Respite Care Research Articles

The Influence of Social Roles on the Well-Being of Older Caregivers: Social Isolation as a Potential Mediator

Engagement in productive roles has been associated with better health in later life. According to identity accumulation theory, more social roles help individuals be more socially integrated, leading to enhanced psychological well-being by diminishing the risk of focusing their energy into a single role. However, less is known about the mechanisms behind the relationship between productive roles and mental health of older caregivers. The aims of this study are to examine: (1) the association between productive social roles and psychological well-being for caregivers and non-caregivers, and (2) the mediating effect of social isolation on this relationship. The study analyzed 3,951 community-dwelling Medicare beneficiaries ages 65 or above from Rounds 1 to 3 of the National Health and Aging Trends Study (210 caregivers, 3,741 non-caregivers). Multiple-group analysis for structural equation modeling was conducted to compare caregivers to non-caregivers. For both caregivers and non-caregivers, having a volunteer role increased well-being, while paid employment was not significantly associated with well-being. Social isolation mediated neither employee nor volunteer role with well-being for both caregivers and non-caregivers. Assuming that volunteering for others without monetary compensation brings meaning in life, this finding supports the provision of services (e.g., respite care) that could supplement caregiving time, allowing caregivers to have more freedom to use the time in such community-engaging roles. Even though self-rated health was controlled, there is a chance that healthier individuals engage in productive roles. Thus, reciprocal relationships between productive roles and health should be considered in future investigations.

Study Protocol: Partners at Meals Telehealth Intervention for Caregivers of Persons With Dementia

Background: As the aging population continues to increase, it is estimated that persons with dementias (PWDs) will reach 13 million by 2050. Lack of caregiver skills related to mealtime planning and the ability to cope with dysfunctional behaviors are well-documented factors that influence nutritional outcomes for PWDs, leading to social isolation, and negatively impacting their home stay. The aim of this study protocol is to test the effectiveness of a train-the-trainer program in which non-paid volunteers in respite care centers deliver a telehealth mealtime intervention for caregivers of PWDs, Partners at Meals. The program is based on the C3P Model of Changing the Place, People and Person. Methods: A cluster-randomized controlled trial with parallel mixed methods evaluation processes is being conducted. Caregivers and PWD dyads, receiving respite services are randomized to receive Partners at Meals or enhanced-usual-care for six months. Within the intervention group, dyads are partnered with a C3P-trained volunteer who works with caregivers to devise monthly mealtime plans. Under enhanced-usual-care, dyads receive standardized educational materials modified from The Savvy Caregiver Program for Alzheimer’s caregiving. Primary outcomes include weight, calorie, protein and fluid intake of the PWDs and quality of life of the caregiver. Respite center administrators, program directors, volunteers and caregivers are evaluated for intervention fidelity, acceptability and sustainability. Implications: In this trial, we lay the groundwork to examine effectiveness and sustainability of a train-the-trainer telehealth program that could be widely disseminated for managing mealtimes in-the-home, while promoting quality of life of both the caregiver and PWDs.

Assessing the Impact of Older Americans Act–Funded Services on Caregiver Stress

Funding for OAA programs that support caregivers and care recipients has steeply declined since 2010. This is potentially problematic given these programs provide services that may reduce caregiver stress. To better understand what and for whom caregiving services reduces stress, we used data from the National Survey of Older Americans Act Participants (NSOAAP) to estimate logistic regression models predicting caregiver stress. These models include the following measures: services provided to the care recipient, services received by the caregiver, and caregiver satisfaction with services received; caregiver health, age, race, and gender; and care recipient health, age, gender, relationship to the caregiver, and coresidence with the caregiver. The results indicate that caregivers who were satisfied with services were less likely to be stressed compared to those who are not satisfied with services. Those who received respite care and counseling services were less likely to be stressed than those who attended classes and training. Consistent with the literature, caregivers who reported better health or cared for someone in better health were less likely to be stressed. Caregivers were also more likely to be stressed if they provided help with medical care compared to ADLs or if they lived with the care recipient. Overall, the results underscore the importance of continued, and possibly expanded, OAA funding for caregiver support services, especially those that provide respite and counseling to individuals who are providing care to frail and co-residential older adults.

Unsung Heroes: Caregiver Experiences During COVID 19

Objectives: COVID-19 has spared no age group but is proving to be most dangerous to the elderly and individuals with more vulnerable immune systems. COVID-19 represents a unique challenge to caregivers above and beyond the ordinary stresses they experience and many informal caregivers currently providing care have not planned for the pandemic and its effect on access to health care services, respite resources, and support groups, etc. The purpose of our study is to assess COVID-19’s impact on the mental health and wellness of informal caregivers. Method: An interdisciplinary collaborative of caregiving scholars created a 47-item web-based anonymous survey with quantitative and qualitative questions to assess caregiving experiences during COVID-19. Participants were recruited through convenience sampling using social media and flyers distributed by local/national organizations. Results: Participants (N=96) reported an average age of 50 years old and were predominately adult children caring for parents (45%) with neurological (40%) and chronic medical conditions (25%). Only 4% cared for individuals diagnosed with COVID 19. Nearly all reported significant changes in caregiving that included increased time spent caregiving for care recipients and other family members, greater stress and worry, fewer breaks for self-care, increased isolation, and decreased access to social/emotional supports and respite services. Discussion: Unplanned changes to caregiving during COVID 19 have created an acute need for research, clinical care guidelines, and policy promoting virtual respite care, social support for caregivers, and more readily available community based resources that promote caregivers’ physical and emotional wellbeing without requiring them to leave their homes.

A Qualitative Study on Making Rural Communities More Dementia-Friendly

Recent studies on attitudes toward dementia in the United States, such as the World Alzheimer Report 2019, have found that fear and stigma are still widespread among the general public. This may be particularly true in rural communities. In the current study, community-dwelling adults in small Midwestern communities responded to the open-ended survey question, “What do you think could be done to make your community more welcoming for people with Alzheimer’s disease and other forms of dementia?” Participants (N=242) ranged in age from 18-88 (M=40, SD=21). The sample was 68% female, and 61% lived in communities of 50,000-150,000 people, while 39% lived in smaller towns. Most participants (61.2%) did not personally know someone with dementia. Data were collected via paper and telephone surveys. Responses to the open-ended question were analyzed using open, axial, and selective coding. The following themes emerged: greater exposure to individuals with dementia; educational workshops about dementia; more intergenerational programs; greater accessibility of respite care and other services; more fundraising efforts; and community leaders talking about dementia. Responses included, “Have more intergenerational programs that bring together Alzheimer’s patients and children in a positive environment.” “When I was in school, we visited an Alzheimer’s unit. That was a great experience.” “I know what it is, but I don’t know anything else. I wish I was more informed. I don’t know how to help.” These findings indicate that residents of rural communities are motivated to help individuals with dementia, but need more guidance, education, and personal connections/exposure.

Family Caregivers of Veterans Experience High Burden, Mental Health Distress, and Financial Strain

We describe the caregiving experiences and needs of family caregivers of older Veterans enrolled in the U.S. Department of Veterans Affairs (VA). We conducted telephone surveys with 1,509 caregivers to assess caregiver health and well-being. Caregivers were primarily female, <50 years old, white, and the Veterans’ spouse. Veterans had substantial functional limitations and required care for multiple conditions, commonly, mental illness, dementia, and heart disease. On average, caregivers provided care for 9.6 hours per day and 6.7 days per week. Burden and depressive symptoms were above clinical thresholds with average scores of 21.8 (Zarit burden) and 11.5 (CES-D 10). Levels of perceived loneliness and financial strain were high. As this population needs emotional support, respite care services, social engagement, and training to care for aging Veterans, the expansion of enhanced caregiver services and supports to this population (expected in 2020) through the VA Mission Act of 2018 will be beneficial.

The Impact of Musculoskeletal Conditions on Assessed Levels of Care Required by Older Australians

IntroductionMusculoskeletal problems, including conditions such as back pain, neck pain, rheumatoid arthritis, gout and osteoarthritis are common in the population and significant contributors to global disease burden. Age is one of the most common risk factors for musculoskeletal conditions and over 40% of older people accessing residential aged care have a musculoskeletal condition. It is not known whether individuals living in the community with musculoskeletal conditions have similar needs to those in permanent care and this is important to know in order to provide appropriate care.&#x0D; Objectives and ApproachThe objective of this study was to profile individuals with musculoskeletal conditions in different aged care service settings (i.e. permanent care, community care only, transition/ respite care, or no services). Specifically, we examined the concurrent chronic conditions, health risk factors and functional limitations of individuals by service setting. A cross-sectional evaluation of individuals in the National Historical Cohort of the Registry of Senior Australians (ROSA) between 2004 and 2014 was conducted. Multivariable logistic regression models estimated the factors associated with being in different aged care settings. Odds ratios (OR) and 95% confidence intervals (CI) were determined.&#x0D; Results401,026 (42.5%) individuals with musculoskeletal conditions were assessed for aged care service eligibility during the study period. Of these 197,181 (49.2%) accessed permanent care, 37,003 (9.2%) accessed home care, 54,826 (13.7%) transition/respite, and 112,016 (27.9%) - no care. Individuals accessing community care compared to residential care were more likely to be female, have pain and have difficulty maintaining their home, as were individuals accessing no services compared to residential care.&#x0D; Conclusion / ImplicationsCompared to those in residential care, individuals with musculoskeletal conditions in the community with or without assistance had few differences related to other chronic conditions and functional limitations. But the reasons why some had support, while others did not, are unclear.

Gaining Longitudinal Accounts of Carers' Experiences Using IPA and Photograph Elicitation.

Fluctuations in positive and negative caregiving experiences remain only partially explained as the significant variability over time of potential predictive factors themselves is understudied. The current study aims to gain considerable insight into caregiving experiences and perceptions over time by using photovoice methodology to support semi-structured interviews. A case study, longitudinal design is taken with three female caregivers who provide detailed insight into their caregivers' experiences over a 12 month period. The interview transcripts were analyzed using IPA- Interpretative Phenomenological Analysis. This innovative combination of methods resulted in the emergence of three related themes which included consuming the role, feeling consumed by the role, and letting go of the role. The idiographic approach taken allowed both within case differences to be examined over time, and also between carer differences to be highlighted. Implications of illness type and its characteristics, and of attachment and relationship quality with the care recipient were seen in terms of how and when the caregivers moved between the themes identified. The use of others' support or respite care is examined vis-a vis caregiver's own beliefs, emotions, relationship attachment and motivations to care. Caregivers self-efficacy beliefs also shifted over time and were influential in caregiver experience as the care recipient condition or needs changed. No previous studies have found that negative caregiving consequences are, in part, under volitional control and yet our data on the underlying reasons for consuming caregiving or allowing themselves to consume, would suggest this may in part be true. This is important because it suggests that interventions to support caregivers should address relational and motivational factors more fully.

Qualitative analysis on needs of family caregivers for people with dementia

AbstractBackgroundDementia is a public health challenge worldwide. Caring for a person with dementia affects different caregivers in different ways. The objective of this study was to explore the role caregivers (FCGs) for people with dementia play, along with their needs and the stress they experience, as a means of understanding their overall experience of caring. Second, to identify coping strategies employed by FCGs and to explore positive aspects of the caring relationship in relation to their quality of life, information needs, day care and respite care, and emotional support. Third, to develop a medical‐social collaboration model from socio‐ecological perspectives to provide support services to older adults with mild to moderate dementia and their FCGs at the community level.MethodDifferent support groups for older adults with dementia include hospital caregivers’ support groups, district‐based dementia care networks, and community non‐government organizations participating in this project. Through four focus groups for FCGs, qualitative data were collected.ResultFrom December 2018 to March 2019, 80 FCGs were recruited through purposeful sampling. They shared similar demographic and socio‐demographic backgrounds. Addressing the first two objectives involves exploring the role, needs, and stress of FCGs and identifying their coping strategies. Five major themes relating to FCGs’ experiences were identified through the focus groups on caregiving for older adults with dementia: a) seeking understanding, b) stabilization, c) preparation, d) implementation, and e) adaptation. In addressing the third objective, with reference to Bronfenbrenner’s Ecological Systems theory (Bronfenbrenner, 1977, Bronfenbrenner and Ceci, 1994), a medical‐social model was developed and to provide support services to FCGs at the community level. The facilitators and barriers identified by thematic analysis.ConclusionMany of the barriers and facilitators identified are echoed by findings from previous studies. Individuals’ needs must be integrated into future service planning and decision‐making processes.

Public health response to COVID‐19 for persons living with dementia in communities, acute care, and long‐term care settings

BackgroundEmergencies and disasters can exacerbate or complicate unique vulnerabilities associated with dementia. The Healthy Brain Initiative’s State and Local Public Health Partnerships to Address Dementia: The 2018‐2023 Road Map calls for addressing the special needs of people with dementia and caregivers in emergency preparedness/response.MethodDuring the coronavirus (COVID‐19) pandemic, public health professionals play a critical role in protecting people living with dementia, their caregivers and families. The Alzheimer's Association and the Centers for Disease Control and Prevention (CDC) educated public health professionals and partners about the unique challenges associated with dementia during the pandemic and steps to tailor the emergency response. Homes in the community, acute care and long‐term care are three settings that require unique public health responses.ResultChallenges encountered vary by setting. In homes and the community, people living with dementia and their caregivers have been affected by the suspension of adult day services, social events, congregate meals, respite care, peer support groups, community education, physical activity classes and more, including virtual delivery of non‐urgent primary care, case management and behavioral health. Many emergency departments and hospitals adopted no‐visitor policies to reduce transmission of COVID‐19; however, caregivers for people living with dementia provide essential medical and emotional support that aids diagnosis and treatment. Long‐term care (LTC) facilities are especially prone to COVID‐19 outbreaks due to the concentration of vulnerable older adults, many with some form of cognitive impairment. Provision of person‐centered dementia care is hampered by no‐visitor policies without caregiver allowances and limited training of professionals working in LTC facilities during the crisis.ConclusionTaking immediate public health actions will not only help minimize the negative impacts of COVID‐19 on people living with dementia and their caregivers, but also support effective, efficient delivery of person‐centered care. Through this session, public health professionals will quickly learn about challenges posed by dementia in these settings, immediate steps to better protect health and safety for this population, and resources their departments can use. Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the CDC.

Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees

BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality’s guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

Program evaluation of a recuperative care pilot project.

ObjectiveA program evaluation to demonstrate the feasibility of a recuperative care pilot project to address the needs of unhoused individuals.DesignThe study is a descriptive postprogram evaluation.SampleA total of 73 referrals were made to the project with 23 admissions.MeasureData regarding number and type of referrals for admission, cost of respite care per guest and per day, hospital costs avoided, referrals to community services, and discharge destination were collected.InterventionA case management care model was used. The project staff included a public health nurse and an outreach worker.ResultsOne local hospital accounted for 65% of all admissions. Admitting diagnoses were abscess/wound care (44%) followed by postsurgery recovery (17%). Housing resources (65%) was a common referral with 22% of guests discharged to stable housing. Actual length of stay exceeded the planned length by an average of 24 days. Total cost per guest per day was $157.45 which is an estimated savings to referring acute care facilities of between $18,000 and $48,000 per day.ConclusionsThe project demonstrated an ability to provide unhoused individuals a place to recuperate following hospitalization in a cost‐effective manner. Challenges and recommendations of the program going forward were identified.

The Constants of LTC: What’s Not Changing in the Next Decade

The Constants of LTC: What’s Not Changing in the Next Decade

Family experiences with palliative care for children at home: a systematic literature review

BackgroundThe main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child’s home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home.MethodsWe conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0–18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies.ResultsThe review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children’s mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted.ConclusionsFamilies receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.

Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis.

Caring for an individual with autism spectrum disorder (ASD) in ideal circumstances can be stressful, and the Coronavirus disease (COVID-19) pandemic created a high degree of disruption to life and stress to families living with an individual with ASD. We conducted an online survey of families in Michigan that revealed higher levels of stress in caregivers of younger individuals with ASD and those with greater severity of ASD symptoms. Stress around therapeutic service disruption, finances, and illness predominated and greater stress was reported for caregivers of individuals receiving greater intensity of services pre-COVID-19. Respondents voiced concerns about receiving respite care during COVID-19, and those expressing interest in respite also reported greater symptom severity in the person with ASD.Electronic supplementary materialThe online version of this article (10.1007/s10803-020-04760-5) contains supplementary material, which is available to authorized users.

Dementia Rates May Be Dropping in Some Countries

Dementia Rates May Be Dropping in Some Countries

Translation with Cross-cultural Adaptation of Cerebral Palsy Quality of Life Questionnaire for Children into Nepali and its Psychometric Properties

Background Cerebral Palsy Quality of Life questionnaire for children primary caregiver version is the widely used condition specific outcome measure which assesses the wellbeing of the child. It has been translated to many languages and shows excellent psychometric properties. Availability in Nepali would facilitate the use in clinical practice and research in Nepali population. Objective The objective of this study was translation with cross-culturally adaption of Cerebral Palsy Quality of Life questionnaire for children primary caregiver version into Nepali and assess its psychometric properties. Method Cross-cultural adaptation was performed using forward and backward translation protocol. Pretesting was done on six participants to confirm that the original concept was preserved. The Nepali version of questionnaire was administered twice for data collection. The feasibility, sensitivity, internal consistency and test-retest reliability was determined. Result Culturally adapted Nepali version showed good feasibility only the domain "Access to service" had a highest missing score related to use of the special equipment, attending kindergarten and applying for respite care. Floor and ceiling effect were < 15% in all the domains except in few items of "Pain and impact of disability" and "Social well being and acceptance". Test retest reliability (0.82 - 0.91) and internal consistency (0.68 - 0.84) was good. There were weak association of domains with the gross motor functional classification system level. Conclusion Cross-culturally adapted Nepali Cerebral Palsy Quality of Life questionnaire for children primary caregiver was developed. It demonstrates good psychometric properties confirming to assess quality of life of children with Cerebral palsy in Nepal.

Modifying walking football for people living with dementia: lessons for best practice

Inclusive and modified sport promotes opportunities for participation usually for older people or people with disabilities, physical and or mental health issues. Walking sports, a form of modified sport, is often designed to support engagement in physical and social activity amongst people over 50 years. This qualitative study explored how walking football sessions were designed and delivered for, and experienced by people living with dementia and their family carers. We thematically analysed 18 qualitative interviews and identified three main themes (1) social impact, (2) embodied memories and (3) flexible carer respite. The findings increase our understanding of how walking sports such as football can be viewed as a psychosocial intervention and be modified to promote the inclusion and agency of people living with dementia and respite for family carers. The study offers best practice recommendations for those organising modified sports activities for older people living with dementia.

Value Them as Members of the Community: Existing Support Structures in Mosques for South Asian Muslim Families of Children with IDD Living in the United States

Congregational support plays an essential role in the lives of Muslim families of individuals with intellectual and developmental disabilities (IDD). Yet, little is known about support provided by mosques for Muslim families of children with IDD. Using semi-structured interviews, this study examined available and accessed mosque support structures by three South Asian Muslim parents of children with IDD living in the United States. Parents expressed strong emotional and social support from the mosque and positively viewed available respite care. However, they identified lack of formal support for physical accommodations, little support structures for newly immigrated parents, and strong cultural stigma. Parents also reported an absence of informal support structures for parent wellbeing and advocated a need to increase inclusive practices in the community. Although parents expressed strong religious and cultural ties to their mosque community, they voiced a lost sense of belonging and inclusion within the social and religious frameworks of the mosque. While some support structures exist in mosques, most of the support is not accessible, available, or individualized. Implications and future research are discussed.

Correlates of Formal Support Service Use among Dementia Caregivers

ABSTRACT Informal caregivers for persons with dementia frequently report needing assistance, yet formal support service use has been low. To better understand factors associated with service use, correlates of self-reported service use (e.g., support groups, family mediation, family leave, classes/trainings, and respite care) among dementia caregivers were assessed. The National Poll on Healthy Aging conducted a nationally representative web-based survey of adults aged 50–80 (N = 2,131) using Ispos’ KnowledgePanel®; 148 reported caregiving for an adult with memory loss [61.5% female; 25% nonwhite, 54.1% aged 50–64]. Multivariable logistic regression analyzes assessed caregiver and care recipient characteristics associated with service use within the prior year. Nearly 25% of caregivers used at least one service. Caregiver characteristics associated with greater likelihood of service use included not working [7.5 OR; 2.73, 20.62 CI]; income <$30,000/year [5.9 OR; 1.27, 27.17 CI]; and residing in Western US [7.5 OR; 2.73, 20.62 CI]. Ability of care recipient to be left alone safely for only three hours or less [5.1 OR; 1.66, 15.46 CI] was associated with greater likelihood of use. Support service use remains low. Findings suggest need to consider caregivers’ employment status, income, and geographical location in service design and implementation.