution methodology. Criterion 1 and 2 showed different patterns of cognitive domain impairment related to the severity of cognitive impairment. ~-~] RECRUITMENT AND RETENTION STRATEGIES WITH AFRICAN AMERICANS Kathleen S. Hall*, William J. Malone, Millicent R. Pettaway, Hugh C. Hendrie. Indiana University School of Medicine, Indianapolis, IN, USA. Contact e-mail: [email protected] Background: African Americans and other minority groups are under- represented in research studies. A major goal of the research community is to enhance minority participation in research. Objectives: Describe the recruitment and retention strategies employed as part of the Indianapolis- Ibadan Dementia Project. Methods: The Indianapolis-lbadan Dementia Project is a longitudinal comparative study of dementia in two communities, African American and Yornha. Prior to the commencement of the field work in Indianapolis, study faculty spent a great deal of time discussing the project with community leaders and assembling a superb, highly motivated, politically influential advisory board who have played a crucial role in the conduct of the study. Interviewers were hired from the community on the advice of the board and other community agencies such as the urban league. Training of interviewers involved careful consideration of cultural as well as scientific issues. The study was widely publicized in church groups and in the local media. This included television, the African American TV outlets, and newspapers, particularly the African American newspapers. Prior to the screening, faculty and interviewers met with the neighborhood associations, the Mayor's office, and local police units. Interviewers all carried photo identification and letters were sent to all potential participants. The most important and effective retention methods have been the development of individual relationships between interviewers, nurses, and participants; as well as referral to and assistance in contacting health, housing, and community agencies when deemed necessary. Additional retention strategies include providing information updates, individually, through the board members and through the media; as well as acknowledging participants who have reached lifetime milestones. Results: The recruitment rate in the community-based African American study was very high. Refusal rate was only 11% in the first phase of the study. Retention rates remain high after 10 years. Conclusions: Successful recruitment of minorities requires a major effort to ensure support at the community and individual level. •P-•-• SOCIAL AND DEMOGRAPHIC FACTORS IN COGNITIVE IMPAIRMENT AMONG FIVE SURVEY STUDIES OF SPANISH-SPEAKING ELDERS Alejandro Miguel *l , Silvia Mejta I , Luis M. Gutitrrez I , 1 1 Feggy Ostrosky-Solis 2, Antonio Villa , Jorge A. Reyes . ~lnstituto Nacional de Ciencias Mddicas y Nutrici6n, Mexico City, Mexico; 2 Universidad Nacional Auttnoma de M~xico, Mexico City. Mexico. Contact e-mail: alexandromi guel @ hotmaiL corn Objectives: This study's aim is to identify social and demographic factors associated with cognitive impairment among Spanish-speaking elders in five survey studies. Methods: Using data from five different population based survey studies: The Cognitive Factors Survey in Mexico City's Elderly Population (ESEC); The Mexican portion of The Health, Wellbeing and Aging in seven Latin American and Caribbean Cities, the Mexican Health and Aging Study (MHAS); The Hispanic Established Populations for Epidemiologic Studies of the Elderly (Hispanic EPESE) and the oversample of Hispanics from The Health and Retirement Survey and Assets and Health Dynamics among the Oldest Old Survey (HRS-AHEAD), subjects with cognitive impairment were identified based on percentilar distribution within each educational level. The relationship of cognitive impairment with social and demographic variables was explored. Results: Prevalence increased with age, was higher in women, and didn't change with educational level. Being married was negatively associated with the risk of cognitive impairment. Prevalence estimates of cognitive impairment based on selection of cases under the tenth percentile among the 5 surveys are analogous (9.6% to 12.8%). However, when functional impairment is considered as a case selection criteria along with cognitive impairment, prevalence estimates shows changes between the different cohorts. Discussion: Despite differences in methodologies and sources, the data in the studied surveys showed similar prevalence estimates of cognitive impairment, as well as a similar relationships with sociodemographic variables. The similarities though, dissapears with the inclusion of functional impairment, may be due to measurement issues and probably as well to cultural factors. SUCCESSFULLY WORKING WITH PEOPLE LIVING ALONE WITH ALZHEIMER'S DISEASE Tamara C. Harden* 1,2, Charles E. Drebing 3, Mike P. Kincade 4. tBoston University Alzheimer's Disease Center, Bedford VAMC, Boston, MA, USA; 2 University of Massachusetts Boston, Boston, MA, USA; 3Boston University Alzheimer' s Disease Center, Boston, MA and the Bedford VAMC GRECC, Boston, MA, USA; 4Alzheimer's Association Massachusetts Chapter, Cambridge, MA, USA. Contact e-mail: [email protected] Background: Conducting clinical research with people with Alzheimer's disease and related dementias who live alone without a caregiver is a great challenge. However, it is not impossible. Unfortunately, there is a tendency to exclude potential research participants from studies when there is no caregiver present to act as historian and to assist in compliance with research protocol. Therefore, very little is known about this group. Objective(s): The Vulnerable Isolated Persons Project sought to a) provide insight into how this group stays in the community with so little informal support and b) to test an intervention designed for people living alone with Alzheimer's disease without a caregiver involved in their care. Methods: Participants were recruited from community-based social service agencies, senior housing buildings, and health care providers. The intervention consisted of a one hour meeting with informants (medical, social service, family, and friends/neighbors) and the intervention facilitator, Mike Kincade from the Alzheimer's Association Massachusetts Chapter. The intervention was designed to: - help informants connect - share information about the VIP's needs and condition - build a coalition and consensus to meet the VIP's needs - develop a plan for future care and follow-up A comparison group of participants were referred to the Alzheimer's Association Massachusetts chapter helpline. Participants were randomly assigned to one of the groups. Participants were followed for 6 months. The situation was reassessed and unmet needs were addressed at the end of 6 months. Results: Over 100 potential participants were referred to the project. A third of them signed consent to participate in the project. About half of these were assigned to the intervention condition. Conclusions: Persons with Alzheimer's disease who live alone without a caregiver can remain living independently in the community with an intervention tailored to meet the unique needs of this population. Further, appropriate placement can also be facilitated with this intervention as well. The sucess of a project like this is impossible however, without the cooperation and collaboration between the research team and providers in the community.

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Page 1: P2-343 Successfully working with people living alone with Alzheimer's disease

$330 Poster Session P2: Social and Behavioral Research - Methods in Recruitment and Retention

more) was used. For the purpose of determining which cognitive domains best discriminated subjects with cognitive impairment based on criterion 1 and 2, discriminant analysis under stepwise method for the selection of variables was used. Results: The weight of the different cognitive domains showed an homogenous pattern among surveys. Primary memory is the least discriminant cognitive domain, while orientation, attention and secondary verbal memory have more weight in discriminating cognitively impaired subjects. Discussion: Although different assessment instruments are used, similar results may be obtained with a percentilar distribution methodology. Criterion 1 and 2 showed different patterns of cognitive domain impairment related to the severity of cognitive impairment.

~ - ~ ] R E C R U I T M E N T AND R E T E N T I O N STRATEGIES WITH AFRICAN AMERICANS

Kathleen S. Hall*, William J. Malone, Millicent R. Pettaway, Hugh C. Hendrie. Indiana University School of Medicine, Indianapolis, IN, USA. Contact e-mail: [email protected]

Background: African Americans and other minority groups are under- represented in research studies. A major goal of the research community is to enhance minority participation in research. Objectives: Describe the recruitment and retention strategies employed as part of the Indianapolis- Ibadan Dementia Project. Methods: The Indianapolis-lbadan Dementia Project is a longitudinal comparative study of dementia in two communities, African American and Yornha. Prior to the commencement of the field work in Indianapolis, study faculty spent a great deal of time discussing the project with community leaders and assembling a superb, highly motivated, politically influential advisory board who have played a crucial role in the conduct of the study. Interviewers were hired from the community on the advice of the board and other community agencies such as the urban league. Training of interviewers involved careful consideration of cultural as well as scientific issues. The study was widely publicized in church groups and in the local media. This included television, the African American TV outlets, and newspapers, particularly the African American newspapers. Prior to the screening, faculty and interviewers met with the neighborhood associations, the Mayor's office, and local police units. Interviewers all carried photo identification and letters were sent to all potential participants. The most important and effective retention methods have been the development of individual relationships between interviewers, nurses, and participants; as well as referral to and assistance in contacting health, housing, and community agencies when deemed necessary. Additional retention strategies include providing information updates, individually, through the board members and through the media; as well as acknowledging participants who have reached lifetime milestones. Results: The recruitment rate in the community-based African American study was very high. Refusal rate was only 11% in the first phase of the study. Retention rates remain high after 10 years. Conclusions: Successful recruitment of minorities requires a major effort to ensure support at the community and individual level.

•P-•-• S O C I A L AND D E M O G R A P H I C FACTORS IN C O G N I T I V E I M P A I R M E N T A M O N G FIVE SURVEY STUDIES OF SPANISH-SPEAKING E L D E R S

Alejandro Miguel *l , Silvia Mejta I , Luis M. Gutitrrez I , 1 1 Feggy Ostrosky-Solis 2, Antonio Villa , Jorge A. Reyes . ~lnstituto

Nacional de Ciencias Mddicas y Nutrici6n, Mexico City, Mexico; 2 Universidad Nacional Auttnoma de M~xico, Mexico City. Mexico. Contact e-mail: alexandromi guel @ hotmaiL corn

Objectives: This study's aim is to identify social and demographic factors associated with cognitive impairment among Spanish-speaking elders in five survey studies. Methods: Using data from five different population based survey studies: The Cognitive Factors Survey in Mexico City's Elderly Population (ESEC); The Mexican portion of The Health, Wellbeing and Aging in seven Latin American and Caribbean Cities, the Mexican Health and Aging Study (MHAS); The Hispanic Established Populations for

Epidemiologic Studies of the Elderly (Hispanic EPESE) and the oversample of Hispanics from The Health and Retirement Survey and Assets and Health Dynamics among the Oldest Old Survey (HRS-AHEAD), subjects with cognitive impairment were identified based on percentilar distribution within each educational level. The relationship of cognitive impairment with social and demographic variables was explored. Results: Prevalence increased with age, was higher in women, and didn't change with educational level. Being married was negatively associated with the risk of cognitive impairment. Prevalence estimates of cognitive impairment based on selection of cases under the tenth percentile among the 5 surveys are analogous (9.6% to 12.8%). However, when functional impairment is considered as a case selection criteria along with cognitive impairment, prevalence estimates shows changes between the different cohorts. Discussion: Despite differences in methodologies and sources, the data in the studied surveys showed similar prevalence estimates of cognitive impairment, as well as a similar relationships with sociodemographic variables. The similarities though, dissapears with the inclusion of functional impairment, may be due to measurement issues and probably as well to cultural factors.

• SUCCESSFULLY W O R K I N G W I T H P E O P L E LIVING A L O N E WITH ALZHEIMER'S DISEASE

Tamara C. Harden* 1,2, Charles E. Drebing 3, Mike P. Kincade 4. tBoston University Alzheimer's Disease Center, Bedford VAMC, Boston, MA, USA; 2 University of Massachusetts Boston, Boston, MA, USA; 3Boston University Alzheimer' s Disease Center, Boston, MA and the Bedford VAMC GRECC, Boston, MA, USA; 4Alzheimer's Association Massachusetts Chapter, Cambridge, MA, USA. Contact e-mail: [email protected]

Background: Conducting clinical research with people with Alzheimer's disease and related dementias who live alone without a caregiver is a great challenge. However, it is not impossible. Unfortunately, there is a tendency to exclude potential research participants from studies when there is no caregiver present to act as historian and to assist in compliance with research protocol. Therefore, very little is known about this group. Objective(s): The Vulnerable Isolated Persons Project sought to a) provide insight into how this group stays in the community with so little informal support and b) to test an intervention designed for people living alone with Alzheimer's disease without a caregiver involved in their care. Methods: Participants were recruited from community-based social service agencies, senior housing buildings, and health care providers. The intervention consisted of a one hour meeting with informants (medical, social service, family, and friends/neighbors) and the intervention facilitator, Mike Kincade from the Alzheimer's Association Massachusetts Chapter. The intervention was designed to: - help informants connect - share information about the VIP's needs and condition - build a coalition and consensus to meet the VIP's needs - develop a plan for future care and follow-up A comparison group of participants were referred to the Alzheimer's Association Massachusetts chapter helpline. Participants were randomly assigned to one of the groups. Participants were followed for 6 months. The situation was reassessed and unmet needs were addressed at the end of 6 months. Results: Over 100 potential participants were referred to the project. A third of them signed consent to participate in the project. About half of these were assigned to the intervention condition. Conclusions: Persons with Alzheimer's disease who live alone without a caregiver can remain living independently in the community with an intervention tailored to meet the unique needs of this population. Further, appropriate placement can also be facilitated with this intervention as well. The sucess of a project like this is impossible however, without the cooperation and collaboration between the research team and providers in the community.