Center for Applied Research on Aging and Health Research Papers Copyright (c) 2013 Thomas Jefferson University All rights reserved. http://jdc.jefferson.edu/carah_papers Recent documents in Center for Applied Research on Aging and Health Research Papers en-us Fri, 22 Feb 2013 16:36:32 PST 3600 Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. http://jdc.jefferson.edu/carah_papers/17 http://jdc.jefferson.edu/carah_papers/17 Fri, 23 Mar 2012 11:41:19 PDT CONTEXT: Living wills have a poor record of directing care at the end of life, as a copious literature attests. Some speculation centers on the questionable correspondence between the scenario described in living wills versus the real-life circumstances that typically arise at the end of life.

OBJECTIVE: To assess the strength of association between responses to a standard living will question and preferences for treatments in six end-of-life scenarios.

DESIGN: Cross-sectional.

SETTING: Telephone interviews.

PARTICIPANTS: Two hundred two community-dwelling men and women 70 years of age or older in the greater Philadelphia area.

MAIN OUTCOME MEASURES: Strength of preferences for four life-sustaining treatments in each of six poor-health scenarios.

RESULTS: Associations between responses to the standard living will question and preferences for treatment (means across the four) in six specific scenarios were statistically significant but modest in size, accounting for 23% of variance at most. The association for the worse-case scenario (severe stroke with coma) was significantly stronger than for any other association.

CONCLUSIONS: The modest correspondence between living will responses and wishes for life-sustaining treatment in specific scenarios helps to elucidate the living will's poor performance. Presentation of more realistic end-of-life scenarios should improve the living will's ability to guide care, as well as preparing patients and families better for the end of life.

]]> Laraine Winter et al. Aged Choice Behavior Cross-Sectional Studies Female Guidelines as Topic Humans Living Wills Male Palliative Care Terminal Care Treatment Refusal Withholding Treatment A community-integrated home based depression intervention for older African Americans: descripton of the Beat the Blues randomized trial and intervention costs. http://jdc.jefferson.edu/carah_papers/16 http://jdc.jefferson.edu/carah_papers/16 Wed, 14 Mar 2012 13:03:24 PDT ABSTRACT: BACKGROUND: Primary care is the principle setting for depression treatment; yet many older African Americans in the United States fail to report depressive symptoms or receive the recommended standard of care. Older African Americans are at high risk for depression due to elevated rates of chronic illness, disability and socioeconomic distress. There is an urgent need to develop and test new depression treatments that resonate with minority populations that are hard-to-reach and underserved and to evaluate their cost and cost-effectiveness. METHODS/DESIGN: Beat the Blues (BTB) is a single-blind parallel randomized trial to assess efficacy of a non-pharmacological intervention to reduce depressive symptoms and improve quality of life in 208 African Americans 55+ years old. It involves a collaboration with a senior center whose care management staff screen for depressive symptoms (telephone or in-person) using the Patient Health Questionnaire (PHQ-9). Individuals screened positive (PHQ-9 ≥ 5) on two separate occasions over 2 weeks are referred to local mental health resources and BTB. Interested and eligible participants who consent receive a baseline home interview and then are randomly assigned to receive BTB immediately or 4 months later (wait-list control). All participants are interviewed at 4 (main study endpoint) and 8 months at home by assessors masked to study assignment. Licensed senior center social workers trained in BTB meet with participants at home for up to 10 sessions over 4 months to assess care needs, make referrals/linkages, provide depression education, instruct in stress reduction techniques, and use behavioral activation to identify goals and steps to achieve them. Key outcomes include reduced depressive symptoms (primary), reduced anxiety and functional disability, improved quality of life, and enhanced depression knowledge and behavioral activation (secondary). Fidelity is enhanced through procedure manuals and staff training and monitored by face-to-face supervision and review of taped sessions. Cost and cost effectiveness is being evaluated. DISCUSSION: BTB is designed to bridge gaps in mental health service access and treatments for older African Americans. Treatment components are tailored to specific care needs, depression knowledge, preference for stress reduction techniques, and personal activity goals. Total costs are $584.64/4 months; or $146.16 per participant/per month. TRIAL REGISTRATION: ClinicalTrials.gov #NCT00511680.

]]> Laura N Gitlin et al. A non-pharmacological intervention to manage behavioral and psychological symptoms of dementia and reduce caregiver distress: design and methods of project ACT3. http://jdc.jefferson.edu/carah_papers/15 http://jdc.jefferson.edu/carah_papers/15 Thu, 08 Mar 2012 13:25:07 PST 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.

]]> Laura N Gitlin et al. Caregivers Dementia Family Relations Home Care Services Humans Occupational Therapy Philadelphia Program Evaluation Quality of Life Stress, Psychological Data and safety monitoring in social behavioral intervention trials: the REACH II experience http://jdc.jefferson.edu/carah_papers/14 http://jdc.jefferson.edu/carah_papers/14 Tue, 06 Nov 2007 11:15:55 PST Background Psychosocial and behavioral interventions trials targeting a broad range of complex social and behavioral problems such as smoking, obesity and family caregiving have proliferated in the past 30 years. At the same time the use of Data and Safety Monitoring Boards (DSMBs) to monitor the progress and quality of intervention trials and the safety of study participants has increased substantially. Most of the existing literature and guidelines for safety monitoring and reporting of adverse events focuses on medical interventions. Consequently, there is little guidance for investigators conducting social and behavior trials.

Purpose This paper summarizes how issues associated with safety monitoring and adverse event reporting were handled in the Resources for Enhancing Alzheimer's Caregiver Health (REACH II) program, a multi-site randomized clinical trial, funded by the National Institutes on Aging (NIA) and the National Institutes of Nursing Research (NINR), that tested the efficacy of a multicomponent social/behavioral intervention for caregivers of persons with Alzheimer's disease.

Methods A task force was formed to define adverse events for the trial and protocols for reporting and resolving events that occurred. The task force conducted a review of existing polices and protocols for data and safety monitoring and adverse event reporting and identified potential risks particular to the study population. An informal survey regarding data and safety monitoring procedures with investigators on psychosocial intervention trials was also conducted.

Results Two categories of events were defined for both caregivers and patients; adverse events and safety alerts. A distinction was also made between events detected at baseline assessment and those detected post-randomization. Standardized protocols were also developed for the reporting and resolution of events that occurred and training of study personnel. Results from the informal survey indicated wide variability in practices for data safety and monitoring across psychosocial intervention trials. Conclusions Overall, the REACH II experience demonstrates that existing guidelines regarding safety monitoring and adverse event reporting pose unique challenges for social/behavioral intervention trials. Challenges encountered in the REACH II program included defining and classifying adverse events, defining "resolution" of adverse events and attributing causes for events that occurred. These challenges are highlighted and recommendations for addressing them in future studies are discussed.

]]> Sara J. Czaja et al. Evaluation of a telephone-based support group intervention for female caregivers of community-dwelling individuals with dementia http://jdc.jefferson.edu/carah_papers/13 http://jdc.jefferson.edu/carah_papers/13 Thu, 23 Aug 2007 15:16:09 PDT 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 caregivers (≥65) in telesupport reported lower depression than control group caregivers did.

]]> Laraine Winter et al. Mild cognitive impairment, activity participation, functional difficulty, and adaptations in functionally vulnerable elderly people: A closer look http://jdc.jefferson.edu/carah_papers/12 http://jdc.jefferson.edu/carah_papers/12 Thu, 23 Aug 2007 15:14:00 PDT Laraine Winter et al. Current health and preferences for life-prolonging treatments: An application of prospect theory to end-of-life decision making http://jdc.jefferson.edu/carah_papers/11 http://jdc.jefferson.edu/carah_papers/11 Thu, 23 Aug 2007 15:13:59 PDT Laraine Winter et al. Religious locus of control http://jdc.jefferson.edu/carah_papers/10 http://jdc.jefferson.edu/carah_papers/10 Thu, 23 Aug 2007 15:13:58 PDT Laraine Winter Mild cognitive impairment, activity participation, functional difficulty, & adaptations http://jdc.jefferson.edu/carah_papers/9 http://jdc.jefferson.edu/carah_papers/9 Thu, 23 Aug 2007 15:13:57 PDT Laraine Winter et al. The tension of loss in old age http://jdc.jefferson.edu/carah_papers/8 http://jdc.jefferson.edu/carah_papers/8 Thu, 23 Aug 2007 15:13:56 PDT Our poster is based on a larger qualitative study that explores the personal meaning of suffering to 122 community-dwelling elders. Because loss in old age emerges as a significant aspect of suffering in elders' narratives, we focus on suffering as loss. We are recruiting community dwelling elders aged 80 and above, stratified by ethnicity, gender and self-reported health for extended qualitative interviews. Respondents tell their life story and story of suffering along with personal definitions of suffering. Through narrative analysis we examine responses to the many losses experienced during a long life and the suffering that results from loss. By old age, elders have endured many significant losses (jobs, education, friendships, death) and are considered more familiar with loss than younger persons. Most respondents use personal tools, such as strong self-view, optimism, or keeping busy in order to manage the suffering that results from loss. In this poster we use a case study to demonstrate how one elderly woman's standard of accepting loss failed in the face of her daughter's death. Mrs. W's case study reveals the tension between a theory about loss, and the lived experience of loss that results in suffering. Her narrative has implications for health care professionals involved in any type of grief work. If a world or self view has ‘worked' for an individual throughout their life, it may be difficult to alter that viewpoint in old age.

]]> Christa Caruso et al. The role of spiritual well-being in moderating frail elders' affective response to functional difficulty http://jdc.jefferson.edu/carah_papers/7 http://jdc.jefferson.edu/carah_papers/7 Thu, 23 Aug 2007 15:13:54 PDT Anxiety and depression have been well documented as affective consequences of functional impairment. Little research, however, has examined factors that moderate these associations. The present cross-sectional study examined the role of spiritual well-being in buffering the impact of functional difficulty on the anxiety and depressive symptoms of 319 functionally vulnerable community-dwelling elders, aged 70 or older, participating in a 6-month randomized controlled trial designed to enhance function. As demonstrated in recent research on spirituality and health, we expected that spiritual well-being would moderate the association between functional difficulty and anxiety as well as the relationship between functional difficulty and depression. Functional difficulty was significantly associated with anxiety (r = .27, p = .000) and depression (r = .33, p = .000) such that anxiety and depression increased as did functional difficulty. Spiritual well-being was assessed using an 8-item subscale of Lawton et al.'s (2001) Valuation of Life scale (e.g., "Life has meaning for me."). After controlling for demographic and health conditions, results of separate regression analyses indicated that spiritual well-being had a moderating effect on the association between functional difficulty and depression (R 2 = .42, p [interaction] = .041), i.e., elders with greater functional difficulty and greater spiritual well-being experienced less depression. Contrary to expectations, spiritual well-being did not buffer the effect of functional difficulty on anxiety. Spiritual well-being has a differential effect on mental health. It appears to afford protection against the depressive consequences of functional impairment in frail elders but not anxiety. (NIA funded #AG 13687).

]]> Marie P. Dennis et al. What is Valuation of Life for frail community-dwelling older adults: Factor structure and criterion validity of the VOL http://jdc.jefferson.edu/carah_papers/6 http://jdc.jefferson.edu/carah_papers/6 Thu, 23 Aug 2007 15:13:53 PDT Lawton et al. (1999) defined valuation of life (VOL) as a cognitive-affective schema consisting of complex judgments, emotions and projections influenced by demographic and QOL factors. However, little is known about what constitutes VOL for frail elders. The present study evaluated the psychometric properties of a 13-item version of Lawton et al's. (2001) VOL Scale and examined correlational evidence in support of its construct validity with 319 elders enrolled in the Project ABLE study. Responses of half the sample (N=159) were submitted to principal axis factoring, yielding two factors (spiritual well-being, a = .88 and goal-related self-efficacy, a = .84), accounting for 56% of the variance. For remaining elders (N = 160), reliability analyses indicated that the 13-item VOL was internally consistent (a = .91). We expected and found that low depression (p = .000), high mastery (p = .000) and greater use of control strategies (p = .000) were predictive of VOL (R 2 = .42, p = .000), spiritual well-being (R 2 = .38, p = .000) and goal-related self-efficacy (R 2 = .31, p = .000), but falls and cognitive status were not. Participants' social support and race were also associated with VOL with non-whites scoring higher on VOL (M = 53.6 vs. M = 48.2). VOL is a complex construct composed of two dimensions, spiritual well-being and confidence in goal pursuit. These dimensions suggest that behavioral and cognitive activation is central to understanding how older adults appraise or value their life. (Study funded by NIA #AG 13687)

]]> Marie P. Dennis et al. A randomized trial of a multicomponent home intervention to reduce functional difficulties in older adults http://jdc.jefferson.edu/carah_papers/5 http://jdc.jefferson.edu/carah_papers/5 Fri, 17 Aug 2007 14:13:31 PDT OBJECTIVES: To test the efficacy of a multicomponent intervention to reduce functional difficulties, fear of falling, and home hazards and enhance self-efficacy and adaptive coping in older adults with chronic conditions.

DESIGN: A prospective, two-group, randomized trial. Participants were randomized to a treatment group or no-treatment group.

SETTING: Urban community-living older people.

PARTICIPANTS: Three hundred nineteen community-living adults aged 70 and older who reported difficulty with one or more activities of daily living.

INTERVENTION: Occupational and physical therapy sessions involving home modifications and training in their use; instruction in strategies of problem-solving, energy conservation, safe performance, and fall recovery techniques; and balance and muscle strength training.

MEASUREMENTS: Outcome measures included self-rated functional difficulties with ambulation, instrumental activities of daily living, activities of daily living, fear of falling, confidence performing daily tasks, and use of adaptive strategies. Observations of home hazards were also conducted.

RESULTS: At 6 months, intervention participants had less difficulty than controls with instrumental activities of daily living (P = .04, 95% confidence interval (CI) = -0.28 – 0.00) and activities of daily living (P = .03, 95% CI = -0.24 to -0.01), with largest reductions in bathing (P = .02, 95% CI = -0.52 to -0.06) and toileting (P = .049, 95% CI = -0.35 – 0.00). They also had greater self-efficacy (P =.03, 95% CI = 0.02 – 0.27), less fear of falling (P = .001, 95% CI = 0.26 – 0.96), fewer home hazards (P = .05, 95% CI = -3.06 – 0.00), and greater use of adaptive strategies (P = .009, 95% CI = 0.03 – 0.22). Benefits were sustained at 12 months for most outcomes.

CONCLUSION: A multicomponent intervention targeting modifiable environmental and behavioral factors results in life quality improvements in community-dwelling older people who had functional difficulties, with most benefits retained over a year.

]]> Laura N. Gitlin et al. Innovation in occupational therapy practice: Evidence in working with families caring for persons with dementia http://jdc.jefferson.edu/carah_papers/4 http://jdc.jefferson.edu/carah_papers/4 Thu, 16 Aug 2007 11:27:55 PDT Laura N. Gitlin Caregiver strategy use to contend with cognitive and functional decline in persons with dementia http://jdc.jefferson.edu/carah_papers/3 http://jdc.jefferson.edu/carah_papers/3 Thu, 16 Aug 2007 11:27:54 PDT Laura N. Gitlin et al. Provider-caregiver interactions: Evaluation and use of the therapeutic relationship index for caregiver interventions http://jdc.jefferson.edu/carah_papers/2 http://jdc.jefferson.edu/carah_papers/2 Thu, 16 Aug 2007 11:27:53 PDT Yeon Kyung Chee et al. New directions in dementia care at home http://jdc.jefferson.edu/carah_papers/1 http://jdc.jefferson.edu/carah_papers/1 Thu, 16 Aug 2007 11:27:52 PDT Tracey Vause-Earland et al.