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Objectives: The quality of the relationship between patients with many illnesses and their family members has been shown to affect the well-being of both. Yet, relationship quality has not been studied in traumatic brain injury (TBI), and giving and receiving aspects have not been distinguished. The present study of veterans with TBI examined associations between relationship quality and caregiver burden, satisfaction with caregiving, and veterans' competence in interpersonal functioning, rated by veterans and family members., Method: In this cross-sectional study, 83 veterans and their family members were interviewed at home. Measures of quality of relationship, veterans' interpersonal competence and sociodemographics were collected for both, caregiver burden and satisfaction for family members only., Results: As predicted, veteran-rated Q rel /Giving was associated with family-rated Q rel /Receiving, and veteran-rated Q rel /Receiving with family-rated Q rel /Giving. Lower caregiver burden and higher caregiving satisfaction were associated with higher Q rel /Receiving scores but not with Q rel /Giving scores. Veterans' interpersonal competence was associated with total Q rel as rated by either veterans or family members., Conclusions: Relationship quality should be included in family research in TBI, and giving and receiving aspects should be differentiated. Findings suggest that lower caregiver burden and greater satisfaction should be more achievable by increasing caregivers' sense of benefits received from the relationship.

Objectives: The aim of this study was to evaluate the yield and cost of three recruitment strategies-direct mail, newspaper advertisements, and community outreach-for identifying and enrolling dementia caregivers into a randomized trial testing a nonpharmacologic approach to enhancing quality of life of patients and caregivers (dyads)., Method: Enrollment occurred between 2006 and 2008. The number of recruitment inquiries, number and race of enrollees, and costs for each recruitment strategy were recorded., Results: Of 284 inquiries, 237 (83%) dyads enrolled. Total cost for recruitment across methodologies was US$154 per dyad. Direct mailings resulted in the most enrollees (n = 135, 57%) and was the least costly method (US$63 per dyad) compared with newspaper ads (US$224 per dyad) and community outreach (US$350 per dyad). Although enrollees were predominately White, mailings yielded the highest number of non-Whites (n = 37)., Discussion: Direct mailings was the most effective and least costly method for enrolling dyads in a nonpharmacologic dementia trial., (© The Author(s) 2014.)

Religiosity and mood have long been recognized as associated, but some patterns of associations suggest complex relationships. Using a multidimensional measure of religiosity, we explored the possibility that dimensions of religiosity may have (1) different strengths of association and (2) directions of association with depressed mood. We measured five dimensions of religiosity in 1227 family caregivers of persons with dementia, testing associations of each dimension to caregivers' depressive symptoms. In zero-order associations, higher scores on each religiosity dimension were associated with lower depression. Yet in hierarchical multiple regressions models, adjusting for other religiosity dimensions, different dimensions showed either no independent association, an independent association, or an inverse association with depressed mood. Frequency of prayer reversed directions of association-showing higher depression in caregivers who prayed more. Findings underscore the complex and sometimes bidirectional association between depressed mood and religiosity and argue for recognition of distinct dimensions of religiosity.

Objectives: Pain is underrecognized and undermanaged in older adults with dementia. Because dementia patients have a diminished capacity to communicate discomfort, untreated pain may be expressed in the form of behavioral and psychiatric symptoms. The goal of the present study was to examine the relationship between pain and behavioral and psychiatric symptoms of dementia in community-residing older adults from the perspective of the family caregiver., Materials and Methods: Dyads composed of 272 dementia patients, and their family caregivers were assessed to determine dementia patient's mental status; family caregiver's assessment of care recipient's pain, functional dependence, and number of behavioral symptoms; analgesic use; and demographic information., Results: Hierarchical multiple regression analysis controlling for age, marital status, race, functional disability, and analgesic use showed that pain explained a small but significant percent of variance in the number of behavioral symptoms (3%, P<0.001). Pain had a stronger influence on the number of behavioral and psychiatric symptoms of dementia among those with severe cognitive impairment (F1,69=11.75, P<0.001) compared with those with low to moderate cognitive impairment (F1,199=4.543, P=0.034.)., Discussion: The findings indicate that pain is a risk factor for behavioral symptoms in individuals with dementia and suggest that pain is a more significant predictor of behavior for individuals with severe dementia, compared with those with mild/moderate stage dementia. These results reinforce the importance of proper pain assessment and its management as part of dementia care planning.

Context: Optimal treatment to postpone functional decline in patients with dementia is not established., Objective: To test a nonpharmacologic intervention realigning environmental demands with patient capabilities., Design, Setting, and Participants: Prospective 2-group randomized trial (Care of Persons with Dementia in their Environments [COPE]) involving patients with dementia and family caregivers (community-living dyads) recruited from March 2006 through June 2008 in Pennsylvania., Interventions: Up to 12 home or telephone contacts over 4 months by health professionals who assessed patient capabilities and deficits; obtained blood and urine samples; and trained families in home safety, simplifying tasks, and stress reduction. Control group caregivers received 3 telephone calls and educational materials., Main Outcome Measures: Functional dependence, quality of life, frequency of agitated behaviors, and engagement for patients and well-being, confidence using activities, and perceived benefits for caregivers at 4 months., Results: Of 284 dyads screened, 270 (95%) were eligible and 237 (88%) randomized. Data were collected from 209 dyads (88%) at 4 months and 173 (73%) at 9 months. At 4 months, compared with controls, COPE patients had less functional dependence (adjusted mean difference, 0.24; 95% CI, 0.03-0.44; P = .02; Cohen d = 0.21) and less dependence in instrumental activities of daily living (adjusted mean difference, 0.32; 95% CI, 0.09-0.55; P = .007; Cohen d = 0.43), measured by a 15-item scale modeled after the Functional Independence Measure; COPE patients also had improved engagement (adjusted mean difference, 0.12; 95% CI, 0.07-0.22; P = .03; Cohen d = 0.26), measured by a 5-item scale. COPE caregivers improved in their well-being (adjusted mean difference in Perceived Change Index, 0.22; 95% CI, 0.08-0.36; P = .002; Cohen d = 0.30) and confidence using activities (adjusted mean difference, 0.81; 95% CI, 0.30-1.32; P = .002; Cohen d = 0.54), measured by a 5-item scale. By 4 months, 64 COPE dyads (62.7%) vs 48 control group dyads (44.9%) eliminated 1 or more caregiver-identified problems (chi(2/1) = 6.72, P = . 01)., Conclusion: Among community-living dyads, a nonpharmacologic biobehavioral environmental intervention compared with control resulted in better outcomes for COPE dyads at 4 months. Although no group differences were observed at 9 months for patients, COPE caregivers perceived greater benefits., Trial Registration: clinicaltrials.gov Identifier: NCT00259454.

Objectives: To test the effects of an intervention that helps families manage distressing behaviors in family members with dementia., Design: Two-group randomized trial., Setting: In home., Participants: Two hundred seventy-two caregivers and people with dementia., Intervention: Up to 11 home and telephone contacts over 16 weeks by health professionals who identified potential triggers of patient behaviors, including communication and environmental factors and patient undiagnosed medical conditions (by obtaining blood and urine samples) and trained caregivers in strategies to modify triggers and reduce their upset. Between 16 and 24 weeks, three telephone contacts reinforced strategy use., Measurements: Primary outcomes were frequency of targeted problem behavior and caregiver upset with and confidence managing it at 16 weeks. Secondary outcomes were caregiver well-being and management skills at 16 and 24 weeks and caregiver perceived benefits. Prevalence of medical conditions for intervention patients were also examined., Results: At 16 weeks, 67.5% of intervention caregivers reported improvement in targeted problem behavior, compared with 45.8% of caregivers in a no-treatment control group (P=.002), and reduced upset with (P=.03) and enhanced confidence managing (P=.01) the behavior. Additionally, intervention caregivers reported less upset with all problem behaviors (P=.001), less negative communication (P=.02), less burden (P=.05), and better well-being (P=.001) than controls. Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, P=.02). Similar caregiver outcomes occurred at 24 weeks. Intervention caregivers perceived more study benefits (P<.05), including ability to keep family members home, than controls. Blood and urine samples of intervention patients with dementia showed that 40 (34.1%) had undiagnosed illnesses requiring physician follow-up., Conclusion: Targeting behaviors upsetting to caregivers and modifying potential triggers improves symptomatology in people with dementia and caregiver well-being and skills., (© 2010, Copyright the Authors. Journal compilation © 2010, The American Geriatrics Society.)

Objective: To test whether the Tailored Activity Program (TAP) reduces dementia-related neuropsychiatric behaviors, promotes activity engagement, and enhances caregiver well-being., Design: Prospective, two-group (treatment, wait-list control), randomized, controlled pilot study with 4 months as main trial endpoint. At 4 months, controls received the TAP intervention and were reassessed 4 months later., Setting: Patients' homes., Participants: Sixty dementia patients and family caregivers., Intervention: The eight-session occupational therapy intervention involved neuropsychological and functional testing, selection, and customization of activities to match capabilities identified in testing, and instruction to caregivers in use of activities., Measurements: Behavioral occurrences, activity engagement, and quality of life in dementia patients; objective and subjective burden and skill enhancement in caregivers., Results: At 4 months, compared with controls, intervention caregivers reported reduced frequency of problem behaviors, and specifically for shadowing and repetitive questioning, and greater activity engagement including the ability to keep busy. Fewer intervention caregivers reported agitation or argumentation. Caregiver benefits included fewer hours doing things and being on duty, greater mastery, self-efficacy, and skill enhancement. Wait-list control participants following intervention showed similar benefits for reductions in behavioral frequency and caregiver hours doing things for the patient and mastery. Caregivers with depressed symptoms derived treatment benefits similar to nondepressed caregivers., Conclusions: Tailoring activities to the capabilities of dementia patients and training families in activity use resulted in clinically relevant benefits for patients and caregivers. Treatment minimized trigger behaviors for nursing home placement and reduced objective caregiver burden. Noteworthy is that depressed caregivers effectively engaged in and benefited from the intervention.

Project ACT is a randomized controlled trial designed to test the effectiveness of a non-pharmacological home-based intervention to reduce behavioral and psychological symptoms of dementia (BPSD) and caregiver distress. The study targets 272 stressed racially diverse family caregivers providing in-home care to persons with moderate stage dementia with one or more behavioral disturbances. All participants are interviewed at baseline, 4-months (main trial endpoint), and 6-months (maintenance). The four-month intervention involves up to 13 visits from an occupational therapist who works with families to problem-solve potential triggers (communication style, environmental clutter) contributing to behaviors, and instruct in strategies to reduce caregiver stress and manage targeted behaviors. To rule out infection or other potential medical contributors to behaviors, a nurse obtains blood and urine samples from the dementia patient, and conducts a medication review. Participants in the no-treatment control group are offered the nurse arm and one in-home session following trial completion at 6-months. This paper describes the research methods, theoretical and clinical aspects of this multi-component, targeted psycho-social treatment approach, and the measures used to evaluate quality of life improvements for persons with dementia and their families.

Family caregivers, the "second victims" or hidden patients in dementia care, are at risk for social isolation, stress, depression, and mortality. Telephone-based support (telesupport groups) represents a practical, low-burden, low-cost source of emotional support. The present study evaluated the feasibility and effectiveness of professionally led telephone-based support groups for female family caregivers of community-dwelling dementia patients. Recruited through various community sources, 103 female caregivers were randomized to the telesupport group treatment or a control condition. Effects on caregiver burden, depression, and personal gains were evaluated at 6 months, the main end point. Older care-givers (> or =65) in telesupport reported lower depression than control group caregivers did.

Background: Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Finding better ways to support family caregivers is a major public health challenge., Objective: To test the effects of a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in 3 diverse racial or ethnic groups., Design: Randomized, controlled trial., Setting: In-home caregivers in 5 U.S. cities., Participants: 212 Hispanic or Latino, 219 white or Caucasian, and 211 black or African-American caregivers and their care recipients with Alzheimer disease or related disorders., Intervention: Caregivers within each racial or ethnic group were randomly assigned to an intervention or to a control group. The intervention addressed caregiver depression, burden, self-care, and social support and care recipient problem behaviors through 12 in-home and telephone sessions over 6 months. Caregivers in the control group received 2 brief "check-in" telephone calls during the 6-month intervention., Measurements: The primary outcome was a quality-of-life indicator comprising measures of 6-month caregiver depression, burden, self-care, and social support and care recipient problem behaviors. Secondary outcomes were caregiver clinical depression and institutional placement of the care recipient at 6 months., Results: Hispanic or Latino and white or Caucasian caregivers in the intervention group experienced significantly greater improvement in quality of life than those in the control group (P < 0.001 and P = 0.037, respectively). Black or African-American spouse caregivers also improved significantly more (P = 0.003). Prevalence of clinical depression was lower among caregivers in the intervention group (12.6% vs. 22.7%; P = 0.001). There were no statistically significant differences in institutionalization at 6 months., Limitations: The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into a single group, and excluded some ethnic groups., Conclusions: A structured multicomponent intervention adapted to individual risk profiles can increase the quality of life of ethnically diverse dementia caregivers. ClinicalTrials.gov identifier: NCT00177489.

The purpose of this study was to evaluate the psychometric properties of the Perceived Change Index (PCI), a 13-item scale that measures caregiver appraisals of self-improvement or decline in distinct areas of well-being, and to examine demographic differences in responses. The scale was administered to 255 care-givers participating at the Philadelphia site of the National Institute of Aging-funded Resources for Enhancing Alzheimer's Caregiver Health initiative. Principal axis analysis with one half of the sample was used to evaluate factor structure. Evidence of convergent and divergent validity was examined using the second half of the sample. Differential response patterns by caregiver characteristics were also examined using regression analysis. Using one half of the sample, 3 underlying factors were found (affect, alpha = .85; somatic, alpha = .80; management, alpha = .76), accounting for 63% of the variance. The overall index was internally consistent (Cronbach's alpha = .90). Using the second half of the sample, Pearson correlational analyses of the overall index and its subscales revealed that perceived improvement was significantly associated with fewer depressive symptoms, higher scores on perceived positive aspects of caregiving, and more participation in social activities. As expected, it was not associated with the care recipient's Mini-Mental Status Examination scores or functional status. Perceived improvement scores for specific areas of well-being were associated with being African American, male, and a spouse. The PCI is a brief, easily administered, and valid self-report measure that can serve as an indicator of caregiver appraisal of well-being in research and clinical practice.

Unlabelled: To evaluate psychometric properties and response patterns of the Care-giver Assessment of Function and Upset (CAFU), a 15-item multidimensional measure of dependence in dementia patients and caregiver reaction., Method: 640 families were administered the CAFU (53% White, 43% African American, and 4% mixed race and ethnicity). We created a random split of the sample and conducted exploratory factor analyses on Sample 1 and confirmatory factor analyses on Sample 2. Convergent and discriminant validity were evaluated using Spearman rank correlation coefficients., Results: A two-factor structure for functional items was derived, and excellent factorial validity was obtained. Convergent and discriminant validity were obtained for function and upset measures. Differential response patterns for dependence and caregiver upset were found for caregiver race, relationship, and care recipient gender but not for caregiver gender., Discussion: The CAFU is easily administered, reliable, and valid for evaluating appraisals of dependencies and upsetting care areas.

Background: Few studies evaluate whether short-term intervention effects are maintained over time for families caring for persons with dementia. This article examines whether treatment effects found at 6 months following active treatment were sustained at 12 months for 127 family caregivers who participated in an occupational therapy intervention tested as part of the National Institutes of Health Resources for Enhancing Alzheimer's Caregiver Health (REACH) initiative., Methods: A randomized two-group design was implemented with three assessment points: baseline, 6 months, and 12 months. Caregivers were randomly assigned to a usual care control group or intervention that consisted of six occupational therapy sessions to help families modify the environment to support daily function of the person with dementia and reduce caregiver burden. Following 6-month active treatment, a maintenance phase consisted of one home and three brief telephone sessions to reinforce strategy use and obtain closure. Non-inferiority statistical analysis was used to evaluate whether intervention caregivers maintained treatment benefits from 6 to 12 months in comparison to controls., Results: For the sample of 127 at 6 months, caregivers in intervention reported improved skills (p = .028), less need for help providing assistance (p = .043), and fewer behavioral occurrences (p = .019) compared to caregivers in control. At 12 months, caregiver affect improved (p = .033), and there was a trend for maintenance of skills and reduced behavioral occurrences, but not for other outcome measures., Conclusion: An in-home skills training program helps sustain caregiver affect for those enrolled for more than 1 year. More frequent professional contact and ongoing skills training may be necessary to maintain other clinically important outcomes such as reduced upset with behaviors.

Objective: Recruitment is often the most challenging aspect of research with older persons. Social marketing--applying marketing techniques to influence the behavior of target audiences to improve their welfare--can help researchers identify factors that influence recruitment., Methods: Illustrations of social marketing principles are provided from the Resources for Enhancing Alzheimer's Caregiver Health project, a national Alzheimer's caregivers study that targeted ethnic and racial minorities., Results: Social marketing principles--the six Ps of participants, product, price, place, promotion, and partners--provide a theoretical framework for organizing and planning recruitment activities, including developing varying strategies to define the target audience (participants), develop the intervention (product), manage time and trouble (price), target the audience, improve accessibility (place), promote the study, and develop and work with partners., Discussion: Strategies to enhance recruitment are often undertaken without a comprehensive plan. A social marketing plan provides a framework to map out the steps in recruitment that will be needed and to plan for allocations of time, staff, and resources.

Although there has been considerable interest in racial differences in family caregiving for persons with dementia, most research to date has either ignored racial diversity or based conclusions on small numbers of caregivers drawn primarily from single site studies. The current study utilized participants from four sites of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) multi-site study to compare well-being, appraisal, and religious coping by race. African-American (n = 295) and Caucasian (n = 425) dementia caregivers from four cities (Birmingham, Memphis, Boston, and Philadelphia) were compared in their demographics, care recipient characteristics, mental and physical health, and psychosocial coping resources including appraisal and religious coping. African-American caregivers reported lower anxiety, better well-being, less use of psychotropic medications, more benign appraisals of stress and perceived benefits of caregiving, and greater religious coping and participation, than Caucasian caregivers. Self-rated health did not differ by race, but African-American caregivers reported more unhealthy behaviors than Caucasian caregivers. Some results were specific to site, possibly due to differences in recruitment strategies, inclusion/exclusion criteria, and regional differences. Adjustment for covariates, including caregiver relationship to the care recipient, gender, age, socioeconomic status, and care recipient behavioral problems, altered few of these differences. Results are discussed in terms of their relevance to psychosocial intervention programs for ethnically diverse caregivers., (Copyright Taylor & Francis Ltd)

Purpose: We examine 6-month effects of the Environmental Skill-Building Program on caregiver well-being and care recipient functioning and whether effects vary by caregiver gender, race (White or non-White), and relationship (spouse or nonspouse)., Design and Methods: We enrolled 255 family caregivers of community-residing persons with Alzheimer's disease or related disorders, of whom 190 participated in a follow-up interview. Caregivers were randomized to a usual care control group or intervention group that received five home contacts and one telephone contact by occupational therapists, who provided education, problem-solving training, and adaptive equipment. Baseline and 6-month follow-up included self-report measures of caregiver objective and subjective burden, caregiver well-being, and care recipient problem behaviors and physical function., Results: Compared with controls (n = 101), intervention caregivers (n = 89) reported less upset with memory-related behaviors, less need for assistance from others, and better affect. Intervention spouses reported less upset with disruptive behaviors; men reported spending less time in daily oversight; and women reported less need for help from others, better affect, and enhanced management ability, overall well-being, and mastery relative to control group counterparts. Statistically significant treatment differences were not found for hours helping with instrumental activities of daily living, upset with providing assistance with instrumental activities of daily living and activities of daily living, perceived change in somatic symptoms, White versus non-White caregivers, or care recipient outcomes., Implications: The Environmental Skill-Building Program reduces burden and enhances caregiver well-being in select domains and has added benefit for women and spouses.

Purpose: Little is known about the specific behavioral strategies used by families to manage the physical dependency of persons with Alzheimer's disease and related disorders (ADRD). This study reports the psychometric properties of the Task Management Strategy Index (TMSI), a measure designed to identify actions taken by caregivers to simplify everyday self-care tasks for persons with ADRD. Relationships between use of these strategies and caregiver and care-recipient characteristics were also examined., Design and Methods: A pool of 20 items was developed and initially tested with 202 family caregivers (Sample 1) recruited for a dementia-management intervention study. Principal axis factor analysis was performed to determine scale structure. Convergent and discriminant evidence was examined using Pearson cor-relation and multiple regression analyses with a separate sample of 255 family caregivers (Sample 2) recruited for the Philadelphia site of the National Institutes of Health multisite initiative, Resources for Enhancing Alzheimer's Caregiver Health., Results: Exploratory principal axis factoring yielded one general factor accounting for 60.2% of variance in the first sample. Nineteen items, loading at.3 or above, constituted the final scale (Cronbach's alpha =.81 in Sample 1 and.74 in Sample 2). In Sample 2, TMSI scores were significantly associated with greater functional dependency of ADRD patients, high self-efficacy, and greater use of positive coping strategies. As expected, caregiver upset with disruptive behaviors and caregiver use of criticism-based strategies were not associated with TMSI scores. Higher caregiver education was significantly associated with greater use of task strategies., Implications: Results provide preliminary evidence that the TMSI is an easily administered, reliable, valid scale. Caregivers with lower education may benefit from instruction in the use of these strategies.

Purpose of Study: The authors determined short-term effects of a home environmental intervention on self-efficacy and upset in caregivers and daily function of dementia patients. They also determined if treatment effect varied by caregiver gender, race, and relationship to patient., Design and Methods: Families (N = 171) of dementia patients were randomized to intervention or usual care control group. The intervention involved 5 90-min home visits by occupational therapists who provided education and physical and social environmental modifications., Results: Compared with controls, intervention caregivers reported fewer declines in patients' instrumental activities of daily living (p = .030) and less decline in self-care and fewer behavior problems in patients at 3 months post-test. Also, intervention spouses reported reduced upset (p = .049), women reported enhanced self-efficacy in managing behaviors (p = .038), and women (p = .049) and minorities (p = .037) reported enhanced self-efficacy in managing functional dependency., Implications: The environmental program appears to have a modest effect on dementia patients' IADL dependence. Also, among certain subgroups of caregivers the program improves self-efficacy and reduces upset in specific areas of caregiving.

The article summarizes the study "Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized Controlled Trial," published in the November 21, 2006 issue of "Annals of Internal Medicine." The study aims to develop and test a way to provide support to caregivers assigned to dementia patients. The study involves 212 Hispanic, 219 white and 211 dementia caregivers.