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Chapter 4 delivers a comparative perspective. The United States served as a model for many other countries to adopt earnings-based family tax credits, and this chapter seeks to borrow ideas back by examining how New Zealand and Canada administer similar credits. The chapter provides an overview of New Zealand’s Working for Families Tax Credits and Canada’s Working Income Tax Benefit and Canada Child Benefit. It describes the mechanics of each, explores critiques raised by domestic scholars, and draws takeaways for the United States. While acknowledging that there are cultural differences and conceding that no design is perfect, this chapter sets the stage for a reimagination of how the United States delivers its antipoverty benefits to working families.
Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view.
This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support.
The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90).
Significance of results
The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.
Studies of psychological interventions for the prevention of depression have found significant effects in the short-term, but the long-term efficacy has yet to be determined. This study evaluated the 8-year effect of a randomized controlled trial for indicated prevention of depression in female caregivers.
A total of 173 non-professional female caregivers with subclinical depressive symptoms not meeting criteria for a major depressive episode (MDE) were randomized to either a brief problem-solving intervention (n = 89) or usual-care control group (n = 84). Blinded evaluators conducted an assessment at the 8-year follow-up. The primary outcome was Depression Status, defined by diagnoses of MDE since the 1-year follow-up using the Structured Clinical Interview for the Disorders of the DSM-5. The secondary outcome was current Depressive Symptom Severity. Regression analyses were conducted to evaluate the effect of the intervention on the outcomes.
There were no significant differences in the Depression Status between the problem-solving (30.3%) and control groups (26.2%) (adjusted OR 1.25, 95% CI −0.58 to 2.69). Depressive Symptom Severity, however, was significantly lower in the problem-solving group compared to the control group at this follow-up, amounting to a small effect size of Cohen's d = 0.39 (adjusted B = −3.32, p = 0.018).
This is the first study to assess such a long-term follow-up of intervention of indicated prevention of depression. Results seem to indicate that the protective effect of the intervention became smaller over time during follow-up. Future research should replicate these results.
Awareness can be defined as a response to, or evaluation of, an aspect of one’s situation or internal state. Awareness becomes impaired as dementia progresses; however, the exact nature and degree of impairment in advanced dementia remains unclear. The extent to which caregivers understand or make assumptions about the level and nature of awareness in advanced dementia may have a significant impact on their ability to appropriately respond to and care for the person with dementia. This systematic review examines the literature regarding professional caregiver perceptions about awareness in advanced dementia.
A systematic search of online literature databases (PsychInfo, Medline, Embase, CINAHL) was conducted up to January 15, 2018, using a range of search terms related to dementia, awareness and caregiver attitudes.
The systematic review included a total of 10 qualitative studies that were heterogeneous in aspects of design, including analyses. Narrative synthesis was used to integrate results. Four major themes were identified from review of the papers: how professional caregivers defined awareness; professional caregiver beliefs about what influences the expression of awareness; professional caregiver beliefs around how to assess awareness in advanced dementia; and the perceived impact of episodes of increased awareness on the person with dementia and caregiver. Sub-themes were identified within each of these areas.
This review highlights the importance of professional caregiver perceptions of awareness in advanced dementia. Supporting professional caregivers to assess and understand the nature of awareness in advanced dementia would improve their approach to care and outcomes for people with dementia.
The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated.
The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers.
A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement.
At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term.
For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.
Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer; however, TD has not been recognized in the family caregivers of cancer patients to date.
From a series of cancer patient caregivers, we reported an aged family caregiver who developed TD while caring for the cancer patient.
The caregiver was a 90-year-old male. He had been accompanying his wife, who was diagnosed with colon cancer 4 years previously, on hospital visits as the primary caregiver, but because of psychological issues, he was recommended to visit the psycho-oncology department's “caregiver's clinic” for a consultation. Detailed examination revealed that his appetite had been only about 50% of usual from about one year before, and he had lost 12 kg in weight in one year. The diagnosis of TD was supported by his abnormally low serum thiamine level.
Significance of the results
This report demonstrates that there is a possibility that care providers could develop TD from the burdens associated with caregiving. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of care providers to prevent complications resulting from TD.
Misplacing objects is often reported as a clinically important symptom in dementia. Here we explored misplacing objects in relation to dementia type and stage in an online sample of individuals with dementia and their caregivers.
Participants were recruited from www.dementiaguide.com, a web-based tracker for common dementia symptoms. Users provided information about symptoms that they selected as important for monitoring. We analysed cross-sectional data from respondents who tracked at least three symptoms, which allowed for staging dementia severity.
Of 2,775 users with three-plus symptoms, 787 (28%) identified misplacing objects for symptom tracking. Misplacing objects was monitored by users across all stages of dementia, but was more prevalent in mild and severe dementia. Three common clinical subtypes of misplacing were investigated: lost & found (forgetting the location of items), hidden away (hiding items so others would not find them), and odd places (putting items in usual spots). Of the 787, 96% targeted lost & found, the most frequent type. Odd places (targeted in 56%) significantly increased with dementia severity (p < 0.001). Misplacing objects was most strongly associated with the symptoms of interaction with strangers (OR 4.60, 95% CI: 3.20-6.62), reading (3.68: 2.86-4.73), shopping (3.55: 2.73-4.61) and travel/vacationing (3.31: 2.54-4.31).
Misplacing objects was most often selected for tracking in mild and severe stages of dementia. As disease advances, misplacing more often reflects odd placement of objects rather than their simple loss. Misplacing objects may be a clinically important therapeutic target for improving patients’ quality of life and lessening caregiver burden.
Medical issues facing the aging population are of growing concern with consequences for patients and their caregivers. This study determined the indirect and out-of-pocket costs incurred by the caregivers of elderly patients in Canadian Intensive Care Units (ICUs). Primary family caregivers were surveyed capturing out-of-pocket costs, hours of work, and hours of leisure forgone in providing patient care while the patient was in the ICU. Total costs of care per month were reported across caregiver sex, age, and geographic region. Average out-of-pocket costs were $791 (2016 Canadian dollars) in the first month of ICU care. The mean total cost to family caregivers per patient was $162 per day. Male primary caregivers had higher mean out-of-pocket costs than female caregivers. Subsidization programs covering expenses such as travel, meals, accommodation, and parking are needed to support family caregivers of elderly ICU patients who are incurring considerable out-of-pocket costs.
Frontotemporal degeneration (FTD) dementia often begins before age 60 and predominantly presents as four subtypes with prominent features of language, behavior, cognition, and motor symptoms. The early onset and unique symptoms place a distinct burden on caregivers of individuals with FTD versus other dementia types, such as Alzheimer’s disease. This is the first known study to examine the domains of the FTD caregiver burden and the caregiver and patient characteristics associated with these domains.
In 2017, 674 FTD caregivers in the United States (US) completed a web-based survey of caregiver and patient demographics, disease severity/symptoms, caregiver burden, and financial costs of caregiving. The major factors of caregiver burden (Zarit Burden Inventory) were determined using a principal axis factor analysis with varimax rotation. Multiple linear regression analyses examined caregiver and patient characteristics associated with overall burden and three major factors of burden: role strain, personal strain, and performance strain.
Increased neuropsychiatric symptoms was associated with overall caregiver burden and greater role, personal, and performance strain. Younger caregivers experienced greater overall burden and performance strain, female caregivers experienced increased role strain, and male caregivers experienced greater performance strain. Financial costs of caregiving and experiencing a caregiving crisis in the past year were associated with higher overall burden and role strain.
This study suggests that the severity and sources of burden differ for caregivers of FTD patients versus patients with other dementia types. Differing predictors for each burden domain suggest targeted interventions to address the unique FTD caregiving challenges.
The objectives of this study were to replicate the analyses conducted by the creators of the Indicators of Abuse (IOA) Screen with a Spanish sample group and compare the results, to present new validity evidences, to analyze which items were more relevant in the detection of situations of risk of abuse, and to establish a cut-off point to interpret the obtained scores. The IOA was used by 46 professionals from social services teams who assessed the situation of 231 elderly individuals and their main caregivers. The obtained results advocated towards unidimensionality of the scale. It showed a high level of internal consistency (α = .94). The Confidence Interval of 99% for the alpha coefficient was between .92 and .95. The ordinal alpha coefficient reached the value of .98. The total score of the scale showed adequate temporal stability (r = .91; p ≤ .001; N = 163). Statistically significant differences (t-test) in the mean scores of most of the items were found between cases of adequate treatment and cases of risk of abuse. The scale classified correctly 93% of all cases. The best balance between sensitivity and specificity was found at the cut-off point given by score 16 (Sensitivity = 0.94, Specificity = 0.85). The results appear to confirm the validity evidence of the instrument when used with a Spanish population. However, it is necessary to conduct further research and confirm the results with wider, more representative sample groups.
Prion diseases are rare dementias that most commonly occur sporadically, but can be inherited or acquired, and for which there is no cure. We sought to understand which prion disease symptoms are most problematic for carers, to inform the development of outcome measures.
Self-completed questionnaire with follow-up of a subset of participants by structured interview.
A nested study in the UK National Prion Monitoring Cohort, a longitudinal observational study.
Participants and measurements:
71 carers, of people with different prion diseases with a wide range of disease severity, identified 236 of their four most problematic symptoms by questionnaire which were grouped into ten domains. Structured interviews were then done to qualitatively explore these experiences. Eleven family carers of people with prion disease were selected, including those representative of a range of demographics and disease subtypes and those who cared for people with prion disease, living or recently deceased. Interviews were transcribed and formally studied.
The six most problematic symptom domains were: mobility and coordination; mood and behavior; personal care and continence; eating and swallowing; communication; and cognition and memory. The prevalence of these symptoms varied significantly by disease stage and type. A formal analysis of structured interviews to explore these domains is reported.
We make suggestions about how healthcare professionals can focus their support for people with prion disease. Clinical trials that aim to generate evidence regarding therapies that might confer meaningful benefits to carers should consider including outcome measures that monitor the symptomatic domains we have identified as problematic.
Informal caregivers of individuals with Parkinson’s disease face a range of responsibilities that increase as the disease progresses. As a result of these stressors, caregivers are vulnerable to decreased health-related quality of life (HRQOL). Guided by the stress process model of caregiving, the present study examined the relations between family cohesion, perceived burden, and mental and physical HRQOL among Parkinson’s disease caregivers in Mexico. It was hypothesized that perceived burden would mediate the relations of family cohesion and mental and physical HRQOL.
Ninety-five family caregivers of individuals with Parkinson’s disease in Mexico City, Mexico, participated in the study. Multiple regression was utilized to conduct mediation analyses.
Results indicated that burden fully mediated the relation between family cohesion and mental HRQOL, and family cohesion was not associated with physical HRQOL.
Findings extend the stress process model cross-culturally and lend support for the importance of family cohesion and perceived burden in determining caregiver mental HRQOL. Clinical health promotion interventions should target perceived burden and family cohesion together to improve mental HRQOL among familial caregivers in Mexico.
The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life).
A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials.
The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety.
Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.
The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease.
This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.
The high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).
Significance of results
This study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.
The use of FDA approved medications for Alzheimer's disease [AD; FDAAMAD; (cholinesterase inhibitors and N-methyl-D-aspartate receptor antagonists)] has been associated with symptomatic benefit with a reduction in formal (paid services) and total costs of care (formal and informal costs). We examined the use of these medications and their association with informal costs in persons with dementia.
Two hundred eighty participants (53% female, 72% AD) from the longitudinal, population-based Dementia Progression Study in Cache County, Utah (USA) were followed up to ten years. Mean (SD) age at baseline was 85.6 (5.5) years. Informal costs (expressed in 2015 dollars) were calculated using the replacement cost method (hours of care multiplied by the median wage in Utah in the visit year) and adjusted for inflation using the Medical Consumer Price Index. Generalized Estimating Equations with a gamma log-link function were used to examine the longitudinal association between use of FDAAMAD and informal costs.
The daily informal cost for each participant at baseline ranged from $0 to $318.12, with the sample median of $9.40. Within the entire sample, use of FDAAMAD was not significantly associated with informal costs (expβ = 0.73, p = 0.060). In analyses restricted to participants with mild dementia at baseline (N = 222), use of FDAAMAD was associated with 32% lower costs (expβ = 0.68, p = 0.038).
Use of FDAAMAD was associated with lower informal care costs in those with mild dementia only.
To estimate the impact of comorbid diabetes on caregiver stress in Alzheimer's disease (AD) patients from the Impact of Cholinergic Treatment Use (ICTUS) study.
Using the Data from the ICTUS study, diabetes mellitus (DM) was recorded at baseline and caregiver burden was assessed twice per year using the Zarit Burden Interview (ZBI) scale. The three-factorial model of ZBI (the effect on the social and personal life of caregivers, the psychological burden and the feelings of guilt) was adopted. Linear mixed models were used to examine the relation between DM and the scores of ZBI.
The present analyses were conducted on 1,264 AD subjects. A total of 156 patients (12.3%) had DM with taking antidiabetic medication and/or self-report of a history. At baseline, the caregivers of patients with or without DM had similar ZBI global scores and similar scores of three different factors of ZBI. Unadjusted and adjusted models both indicated that ZBI global score increased over a 24-month follow-up without significant effect of DM. Similarly, unadjusted model showed that DM was not determining any significant difference in the score of any factor. However, adjusted model indicated that in diabetic patients, the scores of the social and personal life of caregivers and the psychological burden increased more slowly than those in non-diabetic patients (p = 0.04 and 0.01, respectively).
DM may affect the caregivers’ daily social and personal life and psychological burden in AD patients. It is necessary for further research.
Dementia caregiving is often stressful and depression in family caregivers is not uncommon. As caregiver depression can have significant effects, there is a need for preventive efforts which are consistent with the extensive literature. We sought to consolidate the wide range of evidence (using a multi-method approach) into a simple framework that can guide the prevention of caregiver depression.
Using multiple logistic regression, we derived the predictors of caregiver depression from an empirical dataset containing key information and depression scores (based on the Center-for-Epidemiological-Studies-Depression-Scale) of 394 family caregivers. We then chose an underpinning theory as the foundation of the framework, and conducted an umbrella systematic review to find possible links between the derived predictors and the theory. Last, we compared the iterated framework with known interventions for caregiver depression in recent literature to assess whether the framework could map meaningfully with the known interventions.
Significant predictors of caregiver depression included primary caregiver (odds ratio, OR = 1.53), severe dementia (OR = 1.40), and behavioral problems (OR = 3.23), lower education (OR = 1.77), and spousal caregivers (OR = 1.98). The integrated framework derived focuses on four strategic areas: physical-care demands of persons with dementia (PWD), behavioral problems of PWD, caregiving competency, and loss and grief of caregivers. This framework is supported by known interventions for caregiver depression in recent literature.
By consolidating a broad range of evidence, we iterated a framework to aid the understanding and prevention of caregiver depression in dementia. The framework offers an approach to prevention which is simple, systematic, and reflective of the extensive literature.
The Dementia Care Mapping (DCM) method is an internationally recognized complex intervention in dementia research and care for implementing person-centered care. The Leben-QD II trial aimed to evaluate the effectiveness of DCM with regard to caregivers.
The nine participating nursing home units were allocated to three groups: (1) DCM method experienced ≥ 1 year, (2) DCM newly introduced during this trial, and (3) regular rating of residents’ quality of life (control group). Linear mixed models were fit to cluster-aggregated data after 0, 6, and 18 months, adjusting for repeated measurements and confounders. The primary outcome was the Approaches to Dementia Questionnaire (ADQ) score; the secondary outcomes were the Copenhagen Psychosocial Questionnaire (COPSOQ) and the Copenhagen Burnout Inventory (CBI).
The analysis included 201 caregivers with 290 completed questionnaires (all three data collection time points). The ADQ showed a significant time and time*intervention effect. At baseline, the estimated least-square means for the ADQ were 71.98 (group A), 72.46 (group B), and 71.15 (group C). The non-linear follow-up of group A indicated an estimated-least square means of 69.71 (T1) and 68.97 (T2); for group B, 72.80 (T1) and 72.29 (T2); and for group C, 66.43 (T1) and 70.62 (T2).
The DCM method showed a tendency toward negatively affecting the primary and secondary outcomes; this finding could be explained by the substantial deviation in adherence to the intervention protocol.
The aim of the present study was to investigate the psychometric characteristics of the Perceived Stress Scale (PSS) in a sample of dementia patients and their spousal caregivers.
We investigated the reliability and validity of the 14-item PSS in a sample of 80 couples, each including one spouse who had been diagnosed with mild to moderate dementia (mean age 75.55, SD = 5.85, 38.7% female) and one spousal caregiver (mean age 73.06, SD = 6.75, 61.3% female). We also examined the factor structure and sensitivity of the scale with regard to gender differences.
Exploratory factor analysis of the PSS revealed a two-factor solution for the scale; the first factor reflected general stress while the second factor consisted of items reflecting the perceived ability to cope with stressors. A confirmatory factor analysis verified that the data were a better fit for the two-factor model than a one-factor model. The two factors of the PSS showed good reliability for patients as well as for caregivers ranging between α = 0.73 and α = 0.82. Perceived stress was significantly positively correlated with depressive symptomatology in both caregivers and patients. Mean PSS scores did not significantly differ between male and female patients nor did they differ between male and female caregivers.
The present data indicate that the PSS provides a reliable and valid measure of perceived stress in dementia patients and their caregivers.
The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress.
An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress.
Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention.
Significance of results:
Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.