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Glenna S Brewster,1 Melinda Higgins,1 Miranda Varrasse McPhillips,2 Kalisha Bonds Johnson,1 Fayron Epps,1 Katherine A Yeager,1 Donald L Bliwise,3 Kenneth Hepburn1 1Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA; 2University of Pennsylvania, School of Nursing, Philadelphia, PA, USA; 3Division of Sleep Medicine, Emory University School of Medicine, Atlanta, GA, USACorrespondence: Glenna S Brewster, 1520 Clifton Road, NE, Atlanta, GA, 30322-4027, USA, Tel +1 404.712.9164, Email glenna.brewster@emory.eduIntroduction: Sleep disturbance is prevalent in caregivers of persons living with dementia (PLwD). Tele-Savvy, a 7-week virtual psychoeducational intervention, enhances caregivers’ competence and self-care, and reduces depression. While not explicitly designed to do so, Tele-Savvy can potentially improve caregivers’ disturbed sleep. The present study aimed to examine the longitudinal effects of Tele-Savvy on caregivers’ sleep quality and insomnia.Methods: This was a secondary data analysis of a 3-arm randomized control trial [Tele-Savvy (active treatment), Healthy Living (attention control), and usual care (waitlist control)]. Multilevel mixed modeling with intent-to-treat principles tested for group, time, and group-by-time effects. Effect sizes were estimated for all changes from baseline to the initial 6-month post-intervention point. Following completion of the 6-month post-randomization delay, we examined combined outcomes for Tele-Savvy.Results: Participants (n=137; mean age 64.7 years) were predominantly female (68.6%) and White (68.6%). We found no initial group-by-time effects for the Pittsburgh Sleep Quality Index (PSQI) and the Insomnia Severity Index (ISI). For the combined Tele-Savvy group, there was a statistically significant improvement in ISI scores across time (p=0.050). The combined Tele-Savvy effect size for PSQI was d=0.126 and ISI was d=0.310.Discussion: Tele-Savvy resulted in a significant long-term reduction in insomnia symptoms in this sample of caregivers of PLwD and demonstrated a positive trend for improvement in their sleep quality. Since sleep disturbance is so prevalent among caregivers of PLwD, the inclusion of sleep health education into psychoeducation caregiver interventions may yield even better outcomes for caregivers.Plain Language Summary: Many caregivers of persons living with dementia have poor sleep. Tele-Savvy is a 7-week intervention that was delivered online to caregivers improved their caregiving skills and self-care and reduced their depressive symptoms; thus, Tele-Savvy may possibly improve their sleep problems. This study aimed to examine the effects of Tele-Savvy on caregivers’ sleep quality and insomnia over 6 months. Caregivers were randomly assigned to Tele-Savvy (intervention), Healthy Living (comparison intervention), and usual care (no initial intervention). One hundred and thirty-seven caregivers, predominantly female, who were on average 64.7 years, participated in this study and completed measures of insomnia and sleep quality. Insomnia symptoms improved and there was a positive trend for improved sleep quality across time for caregivers who received Tele-Savvy. Since so many caregivers have sleep problems, including sleep health education as a part of other caregiver interventions may lead to even better outcomes for caregivers.Keywords: psychoeducational intervention, Alzheimer’s disease, circadian rhythm, cognitive behavioral therapy for insomnia, depression

Our NINR-supported randomized trial of caregiving training aimed to train family members in dementia caregiving to lessen burden and stress. We gathered measures at baseline and 6 months and one year post-intervention. At baseline the husband, wife, and adult daughter caregivers randomized into the treatment were distinct from each other. ANCOVA comparisons showed significant differences on nine measures, including reaction to their family members' behaviors (.000), feeling relationally deprived (.002), Burden (.051) (wives most upset on all three)and needing to control their family members' behavior (.000, daughters most controlling). After the intervention, husbands, wives, and daughters no longer looked so different. At six months they differed in only three categories, e.g., depression (.037 --wives most depressed), and did not statistically differ at all at one year. A plausible explanation is that the intervention was an appropriate match for different forms of familial caregiving.

The Savvy Caregiver Program (SCP) is a self-contained, fully transportable dementia family caregiver training program based on a caregiver training program found successful in an NINR-supported randomized trial. Developed with support from the Alzheimer's Association, SCP is in use in various settings in Alaska, Colorado, Mississippi, and Minnesota where a randomized trial is currently underway. We have already reported within-group improvements in pre-post measures from participants in 22 earlier SCP programs. In this paper we report a comparison of these results with similar pre-post measures on control subjects from a field trial of another, comparable caregiver training program. In this uncontrolled comparison, SCP participants show, in t-test analysis, significantly better condition at follow-up on meausres of Burden (p=.001), Mastery (p=.011) and caregiver outlook (p=.02). There is a nearly significant similarly positive result on a measure of caregiver response to care recipient behavior (p=.063).

Following baseline measurements, persons caring for community-living demented family members were randomly assigned to two intervention groups or a wait-list control group in an NINR-supported evaluation of family caregiver training programs. These similar programs were designed to provide skills and knowledge and develop attitudes to help family members understand and meet the challenges of the caregiving tasks they had assumed. After one year, all care recipients declined in function and all remaining caregivers (129) indicated declines in self-reported health and relationship with care recipient. T-test analysis showed controls (39) experiencing significantly increased Burden (.006) and Distress (.011) and a significant decline in Mastery (.004) (with no significant change for the experimentals). In ANOVA comparisons of controls and the combined experimentals (90), controlling for ADLs and behavior, experimentals are significantly less depressed (.046) and emotionally enmeshed (.046). Not significant, but of interest, experimentals are less distressed (.059) and less burdened (.092).

Dementia caregiving has multiple facets, often assessed with measures of specific domains of impact (e.g., burden, mastery, depression). We used baseline data from an NINR-supported randomized trial of caregiver training, to develop a composite measure of caregiving impact: Distress. We applied factor analytic techniques to four-dozen baseline measures on 223 subjects. Six resulting factors accounted for 51% of the variance; the largest (accounting for 21%) centered on distress. The measure includes 12 weighted variables with factor loadings from .41 to .73. When normalized, the original sample has a mean Distress score of 50 and a standard deviation of 10. The measure has content, discordant, and concordant validity. We use the Distress measure to compare experimental and control subjects in our study. Controlling for initial values, the groups differed significantly (p = .021) at the six-month point. For six months, the stability coefficient (correlation) = 0.75. For twelve months, it is 0.72.

This article is about the trial of a transportable psychoeducation program for family caregivers of older adults with Alzheimer's disease and other dementias that was based on a program developed and previously tested in an academic setting. Family caregivers were recruited by agencies in three states and invited to participate in a randomized trial of this six-session program. Questionnaires were administered prior to randomization and again 5 to 6 months later to assess program effect. A total of 52 caregivers completed both questionnaires (22 were in the wait-list control group). Experimental participants' scores on measures of mastery and distress were significantly better than control participants' scores at follow-up (Time 2). Results for this transported program showed benefits to caregivers comparable to those in the previous trials. The program demonstrated that it could be offered in a variety of settings and that it had benefit for caregivers. [ABSTRACT FROM AUTHOR]

This study examined the relationship between four framing categories of caregiving (Relational, Instrumental, Reactive, Role Acquiring), derived from interviews with spouse caregivers, and scores on standardized measures of responses to and outcomes of caregiving. Participants were 132 spouses recruited into a larger intervention study of family caregivers of community-dwelling persons with dementia. Qualitative data were analyzed using constant comparative method; quantitative data were analyzed using one-way analysis of variance (ANOVA). Findings demonstrated that relational spouses scored better than spouses in the other three categories, indicating greater positive well-being. Relational spouses also scored significantly lower than instrumental and reactive spouses on a composite caregiver distress measure (p = 0. 003). These results suggest that interventions may need to be tailored to spouses with different caregiving perspectives. [ABSTRACT FROM AUTHOR]

The purposes of this study were to compare the characteristics and support systems of caregivers of frail elderly and medically fragile children and to determine what factors discriminated between caregivers who could (and could not) continue to provide home health care. Caregivers of children were significantly more likely (chi square = 52.30)2), p = .0000) to report that they were managing OK than caregivers of frail elderly. They also reported receiving more support and assistance from formal and informal sources, although in general, less than 30% of the caregivers received any help. Five variables (Mental impairment of the elder, poor physical and mental health of the caregiver, high monthly caregiving-related expenses, and use of paid in-home assistance) explained 35% of the variance between caregivers of frail elderly who were managing OK and those who were unable to continue to manage. Six variables (physical and mental impairment of the child, physical health of the caregiver, feeling like there were no alternative providers, time demand and lack of assistance from others) explained 26.57% of the variance between caregivers of children who were managing OK and those who were unable to continue to manage. The findings suggest that a strong objective stressor, combined with a lack of personal and social resources are associated with caregivers' perceptions that they cannot continue to manage home health care. [ABSTRACT FROM AUTHOR]

Evaluations of the effect of interventions on the terminally ill focus on outcomes such as patient satisfaction and quality of life. Due to the theoretical nature of these measures, researchers must rely on patients and family members as primary data sources. Family members of terminally ill patients wee queried concerning their motives for participation in the National Hospice Study and their reactions to an intensive interview schedule. Of those contacted, 94% agreed to the interview. The most frequently cited reasons for participating in the study were the desire to help other families facing a serious illness and the desire to help the hospice movement. Responses indicated a real enthusiasm for study participation in spite of the stressful nature of the terminally ill patient's situation. [ABSTRACT FROM AUTHOR]

Abstract Background Although extensive research exists on informal long-term care, little work has examined the clinical significance of transitions in family caregiving due to a lack of established clinical cut-points on key measures. The objectives of this study were to determine whether clinically significant changes in symptoms of burden and depression occur among caregivers within 12 months of nursing home admission (NHA) of their relatives with dementia, and to identify key predictors of clinically persistent burden and depression in the first year after institutionalization. Methods Secondary longitudinal analysis of dementia caregivers were recruited from eight catchment areas in the United States with 6- and 12-month post-placement follow-up data. The sample included data on 1,610 dementia caregivers with pre- and six-month post-placement data and 1,116 with pre-placement, six-month, and 12-month post-placement data. Burden was measured with a modified version of the Zarit Burden Inventory. Depressive symptoms were assessed with the Geriatric Depression Scale. Results Chi-square analyses found significant (P < .05) reductions in the number of caregivers who reported clinically significant burden and depressive symptoms after NHA compared to pre-placement. Logistic regression models revealed that wives and daughters were most likely to experience clinically persistent burden and husbands were most likely to experience clinically significant depression after NHA. Conclusions In addition to suggesting that clinically significant decreases in caregiver burden and depression are likely to occur following institutionalization, the results reveal particular subsets of caregivers who are at continued risk of distress. Such findings can facilitate development of screening processes to identify families at-risk following institutionalization.

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months ( N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

One in three people with Alzheimer's or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo), yet most dementia caregiving research has focused solely on spouses or children. This study examined the experiences of friends, neighbors, siblings, and others providing unpaid care for someone with dementia. We conducted semi-structured interviews with 14 caregivers (100% female; age 54-85, mean 71; 93% white, 7% black; 29% friend, 29% sibling or in-law, 21% neighbor, 21% church congregant). Participants balanced three priorities: the person living with dementia's quality of life, the person's safety and well-being, and the caregiver's resources. Caregivers described tensions when these priorities conflicted, such as the person with dementia's goal to live alone versus risks to their physical safety. These findings and future research can inform policies and programs to support non-family dementia caregiving., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Communicating complex information about haemodialysis (HD) and ensuring it is well understood remains a challenge for clinicians. Informed consent is a high-impact checkpoint in augmenting patients' decision awareness and engagement prior to HD. The aims of this study are to (1) develop a digital information interface to better equip patients in the decision-making process to undergo HD; (2) evaluate the effectiveness of the co-designed digital information interface to improve patient outcomes; and (3) evaluate an implementation strategy., Methods and Analysis: First, a co-design process involving consumers and clinicians to develop audio-visual content for an innovative digital platform. Next a two-armed, open-label, multicentre, randomised controlled trial will compare the digital interface to the current informed consent practice among adult HD patients (n=244). Participants will be randomly assigned to either the intervention or control group. Intervention group: Participants will be coached to an online platform that delivers a simple-to-understand animation and knowledge test questions prior to signing an electronic consent form., Control Group: Participants will be consented conventionally by a clinician and sign a paper consent form. Primary outcome is decision regret, with secondary outcomes including patient-reported experience, comprehension, anxiety, satisfaction, adherence to renal care, dialysis withdrawal, consent time and qualitative feedback. Implementation of eConsent for HD will be evaluated concurrently using the Consolidation Framework for Implementation Research (CFIR) methodology., Analysis: For the randomised controlled trial, data will be analysed using intention-to-treat statistical methods. Descriptive statistics and CFIR-based analyses will inform implementation evaluation., Ethics and Dissemination: Human Research Ethics approval has been secured (Metro North Health Human Research Ethics Committee B, HREC/2022/MNHB/86890), and Dissemination will occur through partnerships with stakeholder and consumer groups, scientific meetings, publications and social media releases., Trial Registration Number: Australian and New Zealand Clinical Trials Registry (ACTRN12622001354774)., Competing Interests: Competing interests: PFG: Consentic shareholder; RBS: CEO of Consentic., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)