There is a lack of studies of the size of burden associated with informal care giving in psychosis.
To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden.
Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2.
One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems.
Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.
A current emphasis in Canadian public policy is on community care for frail seniors. Such care is viewed as attractive in part because public costs are lower than for traditional nursing home care. Adult Family Living (AFL) is seen as an exemplar of this community focus. Data from a multi-model evaluation of residential continuing care in western Canada are used to show that while AFL programs have lower public costs than nursing homes, AFL caregivers incur high levels of economic and non-economic costs. We address the question of the sustainability of this approach to community-based residential care in light of the apparent transfer of public costs to AFL caregivers.
To determine the financial and family resources burden associated with the treatment of cancer. A questionnaire was developed to determine the direct monthly "out-of-pocket costs" (OOPC), the indirect costs, and the associated perceived family burden.
A self-administered questionnaire using a quota sample from five cancer clinics in Ontario, Canada was given to 282 cancer patients (74 breast, 70 colorectal, 68 lung, and 70 prostate). Monthly OOPC were obtained for: drugs, home care, homemaking, complementary and alternative medicines, vitamins and supplements, family care, travel, parking, accommodations, devices, and others. The questionnaire asked if OOPC for treatment were a burden, and if others took time from work to provide caregiving.
The mean monthly OOPC was $213, with an additional $372 related to imputed travel costs. For those patients who responded that the burden was "significant" (16.5%), their OOPC was $452. In the case of patients responding that their burden was "unmanageable" (3.9%), their OOPC was $544. The survey showed that 35.6% of patients required others to take time from work and this was higher in the under-65 category. The mean number of days lost from work in the previous 30 days for these caregivers was 7 days.
These results suggest the financial burden is problematic for 20% of this sample. The caregivers' lost time from work influence this burden, and for 36% of this sample, it amounts to one third of their working days in any given month. Policies and programs to address these gaps are needed.
Psychosocial intervention has shown positive effects on the caregivers' burden and satisfaction. The aims of this study were to describe the cost and cost-effectiveness of such an intervention.
We analyzed resource use and costs of formal care for 308 persons with dementia and their caregivers' health-related quality of life (HRQoL).
The costs of home help services were lower in the subgroup of spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. While the person with dementia lived at home, caregivers in the intervention group reported a higher HRQoL (p
Examining the need for an eldercare policy is relevant and timely because the population is aging, a focus of care has shifted from institutional to community based, and informal caregivers, primarily women, are increasingly pressured to be responsible for eldercare. The purpose of the study is to examine the differences in the experiences of low-income and those who are not low-income informal caregivers. Three hundred questionnaires were mailed to past and present home care clients and 58 questionnaires were returned (19% response rate). This research revealed that low-income caregivers have increased needs for support and education from those who can afford to pay for their support services. Low-income caregivers experience significantly greater caregiver distress than do caregivers who are not low income. The unique needs of low-income caregivers must be considered in the formation of Canadian eldercare policy as increased health care privatization promotes the growing inequality in health care provision.
The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial.
The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver.
We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home.
ClinicalTrials.gov: NCT04043364. Registered on 15 March 2019.
Alzheimer's disease (AD) is a chronic and progressive neurodegenerative disease characterized by a progressive deterioration in cognitive functions. AD will have a major impact on public health in the coming decades. The objective of this study was to evaluate the potential cost-effectiveness of a cognitive-behavioral family intervention (CBFI) program in patients with mild Alzheimer's disease in Finland. A second-order Monte Carlo technique was used to simulate the effectiveness of the intervention in AD patients and their informal caregivers over the course of 5 years. A Bayesian approach was applied to answer the question: how likely is it that the CBFI program is cost-effective? Based on existing information, the incremental net health benefit of the CBFI program is positive with over 0.9 probability, which indicates that the CBFI program has the highest probability of being optimal by providing greater net benefits than current practice. Furthermore, changes in the health-related quality of life of the caregivers were insensitive to AD patients' disease stage and settings of care. From the methodological point of view, the acceptability curve with a Bayesian approach provides a flexible way to characterize uncertainty surrounding cost-effectiveness parameters.
Individualized problem-solving counseling for caregivers of cognitively impaired relatives is thought to help caregivers cope with the stress and burden of caregiving. Few studies have shown the effectiveness of counseling for these caregivers.
To determine the effectiveness of individualized problem-solving counseling by nurses for caregivers and the expenditures of health care utilization.
Caregivers (n = 77) of the cognitively impaired living at home were randomized to receive nurse counseling or not. Psychosocial adjustment to their relative's illness, psychological distress, burden, coping skills, and expenditures were measured after 6 months and 1 year.
Although on average, all caregivers receiving nurse counseling indicated no improvement in psychosocial adjustment to their relative's illness, psychological distress, or caregiver burden, they found counseling very helpful and it was effective for a subgroup of caregivers. Those with poor logical analysis coping skills at baseline had decreased psychological distress (F(1,53) = 9.7, p = .003) and improved psychosocial adjustment (F(1,53) = 4.7, p = .035) after 1 year. Caregivers in control and counseling groups whose relatives entered a nursing home improved their psychosocial adjustment 23% on average whereas those continuing to live in the community decreased by 8%. Almost half as many relatives entered nursing homes in the counseling group (n = 9 vs. n = 5) but these compared to control group relatives had greater annualized per person expenditures for health and social services (Cdn$23,437 vs. Cdn$15,151).
Caregivers found nurse counseling most helpful. Those indicating infrequent use of logical analysis coping skills showed benefits.
BACKGROUND: Family caregivers of relatives with dementia report higher level of psychological distress than other caregivers and report their self-related health as poorer than that of comparison groups. AIMS AND OBJECTIVES: The purpose of the study was to examine characteristics of family caregivers and to assess whether income, subjective health, age and relationship were associated with the burden of care they experienced. SETTING: Group living units in southern Sweden. PARTICIPANTS: Fifty caregivers who served as informal caregivers of relatives with dementia in group living care. DESIGN: Interviews regarding economic and social conditions and well-evaluated scales for health and caregiver burden (CB) were used. RESULTS: The majority of the family caregivers were adult children, and twice as many were female than were males. The investigation showed that total burden, strain and disappointment, adjusted for health and age, were related to income. Disappointment showed a relation to subjective health. The adult children showed a significantly higher degree of total burden, irrespective of age, compared to other family caregivers. Low income was associated with a higher degree of burden among adult children. However, elderly participants experienced less of burden than younger ones. CONCLUSION: Our findings indicate that caregivers with low health profile and low income, especially adult children, are associated with higher CB. RELEVANCE TO CLINICAL PRACTICE: People with coexisting risk factors (low income, low perceived health) are the ones who may benefit most from health-oriented interventions.