Caregiver satisfaction with support services: influence of different types of services

Objectives: This article examines factors influencing satisfaction with support services of caregivers of frail older adults and determines what types of support services are associated with greater satisfaction, controlling for frail individual and caregiver characteristics. Methods: The study includes 291 frail older adults-caregiver dyads from Montreal in which caregivers receive support services. The Client Satisfaction Questionnaire-8 is used to measure caregiver satisfaction with these services.Results: Caregivers receiving information, advice, or emotional support, and those caring for seniors receiving integrated care are more likely to be highly satisfied.Other factors increasing satisfaction are fewer number of health problems of frail individuals, caregiver being the spouse of the frail person, as well as greater caregiver perceived health, autonomy in instrumental activities of daily living, and available social support. Discussion: The results support the importance of integrated care for frail seniors and informational services for their caregivers.     

An evaluation of a group program for spouses of frail elderly veterans.

We examined the effectiveness of a multicomponent group program for spouses of frail aging veterans that included support, education, problem solving, and stress reduction. Compared with caregivers who received no intervention, those in the group program showed significant increases in use of active behavioral coping strategies, knowledge of community resources, perceived independence in the marital relationship, and personal changes in the caregiving relationship. They also experienced significant decreases in subjective burden and the stress and severity of caregiving problems.     

Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer's disease and related dementias

PURPOSE: The purpose of this study was to describe the grief and personal growth experience of spouses and adult children of individuals with Alzheimer's disease and related dementias and the factors contributing to these experiences. DESIGN AND METHODS: We used a modification of the Marwit-Meuser-Sanders Caregiver Grief model to examine the factors that contribute to grief and personal growth. We used chi-square tests, t tests, multivariate analyses of variance, correlations, and hierarchical regression analyses in a cross-sectional analysis of 201 spouses and adult children caregivers at various stages of the disease trajectory. RESULTS: Grief increased as the severity of the disease increased. When the spouse with Alzheimer's disease lived out of the home, spouse caregivers experienced more sadness and longing, worry and isolation, and personal sacrifice burden than did adult children caregivers. Different factors influence grief and personal growth for caregivers of individuals with Alzheimer's disease. The majority of caregivers experienced personal growth, with more growth experienced by adult children. IMPLICATIONS: Health care providers should consider using the Marwit and Meuser Caregiver Grief Inventory to screen for high levels of grief in caregivers of individuals with Alzheimer's disease. Supportive services targeted for those with high levels of grief are suggested.     

Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial

Family caregiving is an important form of informal care provided to frail, community‐dwelling older adults. This article describes a health and social collaborative case management (HSC‐CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group‐based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC‐CM on caregiver burden and health‐related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 ± 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16‐week HSC‐CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC‐CM. These case managers served as liaisons for multidisciplinary efforts to provide group‐based education according to caregiver needs. Family caregivers who participated in the HSC‐CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36‐item Short‐Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well‐being (p = .049). This study provides preliminary evidence indicating that client‐centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full‐scale study is required to validate these findings.     

Spousal caregiving in late midlife versus older ages: implications of work and family obligations

OBJECTIVES: This study examined life-stage differences in the provision of care to spouses with functional impairment. METHODS: We examined 1,218 married adults aged 52 and older from the 2000 wave of the Health and Retirement Study who received impairment-related help with at least one activity of daily living. We examined the differential likelihood that spouses served as primary caregiver and the hours of care provided by spousal primary caregivers by life stage. RESULTS: We found that late middle-aged care recipients were more likely than their older counterparts to receive the majority of their care from their spouse but received fewer hours of spousal care, mostly when spouses worked full time. Competing demands of caring for children or parents did not affect the amount of care provided by a spouse. DISCUSSION: Late middle-aged adults with functional limitations are more likely than older groups to be married and cared for primarily by spouses; however, they may be particularly vulnerable to unmet need for care. As the baby boom generation ages, retirement ages increase, and federal safety nets weaken, people with health problems at older ages may soon find themselves in the same caregiving predicament as those in late middle age.     

Older Adults: The “Panini Sandwich” Generation

There are various reasons underlying why older adults find themselves in the role of a caregiver to their adult child, ranging from having a child born with a developmental disability, to having a child who suffers from a long term disability to having an adult child who has been diagnosed with a psychological disorder to raising one’s grandchildren in the absence of their adult children. The caregiving literature focuses almost entirely on care provided to the older adult, rather than by the older adult. Unlike the breadth of literature on these adult children or spouse caregivers, there is a dearth of literature about this cohort and the impact that care provision has on their mental health and well-being. This may be largely due to the lack of a framework for identifying and focusing on the needs of this cohort of caregivers. The only framework to date has focused on the bi-directionality of care when the adult child is at the center of care provision. As older adult caregivers age, they are pressed between their own physical and emotional aging needs and providing care to their adult children. The conceptualization of caregivers in this cohort as the Panini Sandwich Generation provides the needed lens by which mental health professionals can begin to explore and address the emotional and psychological needs and experiences of older adult caregivers.     

The effectiveness and cost-effectiveness of respite for caregivers of frail older people

The proportion of frail elderly people in the industrialized world is increasing. Respite care is a potentially important way of maintaining the quality of life for these people and their caregivers. The objective of this systematic review was to determine the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their caregivers. To identify relevant studies, 37 databases were searched, and reference checking and citation searches were undertaken. Well-controlled effectiveness studies were eligible for inclusion, with uncontrolled studies admissible only in the absence of higher-quality evidence. Studies assessed the effect of community-based respite on caregivers of frail elderly people relative to usual care or to another support intervention. Eligible economic evaluations also addressed costs. Where appropriate, data were synthesized using standard meta-analytic techniques. Ten randomized, controlled trials, seven quasi-experimental studies and five uncontrolled studies were included in the review. For all types of respite, the effects upon caregivers were generally small, with better-controlled studies finding modest benefits only for certain subgroups, although many studies reported high levels of caregiver satisfaction. No reliable evidence was found that respite care delays entry to residential care or adversely affects frail older people. The economic evaluations all assessed day care, which tended to be associated with similar or higher costs than usual care. Given the increasing numbers of frail elderly people and the lack of up-to-date, good-quality evidence for all types of respite care, better-quality evidence is urgently needed to inform current policy and practice.     

A randomized control trial of activity scheduling for caring for older adults with dementia and its impact on their spouse care-givers

IntroductionParticipating in meaningful activities is important for any individual’s wellbeing. Activity scheduling enables older adults with dementia and their spouse caregivers to structure their activities in accordance with the things they value.MethodsIn examining the effectiveness of activity scheduling, this report details the results of a 12-week single-blinded randomized control trial using a parallel group experimental design.ResultsFrom August 2018 to August 2019, 100 community-dwelling older adults with mild to moderate dementia and their spouses completed this study. The experimental group (n = 50) practicing activity scheduling showed improvements than in control group (n = 50), with respect to alleviating the impact of the caregiving role, reducing the behavioural and psychological symptoms of dementia, decreasing the caring demand and generally improving the quality of life, with Cohen’s d = .61, .45, .50 and 43 respectively. Moreover, there were significant differences between the groups indicated that over time, the experimental group showed an improvement with regard to alleviating the role of caring, with Cohen’s d = .64, and alleviating disruptive and depressive behavior, with an effect size of .45 and .50 respectively. The number of caring hours needed dropped from 6.98 to 5.98 h in the experimental group.Discussion & conclusionThere were more activities that older adults with dementia and their spouse caregivers would like to do, and could participate in, than we had expected. Activity scheduling can facilitate their participation. This is a very important topic as non-pharmacological interventions are needed for this even-growing segment of the population.     

Caregiver burden and nursing home admission of frail elderly persons.

The National Long-Term Care Survey, 1982-1984, and the Informal Caregivers Survey were used to test the importance of caregiver burden for risk of admission to a nursing home. This study was based on a subsample of 940 older persons with sole spouse or adult child caregivers in 1982. Using logistic regression, nursing home entrants (127) were compared to 624 continuous community residents. Characteristics of the older person included age, race (White), and number of instrumental activities of daily living limitations. Predictors related to the caregiving context included caregiver burden and use of formal services.     

Can Counseling and Support Reduce Burden and Depressive Symptoms in Caregivers of People with Alzheimer's Disease During the Transition to Institutionalization? Results from the New York University Caregiver Intervention Study

OBJECTIVES: To determine whether counseling and support reduce the burden and depressive symptoms of spouse caregivers of patients with Alzheimer's disease (AD) during the transition to institutionalization.
DESIGN: A randomized, controlled trial of an enhanced counseling and support program for spouse caregivers of persons with AD. Structured interviews were conducted with spouse caregivers at baseline, every 4 months during Year 1, and every 6 months thereafter for up to 16 years.
SETTING: Outpatient research clinic in the New York City metropolitan area.
PARTICIPANTS: Referred volunteer sample of 406 spouse caregivers of community-dwelling patients with AD enrolled over a 9.5-year period.
INTERVENTION: Enhanced counseling and support consisting of six sessions of individual and family counseling, support group participation, and continuous availability of ad hoc telephone counseling.
MEASUREMENTS: Outcome measures included burden (modified Zarit Burden Interview) and depressive symptoms (Geriatric Depression Scale).
RESULTS: Burden and depressive symptoms were significantly lower for caregivers in the treatment group than for controls receiving usual care at the time of and after institutionalization. Nursing home admission itself significantly reduced burden and depressive symptoms in the intervention and control groups.
CONCLUSION: Institutionalization alone can reduce caregiver burden and depressive symptoms, but enhanced counseling provides additional long-term benefits. The results offer some of the first clinical evidence of the benefits of enhanced counseling during the transition to institutionalization for caregivers of people with AD.     

The Composition and Structure of Depressive Symptomatology among Young and Older Caregivers of Persons with Dementia

Informal caregivers of persons with dementia (PWD) experience higher rates of clinical depression relative to general populations of older adults. Because caregivers range considerably in age (e.g., older spouses as compared to adult children or grandchildren), the need exists to evaluate the psychometric properties of depression screening measures to ascertain if cohort differences exist. The current study was conducted to determine whether responses to the Center for Epidemiological Studies–Depression (CES-D) Scale are equivalent between older (range 66 to 93 years; n?=?542) and younger PWD caregivers (range 21 to 65; n?=?884). Only responses to the interpersonal affect factor differ between the two. We contend that this pattern of consistency is due to similarity of role demands which may cause depressive symptoms to present more uniformly among PWD caregivers in contrast to heterogeneous groups of young and older adults. Overall, our findings support the higher-order factor structure of CES-D responses within a population at elevated risk for depression.     

Investigating patterns of service use by families providing care for dependent elders

The behavioral model developed by Andersen in 1968 was used to investigate patterns of support service use by families caring for dependent elders. It was hypothesized that differences in background or predisposing factors that serve to define caregivers (e.g., spouse vs. adult-child) would interact with need factors to influence the use of "discretionary" support services (e.g., adult day care), but not influence the use of "nondiscretionary" services (e.g., hospitalization). Information was obtained on the use of eight different support services from a sample of 503 caregiving dyads. Caregivers were either spouses or adult children of the dependent elder. The results supported the hypotheses derived from the behavioral model and indicate that, among caregiving families, it is important to consider not only the type of service, but who is assessing the need for that service.     

A two-factor model of caregiving appraisal and psychological well-being

Groups of spouse (N = 285) and adult child (N = 244) caregivers of elderly parents suffering from Alzheimer's disease were interviewed regarding their caregiving behaviors, evaluations of caregiving, and general psychological well-being. A model of caregiving dynamics where the objective stressor, caregiver resources, and subjective appraisal of caregiving (operationalized as caregiving satisfaction and burden) were studied as they affected both positive affect and depression was tested. For spouses, caregiving satisfaction was not related to aspects of the stressor, but was a significant determinant of positive affect. Among adult children, high levels of caregiving behavior resulted in both greater caregiving satisfaction and burden. Burden, in turn, was related to depression in both groups but, among adult child caregivers, positive affect was not affected by caregiving satisfaction. Limited support was found for the hypothesis that the positive and negative aspects of caregiving contributed to analogous aspects of generalized psychological well-being but not to the opposite-valence outcomes.     

Family Care as Collaboration: Effectiveness of a Multicomponent Support Program for Elderly Couples with Dementia. Randomized Controlled Intervention Study

OBJECTIVES: To determine whether community care of people with dementia can be prolonged with a 2‐year multicomponent intervention program and to analyze effects of the intervention on total usage and expenses of social and healthcare services. DESIGN: Randomized controlled trial. SETTING: Community‐dwelling couples with one spouse caring for the other spouse with dementia. PARTICIPANTS: Couples with dementia (N=125) were allocated at random to the intervention (n=63) or control group (n=62). INTERVENTION: Intervention couples were provided with a multicomponent intervention program with a family care coordinator, a geriatrician, support groups for caregivers, and individualized services. MEASUREMENTS: Time from enrollment to institutionalization of spouses with dementia and use of services and service expenditure of couples. RESULTS: At 1.6 years, a larger proportion in the control group than in the intervention group was in long‐term institutional care (25.8% vs 11.1%, P=.03). At 2 years, the difference was no longer statistically significant. The 2‐year adjusted hazard ratio for the intervention group was 0.53 (95% confidence interval (CI)=0.23–1.19, P=.12). Intervention led to reduction in use of community services and expenditures. The difference for the benefit of intervention group was ?7,985 Euro (95% CI=?16,081 to ?1,499, P=.03). When the intervention costs were included, the differences between the groups were not significant. CONCLUSION: Although the intervention did not result in a significant difference in the need for institutional care after 2 years, individualizing services in collaboration with families may lead to reduction in use of and expenditures on municipal services.     

How effective are interventions with caregivers? An updated meta-analysis

PURPOSE: The purpose of this study was to determine the effectiveness of interventions for family caregivers of older adults. DESIGN AND METHODS: Meta-analysis was used to synthesize the effects of 78 caregiver intervention studies for six outcome variables and six types of interventions. RESULTS: The combined interventions produced a significant improvement of 0.14 to 0.41 standard deviation units, on average, for caregiver burden, depression, subjective well-being, perceived caregiver satisfaction, ability/knowledge, and care receiver symptoms. Intervention effects were larger for increasing caregivers' ability/knowledge than for caregiver burden and depression. Psychoeducational and psychotherapeutic interventions showed the most consistent short-term effects on all outcome measures. Intervention effects for dementia caregivers were smaller than those for other groups. The number of sessions, the setting, care receiver age, caregiver age, gender, type of caregiver-care receiver relationship (spouse vs adult child), initial burden, and study characteristics moderated the observed effects. IMPLICATIONS: Caregiver interventions are effective, but some interventions have primarily domain-specific effects rather than global effects. The differences between intervention types and moderators suggest ways of optimizing interventions.     

Does expressive writing reduce stress and improve health for family caregivers of older adults?

PURPOSE: We examined whether written emotional disclosure reduces stress and improves health outcomes for family caregivers of physically frail and cognitively impaired older adults, as it has been shown to do for certain student and clinical populations. DESIGN AND METHODS: Primary caregivers of older adults attending a day program were randomly assigned to expressive-writing (n = 14), time-management (n = 13), or history-writing (n = 13) conditions. Participants wrote for 20 minutes on four occasions over a 2-week period, and they completed self-report measures of caregiver burden and health prior to the intervention, immediately afterward, and at 1-month follow-up. RESULTS: Contrary to expectations, expressive-writing and history-writing participants performed similarly across outcomes. Only caregiver participants in the time-management condition experienced significant mental and physical health improvements after writing. IMPLICATIONS: The results of this study add to a growing body of research demonstrating equivocal effects of expressive writing with clinical samples, and they suggest the potential benefit of written time management for stressed caregivers.     

Actor and partner effects of self-rated health on life satisfaction among family caregiver couples

ObjectivesThis study examined the dyadic effects of self-rated health on the life satisfaction of family caregivers. The effects of the use of long-term care services were also explored to investigate whether support through care services is associated with the life satisfaction of family caregivers.MethodsThe data were drawn from the sixth wave (2016) of the Korean Longitudinal Study of Aging. Caregivers who used long-term care services for older family members, and spouses of the caregivers, were identified. A total of 81 married caregiver couples were analyzed using the actor-partner interdependence model.ResultsThe study showed that better self-rated health of caregivers was associated with higher levels of life satisfaction (B = 8.87, p < 0.001). Better self-rated health of the caregivers was also associated with higher life satisfaction of their spouses (B = 6.01, p < 0.05). In addition, the results suggested that the use of long-term care services for patients was associated with the life satisfaction of both caregivers (B = 14.57, p < 0.01) and their spouses (B = 12.51, p < 0.05).DiscussionOur findings suggested mutual influences among family caregivers on their life satisfaction. In addition, long-term care services for patients may improve the life satisfaction of other family members. More support through long-term care services for people with care needs is required to increase the life satisfaction of family caregivers. The diverse relationships among family caregivers should be taken into consideration when developing policies and interventions.     

Factors affecting burnout when caring for older adults needing long-term care services in Korea

The purpose of this study was to address factors related to caregiver burnout as a result of caring for an older adult with a chronic disease. Characteristics of care recipients and caregivers as well as social support were included to identify the relationships with caregiver burnout. The analysis was based on a sample of 334 older adults and their caregivers in Korea. The logistic regression results indicated that the period of being in need of another's help among care-recipients, co-residence, caregivers' health condition, previous care experience, and caregivers' free time were correlated with the caregivers' future caregiving. Interestingly, the more experience caregivers had in caring for older adults, the more willing they were to provide care in the future. Thus, the discussion focuses on services for those who are new to providing care for older adults because they tend to have less coping skills.     

Perceived Burdensomeness in Older Adults and Perceptions of Burden on Spouses and Children

Older adults are at high risk for suicide, and perceived burdensomeness is an important suicide risk factor in this population. Additionally, previous research indicates that older adults feel like a burden on their spouses most often, though perceptions of burden on younger generations were associated with greater overall perceived burdensomeness. The current study sought to clarify this complex pattern of results, and found that perceptions of burden on a spouse were linked to the most severe form of perceived burdensomeness—belief that others would be better off if one were gone—though perceptions of burden on a child were not significantly associated with this most severe form of perceived burdensomeness in the current sample. These results indicate that older adults’ perceptions of burdensomeness on a spouse may be especially harmful. Clinical implications, including the need to assess not only whether older adults perceive themselves to be a burden on others, but also who is perceived to be burdened, and the importance of targeting perceived burdensomeness through cognitive restructuring, are discussed.