Dementia and Family Caregiving


Title: Project COPE
Funding Source: Pennsylvania Department of Health
Status: June 1, 2006- May 30, 2009
Target population: Family caregivers of clients in Medicaid Waiver or Options Programs (Area Agencies on Aging)/Nursing Facility Care Eligible
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: The study evaluates a program of in-home services to address boredom, depression, and troublesome behaviors in persons with Alzheimer's disease or related dementias. Participants are assigned by chance to one of two groups. One group receives services from occupational therapist and a visiting nurse. The nurse examines the client to identify possible medical problems. The OT assesses the client and works with family caregivers to identify potential behavioral triggers of problem behaviors. The OT works with the family on behavioral management and designs a tailored program of activities.

All participants are interviewed three times and are paid for each interview. All receive educational and referral information.

• Study Brochure (PDF)
• Volunteer to Participate

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Title: “Reducing Family Caregiver Upset with Disruptive Behaviors”
Funding Source: National Institute on Aging
Status: October 1, 2002 – September 30, 2007
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: The overall objective is to test the effectiveness of an innovative intervention to reduce family caregiver upset and burden associated with managing disruptive behavior in persons with Alzheimer's disease or related disorders (ADRD) and lessen the frequency of occurrence of the behaviors. The in-home intervention we plan to test is theory-driven, multidisciplinary and combines empirical evidence with best clinical practices. It is designed to provide families with the requisite knowledge and skills to identify, manage and reduce both the internal (e.g. medical causes) and external (e.g., environmental) factors that may contribute to disruptive behavior in the home. The intervention is designed to be reproducible and reimbursable under current Medicare guidelines to enhance its transferability to health care settings.

The study design is a two-group randomized clinical trial in which 272 caregivers will be assigned to 6-months of intervention or a usual care control group and evaluated at baseline, 4 and 6-months.

We are interested in evaluating the mechanisms of action, or the pathways by which treatment gains are obtained. We also plan to evaluate whether there is a differential treatment effect based on caregiver gender, race and relationship to the ADRD patient given that previous research suggests that these caregiver characteristics may mediate treatment outcomes. We also plan to assess the cost of the intervention and its cost effectiveness.

Expected Outcomes:Caregivers in the intervention group at 4-months will report: less upset with target behaviors; less burden in comparison to the control group; a decrease in the frequency of occurrence of targeted behaviors; and will maintain reduced upset and burden and report less behavioral occurrences from 4 to 6 months.

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Title: Tailored Activity to Improve Affect in Dementia at Home
Funding Source: National Institute of Mental Health
Status: February 1, 2004 – December 31, 2006
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: The objective of this pilot project is to evaluate the feasibility and derive effect sizes for an innovative intervention that targets community-living persons with dementia (care recipients- CR) and their family caregivers (CG). The intervention, Activity Engagement Program, involves identifying the cognitive functional capabilities of CR, developing customized meaningful activities that match functioning, previous roles, habits and interests, and training CGs in specific techniques (problem-solving, communication, task and environmental simplification) to effectively engage CRs. The 8 session, 4-month in-home intervention is designed to reduce burden and depressive symptoms and enhance mastery of family caregivers. Specific aims are to refine intervention protocols, derive estimates of the magnitude of study effects, assure CR and CG acceptability of and compliance to intervention techniques, and to explore the mechanisms of action or pathways by which treatment effects may occur.

This pilot project will provide critical data by which to refine and standardize the intervention manual and protocols, and structure the design of a large-scale randomized clinical trial.

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Completed Projects

Title: "Multisite Intervention Trial for Diverse Caregivers"
Funding Source: National Institute on Aging
Status: December 2001 to August 2004
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: The overall objective of the this project is to refine and test a multi-component psychosocial behavioral intervention derived from REACH to reduce burden and depression among diverse family caregivers of patients with Alzheimer's Disease or a related disorder. The multi-component intervention combines components from the site-specific interventions developed in REACH. These components include; information provision, individual and group support, cognitive and behavior skills training, environmental modification, and technology. Through the integration of these components the intervention will address the cognitive, emotional, environmental, and social aspects of dementia caregiving. The intervention will be enhanced by an innovative computer/telephone technology system.

The study design is a multi-site, two-group randomized clinical trial, comparing the active intervention to an information only control. Unlike REACH, which implemented a variety of active interventions at 6 different sites, this proposal will implement the same two interventions at each of five participating sites; Birmingham, Memphis, Miami, Palo Alto, and Philadelphia.

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Title: “Evaluation of Tele-Support Groups for Family Caregivers of Persons with Alzheimer's Disease or Related Disorders”
Funding Source: Alzheimer's Association
Status: October 2000 to September 2003

Overview: The purpose of this project is to evaluate the effectiveness of professionally led tele-support groups to increase social support and enhance perceived efficacy among 100 African American and White female family caregivers of persons with Alzheimer's disease or a related disorder. The study is a collaborative effort between a community-based service organization, Supportive Older Women's Network, and an academic research center, Thomas Jefferson University. Caregivers assigned to intervention will participate in weekly one-hour teleconference calls involving psychosocial support and education for 12 months. Caregivers assigned to the control group will receive ususal care for the first 6 months and then educational materials and the telephone number of another control subject. All caregivers will be interviewed prior to randomization, at 6 months and 12 months from baseline.

Aims of the study are to test the effectiveness of tele-support groups in improving perceived social support and self-efficacy compared to controls; to test if gains are sustained at 12 months; and to evaluate the cost and cost effectiveness of the intervention. Secondary aims are to describe the process and content of tele-support groups, evaluate the relative benefits for African American and White caregivers, and determine if control group caregivers benefit from receiving a peer's telephone number.

Title: Philadelphia REACH Project: “Home Environmental Skill-building Program for Caregivers”
Funding Source: National Institute on Aging (NIA)
Status: Funded 1996-2001
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: This five-year project is part of a multi-site trial funded by the National Institutes of Health referred to as Resources for Enhancing Alzheimer's Caregiver Health (REACH). Six sites throughout the country are testing different community and home-based interventions to improve the well-being of families caring for individuals with dementia.

The intervention being tested by the Philadelphia REACH site systematically extends CHORD and the Department of Occupational Therapy's previous NIA dementia management grant. We will evaluate the benefits of a specialized home-based program called “Environmental Skill-building Program (ESP).” This intervention instructs caregivers in using their environment effectively to minimize functional decline and behavioral difficulties experienced by dementia patients. An important feature is that the intervention is standardized and reproducible and yet responsive to individualized caregiver needs. A total of 250 family caregivers from diverse cultural and economic backgrounds who reside with and care for individuals with mild or moderate dementia will be enrolled in the study. The Philadelphia Corporation for Aging's department of housing will provide home modifications and assistive devices. Participants in the control group will receive education materials. All study participants will be followed for 18 months.

Expected Outcomes: It is anticipated that this multi-site effort will provide definitive outcomes as to the relative benefits of different interventions for caregivers. Anticipated outcomes of ESP include: 1) the Home Environmental Assessment Protocol (HEAP), an observation tool to systematically evaluate dementia households for use in research and service programs; 2) a comprehensive manual of effective environmental strategies, and 3) a standardized and reproducible service for families caring for dementia patients.

Title: “Dementia Management: Intervention for Family Caregivers”
Funding Source: National Institute on Aging
Status: Completed
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: The purpose of this three year study was to evaluate the feasibility of providing 5 in-home occupational therapy visits to families caring for dementia patients. The study involved 202 family caregivers who were interviewed over the course of 12 months. Data collection was completed in 1995 and systematic analysis and manuscript preparation is currently underway.

Title: “Caregiving Styles of Spouses Who Provide Dementia Care”
Funding Source: National Institute on Aging
Status: On-going (1996-2001)
Principal Investigator: Mary Corcoran, Ph.D.

Overview: Dr. Corcoran is the principal investigator of this five year, first investigator award. The purpose of the study is to identify the unique thinking and action processes that inform the daily actions of family caregivers of individuals with dementia. Qualitative research strategies will be used to examine in-depth the care management strategies that are developed by males and females and African American and Caucasian spouses.

The involvement of CHORD includes providing research consultation as to the observation of the home environment and conceptual guidance as to the synthesis of data with regard to intentions and actions of caregivers.

Title: “Low-cost Patient System for Geriatric Wandering.”
Funding Source: Sub-contract: National Institute on Aging, Phase II SBIR Program to Signatron Technology, Concord, Massachusetts
Status: Completed September 1999
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: As part of an SBIR from NIA, Signatron Technology is providing a subcontract to Thomas Jefferson University (TJU), under the direction of Dr. Gitlin. The purpose of the subcontract is to conduct an exploratory study to identify the specific nature of the problem of monitoring an individual with dementia at home and obtain feedback about the utility of a monitoring device from the perspective of family caregivers. There are two study phases. In phase one, we will conduct two, two-hour focus group discussions to obtain specific information as to the scope of difficulties caregivers experience with wandering behaviors, explain the monitoring device, obtain feedback as to the potential utility of the device, and caregiver perceptions, concerns and issues associated with using the device at home. The session will be audiotaped and then transcribed. Specific information will be distilled regarding the nature and scope of the problem of wandering for caregivers and their perception of potential difficulties in placing a monitoring device on a patient. In phase two, each family caregiver will be asked to maintain a behavioral log for one week to document occurrence of wandering behaviors. A brief in-home interview will then be conducted to ascertain caregiver sense of upset and confidence in managing these episodes.

Title: “A Tool of Measure Home Environments of Dementia Patients”
Funding Source: National Institute on Aging (RO3)
Status: Completed May 2000
Principal Investigator: Laura N. Gitlin, Ph.D.

Overview: This pilot study examines the reliability and validity of an instrument, the Home e nvironmental Assessment Protocol (HEAP), developed by the investigators. It involves caregiver interview and direct observation of the physical setting of the home along 5 dimensions: hazards, environmental adjustments, visual cues, clutter and comfort.

The primary aims of the study are to 1) test the interrater agreement of the HEAP among four raters, and 2) examine the test-retest reliability of the HEAP over two testing occasions. In addition, there are two exploratory secondary aims of the study: to examine the relationship between subscores of the HEAP and standard measures of cognitive status, behavioral disturbance and ADL dependence of dementia patients as an initial indicator of its validity; and to compare interrater agreement between expert (OT) and non-expert (non-OT) raters. These aims will be tested with 22 households composed of caregivers who live with and provide care to patients with mild to moderate dementia. Four raters (two experts, 2 non-experts) will be used at two testing occasions.