Use Of Respite Care Research Articles

Self-Directed Home- and Community-Based Services Improve Outcomes for Family Caregivers: A Systematic Review.

Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes. We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework. Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers. Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

Trend in Respite Use by Race Among Caregivers for People Living With Dementia.

Respite care provides short-term relief for caregivers. Despite efforts to promote respite use among Black caregivers, little is known if disparities in respite use between Black and White dementia caregivers have decreased over time. We examined a trend nationally to see if more recent efforts may have helped reduce disparities in respite use. We used a repeated cross-sectional design, with the data from 2015, 2017, and 2021 of the National Health and Aging Trends Study and National Study of Caregiving. Our study sample included 764 (in 2015), 839 (in 2017), and 521 (in 2021) non-Hispanic White and Black caregivers who provided care to older adults living with dementia, representing weighted 5 157 569 (2015), 5 877 997 (2017), and 4 712 144 (2021) dementia caregivers nationally. We conducted logistic regression models to assess the differences in respite use between White and Black caregivers over time. In 2015, Black dementia caregivers had a respite care use rate 11.6 percentage points (95% CI: -16.9 to -6.4) lower than that of White dementia caregivers. However, both in 2017 and 2021, the difference in the use of respite was not statistically significant, leading to a reduced or no gap in respite use between White and Black dementia caregivers. However, respite use remained low in both groups. Although the gap in respite use between Black and White dementia caregivers had been gradually narrowed over time, more efforts are needed to encourage more respite use among both groups through targeted efforts to address factors that hinder respite use.

Overall survival of homebound patients without cancer receiving inpatient respite care in a hospital ward in Japan: a retrospective observational study

ObjectivesThis study aimed to investigate the relationship between the use of inpatient respite care and the overall survival of homebound patients without cancer admitted to a hospital ward in order...

Neuropsychiatric symptoms are Predictors of Disturbed Sleep in Mexican American Caregivers

AbstractBackgroundCaregivers of people living with dementia are more likely to experience disturbed sleep compared to non‐caregivers. Mexican‐Americans may be especially at risk due to low rates of nursing home use even in advanced dementia, when behavioral symptoms are most apparent. Few studies have evaluated predictors of disturbed sleep in this high‐risk group.MethodUsing data from the 2015 wave of the Hispanic Established Population for Epidemiologic Study of the Elderly, a representative sample of older Mexican‐Americans and their caregivers in the southwestern United States (n = 460), we examined the association of care recipient neuropsychiatric symptoms with disturbed sleep in caregivers. Care recipients’ behavioral symptoms of cognitive decline were assessed using the caregiver‐reported Neuropsychiatric Inventory. We examined caregivers’ depressive symptoms as an additional stressor. Potential “buffers” against sleep disturbances included communal support (neighbor, church, social services) and respite care. Caregivers were classified as having “highly disturbed sleep” if they reported disturbed sleep three or more days a week, and were compared to caregivers with “non‐highly disturbed sleep” (reported disturbed sleep less than three days a week). We used multivariable logistic regression to examine the association between behavioral symptoms and highly disturbed sleep, controlling for demographic factors and care buffers.ResultCaregivers in the sample were predominantly spouses or adult children of their care recipients. They had a mean age of 59.7 and7 8% were women. Care recipients were a mean age of 90 and 65% were women. Caregivers with disturbed sleep (12% of the sample) reported significantly more care recipient NPI symptoms, distress from symptoms, and more depressive symptoms. In the regression model accounting for all predictors, the number of NPI symptoms and depressive symptoms were associated with higher odds of disturbed sleep, while communal support was associated with lower odds of disturbed sleep. Use of respite care did not show associations.ConclusionBehavioral symptoms of cognitive impairment are associated with sleep disturbance in Mexican American caregivers. Though respite has been described as a crucial resource for caregiver sleep health, communal supports were more significantly associated with sleep l. These results should inform the development of culturally‐competent resources for Mexican‐Americans.

Caregiving-Related Work Productivity Loss Among Employed Family and Other Unpaid Caregivers of Older Adults

ObjectivesAlthough nearly half of all family and unpaid caregivers to older adults work, little is known about short-term work impacts of caregiving using measures encompassing both missed work time and reduced productivity while physically at work. We quantify the prevalence, costs, and correlates of caregiving-related work productivity loss. MethodsWe used the 2015 National Study of Caregiving and National Health and Aging Trends Study to estimate caregiving-related work absences (absenteeism) and reduced productivity while at work (presenteeism). We calculated costs of lost productivity using hours lost, compensation, and a wage multiplier, accounting for the additional cost of replacing employee time. We examined correlates of caregiving-related absenteeism and presenteeism separately, using multivariable logistic regression models, adjusting for caregiver sociodemographic characteristics, occupation and hours worked, role overload, older adult health, use of respite care, support groups, flexible workplace schedules, help from family or friends, and caregiver training. ResultsNearly 1 in 4 (23.3%) of the estimated 8.8 million employed family caregivers reported either absenteeism or presenteeism over a 1-month period owing to caregiving. Among those affected, caregiving reduced work productivity by one-third on average—or an estimated $5600 per employee when annualized across all employed caregivers—primarily because of reduced performance while present at work. Productivity loss was higher among caregivers of older adults with significant care needs and varied according to sociodemographic characteristics and caregiver supports. ConclusionsFindings emphasize the potential economic value of targeted policy intervention to support working caregivers.

Measuring the Benefits of Respite Care use by Children with Disabilities and Their Families

PurposeThe benefits of respite care in reducing the burden of caregivers of children with disabilities are well known; however, few studies have effectively quantified such benefits. The aim of the present study was to develop and validate a measure for evaluating the benefit of respite care provided to family caregivers of children with disabilities. Design and methodsThis was a cross-sectional study. We distributed a survey questionnaire to 465 family caregivers between March and April 2017. Participants were asked to respond to items regarding benefits of respite care for themselves and their children. ResultsData in relation to four domains (Child Development, Sense of Peace and Life Fulfillment among Caregivers, Mental Health Support for the Caregiver, and Expansion of Perspectives and Future Vision) were extracted to assess the benefits of using respite care. The full-scale Cronbach's α coefficient was 0.89 and ranged between 0.73 and 0.88 for each individual domain. ConclusionsThe newly developed measure for assessing the benefits of respite care for family caregivers of children with disabilities was highly reliable and valid. Practice implicationsThis objective tool would allow healthcare practitioners to review the quality of respite care they provide and subsequently help them identify ways to improve.

Residential Respite Care Use Is Associated With Fewer Overall Days in Residential Aged Care

ObjectivesTo examine the use of residential respite care and determine associations between respite care and total days spent in residential care (respite days plus long-term care days). DesignA retrospective cohort study of individuals accessing aged care services in Australia using the National Historical Cohort of the Registry of Senior Australians was conducted. SettingResidential respite care (short stays in residential aged care homes) and long-term residential care accessed in all government-subsidized residential aged care homes in Australia. ParticipantsThis study included people who were approved for government-subsidized residential respite care between January 2005 and June 2012 (n = 480,862) and included a 2-year follow-up period. MethodsPoisson regression models were used to examine associations between use of residential respite care and number of days spent in residential care. ResultsOf people approved for residential respite care, 36.9% used their approval within 12 months (32.0% used respite once and went directly to long-term care without returning home, 40.7% used respite once and did not go directly to long-term care, and 27.3% used respite ≥2 times). Compared with people who did not use respite care, using respite care once and not going directly to long-term care was associated with less total days in residential care [incidence rate ratio (IRR) 0.68, 95% confidence interval (CI) 0.67-0.69; P < .001] and using respite care ≥2 times was also associated with fewer days (IRR 0.86, 95% CI 0.84-0.87, P < .001). Using respite care once and going directly to long-term care was associated with more days in residential care (IRR 1.11, 95% CI 1.10-1.12, P < .001). Conclusions and ImplicationsUsing residential respite care was associated with fewer days spent in residential care when people returned home after using respite. The findings suggest that using residential respite as intended by returning home after use achieves the goal of helping people stay living at home longer.

Young people in aged care: trends in the use of aged care services by younger Australians, 2008–2016

Purpose : To determine incidence rate of aged care service use between 2008–2009 and 2015–2016 by younger Australians and the yearly rate of change. Material and methods A population-based epidemiological study was conducted using publicly available datasets from the Australian Institute of Health and Welfare and Australian Bureau of Statistics. The incidence of service utilization by younger people (<65 year) and per 10,000 citizens 0–49, 50–54, 55–59, and 60–64 years old per year was estimated. Negative binomial regression models were used to estimate incidence rate ratios. Results Between 2008–2009 and 2015–2016 the number of younger people accessing services increased for home care services by 103.2% and transition care by 131.9% but decreased for permanent residential care by 0.4%, and respite care by 2.4%. Permanent residential care incidence use decreased for the overall population (incidence rate ratio = 0.98, p < 0.001) and in those 55–59 years old (incidence rate ratio = 0.97, p < 0.001) and for respite care incidence use decreased in those 0–49 years old (incidence rate ratio = 0.93, p = 0.001). The incidence use of home care increased in the overall group (incidence rate ratio = 1.04, p < 0.001) and in those 50–54 (1.08, p < 0.001) and in those 55–59 years old (incidence rate ratio = 1.03, p < 0.001). The use of transition care services increased significantly in all age groups (overall incidence rate ratio = 1.09, p < 0.001). Conclusions The overall use of permanent residential care has decreased along with the use of respite in the youngest people, and the use of home and transition care services have increased. Efforts to keep young people out of residential aged care may have redirected them to home care services. Implications for rehabilitation The number of young people (<65 years old) with disability using aged cares services in Australia has increased significantly between 2008–2009 and 2015–2016. The overall use of permanent residential care has decreased along with the use of respite care, and the use of home and transition care services have increased, which should be encouraged. Development of targeted rehabilitation support programs to support young people with disability housed in residential aged care may help to better cater their care needs. Development of transition pathways to shift young people with disability to appropriate support programs may help to reduce the number of younger people with disability in aged care services.

Factors Associated with the Caregivers’ Desire to Institutionalize Persons with Dementia: A Cross-Sectional Study

Background/Aims: Dementia is one of the main reasons for institutionalization among the elderly. Few studies have explored factors associated with the caregivers’ (CG) desire to institutionalize (DTI) a person with dementia (PWD). The objective of this study is to identify modifiable and non-modifiable psychosocial and sociodemographic factors associated with a caregiver’s DTI. Methods: Cross-sectional data of 355 informal CG of community-dwelling PWD were analyzed. Several characteristics were identified in CG and PWD to be included in a multivariable regression model based on the purposeful selection method. Results: Positively modifiable associated factors were: higher CG burden, being affected by behavioral problems, and respite care use. Positively associated non-modifiable factors were: CG older age, being professionally active, and CG higher educational level. Cohabitation and change of professional situation were negatively associated. Conclusion: Although no causality can be assumed, several practical recommendations can be suggested. First of all, these results reconfirm the importance of multicomponent strategies, especially support aimed at decreasing burden and in learning coping strategies. Also, CG might benefit from information about support options, such as respite care services. Finally, special attention should be given to older and working CG. In the latter, flexible and adaptive working conditions might alleviate burden and therefore reduce the DTI of the PWD.

PND149 - FACTORS ASSOCIATED WITH THE CAREGIVERS’ INTENTION TO INSTITUTIONALIZE PERSONS WITH DEMENTIA

Dementia is one of the main reasons for institutionalization among the elderly. Few studies have explored factors associated with the caregivers’ desire to institutionalize (DIS) the person with dementia (PWD). The objective of this study is to identify modifiable and non-modifiable psychosocial and sociodemographic factors associated with a caregiver’s DIS. Cross-sectional data of 355 informal caregivers (CG) of community-dwelling PWD were analyzed. Several characteristics in CG and PWD were identified to include in a multivariable regression model based on the purposeful selection method. The following modifiable factors were positively associated with DIS based on the regression model: higher caregiver burden (OR=1.052), being affected by behavioral problems (OR=1.396), and respite care use during the last 6 months (OR=3.721). Positively associated non-modifiable factors were: caregiver older age (OR=1.043), being professionally active (OR=0.297), and higher educational level of the caregiver (OR=2.662). Cohabitation between the dyads (OR=0.08) and change of professional situation (OR=0.325) were negatively associated with a DIS. First of all, the independent association of several caregiver and patient characteristics with DIS reconfirms the need for multicomponent strategies, especially support aimed at decreasing burden and in learning coping strategies to deal with behavioral disturbances. Also, caregivers need to be well informed about support options, such as respite care services, in a structured and easy accessible way. Finally, special attention should be given to older and working caregivers. The latter by developing flexible and adaptive working conditions.

Understanding the Care Needs and Profile of People Living at Home With Moderate to Advanced Stage Parkinson Disease.

In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home. All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks. Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer. Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.

Caregiving Load and Respite Service Use: A Comparison between Older Caregivers and Younger Caregivers

ABSTRACTStudy aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.

Family Caregivers of Older Adults, 1999-2015: Trends in Characteristics, Circumstances, and Role-Related Appraisal.

To assess trends in family caregiving between 1999 and 2015. We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined. Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999. Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.

An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan.

Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers' wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother-child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers' psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services.

Taiwanese Registered Nurses' Reasons for Failure to Practice

We examined the reasons why registered nurses do not practice nursing and the correlations between their characteristics and nonpractice factors. One hundred twelve 22-item, six-category questionnaires were completed. Nurses’ main reasons for not practicing nursing were “salaries are not adjusted with workload changes,” “insufficient staff or excessive staff reduction,” and “salaries disproportionate to workload.” Health departments and hospital administrators should adjust nurse-to-patient ratios, include on-leave coefficients in human resource considerations, and arrange part-time staff. The related advocacy could encourage recognition of nursing work and respect for the nursing image. Manual operations should be simplified and positive work environments maintained.and “social living” and build the chance of “independence from parents” through the use of respite care. This result points to the educative contribution of respite care to the development and independence of disabled children.

Disabled Peoples Evaluation on Childhood Respite Care Experience

We interviewed the disabled adults to establish how respite care can help disabled children to become independent. The participants’ respite care experiences began with “difficulties of receiving care from nonparent caregivers” in their elementary/junior high school years to “getting to know the worker(s) they could trust” and “making friends for life”. From their high school years onwards, respite care started to become the opportunity to “choose their caregivers”, “interact with their seniors with the same disabilities and build hopes for their own future” and “continue training towards their independence”. Furthermore, it transpired that the participants’ outlook on respite care reached the current status of “living with hope” via “understanding of and conflict with parents’ feelings” in their elementary to high school years and “emotional independence from parents” in their high school years. The study showed that disabled children could earn their abilities of “care management” and “social living” and build the chance of “independence from parents” through the use of respite care. This result points to the educative contribution of respite care to the development and independence of disabled children.

Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.

Respite Care Services for Patients With Amyotrophic Lateral Sclerosis and Their Families From the Perspective of Home Care Nurses

The objective of this study was to use the perspective of home care nurses to elucidate the reactions of in-home patients with amyotrophic lateral sclerosis (ALS) and their family members regarding use of respite care, and involvement of home care nurses with patients and family before and after respite care. Six home care nurses participated in semistructured interviews. Data of seven ALS patients regarding respite care use were collected. The findings showed that ALS patients had both positive and negative reactions to using respite care. The family members provided highly patient-centered care on a daily basis and they wanted the care staff to provide the same quality of care in the respite care setting. The home care nurses provided various services relevant to respite care for ALS patients and their family members.

The use of natural health products by paediatric patients in respite care.

To determine the use and potential interactions of natural health products (NHPs) with conventional medications in children with life-limiting illnesses. The present study was a retrospective medical record review of palliative care patients <18 years of age who were admitted for respite care to a Canadian paediatric hospice between January 1, 2008 and December 31, 2013. The NHPs were identified according to Health Canada's inclusion criteria. A total of 106 children were included in the present study. Eighty-two (77.4%) had used one or more NHPs: 60 (56%) used vitamins and minerals; 45 (42.5%) used other products including probiotics, omega-3, organic acids and essential fatty acids; 34 (32.1%) used everyday consumer products; 12 (11.3%) used herb or plant-based remedies; and one (0.9%) used homeopathic remedies. Thirty-nine potential NHP-medication and 10 potential NHP-NHP interactions were identified. A considerable number of patients (n=54) used at least one medication and NHP, or two NHPs with potential interactions. The most common type of interaction was pharmacokinetic: decreasing blood concentrations of the medication, NHP or both (43.9% of NHP users); and enhancing the blood concentration of an NHP for NHP-NHP interactions (22% of NHP users). A high proportion of patients in respite care use NHPs. Most used NHPs and medications that have potential interactions, although there were no adverse clinical manifestations in the present study. It is important to educate health care professionals about NHPs, the evidence available and lack thereof. This could reduce the most serious interactions and improve the alliance between parents and health care providers to balance the potential risks and benefits of NHPs.

Respite care for people with dementia and their carers.

Caring for someone with dementia can be emotionally and physically demanding. Respite care is any intervention designed to give rest or relief to caregivers. It is not clear what positive and negative effects such care may have on them, or on people with dementia. To assess the benefits and harms of respite care for people with dementia and their caregivers, in particular the effect of respite care on rates of institutionalisation. The trials were identified from a search of ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group, using the terms respite* OR daycare OR caregiver* relief. ALOIS contains up-to-date records from all major healthcare databases and many ongoing trial databases. Randomised controlled trials comparing respite care with a control intervention for people with dementia. Two review authors carried out study selection independently and reached a consensus through discussion. Data were extracted by a single review author. The review authors contacted all investigators for methodological details not reported in the text and for additional data for three studies included in the previous version of the review. Four trials are now included in the review, with 753 participants. They were different in many ways including the intervention, duration, outcomes and control group so pooling of data was not possible. Overall, the quality of the evidence was rated as very low. Re-analysis of outcomes using data from the published studies found no significant effects of respite care compared to no respite care on any caregiver variable. When respite care was compared to polarity therapy a significant effect was found in favour of polarity therapy for caregiver perceived stress (n = 38, MD 5.80, 95% CI 1.43 to 10.17), but not for other measures of psychological health and other caregiver outcomes. No studies reported evaluable data on outcomes related to the people with dementia. Current evidence does not demonstrate any benefits or adverse effects from the use of respite care for people with dementia or their caregivers. These results should be treated with caution, however, as they may reflect the lack of high quality research in this area rather than an actual lack of benefit. Given the frequency with which respite care is advocated and provided, well-designed trials are needed in this area.