Care Recipient Outcomes Research Articles

Longitudinal Care Network Changes and Associated Healthcare Utilization Among Care Recipients.

This study examines caregiver networks, including size, composition, and stability, and their associations with the likelihood of hospitalization and skilled-nursing facility (SNF) admissions. Data from the National Health and Aging Trends Study linked to Center for Medicare and Medicaid Services data were analyzed for 3855 older adults across five survey waves. Generalized estimating equation models assessed the associations. The findings indicate each additional paid caregiver was associated with higher adjusted risk ratios (aRR) for hospitalization (aRR = 1.24, 95% CI 1.10-1.41) and SNF admission (aRR = 1.28, 95% CI 1.06-1.54) among care recipients, a pattern that is also observed with the addition of unpaid caregivers (hospitalization: aRR = 1.13, 95% CI 1.06-1.20; SNF: aRR = 1.12, 95% CI 1.02-1.23). These results suggest that policies and approaches to enhance the quality and coordination of caregivers may be warranted to support improved outcomes for care recipients.

Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital

BackgroundA randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers’ perceptions of their own and their care-recipients’ needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge.MethodsThe CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient’s life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer’s perception of the care recipient’s future needs, carer’s current needs, and a proposed current and future care plan. The researcher’s philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants’ reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied.ResultsThirty carer participants were included. Analysis identified three major themes: Carers’ perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions.ConclusionThe CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer.Trial RegistrationAustralian Clinical Trials Registration: (ACTRN12619001187134).

Randomized controlled trial of iSupport: Comparison across seven countries

AbstractBackgroundWorld Health Organization (WHO) has developed iSupport for Dementia carers, an online program that aims to improve caregivers’ knowledge and skills, reduce emotional distress and improve the quality of life for both person with dementia and their caregivers. The program has been translated and culturally adapted in 33 countries and randomized controlled trials (RCTs) have been and are being conducted to evaluate effectiveness in Australia and Greater China, Brazil, India, the Netherlands, Portugal, the UK and Japan. We aim to compare and review RCTs protocols and key findings in those countries.MethodProtocols of seven RCTs evaluating the clinical and cost effectiveness of iSupport, and available outcomes data were reviewed and compared.ResultDelivery methods varied across countries ranging from caregivers’ self‐study using iSupport manual to a multicomponent intervention that engaged caregivers in iSupport and provided concomitant support from peers and facilitators. Control conditions also varied allocating the participants to either a waiting list or a control intervention. Sample sizes were between 42 to 390. Data were collected at three time‐points: baseline, three and six or nine months post baseline. The primary outcome was one or a combination of burden, depression, anxiety, health‐related quality of life, and stress. Secondary outcomes included depression, anxiety, quality of life, care recipient outcomes, positive aspects of caregiving, person‐centered attitude, self‐efficacy, mastery, resilience and dementia knowledge. In India, significant improvement was only seen in caregivers' person‐centered attitude towards persons with dementia in the iSupport group. Findings from interim data analysis in Australia and Greater China indicate that the iSupport group significantly improved the mental health component of quality of life, self‐efficacy, and reactions to care recipients’ memory and behavioural problems. The retention rate at 3 months were 36.42% in India, 82% in the UK, 85% in Australia and Greater China and 90.1% in Japan (interim analysis).ConclusionSome of the RCTs are still ongoing and results are expected soon. Preliminary data suggest that iSupport could be beneficial for both caregivers and recipients.

Mindfulness-Based App to Reduce Stress in Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Single-Blind Feasibility Proof-of-Concept Randomized Controlled Trial.

Informal caregivers (ie, individuals who provide assistance to a known person with health or functional needs, often unpaid) experience high levels of stress. Caregiver stress is associated with negative outcomes for both caregivers and care recipients. Mindfulness-based interventions (MBIs) show promise for improving stress, emotional distress, and sleep disturbance in caregivers of persons with Alzheimer disease and related dementias (ADRD). Commercially available mobile mindfulness apps can deliver MBIs to caregivers of persons with ADRD in a feasible and cost-effective manner. We are conducting a single-blind feasibility proof-of-concept randomized controlled trial (RCT; National Institutes of Health [NIH] stage 1B) comparing 2 free mobile apps: the active intervention Healthy Minds Program (HMP) with within-app text tailored for addressing stress among caregivers of persons with ADRD, versus Wellness App (WA), a time- and dose-matched educational control also tailored for caregivers of persons with ADRD. We aim to recruit 80 geographically diverse and stressed caregivers of persons with ADRD. Interested caregivers use a link or QR code on a recruitment flyer to complete a web-based eligibility screener. Research assistants conduct enrollment phone calls, during which participants provide informed consent digitally. After participants complete baseline surveys, we randomize them to the mindfulness-based intervention (HMP) or educational control podcast app (WA) and instruct them to listen to prescribed content for 10 minutes per day (70 minutes per week) for 12 weeks. Caregivers are blinded to intervention versus control. The study team checks adherence weekly and contacts participants to promote adherence as needed. Participants complete web-based self-report measures at baseline, posttest, and follow-up; weekly process measures are also completed. Primary outcomes are a priori set feasibility benchmarks. Secondary outcomes are stress, emotional distress, sleep disturbance, caregiver burden, mindfulness, awareness, connection, insight, and purpose. We will calculate 1-sided 95% CI to assess feasibility benchmarks. Effect sizes of change in outcomes will be used to examine the proof of concept. Recruitment started on February 20, 2023. We have enrolled 27 caregivers (HMP: n=14; WA: n=13) as of June 2023. Funding began in August 2022, and we plan to finish enrollment by December 2023. Data analysis is expected to begin in May 2024 when all follow-ups are complete; publication of findings will follow. Through this trial, we aim to establish feasibility benchmarks for HMP and WA, as well as establish a proof of concept that HMP improves stress (primary quantitative outcome), emotional distress, sleep, and mindfulness more than WA. Results will inform a future efficacy trial (NIH stage II). HMP has the potential to be a cost-effective solution to reduce stress in caregivers of persons with ADRD, benefiting caregiver health and quality of care as well as patient care. ClinicalTrials.gov NCT05732038; https://clinicaltrials.gov/study/NCT05732038. DERR1-10.2196/50108.

A MIXED-METHODS, RANDOMIZED, CONTROLLED EVALUATION OF REMOTE ACTIVITY MONITORING FOR PERSONS LIVING WITH DEMENTIA

Abstract Remote activity monitoring (RAM) technology has the potential to allow at-home caregivers to track the behaviors and activities of persons with dementia in real-time, thus facilitating more proactive symptom management. The aim of the present study was to assess whether RAM technology was associated with reductions in negative health transitions and service utilization for persons with Alzheimer’s disease or related dementias (ADRD). An embedded experimental mixed methods design was used that included 179 caregivers who were followed over a 1.5 year study period. Participants were randomly assigned to receive the RAM technology system or usual care. Follow-up surveys were administered on a bi-annual basis over an 18-month period that collected information on dementia caregiver and care recipient characteristics and outcomes. We developed multilevel mixed effects models to estimate odds ratios for binary outcomes (falls, wandering, health care admissions) and categorical outcomes (frequency of falls and wandering). In adjusted models, RAM technology use was statistically and significantly associated with lower odds of emergency department visits (p<.05) and less frequent falls (p=.05) for people living with dementia over the 1.5 year study period. Technologies that prevent or delay the onset of negative health events via improved care management and monitoring may enhance the care of persons with dementia. As dementia continues to pose an array of challenges for someone living with ADRD, RAM or similar technologies may offer a solution to the conundrum of dementia care.

YES, AND...ENHANCING DEMENTIA CARE COMPETENCY THROUGH IMPROVISATIONAL THEATRE TECHNIQUES

Abstract As the number of persons living with dementia escalates globally, innovations in clinical practice are needed to promote care interactions that lead to positive outcomes for care recipients and their care partners, including family, friends, direct care workers, and other care providers. Our ongoing NIH-funded study, focused on meaningful engagement and quality of life, points to the potential benefits of training care partners to use improvisational (improv) theatre skills in the context of dementia care. We present analysis of data derived from two one-year-long waves of qualitative data collection involving persons with dementia (n=59), their formal and informal care partners (n=165), and participant observation (over 12,000 hours) in six diverse assisted living communities. We identified a minority of care partners who, relative to others, had greater success engaging residents and eliciting positive responses. They also experienced less frustration during care encounters. In interactions with persons with dementia, these individuals routinely extended and accepted invitations to communicate and demonstrated an ability to be in the moment and meet people where they were. They accepted uncertainty about interactions and recognized the need to be flexible. These approaches parallel key improv tenets, which are teachable. We argue that improv training for care partners would enhance care competency and led to positive outcomes for care recipients and providers. Findings contribute to a small, but growing innovative body of literature from a variety of disciplines, including health care, that demonstrates the benefits of improv training in a myriad scenarios and settings, including in dementia care.

HOME HEALTH AIDE CONTINUITY AMONG HOME-BASED LONG-TERM CARE CLIENTS

Abstract Many older adults with functional impairment rely on paid caregivers (e.g., home health aides) to remain living at home. Continuity in the provider of healthcare services is known to impact care-recipient outcomes in settings like primary care; however, limited quantitative research has explored variability in provider continuity among home-based long-term care services. We conducted a retrospective pooled cross-sectional study using a secondary analysis of managed long-term care and home care agency records in order to: 1) describe home health aide continuity among a population of older adults receiving Medicaid-funded home-based long-term care using the Bice-Boxerman index, and 2) identify factors associated with greater home health aide continuity using multivariate regression. Among 3,864 older adults who received claim-paid home health aides services between January 1, 2018 and March 10, 2020, average home health aide continuity scores were lower (i.e., worse continuity) as care hours increased: 0.71 among those receiving < 3 service hours/day (n=1221), 0.62 among those receiving 3-7 service hours/day (n=1622), and 0.41 among those receiving >7 service hours /day. Among those with the highest care hours (>7 hours /day), increases in the level of ADL impairment and cognitive impairment were significantly associated with decreases in continuity scores. While clients with the highest care needs are the most dependent on their home health aides and may benefit most from stable paid caregivers, home health aide continuity scores are the lowest among this group. Future work will explore the impact of home health aide continuity on long-term care-recipient health outcomes.

Caregivers' Cannabis Use: Does Burden Lead to Blunts?

Research on risky health behaviors among caregivers is limited. In this paper, we examine the association between informal caregiving and marijuana use and whether this association varies by age. Using data from Behavioral Risk Factor Surveillance System (2016-2019), a multivariable logistic regression model compared marijuana use in “caregivers” and “expectant caregivers.” We stratified the analyses by age and also assessed the association between caregiving intensity and marijuana use. Among younger individuals (18-49 years), informal caregiving was associated with higher odds of marijuana use. In this group, higher prevalence of marijuana use was positively associated with care intensity. There was no detectable association between caregiving and marijuana use among older individuals (50 years or older). Health behaviors among caregivers differ by age. Combined exposure to informal caregiving and marijuana in young adulthood may lead to adverse long-term health consequences. Immediate effects of marijuana use may negatively influence care recipient outcomes.

Are Care-Recipient Outcomes Attributable to Improved Caregiver Well-Being? A Cluster-Randomized Controlled Trial of Benefit-Finding Intervention

The benefit-finding therapeutic (BFT) intervention, training cognitive reappraisal, and alternative thinking to construct positive aspects of caregiving have been found to reduce caregiver depression. This study examines BFT effects on care-recipient outcomes via reduced caregiver depression. Cluster-randomized double-blind controlled trial. Social centers and clinics. A total of 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18+, 2) without cognitive impairment, 3) providing ≥14 care hours weekly to a relative with mild-to-moderate Alzheimer's disease, and 4) scoring ≥3 on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having Parkinsonism or other forms of dementia. BFT was evaluated against two forms of psychoeducation-standard and simplified (lectures only) psychoeducation. Care-recipient outcomes included neuropsychiatric symptoms (NPS), functional impairment, and global dementia severity (Clinical Dementia Rating sum-of-box), measured at baseline, postintervention, and 4- and 10-month follow up. Mixed-effects regressions showed a significant effect on NPS when compared with simplified psychoeducation only, with BFT participants reporting fewer NPS (especially mood symptoms) at 4-month follow-up (d=-0.52). Furthermore, longitudinal path analysis (using changes in caregiver depression scores at postintervention to predict changes in care-recipient NPS at follow-up) found that this effect was mediated by improved caregiver depression. No other intervention or mediation effects were found or were consistent across analyses. Less depressed caregivers may be able to provide better care and more positive interactions, leading to reduced NPS in care-recipients. However, this benefit of BFT was limited to the comparison with simplified psychoeducation only.

Unpaid Caregiving and Aging in Place in the United States: Advancing the Value of Occupational Therapy.

Unpaid caregivers are often expected to help family members or friends overcome activity limitations and participation restrictions to successfully age in place. Caregivers assume multiple responsibilities, such as managing their own physical and psychosocial needs and navigating a complex health care system, and many feel ill equipped to fulfill the necessary health care responsibilities for their care recipients. Underprepared caregivers may cause poor outcomes for care recipients. Federal and state policy proposals call attention to the need to better support caregivers, especially as their numbers increase. Occupational therapy practitioners are well positioned to effectively engage caregivers as they navigate the health care system. The occupational therapy process looks broadly at the functional abilities, environmental contexts, and occupational demands that play a pivotal role in successful aging in place for clients and better outcomes for their caregivers. Now is the time to define occupational therapy's distinct value to this area.

Characterizing Quality of Life in Caregivers of People with Parkinson's Disease and Dysphagia.

Caring for a family member with dysphagia can negatively impact caregiver wellbeing, although little is known about how dysphagia severity or specific symptoms influence this. The purpose of this study was to examine how objective measures of dysphagia in people with Parkinson's disease influenced their caregivers' quality of life. Fifty caregivers (mainly spouses) of people with Parkinson's disease completed a caregiver quality of life survey. Results were compared to medical chart reviews, interviews, and instrumental evaluations of swallowing from the care recipients. Outcomes included caregiver quality of life score, ratings of airway invasion and pharyngeal residue, and Parkinson's disease duration. Descriptive and regression analyses were completed. All caregivers reported reduced quality of life, with 28% having severely disturbed adaptation. Every care recipient with Parkinson's disease demonstrated airway invasion and/or pharyngeal residue. Together, the combination of older care recipient age and longer disease duration was associated with poorer caregiver quality of life [adj. R2 = 0.10-0.12, p = 0.03-0.4]. Neither airway invasion nor pharyngeal residue was related to caregiver quality of life (p > 0.05). Findings confirmed that caregivers of people with Parkinson's disease and dysphagia experience reduced quality of life; however, current methods of assessing caregivers' quality of life may not adequately account for dysphagia-specific burden. Results highlight the urgent need for the development of dysphagia-specific assessments of caregivers' quality of life to facilitate identification of high-risk caregivers and aid the development of support systems to improve health outcomes for caregivers and care recipients.

The Effects of Home Care Provider Mix on the Care Recipient: An International, Systematic Review of Articles from 2000 to 2020.

In this systematic review, we examine the literature from 2000 to 2020 to ascertain whether we can make strong conclusions about the relative benefit of adding informal care or formal care providers to the care mix among individuals receiving care in the home, specifically focusing on care recipient outcomes. We evaluate how informal care and formal care affect (or are associated with) health care use of care recipients, health care costs of care recipients, and health outcomes of care recipients. The literature to date suggests that informal care, either alone or in concert with formal care, delivers improvements in the health and well-being of older adults receiving care. The conclusions one can draw about the effects of formal care are less clear.

The Dyadic Effects of Perceived Support on Depression in Spousal Care Partners

Relationship quality is an important factor affecting care partners’ health and wellbeing. Supportive marital relationships are associated with better physical and subjective health, whereas strain is associated with poorer health. Recent studies now indicate a dyadic effect of relationship quality on health outcomes, such that an individual’s perceptions of their relationship also affects their partner’s outcomes. Few studies have examined the dyadic effects of relationship quality on mental health among older cognitively intact caregiving couples. To address the lack of dyadic research about how perceived support from one’s spouse related to experiences of depression for individuals and their care partners, we apply cross-sectional actor partner interdependence models (APIMs) to data from the Health and Retirement Study (HRS) (N=490 dyads). APIM regression models controlled for participant demographic characteristics, relationship length, and care recipient functional ability. Findings showed that positive perceived support from a spouse had a stronger negative association with one’s own depression for care recipients than for caregivers. Similarly, greater negative perceived support from a partner was associated with higher levels of depression; whether the partner was the caregiver or care recipient did not make a difference in this model. Although there are hundreds of caregiver interventions to address caregivers’ mental health, few have demonstrated improvement in care recipient outcomes. Observation of both actor and partner effects in this study suggests there may be opportunities to improve care recipient and caregiver mental health by targeting interventions to promote high quality relationships with caregivers or both members of the care dyad.

Evaluation of Reablement Home Care: Effects on Care Attendants, Care Recipients, and Family Caregivers.

Background: The traditional home care model entails caring “for” people with disabilities, not “with” them. Reablement care has been applied to long-term care, but the evidence for care attendants, home care recipients, and family caregivers simultaneously is limited. Methods: First, a survey was conducted to explore the needs of home care recipients and family caregivers to achieve independence at home to develop the reablement home care model for home care. Then, an intervention with two groups was implemented. The experimental group included a total of 86 people who participated in the reablement home care model. The control group included 100 people and received usual home care. The self-reliance concept, job satisfaction, and sense of achievement for care attendants; quality of life for home care users; and caregiving burden for family caregivers were assessed. Results: The reablement home care model improved the job satisfaction and achievement of home care attendants, improved mutual support and independence in the self-reliance concept and quality of life among the users, and reduced the stress of the users and family caregivers. Conclusion: The reablement home care model improved the outcomes for providers, care recipients, and family caregivers. Reablement home care is suggested in long-term care policies.

Caregiver Eligibility for Support Services: Correlates and Consequences for Resource Utilization.

Policymakers and community organizations have implemented numerous programs and services to support the more than 40 million family caregivers in the United States. However, the existence of such services is not sufficient to ensure equitable and optimal access and utilization. Using data from the Caregiving in the US study (2015; n = 1,185), we estimated that nearly one in five family caregivers do not meet broad eligibility criteria for support services. This resource gap was particularly likely to affect high-priority populations such as those caring for someone with a mental health problem. Furthermore, ineligible caregivers had lower service utilization and increased financial strain. The findings highlight a pattern of vulnerability among caregivers who do not meet broad eligibility criteria for financial support resources. Careful policy consideration is needed to determine how support services should be allocated to maximize caregiver and care recipient outcomes at the population level.

The relationship between perceived support and depression in spousal care partners: a dyadic approach

Objectives Caregiving within a spousal partnership marks a novel relationship stage for couples. Caregiving introduces new stressors and affects couples’ ability to cope, and potentially alters perceptions of emotional support. Prior research on older married couples illustrates how perceived support not only affects an individual’s mental health, but also that of their partner. To date, the dyadic relationship between emotional support and mental health is largely unexamined among caregiving partners, where support expectations may differ. Method Actor partner interdependence models using linear mixed modeling were applied to data from spouses where one partner received caregiving within the 2014 and 2016 waves of the Health and Retirement Study. We examined the cross-sectional and lagged associations between perceived emotional support and strain from a spouse on actor and partner depression scores, as well as whether one was the caregiver or the care recipient moderated associations. Results More positive perceptions of support were associated with lower depression scores for oneself (b= −0.55, p < 0.001) and one’s partner (b= −0.24, p < 0.001). Actor effects—how one’s own perceptions of support associate with one’s own depressive symptomology—were stronger for care recipients than for caregivers (b= −0.83, p < 0.001 v. b= −0.26, p < 0.05). Higher perceptions of strain were also associated with higher depression scores for oneself (b = 0.57, p < 0.001) and one’s partner (b = 0.39, p < 0.001), associations that remained even in lagged models. Conclusions The observation of both actor and partner effects in this study suggests opportunities to improve care recipient outcomes through intervention with caregivers or both members of the care dyad.

Longitudinal mixed methods study assessing caregivers of seniors across diverse populations: research protocol

BackgroundCanada’s aging population is increasing, along with the number of caregivers providing support to seniors. Caregiving is a taxing responsibility that often results in loneliness and distress. Creating awareness of available supports for caregivers is essential for their health and to provide the best support to the care recipients. This study aims to better understand and improve the caregiving experience for caregivers from diverse ethnic communities and the LGBTQI2S+ communities. The goal is to improve the well-being and resilience of caregivers and optimize outcomes for care recipients by delivering educational workshops that resemble the design of existing workshops currently offered by the participating social service agency. Content will be adapted based on identified participant learning needs. These workshops will be offered to the English-speaking community, diverse newcomer ethnic groups and the LGBTQI2S+ community.MethodsThis mixed-methods, longitudinal study includes two streams of caregivers; Stream One consists of English-speaking caregivers and care recipients while Stream Two includes individuals from the Afghan, Iranian, Somali-, Tamil- and Spanish-speaking populations and those belonging to LGBTQI2S+ communities. Each stream has two phases; Phase One includes needs assessments using focus groups and semi-structured interviews with caregivers and care recipients while Phase Two includes a pre-test post-test evaluation of educational workshops. The anticipated sample size for Phase One is 30 caregivers from the English-speaking community, 150 from the five linguistic/cultural communities combined and 30 from the LGBTQI2S+ group. For Phase Two, we plan to recruit 250 caregivers from the English-speaking community, 250 from the five linguistic/cultural communities, and 50 from the LGBTQI2S+ group.DiscussionTo provide caregivers with optimal support, we must acknowledge the caregivers and care recipients from diverse communities. Currently, at least two focus groups have been conducted with caregivers from each of the seven targeted groups and workshops have begun for all communities. Recruitment has been a challenge for all groups, but our team continues to conduct outreach with caregivers and will use our learning to inform the delivery of educational caregiver workshops.

Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review.

BackgroundDyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability.ObjectiveThis scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination.MethodsA comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person.ResultsA total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22).ConclusionsThis first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care.

Feasibility of Tele-Prompt: A tablet-based prompted voiding intervention to support informal caregivers of older adults with urinary incontinence

Urinary incontinence (UI) is a highly prevalent condition, burdening older adults and their informal caregivers. This study explored the development and feasibility of a 6-week evidence-based, educational/skill building program delivered via tablet-personal computer aimed at developing informal caregiver UI knowledge; and enhancing informal caregiver skill set in prompted voiding and toileting strategies. Caregivers also received individualized weekly coaching sessions from a nurse expert. Feasibility and preliminary efficacy were tested in three caregiver/care-recipient dyads. Recruitment of eligible participants through community-based resources was a challenge to feasibility. Most caregivers found the technology acceptable, but adherence to prompted voiding was inconsistent. All caregivers rated the intervention highly, reported improvements in their care-recipient's urine leakage, found access to a UI expert beneficial, and would recommend it to a friend. The results suggest that the tablet-facilitated intervention was feasible and acceptable to informal caregivers and showed promise for improving both caregiver and care recipient outcomes.

NOTHING FOR ME WITHOUT ME: CAREGIVER TRAINING NEEDS

Over 34 million informal caregivers provide care to an adult aged 50 or older with over 15 million caregivers caring for a person with dementia. People often become caregivers unexpectedly. For most caregivers little training is available, and most skills are learned “on the job”. The objective of this study is to determine the training needs of caregivers. An anonymous survey was conducted at two caregiver conferences. Caregivers were asked to name up to 5 training needs. For this abstract we report the percent of responses by caregivers. Seventy-nine caregivers completed the survey. Seventy-seven percent (77%) of the caregivers cared for a person over age 50. Increased knowledge of health issues (17%) and resources (17%) were the highest responses. Training in physical caregiving skills i.e. bathing (10%), transfers (8%) and diaper changes (4%) were voiced as important. Training for improving personal interactions with the care recipient was important (9%) as well as how to practice patience, kindness and compassion (7%). Two areas where training is available but perhaps not accessible – caregiver support (9%) and care recipient behaviors (8%) were all important to caregivers. Healthy eating (9%) and stopping or limiting driving by the care recipient (2%) were enunciated as areas requiring training. Many of the training needs should be addressed by healthcare professionals in their interactions with caregivers and care recipients. Programs are available online, but caregivers are not accessing this training. To improve outcomes for both caregivers and care recipients targeted training for caregivers is needed.