Caregiver burden in Parkinson's disease: a mixed-methods study.

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Caregiver Tele-Assistance for Reduction of Emotional Distress During the COVID-19 Pandemic. Psychological Support to Caregivers of People with Dementia: The Italian Experience.

BACKGROUND: COVID-19 pandemic worsened vulnerability of patients with dementia (PWD). This new reality associated with government restriction and isolation worsened stress burden and psychological frailties in PWD caregivers. OBJECTIVE: To give tele-psychological support to caregivers and evaluate the effect of this intervention by quantifying stress burden and quality of life during the first COVID-19 lockdown. METHODS: 50 caregivers were divided into two groups: "Caregiver-focused group" (Cg) and "Patient-focused group" (Pg). Both groups received telephone contact every 2 weeks over a 28-week period, but the content of the call was different: in Cg, caregivers answered questions about the state of the PWD but also explored their own emotional state, stress burden, and quality of life. In Pg instead, telephone contacts were focused only on the PWD, and no evaluation regarding the caregiver mood or state of stress was made. Psychometric scales were administered to evaluate COVID-19 impact, stress burden, and quality of life. RESULTS: Considering the time of intervention, from baseline (W0) to W28, Zarit Burden Interview and Quality of Life-caregiver questionnaires remained unchanged in Cg as compared with baseline (p > 0.05), whereas they worsened significantly in Pg (p < 0.01), showing increased stress over time and decreased quality of life in this group. Moreover, Impact on Event Scale values improved over the weeks in Cg (p = 0.015), while they remained unchanged in Pg (p = 0.483). CONCLUSION: Caregivers who received telephone support about their mood and stress burden did not worsen their psychological state during the time of intervention, as did instead those who did not get such support.

Comparative Effectiveness of Behavioral Interventions to Prevent or Delay Dementia: One-Year Partner Outcomes.

BACKGROUND/OBJECTIVE: Various behavioral interventions are recommended to combat the distress experienced by caregivers of those with cognitive decline, but their comparative effectiveness is poorly understood. DESIGN/SETTING: Caregivers in a comparative intervention study randomly had 1 of 5 possible interventions suppressed while receiving the other four. Caregivers in a full clinical program received all 5 intervention components. Care partner outcomes in the study group were compared to participants enrolled in a full clinical program. PARTICIPANTS: Two hundred and seventy-two dyads of persons with amnestic mild cognitive impairment (pwMCI) and care partners enrolled in the comparative intervention study. 265 dyads participated in the full clinical program. INTERVENTION: Behavioral intervention components included: memory compensation training, computerized cognitive training, yoga, support group, and wellness education. Each was administered for 10 sessions over 2 weeks. MEASUREMENTS: A longitudinal mixed-effect regression model was used to analyze the effects of the interventions on partner burden, quality of life (QoL), mood, anxiety, and self-efficacy at 12 months follow-up. RESULTS: At 12 months, withholding wellness education or yoga had a significantly negative impact on partner anxiety compared to partners in the clinical program (ES=0.55 and 0.44, respectively). Although not statistically significant, withholding yoga had a negative impact on partner burden and mood compared to partners in the full clinical program (ES=0.32 and 0.36, respectively). CONCLUSION: Our results support the benefits of wellness education and yoga for improving partner's burden, mood, and anxiety at one year. Our findings are the first to provide an exploration of the impact of multicomponent interventions in care partners of pwMCI.

Role of cancer survivor health and health service use in spouses' use of mental health-related care.

BACKGROUND: Spouses of cancer survivors are at an increased risk of poor mental health outcomes but are known to underuse supportive services. The objective of the current study was to determine how the health and health care use of cancer survivors were associated with depression and anxiety-related health care use in their spouses. METHODS: The current observational study used data from the Medical Expenditure Panel Survey to identify married individuals with a cancer-related medical event or disability ("cancer survivors"), and linked health and health care use data across spousal dyads. Spouses reporting a prescription for an antidepressant or antianxiety medication or any psychotherapy were flagged as having used mental health care. Correlates of use were assessed, with a focus on the health and health care use of the cancer survivor. RESULTS: Greater than 25% of the spouses of cancer survivors used mental health care over the approximately 2.5 years of follow-up. Controlling for their own predisposing, enabling, and need characteristics, spouses were found to be less likely to use mental health care if the cancer survivor reported more health conditions or elevated depressed mood compared with dyads in which the survivor reported low distress and depression. Spouses were nearly 3 times more likely to use mental health care if the cancer survivor themselves had used mental health care (odds ratio, 2.98; 95% confidence interval, 2.17-4.09). CONCLUSIONS: The findings of the current study enhance understanding of how health outcomes are intertwined in families with cancer, and reinforce the importance of a family-centered approach to cancer care that facilitates psychosocial care. LAY SUMMARY: The health and well-being of cancer survivors and their spouses are intertwined. The results of the current study demonstrated that this interrelationship extends to mental health care related to depression and anxiety. Spouses of cancer survivors were found to be less likely to receive mental health care when the survivor had more health care needs. Spouses were nearly 3 times more likely to receive care if the survivor also was receiving mental health care. Caregiving spouses may face more challenges finding the time, money, or energy to engage in their own self-care. However, providing supportive care to one partner may help the other partner access care as well.

Psychosocial support interventions for cancer caregivers: reducing caregiver burden.

PURPOSE OF REVIEW: Informal caregivers of individuals affected by cancer undertake a range of activities and responsibilities throughout the course of the cancer care trajectory. This role is often undertaken alongside employment and other caring roles and can contribute to caregiver burden, which may be ameliorated through psychosocial intervention. RECENT FINDINGS: Fifteen new studies investigating the potential of psychosocial interventions for reducing caregiver burden were identified from the period January 2019 to February 2020. Studies were mostly quasi-experimental or randomised controlled trials (RCTs). Psychoeducation was the main intervention identified, though content varied, psychoeducation was associated with improvements in burden, quality of life (QoL) domains and psychological symptoms for caregivers. A small number of counselling/therapeutic interventions suggest that caregivers supporting patients with advanced cancer or cancers with high symptom burden may experience reduced psychological symptoms and QoL benefits. There was a paucity of evidence for other psychosocial interventions (e.g. mindfulness, acceptance and commitment therapy) and methodological quality was variable across all intervention types. SUMMARY: Psychosocial interventions may help to reduce burden for informal caregivers of individuals affected by cancer, though there remains a need for rigorously designed, multicentred RCTs and to examine the long-term impact of psychosocial interventions for caregivers.

Non-Pharmacological interventions for the anxiety in patients with dementia. A cross-over randomised controlled trial.

BACKGROUND: Behavioural and Psychiatric Symptoms in dementia (BPSD) tend to be a crucial and big problem in dementia. Anxiety several times remains under-diagnosed because it is often considered to be a psychological response to cognitive decline. As only the 10 % of patients were correctly treated, the pharmacological treatment should be well- considered. The aim of this study was to evaluate three non-pharmacological interventions for the treatment of anxiety in dementia. METHODS: A cross-over randomised controlled trial with 60 participants (different types and stages of dementia) conducted in Greece. The sample was randomly assigned to 6 different groups of 10 participants each. The non-pharmacological interventions that have been evaluated are: a) Music Therapy b) Exercise and c) Aromatherapy & Massage. The measurements that were used are: MMSE, ACE-R, GDS, FRSSD and NPI questionnaire. The interventions lasted 5 days and there was two days off as a wash-out period. There was no drop-out rate. RESULTS: The study showed that the most effective intervention is Music therapy. The second most effective intervention is Exercise and the third one is Aromatherapy and Massage. In the parenthesis p results indicate that Music Therapy's p is less than 0.05 in comparison with Exercise and Aromatherapy and Massage and therefore the sequence of the interventions does not interfere with the results. (p = <0.05, p = 0.55, accordingly). Caregivers' burden also reduced with MT. In the parenthesis p results indicate Music Therapy's p is less than 0.05 in comparison with the two other interventions and therefore the sequence of the interventions does not interfere with the results, as well (p = <0.05, p = 0.19). CONCLUSIONS: Our results are in accordance with the current literature. Music Therapy is a promising alternative intervention for the treatment of anxiety in PwD. Music Therapy is an effective non-pharmacological treatment for the reduction of the caregivers' burden, because of the anxiety symptoms in PwD, such as lack of sleep, lack of personal time, unhealthy lifestyle, lack of solutions on what to do with their patients etc. The type of music, the duration of the intervention and the long-term benefits remain unclear. There is a big need of further research with stronger possible evaluation methods.

Protocol for an embedded pragmatic clinical trial to test the effectiveness of Aliviado Dementia Care in improving quality of life for persons living with dementia and their informal caregivers.

INTRODUCTION: Persons living with Alzheimer's disease and related dementias (ADRD) frequently experience pain and behavioral and psychological symptoms of dementia (BPSD) which decrease quality of life (QOL) and influence caregiver burden. Home healthcare professionals however may underrecognize or lack the ability to manage BPSD. INTERVENTION: This protocol describes an ADRD palliative quality assurance performance improvement program for home healthcare, Aliviado Dementia Care-Home Health Edition. It includes training, mentoring, and a toolbox containing intervention strategies. METHODS: This embedded pragmatic clinical trial will utilize a multi-site, cluster randomized control design. Recruitment will occur from three home healthcare agencies located in New Jersey, Utah, and Florida. At each agency, care teams will be randomized as clusters and assigned to either the Aliviado Dementia Care program or usual care. We plan to enroll 345 persons living with ADRD and their informal caregiver dyads. The primary outcome will be to measure QOL in both the person living with ADRD and their informal caregiver, and emergency department visits and hospital admissions. Secondary outcomes in the person living with ADRD will include the examination of pain, BPSD, antipsychotic and analgesic use. Secondary outcomes in caregivers include burden, depressive symptoms, functional health and wellbeing, and healthcare utilization. CONCLUSION: This study will be the first large-scale embedded pragmatic clinical trial in home healthcare focused on care quality and outcomes in addressing QOL in ADRD. If proven successful, the intervention can then be disseminated to agencies throughout the country to improve the quality of care for this vulnerable, underserved population. TRIAL REGISTRATION: Clinical Trials.gov: NCT03255967.

Family-centeredness in dementia care: what is the evidence?

Over the last decade, person-centered practices in care for adults with Alzheimer's disease and related dementias (AD/RD) has received significant attention from the health care and social service literature, though less attention has been paid to family-centered care (FCC). Initially conceptualized for application in pediatric care, FCC is an approach where clinicians develop partnerships with care recipients' family members and views family members as having expertise to contribute to the clinical team. More recently, FCC has been extended to the literature on AD/RD care, though little is known about the extent to which family-centered interventions have been developed for use in AD/RD clinical practice, or the effectiveness of family-centered care for this population. To contribute to gaps in scholarship, this systematic review identified and evaluated intervention studies examining FCC in AD/RD clinical care. Implications for research and practice are discussed.

Impact of the caregiver burden on the effectiveness of a home-based palliative care program: A mediation analysis.

OBJECTIVE: The growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program. METHOD: Sixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program. RESULTS: The association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program. SIGNIFICANCE OF RESULTS: To our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.

Design and Usability Testing of the Stroke Caregiver Support System: A Mobile-Friendly Website to Reduce Stroke Caregiver Burden.

PURPOSE: The purpose of this study was to design a mobile-friendly, Internet-based website, modeled on previously described websites for Alzheimer caregivers, to equip stroke caregivers and potentially reduce caregiver burden. DESIGN: A mixed-methods study was performed to design and test the usability of the Stroke Caregiver Support System (SCSS). METHODS: An iterative, user-centered design approach was employed in three phases: (I) Focus Groups, (II) Structured Interviews, and (III) Usability Testing. Phase I and Phase II provided information for the development of the SCSS website, whereas Phase III helped in gathering data regarding the usability and efficacy of the newly implemented SCSS website. FINDINGS: Qualitative data on caregiving and the content and design of the SCSS were obtained from focus groups and interviews. In the usability test, the nine caregivers who completed Phase III (78% women, mean age = 46, SD = 17) exhibited a high level of burden and depressive symptoms (median [Q1, Q3] Zarit burden score = 18 [16, 23], Center of Epidemiologic Studies-Depression Scale = 15 [8, 17]). Caregivers conveyed the usability of the SCSS but also expressed several needed improvements. CONCLUSIONS: Participants reported the value of the SCSS, but further refinements are needed to maximize its usability and potential efficacy. CLINICAL RELEVANCE: The SCSS has potential to reduce caregiver burden in stroke.

The Effect of 20-Minute Mindful Breathing on the Perception of Suffering and Changes in Bispectral Index Score (BIS) in Palliative Care Informal Caregivers: A Randomized Controlled Study.

Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = -2.095, P = .036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = -4.900, P < .0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.

Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life.

As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support.