Care Recipient Outcomes Research Articles

FEASIBILITY OF CARRES MODULES TO REDUCE POTENTIALLY AVOIDABLE HOSPITALIZATIONS IN PERSONS WITH COGNITIVE DEFICITS

Family caregiving is an essential, yet understudied, factor that can hasten, delay, or prevent hospital readmissions in individuals with cognitive deficits. This 3-month feasibility study examined 18 Internet-based educational CARREs (Communicate, Assist, Recognize & Report Events) Modules for family caregivers that address care recipients’ potentially avoidable hospitalization (PAH) conditions, e.g. UTI. This study determined: 1) caregivers’ perceptions about the use of the CARREs Modules, 2) caregivers’ self-reported value of the Modules, and 3) potential outcomes for caregivers and care recipients. Community-dwelling family caregivers were recruited from local support/education programs and assigned 6-8 Modules based on their care recipients’ needs. Links to online surveys were emailed at baseline, and 30 and 90 days post-enrollment. Descriptive statistics were performed on these data. Twenty potential subjects were screened but five were ineligible and three refused to participate. The remaining 12 subjects were primarily White females caring for a husband or parent. Subjects completed all the Modules they were assigned and did not experience any difficulties answering the survey questions. Subjects reported completing the Modules at least moderately increased their knowledge (67%), not being burdened by completing the Modules (67%), and very likely to participate again (58%). Many subjects stated the Modules taught them new things about preventing hospital readmissions in their care recipient (75%) and improved their well-being as a caregiver (83%). In collaboration with a home care agency, the investigators plan to implement and test a sustainable, “real-world” educational intervention incorporating the CARREs Modules that reaches a wide audience of family caregivers.

PREDICTORS OF MEDICAL, SOCIAL SERVICE, AND MENTAL HEALTH USE AMONG PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS

People with Alzheimer’s disease use more medical services (Eaker et al., 2002) and are admitted to inpatient facilities at higher rates (Zhu et al., 2015) than normal controls. In addition, social services provide support for caregivers and are associated with positive outcomes for care-recipients and their caregivers (Neville, Beattle, Fielding, & MacAndrew, 2014). Despite high level of need, utilization of mental health services and social agencies for caregiver support remains low (Goodarzi, Mele, Roberts & Holroyd-Leduc, 2017; Weber, Pirraglia & Kunik, 2011). Following the Andersen and Newman model (1973), we examined whether predisposing factors (i.e., age of the caregiver and type of PWD-caregiver relationship), needs (i.e., memory impairment, disruptive behaviors, depression, anxiety, pain, functional impairment, caregiver burden, total number of prescribed medications), and enabling factors (i.e., PWD and caregiver income, quality of the PWD-caregiver relationship) differentially predicted the presence of medical, social, and mental health service use. A total of 228 dyads (PWD and the caregiver) were included. We examined each PWD and caregiver characteristic individually (univariate models) and then as a unique predictor of each of the three service use outcomes (multivariate models). A greater number of medications uniquely predicted higher medical service use, greater pain severity and PWD income were uniquely associated with higher social service use, and a greater number of medications and increased memory impairment predicted more mental health service use. These results show that distinct factors predict use of different types of service use among PWD and their caregivers.

Measurement of sexual disinhibition in dementia: A systematic review.

Sexual disinhibition in dementia is correlated with multiple negative care recipient and caregiver outcomes but remains largely overlooked in the literature. Its prevalence is not well understood, with studies reporting between 1.8% and 25% presence of sexual disinhibition in dementia samples. One reason for the variability in the reported presence of sexual disinhibition may be lack of standardized methods for assessment. Several widely used measures for neuropsychiatric symptoms do not include items to assess sexual disinhibition. When measures do include sexual disinhibition, it is not addressed in a consistent manner. Inconsistency in how questions about sexual disinhibition are phrased is problematic, given that recent work shows it can differentially influence endorsement. Working toward a gold standard of sexual disinhibition measurement in dementia is needed. To this end, a systematic review of the literature to identify potentially appropriate instruments for measurement of sexual disinhibition in this population was conducted through the Web of Science and PubMed databases between January 2019 and February 2019. An overview of the 20 measures identified in this search is provided. Each measure is evaluated for appropriateness of use in dementia samples through broad examination of psychometric properties, structure, and format and the extent to which measure content overlaps with current conceptualizations of sexual disinhibition in dementia. Five common content domains were identified: hypersexuality, lewd/aberrant sexual behavior, inappropriate sexual advances, inappropriate sexual comments, and socially disruptive sexual behavior. No single measure addressed all content domains. Directions for future research are identified and discussed.

Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA.

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers' abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA.

Reconsidering frameworks of Alzheimer's dementia when assessing psychosocial outcomes

The purpose of this introductory article to the special issue on psychosocial outcome measures in Alzheimer's & Dementia: Translational Research & Clinical Interventions is to outline new frameworks to more effectively capture and measure the full range of how people living with Alzheimer's dementia and their family caregivers experience the disease process. Specifically, we consider the strengths and weaknesses of alternative perspectives, including person-centered, strength-based, and resilience-focused approaches that may complement and extend the dominant deficit paradigm to reflect the entirety of the dementia experience. Our aim is to encourage innovative methods to measure psychosocial aspects of Alzheimer's dementia and caregiving that have not yet received sufficient attention, including resources (e.g., services and supports) and positive caregiver and care recipient outcomes (e.g., positive mood and adaptation).

Association of Informal Caregiver Distress with Health Outcomes of Community-Dwelling Dementia Care Recipients: A Systematic Review.

Most dementia care occurs in the community with support from informal caregivers who are often distressed. Dementia caregiver distress is known to be hazardous to the caregiver's health, but the impact on the dementia care recipient is not well known. We searched the Medline, Embase, PsycINFO, CINAHL, and Cochrane databases from inception until June 2017 for studies investigating the association of informal caregiver distress with health outcomes of community-dwelling dementia care recipients. The search results were screened and then data abstracted, and the risk of bias was appraised independently by pairs of reviewers. We included 81 original investigations (n = 43 761 caregivers and dementia care recipients). Sixty-six studies (81.5%) were observational or cross-sectional in design, and 47 studies (58%) had a low risk of bias. There was considerable clinical and methodological heterogeneity precluding quantitative synthesis. Dementia care recipients (n = 21 881) had a mean age of 78.2 years (SD ± 3.8 y), half (50.0%) were women, and two-thirds (66.1%) had Alzheimer's disease. The dementia caregivers (n = 21 880) had a mean age of 62.5 years (SD ± 23.3), three-quarters (74.1%) were women, and one-half (50.5%) were spouses of the dementia care recipient. Twenty-two unique dementia care recipient outcomes were studied including cognition, mood, quality of life, function, healthcare utilization, and costs. Overall, informal caregiver distress is commonly associated with the institutionalization of the dementia care recipient, worsening behavioral and psychological symptoms of dementia, and experiencing elder abuse. Informal caregiving is a cornerstone of dementia care, and distress related to this role is associated with worsening of several dementia care recipient health outcomes. It is important that clinicians and researchers worldwide consider the broader consequences of caregiver distress. J Am Geriatr Soc 67:609-617, 2019.

Will housing tenure drive unequal outcomes for Consumer-Directed Care recipients?

Initiatives to promote consumer choice are increasingly a feature of Australian welfare policies and programs. Consumer Directed Care (CDC) for older people and the National Disability Insurance Scheme for people younger than 65 years with a disability are two examples of this move towards consumer choice in policy and program development. The ability for service users to benefit from these programs is premised on the fact that their housing is stable and suitable. Yet, there is evidence that this is not the case, and many older people and people with disabilities experience significant housing challenges and stress. This article focuses on CDC and its implications for one particular group under housing stress - low-income older renters. Might they be at risk of limited access to home care services, and what are the broader local neighbourhood implications of this policy?

Informal Caregiving for Persons with Chronic Conditions: Trends and Considerations

Aging adults with chronic conditions rely heavily on an informal network of caregivers to remain within their communities of choice. This reliance can take a significant toll on caregivers through the lens of physical and psychological problems, financial issues, and social isolation. These variables may then lead to less desirable outcomes for care recipients. This review highlights existing support services in their many forms, including: psychosocial interventions, environmental interventions, respite care, and health information technology as a method of delivery. Given the current trend with informal caregivers assuming increased responsibility in healthcare, programs and services supporting these caregivers must be understood and trialed to ensure that their needs are not overlooked.

Association Between Spousal Caregiver Well-Being and Care Recipient Healthcare Expenditures.

To measure the association between spousal depression, general health, fatigue and sleep, and future care recipient healthcare expenditures and emergency department (ED) use. Prospective cohort study. Health and Retirement Study. Home-dwelling spousal dyads in which one individual (care recipient) was aged 65 and older and had one or more activity of daily living or instrumental activity of daily living disabilities and was enrolled in Medicare Part B (N=3,101). Caregiver sleep (Jenkins Sleep Scale), depressive symptoms (Center for Epidemiologic Studies Depression-8 Scale), and self-reported general health measures. Primary outcome was care recipient Medicare expenditures. Secondary outcome was care recipient ED use. Follow-up was 6months. Caregiver depressive symptoms score and six of 17 caregiver well-being measures were prospectively associated with higher care recipient expenditures after minimal adjustment (P<.05). Higher care recipient expenditures remained significantly associated with caregiver fatigue (cost increase, $1,937, 95% confidence interval (CI)=$770-3,105) and caregiver sadness (cost increase, $1,323, 95% CI=$228-2,419) after full adjustment. Four of 17 caregiver well-being measures, including severe fatigue, were significantly associated with care recipient ED use after minimal adjustment (P<.05). Greater odds of care recipient ED use remained significantly associated with caregiver fatigue (odds ratio (OR)=1.24, 95% CI=1.01-1.52) and caregiver fair to poor health (OR=1.23, 95% CI=1.04-1.45) after full adjustment. Caregiver total sleep score was not associated with care recipient outcomes. Poor caregiver well-being, particularly severe fatigue, is independently and prospectively associated with higher care recipient Medicare expenditures and ED use.

Standard terminology for nursing

ICN anticipates that ICNP® users will develop more catalogues as more nurses use ICNP® in electronic health records and digital communication devices. Nurses who use ICNP® in the documentation of their practice should know the core data elements for their specialty or setting. The following questions needed to be answered: “What nursing diagnoses are most commonly used?”, “What nursing interventions are used?” and “What care recipient outcomes are used in that specialty or setting?” Since ICNP® was first released in 2005, many pre-coordinated statements have been added to the terminology and more catalogues have been developed by nurse experts and published by ICN. The critical need for continued development of ICNP® is the use of the terminology in clinical settings so that the collection of standardized data is available for analysis and research. In this way, nursing will be described. Nurses will then be able to say: “these are our most common diagnoses and interventions” and “these are the best or most-preferred care recipient outcomes.”

Caregivers’ experiences with the selection and use of assistive technology

Qualitative data from a mixed-methods clinical trial are used to examine caregivers’ experiences with the selection and use of assistive technology to facilitate care recipients’ independence. Through a thematic analysis of interviews from 27 caregivers, three broad themes were identified. “A partial peace of mind” described the generally positive psychological impacts from assistive technology, mainly reduced stress and a shift in caregiving labour from physical tasks to a monitoring role. “Working together” explored the caregivers’ experiences of receiving assistive technology and the sense of collaboration felt by caregivers during the intervention process. Finally, “Overcoming barriers“ addressed two impediments to accessing assistive technology: lack of funding and appointment wait times for service providers. The findings suggest that assistive technology provision by prescribers plays a beneficial role in the lives of caregivers, but access to such benefits can be hampered by contextual constraints.Implications for rehabilitationThe study findings have a number of implications for rehabilitation practice:Family caregivers can be instrumental in determining what assistive technology is needed and then procured. Their involvement in the selection process is desirable because assistive technology may have both positive and negative impacts on them, and they themselves may use the devices chosen.Involving family caregivers as more active partners in the process of assistive technology provision may represent a greater time investment in the short term, but may contribute to better long-term outcomes for care recipients and caregivers as well.Limited access to funding and long appointment wait times are potential barriers to obtaining necessary assistive technologies.

WEB-BASED CAREGIVER RESOURCE PORTAL: THE UCLA IMPROVING CAREGIVING FOR DEMENTIA (I-CARED) PROGRAM

Seven out of ten persons with Alzheimer's disease and other dementias are cared for by family members and friends, most of whom have not received any counseling, training or support to prepare them for the caregiving role. There is evidence that personalized interventions for dementia caregivers can lead to improve caregiver and patient outcomes. The Improving Caregiving for Dementia (I-CareD) project aims to provide caregivers of persons with Alzheimer's and other dementias education, training and support. We developed and launched an electronic content distribution system that allows caregivers to receive personalized information tailored to their learning styles and preferences. Caregiver resources in the form of text, audio/video, and web formats were loaded onto the Web-based Caregiver Resource Portal. Dementia care managers (nurse practitioners) were trained and demonstrated ability to create and deploy new resources, create custom emails for the users and view log of when caregivers log in to view content. 166 dementia caregivers received education materials via the I-CareD Web-based Caregiver Resource Portal from October 01, 2016 to January 01, 2017. Of these 66 (40%) caregivers accessed the portal at least once during this period. We found that caregivers who lived with the person with dementia were more likely to access the caregiver resource portal compared to those who did not live with the care recipient [χ(1)=4.073, p = .044]. Average mini-mental state examination (MMSE) score of care recipients of caregivers who did not access the resource portal (login=0; n=9) was 19.67 compared to 15.83 for care recipients of caregivers who did access the resource portal (login≥1; n=6) [t(13)=1.134, p = .277]. A web-based content distribution system for dementia caregiver resources is more likely to be accessed by caregivers who live with the person with dementia. There is a trend towards increased likelihood of accessing electronic content by caregivers of persons with more advanced dementias. Future investigation will focus on the effects of this personalized electronic resource system on caregiver and care recipient outcomes.

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia

To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement.

Adult Day Center Programs and Their Associated Outcomes on Clients, Caregivers, and the Health System: A Scoping Review.

Adult day centers (ADCs) offer a heterogeneous group of services that provide for the daily living, care, nutritional, and social needs of older adults. We sought to conceptually map and identify key gaps and findings from literature focused on ADCs, including the types of programs that exist and their associated outcomes on improving health and strengthening health systems. We conducted a scoping review by searching 5 databases for studies evaluating the outcomes of ADCs specifically for community-dwelling older adults. Included studies were conceptually mapped according to the methods used, type of outcome(s) assessed, study population, disease focus, service focus, and health system considerations. The mapping was used to derive descriptive analyses to profile the available literature in the area. ADC use has positive health-related, social, psychological, and behavioral outcomes for care recipients and caregivers. There is a substantial amount of literature available on some ADC use outcomes, such as health-related, satisfaction-related and psychological and behavioral outcomes, while less research exists on issues of accessibility and cost-effectiveness. As the population ages, policymakers must carefully consider how ADCs can best serve each user and their caregivers with their unique circumstances. ADCs have the potential to help shape health system interventions, especially those targeting caregivers and people requiring long-term care support. Due to the variation among types of ADC programs, future research on ADCs should consider different characteristics of ADC programs to better contextualize their results.

Health literacy of caregivers of adult care recipients: A systematic scoping review.

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English-language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight-item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut-off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self-management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.

Caregiver burden for informal caregivers of patients with dementia: A systematic review.

Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility as the condition of the person with dementia declines. It is important to explore the factors constituting caregiver burden on the informal caregivers of people with dementia. The purpose of this article is to identify the factors constituting caregiver burden on the informal caregivers of people with dementia living in the community. A systematic review of the four databases, including PubMed, PsycINFO, CINAHL and the Cochrane Library, was carried out to access relevant articles published between 2003 and 2012. Twenty-one articles met the inclusion criteria of this study. Behavioural problems or psychological symptoms were the primary factor of the person with dementia that is associated with caregiver burden. Caregiver socio-demographical factors and psychological factors were the two primary factors of the caregiver burden. Several results of this study were based on studies that had their own limitations. Furthermore, the concept of caregiver 'burden' was not clearly defined in some of the studies; instead, the term was broadly defined. Factors of caregiver burden in regard to people with dementia living in the community were clarified in this review study. By identifying all of the factors, healthcare professionals can deliver appropriate assistance to relieve caregiver burden and improve the quality of caregiving for people with dementia. It is important to identify the factors of the burden on the caregivers of people with dementia living in the community to prevent early nursing home placement, deterioration of caregiver's health and reduce the adverse health outcomes for care recipients. A health-related policy should be formulated to help informal caregivers receive more professional assistance. Training opportunities should be provided for family caregivers to reduce the impact of caregiving on the delivery of effective care.

Positive attitudes and person-centred care predict of sense of competence in dementia care staff

Objectives: The number of people who will require institutional care for dementia is rapidly rising. This increase raises questions about how the workforce can meet the challenge of providing quality care. A promising psychological concept that could improve staff and care recipient outcomes is staff sense of competence in their capacity to provide dementia care. The purpose of this study was to elucidate the relative importance of staff factors associated with sense of competence.Method: Sixty-one Australian dementia care staff (mostly nurses, 69%; and allied health, 21%) were recruited. Measures included the Sense of Competence in Dementia Care Staff (criterion) and standardised measures of empirically derived predictors: training, knowledge, attitudes and person-centred care strategies.Results: Standard multiple regression revealed that 33.9% of the variance in sense of competence was explained by the combination of the four predictors. Attitudes and person-centred strategies each uniquely explained a moderate amount of variance, while training and knowledge were not significant predictors of sense of competence.Conclusion: A positive attitude towards people with dementia, and stronger intentions to implement person-centred care strategies, predicted a greater sense of competence to provide care, whereas knowledge and training, commonly believed to be important contributors to sense of competence in dementia care, did not predict this outcome. Investing in strategies that address staff attitude and encourage person-centred care could influence sense of competence, and by extension, dementia care.

Dementia Caregiver Interventions: A Systematic Review of CareRecipient Outcome Measures

Within the last years various interventions for cognitively impaired persons and their informal care- givers have been developed and evaluated. As different these interventions are, as different are the outcome dimen- sions and instruments used. There might be the potential to affect outcomes on both sides. Therefore, the aim of this review is to analyze the amount of studies that report on care recipient outcomes, to show what main outcome dimensions can be categorized, and which validated instruments are most frequently used. A systematic literature search of the electronic databases PubMed, Medline and PsycINFO was conducted. Overall 1547 studies were iden- tified. After exclusion of duplicates and screening of titles and abstracts 162 records remained. Of those 105 would have met the inclusion criteria but 36 records (34.3%) didn't assess any care recipient outcomes. Sixty nine studies (65.7%) reported on care recipient outcomes and were finally analyzed. The following assessments were used most in the main outcome dimensions: the Revised Memory and Behavior Problem Checklist and the Neuro-Psychiatric In- ventory for problem behaviors, the Cornell Scale for Depression in Dementia for depressive symptoms, Quality of Life in Alzheimer's Disease for quality of life, the Mini Mental State Examination for cognition, and Lawton and Brody's Instrumental Activities of Daily Living scale for activities of daily living. In dementia caregiver studies care recipient outcomes should more often be assessed. For a better comparability between interventions and target groups more homogeneity of the instruments is necessary. Instruments that are not specifically developed for cognitively impaired persons should only be used if they have been validated for persons with a comparable cognitive status.

Community care for the Elderly: Needs and Service Use Study (CENSUS): Who receives home care packages and what are the outcomes?

Investigate factors associated with waiting times for home care packages and outcomes for care recipients and carers. Analyses of data collected every four months for 12 months from 55 community-dwelling older adults eligible for government-subsidised packaged care and their carers. Thirty of fifty-five participants were offered a package; they waited from one to 237 days. Baseline quality of life was higher for those offered a package than those not. Baseline care needs and unmet needs, neuropsychiatric symptoms, and cognitive decline did not predict offers. Package receipt compared to non-package receipt was associated with decreased carer burden over time but did not affect levels of unmet care needs, care needs or quality of life. Being offered a home care package was not based on waiting time or unmet care needs. Reforms should include a transparent system of wait listing and prioritisation.

Plain Old Disrespect: Explorations of Recognition and Motivation in Care Work

Existing mainstream economic models for investigating care work have generated limited insights. In contrast, theory developed outside of mainstream economics, particularly theory that utilises feminist insights, appears contextually relevant to care work but is in a relatively early stage of development for application to empirical analysis. This paper considers appropriate models of care work situations, especially the motives for the performance of care work and the specific role played by ‘recognition’. We outline the experiences and perceptions of mature age Australian women who participated in a small exploratory study. We also report data derived from a subsequent survey of almost 4000 Australian aged care workers. We identify recognition as a factor that, thus far, has not been explicitly considered in the economics literature on the motivation for care work but which has the potential to inform strategies aimed at improving outcomes for care workers and care recipients.