Resources For Caregivers Of People With Alzheimers Disease And Related Dementias
When a family member or loved one has Alzheimers disease or a related dementia, you may find yourself left with more questions than answers. These diseases change the way a person thinks and acts, and can be very challenging, especially for those in a caretaking role. Learning more about these diseases, what to expect, and what you can do can make a difference in a caregivers health and well-being and the well-being of the person youre caring for.
The federal government offers reliable resources on Alzheimers disease and related dementias and can connect you to important information about care and support. You can use the pages on this website and resources below to find more information from government sources. The information provided on these websites has been reviewed by experts in their fields. Health care providers, case managers, social workers, and nonprofit organizations may also be helpful.
S For Additional Analyses
Secondary analyses will evaluate the as-treated effect by using the number of attended intervention sessions, rather than group, as the predictor of interest, to assess whether those that participated in more of the intervention experienced greater change . Exploratory analyses will compare groups on caregiver self-efficacy and dementia knowledge post-intervention using similar models. These measures will then be incorporated into the models for the primary outcomes as additional independent variables to assess whether group differences in the primary outcomes are attenuated, an indication of possible mechanism for the intervention.
Composition Of The Data Monitoring Committee Its Role And Reporting Structure
This study will have an independent safety officer , approved by the funding agency, who will meet 12 times each year to review the progress of the study, including adverse events, procedures for maintaining the confidentiality of data, and the quality of data collection, management, and analyses. If needed, the SO will also review any issues that arise in terms of conflict of interest or serious adverse events. The SO will report directly to the funder .
The Reach Program Improves The Health Of Informal Caregivers Of Patients With Alzheimers Disease
- Alzheimers disease is a brain disorder that causes a deterioration of memory and thinking skills. Individuals with AD often display progressive cognitive decline and unpredictable behaviors.
- More than 70% of the 4.5 million individuals in the U.S. with AD live at home, with a spouse, other family member, or friend serving as an informal caregiver. The constant demands of providing care for someone with AD can take a toll on the mental and physical health of the caregiver.
- The Resources for Enhancing Alzheimers Caregiver Health program was developed to assist AD caregivers. The REACH program taught caregivers about AD, along with strategies to help them manage troublesome behaviors of the care recipients. It also emphasized ways for caregivers to manage stress, maintain their social support groups, and enhance their own health and self-care activities.
- In a multisite study involving almost 500 AD caregivers, those who received the REACH intervention reported better physical, emotional, and overall health compared to those who received a packet of basic AD educational materials.
- In addition, the REACH caregivers had lower scores for depression, which contributed to reducing their sense of caregiving burden.
- These findings indicate that the REACH program, by providing information about both AD and self-care, helped AD caregivers maintain their own physical, emotional, and mental well-being.
Funding for REACH was provided by NINR and the National Institute on Aging .
Version History View Help For Version History
- Schulz, Richard, et al. Resources for Enhancing Alzheimer’s Caregiver Health, 1996-2001, Baseline and Follow-Up Data . ICPSR03678-v2. Ann Arbor, MI: Inter-university Consortium for Political and Social Research , 2006-09-26. http://doi.org/10.3886/ICPSR03678.v2
2006-09-26 Value labels have been added.
2006-03-30 File CB3678.ALL.PDF was removed from anyprevious datasets and flagged as a study-level file, so that it willaccompany all downloads.
2005-11-04 On 2005-03-14 new files were added toone or more datasets. These files included additional setup files aswell as one or more of the following: SAS program, SAS transport, SPSSportable, and Stata system files. The metadata record was revised2005-11-04 to reflect these additions.
2003-07-03 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:
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Measures Of Cg Burden And Bother
CGs’ burden and bother were measured using five questionnaires: the brief 12-item version of the Zarit Subjective Burden Inventory,26 the frustrations of caregiving subscale from the REACH II Quality of Care measure,21 the Caregiver Assessment of Functional Dependence and Caregiver Upset measure ,21 the Revised Memory and Behavior Problem Checklist ,27,28 and the Center for Epidemiologic Studies Depression Scale .29
Zarit Subjective Burden Interview
The 12-item modified Zarit Subjective Burden Inventory measured CGs’ responses to questions regarding physical and emotional strain on a 5-point scale ranging from 0 to 4 . Scores range from 0 to 44, with higher total scores indicating greater levels of CG burden. This shorter version is highly correlated with the full measure and has good internal consistency .26
Frustrations of Caregiving
This scale asked CGs whether they felt like engaging in eight different behaviors indicative of CG frustration when encountering a problem in caregiving such as resistance to care. CGs’ responses to questions such as: How often in the past 6 months have you felt like screaming or yelling at because of the way he/she behaved? were rated on a 4-point scale from 0 to 3 . Total scores range from 0 to 24, with higher scores indicating greater frustration. This scale has good predictive validity.30
Caregiver Assessment of Functional Dependence and Caregiver Upset
Revised Memory and Behavior Problem Checklist
Reach I & Ii: Resources For Enhancing Alzheimer Caregiver Health
REACH II was funded by the National Institute on Aging from 9/30/2001 through 8/31/2004. This is the Competitive Renewal of the project described below, under a new overall title and with new goals. Five sites nationally enrolled 600 Anglo, Hispanic, and African American caregivers with a common intervention used at all sites and a common battery of outcome measures. The Coordinating Center at the Univ. of Pittsburgh monitored randomization, safety issues, etc. in this Phase III clinical trial of the effectiveness of a newly designed behaviorally based intervention, compared to usual care, for improving quality of life in these diverse dementia caregivers. Responsiveness within and between the three minority groups was of great interest in this project.
Selected Relevant Publications:
1. Gallagher-Thompson, D., Coon, D.W., Solano, N., Ambler, C., Rabinowitz, Y., & Thompson, L.W. . Change in indices of distress among Latino and Anglo female caregivers of elderly relatives with dementia: Site specific results from the REACH national collaborative study. The Gerontologist, 43, .
2. Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M. G., & Gallagher-Thompson, D. . Positive Aspects of Caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. Research on Aging, 26, 429-453.
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Brief Reportresources For Enhancing Alzheimer’s Caregiver Health In Vietnam : Exploratory Analyses Of Outcomes Of A Cluster Randomized Controlled Trial To Test The Feasibility And Preliminary Efficacy Of A Family Dementia Caregiver Intervention In Vietnam
What is the primary question addressed by this study?
The current paper examines exploratory analyses of outcomes of the culturally adapted, relatively brief, multicomponent family dementia caregiver intervention, Resources for Enhancing Alzheimer’s Caregiver Health in Vietnam .
What is the main finding of this study?
There was significant improvement in caregiver frustrations post-intervention in the REACH VN group compared with enhanced control. Additionally, there were differences in other outcomes favoring the intervention condition that did not reach statistical significance.
What is the meaning of the finding?
This paper provides further evidence that REACH VN is a promising intervention to support caregivers of people with dementia in Vietnam.
Composition Of The Coordinating Centre And Trial Steering Committee
For the duration of the trial, oversight and coordination of day-to-day intervention activities will be conducted locally through weekly meetings of interventionists and administrative staff from Hai Duong Provincial General Hospital together with senior interventionists and study investigators from the Vietnam National Geriatric Hospital. Additionally, a steering committee composed of senior investigators from the Vietnam National Geriatric Hospital and the two study principal investigators in the US will meet biweekly throughout the trial to monitor overall trial progress, timeliness of assessments conducted by Institute for Population Health and Development, an independent organization, adverse events, screening activities, and other ethical issues. Screening activities are also coordinated locally by staff from the Vietnam National Geriatric Hospital, Hai Duong Provincial General Hospital, and local community health station staff, including village health workers. There is no trial steering committee or stakeholder and public involvement group.
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Q & A: Reach Community Dementia Caregiving Program
This article describes one of more than 40 dementia caregiving programs found in Best Practice Caregiving, a free online database that helps organizations identify, compare and adopt best-fit programs for their clientele and community.
REACH Community is a dementia caregiving program that empowers caregivers to problem-solve challenges they experience from caregiving. Evolving out of a successful program originally funded by the National Institutes of Health and then further developed within the Veterans Affairs system, REACH Community has brought the REACH model into non-veteran communities, helping a broader population of caregivers in need of support.
We talked with Jennifer Martindale-Adams, Ed.D., M.S., and Linda Nichols, Ph.D., M.A., B.A., developers of the REACH Community program, to learn more about how the program works, how it helps caregivers, and how other organizations can adopt it.
Dr. Martindale-Adams is professor in the Department of Preventive Medicine and co-director of the VA Caregiver Center. Dr. Nichols is professor in the Department of Preventive Medicine in the College of Medicine at the University of Tennessee Heath Science Center and co-director of the Caregiver Center at the Memphis VA Medical Center. Drs. Martindale-Adams and Nichols also co-direct the Caregiver Center at the University of Tennessee Health Science Center.
Plans To Give Access To The Full Protocol Participant
Clinical and outcomes data will be deposited at , which is an NIH-funded repository. All relevant and referenced data will be deposited no later than the time of online publication date for the main trial outcome results. We will further abide by requirements set by the journal where we publish results regarding making the underlying data and statistical code available.
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Study Design And Data Collection
This study included family CGs, including close friends, who were enrolled in the REACH II trial. Recruitment procedures, eligibility criteria, and baseline data for CGs and CRs participating in REACH II are described in detail elsewhere.21 Briefly, 642 CGs and their CRs with dementia who qualified for the study were randomly assigned to the control or intervention. Participants were recruited through five sites across the country and enrolled beginning in June 2002, with follow-up ending in August 2004. For the purposes of the present study, only participants who completed the 6-month follow-up and for whom data regarding their health status and burden and bother measures were available were included in the analyses, leaving a total of 495. CGs completing the intervention had higher levels of education than those who dropped out , and their CRs had higher Mini-Mental State Examination scores than those of CGs who dropped out . The most common reasons for CG discontinuation were that the CG withdrew consent or could not be located. CGs self-identified themselves as black or African American , Hispanic or Latino , or white or Caucasian . Demographic data for these participants are displayed in Table 1. This study followed the tenets of the Declaration of Helsinki, and institutional review boards at all five sites and at the Coordinating Center in Pittsburgh, Pennsylvania, approved the study. All participants provided informed or proxy consent before participation.
Effect Of Treatment On Cg Health
Table 2 provides the mean score and standard deviation for each CG health variable broken down according to treatment group and time of assessment. The results of two by two mixed factorial ANOVAs conducted on each CG health measure are presented in Table 3. These results show that, in three of the four cases, there was a significant time by treatment interaction, such that there was significant improvement in the intervention condition but not in the control condition. This same pattern was found for the remaining variable , but the interaction effect was not significant. Thus, it appears that the REACH II intervention significantly improved CG health variables.
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Resources For Enhancing Alzheimer’s Caregiver Health
The REACH study was a multisite caregiver intervention study that compared a variety of interventions for dementia caregivers to control conditions. The study was a landmark in its large sample size, use of multiple sites, and inclusion of large numbers of White, Hispanic, and African American caregivers.
Resources For Enhancing Alzheimer’s Caregiver Health Ii
The REACH II protocol is a structured multi-component caregiver intervention that is based on an individualized assessment of caregiver needs. Interventions are tailored to individualized risk profiles based on a caregiver assessment of depression, burden, self-care and healthy behaviors, social support, and problem behaviors.
Each caregiver intervention includes a variety of strategies, selected to address clients individualized needs that were identified in assessment. Intervention strategies include provision of information, skills training, problem solving, role playing, stress management, and telephone support. The intervention clinical trial used 9 individualized sessions plus 3 phone sessions.
REACH II was designed to address the needs of culturally diverse caregivers of persons with dementia, including White, Hispanic, and African-American caregivers.
The REACH II intervention has been shown to improve caregiver quality of life, and was found to show benefits to White, Hispanic, and African-American caregivers.
REACH II has been successfully adapted to use in the community and it has also been effectively adapted for use with family caregivers of persons with acquired physical disabilities .
Outcomes Research References
Clinical Approach References
REACH OUT Action Guide and materials useful to interventionist and caregiver are available online.
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Frequency And Plans For Auditing Trial Conduct
Throughout the trial period, an independent safety officer , who has been approved by the funding agency , will meet 12 times each year to review the study protocol, monitor study progress, and review adverse events and other ethical issues or challenges. A report of these meetings will be submitted to the funding agency. Because the risk of this caregiving intervention is considered low, we will not have a data safety monitoring board for this trial.
Adverse Event Reporting And Harms
Adverse events will include untoward or unfavorable mental or physical health-related occurrences experienced by a participant that are temporally associated with participation in the research, regardless of the relatedness to the research. Examples of such events that might occur include incidents of brief hospitalization, caregiver distress or depression, instances of elder abuse or neglect, and other unanticipated events. Serious adverse events will be further defined as those events that seriously jeopardize the participants health, including prolonged hospitalization, suicide attempts, and death. The overall goal of this plan is to have both serious adverse events and non-serious adverse events that are viewed as likely related to study participation reported to both the UCD IRB and NIH in a timely fashion.
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Plans For Assessment And Collection Of Outcomes
Staff from PHAD will conduct assessments for study participants. All outcome assessments will be conducted face-to-face in the home or another place of the participants choosing. During COVID-19, assessments can be conducted via phone due to social distancing directives at local areas. The initial assessment will occur within 1 week of the enrollment visit and subsequent visits will occur within a 2-week window of time at 3months and 6months post-enrollment. Data entry will be conducted on tablets using Research Electronic Data Capture .
Plans For Communicating Important Protocol Amendments To Relevant Parties
Any modifications to the protocol which may impact the conduct of the study, including changes of study objectives, study design, or study procedures will require a formal amendment to the protocol. Any modifications will be approved by IRB at UC Davis and NGH prior to implementation. Relevant changes will also be made to the study protocol in clinicaltrials.gov.
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Plans To Promote Participant Retention And Complete Follow
Several strategies will be used to enhance retention. Participants in both the intervention group and the enhanced control group will be given the option of meeting interventionists in another setting, such as the local health station. We will also be flexible in arranging times to meet with participants, such as after work or on the weekend if these times work best for them. Participants will also be given the option of conducting some intervention sessions or outcome assessments by phone to enhance retention. Interventionists will make monthly calls for about 15min each call to keep in-touch with participants in the intervention group.
S In Analysis To Handle Protocol Non
The extent of missing data and patterns of missingness will be assessed once all study participants have completed the study. If needed, multiple imputation methods will be used and sensitivity analyses, including complete case analysis, and alternative approaches will be conducted to evaluate the impact of the imputation on study findings.
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