Racial Differences in Respite Use among Black and White Caregivers for People Living with Dementia.

Objectives: To examine racial differences in respite utilization among a nationally representative sample of caregivers for persons living with dementia (PLwD). A secondary aim identified factors associated with respite utilization. Methods: Using data from the 2015 National Health and Aging Trends Study and National Study of Caregiving, we conducted binary logistic regression to examine racial difference in respite use among Black and white caregivers (n = 750). Results: 22% of the sample used respite for PLwD. Black dementia caregivers were 69% less likely (odds ratio: .31, p = .001) to use respite compared to white caregivers. Other factors associated with utilization included education, receiving help with caregiving, and providing care for more self-care/mobility tasks or to a Medicaid-enrollee. Discussion: Findings suggest that Black dementia caregivers may be at risk for less frequent use of respite and highlight the need to identify factors that promote respite use.

Unmet Respite Needs of Children With Medical Technology Dependence.

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers.

AIMS: Planning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey. METHODS: The number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role. RESULTS: In 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1% v. 19.7% of carers) and less likely to assist with practical tasks (64.1% v. 86.6%) and activities of daily living (31.9% v. 48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers - the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0% v. 3.2%), and 35.0% did not know what services were available to them. CONCLUSIONS: Results reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports.

The Effectiveness of a Peer-Staffed Crisis Respite Program as an Alternative to Hospitalization.

OBJECTIVE: This study assessed whether peer-staffed crisis respite centers implemented in New York City in 2013 as an alternative to hospitalization reduced emergency department (ED) visits, hospitalizations, and Medicaid expenditures for individuals enrolled in Medicaid. METHODS: This study used Medicaid claims and enrollment data for January 2009 through April 2016 to estimate impacts on ED visits, hospitalizations, and total Medicaid expenditures by using a difference-in-differences model with a matched comparison group. The study sample included 401 respite center clients and 1,796 members of the comparison group. RESULTS: In the month of crisis respite use and the 11 subsequent months, Medicaid expenditures were on average $2,138 lower per Medicaid-enrolled month and there were 2.9 fewer hospitalizations for crisis respite clients than would have been expected in the absence of the intervention (p<.01). CONCLUSIONS: Peer-staffed crisis respite services resulted in lowered rates of Medicaid-funded hospitalizations and health expenditures for participants compared with a comparison group. The findings suggest that peer-staffed crisis respites can achieve system-level impacts.

Effects of respite care training on respite provider knowledge and confidence, and outcomes for family caregivers receiving respite services.

Respite services are vital in supporting informal caregivers in need of a break from their caregiving duties. A respite training program aimed at developing respite provider competence and improving caregiver well-being was evaluated. Trainees experienced significant growth in their perceived respite knowledge and confidence to deliver respite from pretraining to posttraining. An objective core competency assessment confirmed posttraining knowledge in 10 core areas of respite. Family caregivers provided more favorable ratings on various measures of their well-being while receiving respite from a trained provider compared to before respite began and if respite were to end. Findings suggest that formal training prepares providers to deliver quality respite resulting in improved caregiver outcomes.

Respite service use among caregivers of older people: comparative analysis of family dementia caregivers with musculoskeletal and circulatory system disorder caregivers.

OBJECTIVES: To identify the main drivers of the use of respite services and the need for respite services among caregivers of people experiencing dementia relative to family caregivers of people with other health conditions. METHOD: Based on nationally representative secondary data regression analysis was used to test the association between selected health conditions and the utilisation of and need for respite services. RESULTS: For a person living with dementia the odds of using respite care are higher than for a person with either a musculoskeletal or circulatory condition. Family caregivers of people living with dementia report the odds of the need for more respite as 5.3 times higher than for family caregivers of people with musculoskeletal conditions and 7.7 times higher than for family caregivers of people with circulatory conditions. The main reason for never using respite services is largely driven by the type of health condition, age of care recipient, existence of a spouse, and level of disability. CONCLUSIONS: Respite services that cater to the specific needs of families experiencing dementia at home should become a higher priority within the aged care sector. Alternative models of respite care that focus on prevention and early intervention would be cost effective.

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

Study 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.

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.

Hospice care in the Netherlands: who applies and who is admitted to inpatient care?

BACKGROUND: Ten percent of non-sudden deaths in the Netherlands occur in inpatient hospice facilities. To investigate differences between patients who are admitted to inpatient hospice care or not following application, how diagnoses compare to the national population, characteristics of application, and associations with being admitted to inpatient hospice care or not. METHODS: Data from a database representing over 25% of inpatient hospice facilities in the Netherlands were analysed. The study period spanned the years 2007-2012. Multivariate regression analyses were performed to study associations between demographic and application characteristics, and admittance. RESULTS: Ten thousand two hundred fifty-four patients were included. 84.1% of patients applying for inpatient hospice care had cancer compared to 37.0% of deaths nationally. 52.4% of applicants resided in hospital at the time of admission. Most frequent reasons for application were the wish to die in an inpatient hospice facility (70.5%), needing intensive care or support (52.2 ), relieving caregivers (41.4%) and needing pain/symptom control (39.9%). Living alone (OR 1.68, 95% CI 1.46-1.94), having cancer (OR 1.40, 95% CI 1.11-1.76), relieving caregivers (OR 1.18, 95% CI 1.01-1.38), needing pain/symptom control (OR1.72, 95% CI 1.46-2.03) wanting inpatient hospice care until death (vs respite care) (OR 3.59, 95% CI 2.11-6.10), wanting to be admitted as soon as possible (OR 1.64, 95% CI 1.42-1.88), and being referred by a primary care professional (OR 1.36, 95% CI 1.17-1.59) were positively associated with being admitted. Wishing to die in an inpatient hospice facility was negatively associated with being admitted (OR 0.85, 95% CI 0.72-1.00). CONCLUSIONS: This study suggests that when applying for inpatient hospice care, patients who seem most urgently in need of inpatient hospice care are more frequently admitted. However, non-cancer patients seem to be an under-represented population. Staff should consider application based on need for palliation, irrespective of diagnosis.

Underuse and Unawareness of Residential Respite Care Services in Dementia Caregiving: Constraining the Need for Relief.

This article describes an analysis of the use of residential respite care services and the factors that influence the use of such services among informal caregivers of people with dementia. The authors studied a sample of 223 caregivers participating in a community-based intervention project in northern Portugal. Participants provided information on their overall caregiving situation and on their use or willingness to use respite care services. Results showed that fewer than 6 percent of caregivers accessed the services and that although most caregivers were not familiar with these services, they recognized their importance and strongly considered the possibility of using them. Part-time care, lower levels of gratification, higher burden, and the care receiver's attendance of day center supported the willingness to use residential respite services. The limited offer, not knowing about the services, and cultural issues related to the family duties within the caregiving role can explain the low use of these services. Social work professionals have an important role in promoting residential respite care services, and thereby helping to reduce caregiving overload.

Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting.

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA 'Instrument for Assessing Home-Based Care Arrangements for People with Dementia') was developed and distributed in a provincial-rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.

Respite Care for Single Mothers of Children with Autism Spectrum Disorders.

Single mothers of children with autism spectrum disorders are rarely studied, yet they may experience unique stressors. Researchers asked 122 single mothers to complete questionnaires concerning respite care, daily hassles/uplifts, depression, and caregiver burden. More than half (59.8%) accessed respite care, which was provided for 1 h per day, often by multiple sources (41%), such as grandparents and community agencies; most were satisfied with this care. Most mothers (77%) were at risk for clinical depression. While uplifts were negatively correlated with depression, hassles and caregiver burden were positively correlated with depression. Respite care was positively related to daily uplifts, and uplifts mediated the relationship between respite care and depression. Recommendations for researchers, policymakers, and school personnel are offered.

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia.

OBJECTIVE: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. METHODS: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). RESULTS: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. CONCLUSIONS: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. IMPLICATIONS: Increased coverage of respite services, more flexible service delivery models matched to carers' needs and better integration with other support services are indicated.

Literature review: use of respite by carers of people with dementia.

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventy-six international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

Comparing service use and costs among adolescents with autism spectrum disorders, special needs and typical development.

Autism spectrum disorder is a complex condition that requires specialised care. Knowledge of the costs of autism spectrum disorder, especially in comparison with other conditions, may be useful to galvanise policymakers and leverage investment in education and intervention to mitigate aspects of autism spectrum disorder that negatively impact individuals with the disorder and their families. This article describes the services and associated costs for four groups of individuals: adolescents with autistic disorder, adolescents with other autism spectrum disorders, adolescents with other special educational needs and typically developing adolescents using data from a large, well-characterised cohort assessed as part of the UK Special Needs and Autism Project at the age of 12 years. Average total costs per participant over 6 months were highest in the autistic disorder group (£11,029), followed by the special educational needs group (£9268), the broader autism spectrum disorder group (£8968) and the typically developing group (£2954). Specialised day or residential schooling accounted for the vast majority of costs. In regression analysis, lower age and lower adaptive functioning were associated with higher costs in the groups with an autism spectrum disorder. Sex, ethnicity, number of International Classification of Diseases (10th revision) symptoms, autism spectrum disorder symptom scores and levels of mental health difficulties were not associated with cost.

Why carers use adult day respite: a mixed method case study.

BACKGROUND: We need to improve our understanding of the complex interactions between family carers' emotional relationships with care-recipients and carers use of support services. This study assessed carer's expectations and perceptions of adult day respite services and their commitment to using services. METHODS: A mixed-method case study approach was used with psychological contract providing a conceptual framework. Data collection was situated within an organisational case study, and the total population of carers from the organisation's day respite service were approached. Fifty respondents provided quantitative and qualitative data through an interview survey. The conceptual framework was expanded to include Maslow's hierarchy of needs during analysis. RESULTS: Carers prioritised benefits for and experiences of care-recipients when making day respite decisions. Respondents had high levels of trust in the service and perceived that the major benefits for care-recipients were around social interaction and meaningful activity with resultant improved well-being. Carers wanted day respite experiences to include all levels of Maslow's hierarchy of needs from the provision of physiological care and safety through to the higher levels of belongingness, love and esteem. CONCLUSION: The study suggests carers need to trust that care-recipients will have quality experiences at day respite. This study was intended as a preliminary stage for further research and while not generalizable it does highlight key considerations in carers' use of day respite services.

Understanding primary carers' occupational adaptation and engagement.

BACKGROUND/AIM: Primary carers for people with intellectual disability living in remote rural areas experience high demand care commitments that may require them to be available twenty-four hours seven days a week and reduce their access to formal or respite support leaving them little time to engage in other occupations. The aim of this study was to explore the impact of caring for a person with an intellectual disability living in remote rural farming location on primary carers' occupational engagement. METHOD: A thematic analysis, using an interpretive phenomenological analysis approach, was conducted on seven in-depth semi-structured interviews of primary carers. RESULTS: Occupational adaptation and engagement, emerging as a primary theme, indicated that primary carers' occupations were affected by: limiting opportunity to develop occupations; developing new occupations; adapting occupations; and ceasing occupations. A number of influencing themes, affecting the primary carers' occupational engagement also emerged, including: lifestyle and occupational roles; wellness and health; engaging quality supports; societal and community context; and vision for the future. CONCLUSION: The results provided an initial understanding of the impact of caring on the primary carers' occupational adaptation and engagement, and a suggestion that clinicians consider using a family-centred approach as an effective and meaningful intervention.

Residential respite care is associated with family carers experiencing financial strain.

AIM: Care services for older people are provided with the expectation of supporting carers in their caregiving role. The aim of the study is to investigate the association between the utilisation of care services by older people and the caregiving experience. METHODS: Cross-sectional design, involving a cohort of family carers (n = 119) of frail older people (≥70 years) enrolled in a clinical trial of frailty treatment in metropolitan Sydney from 2008 to 2011. The caregiving experience was measured in five domains: health, daily schedule, finance, family support and self-esteem (Caregiver Reaction Assessment tool). RESULTS: Multivariate regression analysis demonstrated an association between the utilisation of residential respite care and financial strain (ß = -0.613, P = 0.049), after controlling for functional ability, co-residence and age. CONCLUSION: There is a need to consider carers' financial barriers and concerns in regards to the utilisation of respite care services.

A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice.

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990-2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub-groups of the carer population who may be more vulnerable to service non-use.

Why carers of people with dementia do not utilise out-of-home respite services.

While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out-of-home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community-dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009-January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non-use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non-use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non-use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out-of-home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.