Disease Caregivers Research Articles

Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers.

BackgroundIn the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers.ObjectiveThe primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants’ social networks. The study’s secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers.MethodsWe recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants’ Facebook News Feed, allowing participants’ Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers.ResultsIn total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%).ConclusionsWe found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers’ self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD.

Turkish Adult Children as Caregivers of Parents with Alzheimer's Disease: Perceptions and Caregiving Experiences.

There is substantial evidence suggesting that Western and non-Western caregivers of patients with Alzheimer's disease have different caregiving experiences depending on the cultural values they adopt. Although family-centered constructs such as familism and filial piety have taken some attention, there is still a paucity of research on how cultural values and norms shape caregiving appraisals, coping strategies, and formal service use specifically in Eastern-oriented contexts. The aim of this study was to investigate Turkish adult children caregivers' perceptions of Alzheimer's disease and caregiving experience. Researchers conducted in-depth interviews with 20 primary caregivers and analyzed data with interpretative phenomenological analysis. First, most caregivers viewed family disharmony as the main cause of the disease. Second, although burden is evident in their accounts, caregivers reported positive changes during their caregiving experiences, as well. Third, caregivers employ religious/fatalistic coping and they benefit from social support during their caregiving experiences. Forth, most caregivers opposed to nursing home placement because they view it as a morally improper act; they are afraid of neighborhood pressure; they perceive caregiving as a child's responsibility; they do not want their children to do so; and they do not trust conditions of care facilities in Turkey. Findings indicated that Eastern norms and values might have differential impacts on Alzheimer's disease caregiving outcomes. Hence, we invite mental health professionals to integrate culturally sensitive aspects into the possible intervention programs targeting Alzheimer's disease caregivers from non-Western contexts.

特集の企画にあたって

特集の企画にあたって

Prevalence and Risk Factors of Malnutrition among HIV-Infected Children Aged 2-18 Years: A Cross Sectional Study

Background: Malnutrition and underweightness are common problems among HIV-infected children in low and middle income countries. Methods and findings: A single-centered, retrospective, cross-sectional cohort survey was conducted between January 1, 2014 and June 30, 2014 to assess the prevalence and risk factors of malnutrition among HIV-infected children aged 2-18 years at the Bamrasnaradura Infectious Diseases Institute (BIDI), Thailand. Clinical and laboratory data were compared between a malnutrition group, (Group A): body mass index (BMI) for age 5th percentile and <95th percentile. One hundred and ninety-five HIVinfected children were retained for analyses. The prevalence of malnutrition was 43% (83 of 195). The following proportions were higher in Group A than B, respectively: advanced clinical staging (83% vs. 12%), PI-based HAART (73% vs. 38 %) and anaemia (48% vs. 8%) (all p<0.05). The median of Log10 plasma HIV RNA was higher in Group A than B (1.7 vs. 1.6, respectively; p<0.05). The proportions of RNA ≤ 40 copies/mL and parent caregivers in Group A were lower than B (48% vs. 86% and 35% vs. 54%, respectively; all p<0.05). Other factors did not differ significantly. In multivariate analysis, malnutrition was significantly associated severity (WHO stages 3 and 4) (OR=184.50, 95% CI=[35.72-952.73]), PI (OR= 5.38, 95% CI=[1.97-14.67]) and parent as caregivers (OR= 0.56, 95% CI=[0.34-0.92]). No significant differences between Group A and B were found in Log10 plasma HIV RNA, RNA ≤ 40 copies/mL, hemoglobin and anemia. Conclusion: The prevalence of malnutrition was 43%. Malnutrition among HIV-infected children was associated with the severity of disease, PI-based HAART and nonparent caregiver.

Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China.

To evaluate caregiver burden and factors that influence this burden among caregivers and patients with Alzheimer's disease in China. Long-term care can reduce the quality of life for caregivers and result in both mental and physical exhaustion. However, little is known about caregiver burden and associated factors in China. The study had a quantitative cross-sectional design. A total of 309 caregivers and their patients were included in the study. The patients' cognitive, psychological and functional status and their caregivers' burden, sleep quality and mental state were evaluated. Descriptive analyses, single-factor regression and stepwise factor regression were used to determine the effects of various factors on caregiver burden. Older females and spouses still play an important role in providing family care for those with dementia. Most of the caregivers were the sole full-time caregiver and had little time for themselves. Sleepiness was a common physical problem for caregivers, and some of them had moderate to severe depression and anxiety. A lower functional status of the patient was associated with higher caregiver burden. Poorer physical status compared with before caregiving began, lower life satisfaction, and higher degrees of depression and anxiety were associated with higher caregiver burden. Depression, anxiety and sleep problems are the main challenges that are faced by family caregivers of patients with Alzheimer's disease. Caregivers' functional status, lower life satisfaction, depression and anxiety influenced caregiver burden. Caregiver burden was related to the severity of the patient's dementia and the personal factors of the caregivers. To provide information about caregivers' current status while caring for patients with Alzheimer's disease and to understand caregiver burden and its related factors. Professionals who work with Alzheimer's disease should pay more attention to caregiver burden, especially those with mental and physical problems.

Resilience as a concept for understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease (COPD): an integrative review.

AimsThis paper was a report of the synthesis of evidence on examining the origins and definitions of the concept of resilience, investigating its application in chronic illness management and exploring its utility as a means of understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease.BackgroundResilience is a concept that is becoming relevant to understanding how individuals and families live with illness, especially long‐term conditions. Caregivers of adults with Chronic Obstructive Pulmonary Disease must be able to respond to exacerbations of the condition and may themselves experience cognitive imbalances. Yet, resilience as a way of understanding family caregiving of adults with COPD is little explored.DesignLiterature review – integrative review.Data sources CINAHL, PubMed, Google Scholar and EBSCO were searched between 1989–2015.Review methodsThe principles of rapid evidence assessment were followed.ResultsWe identified 376 relevant papers: 20 papers reported the presence of the concept of resilience in family caregivers of chronic diseases patients but only 12 papers reported the presence of the concept of resilience in caregivers of Chronic Obstructive Pulmonary Disease patients and have been included in the synthesis. The term resilience in Chronic Obstructive Pulmonary Disease caregiving is most often understood using a deficit model of health.

ASSESSMENT OF THE NEEDS OF ALZHEIMER'S DISEASE CAREGIVERS IN THE AFRICAN AMERICAN COMMUNITY

ASSESSMENT OF THE NEEDS OF ALZHEIMER'S DISEASE CAREGIVERS IN THE AFRICAN AMERICAN COMMUNITY

“A monster that lives in our lives”: experiences of caregivers of people with motor neuron disease and identifying avenues for support

BackgroundA developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.AimThis...

Health Literacy in Parkinson's Disease Caregivers (P1.021)

Health Literacy in Parkinson's Disease Caregivers (P1.021)

Cognitive-behavioral changes in amyotrophic lateral sclerosis: Screening prevalence and impact on patients and caregivers

Our objective was to evaluate the association between cognitive-behavioral deficits and patient quality of life (QoL), caregiver burden, and disease stage in a population of patients with amyotrophic lateral sclerosis (ALS). We administered the ALS Cognitive-Behavioral Screen™ to 86 patients with ALS. Multiple regression was used to evaluate the association between cognitive or behavioral deficits and disease stage, patient QoL, and caregiver burden while controlling for clinically important variables. Of 86 participants enrolled, 53 (62%) had some degree of cognitive impairment, 32 (37%) were behaviorally impaired and four met both cognitive and behavioral screening criteria for frontotemporal dementia (FTD). The severity of cognitive-behavioral deficits was not associated with patient QoL. More pronounced cognitive deficits (beta = –1.4, p = 0.04) and behavioral symptoms (–0.69, p < 0.001) predicted higher caregiver burden. Self-reported QoL was lower in patients with more depressive symptoms (beta = –0.32, p < 0.001) and more advanced disease (beta =0.10, p = 0.01). In conclusion, general QoL for patients with ALS is not associated with cognitive or behavioral deficits. More severe cognitive deficits and caregiver-reported behavioral symptoms predict higher caregiver burden. Routine cognitive-behavioral screening can identify patients who require full neuropsychological examination, inform patient counseling, and identify caregivers in need of early, targeted interventions.

Which behaviours? Identifying the most common and burdensome behaviour changes in amyotrophic lateral sclerosis

Behaviour change is increasingly recognised as a common feature of amyotrophic lateral sclerosis (ALS), and may be similar to that seen in frontotemporal dementia (FTD). The behaviours most disturbed in ALS, and those that relate most significantly to caregiver burden, however, have not been well established. Forty ALS participants and their caregivers, and 27 age- and gender-matched healthy controls and their relatives, participated in this study. ALS participants were assessed on a disease rating scale, and caregivers and control informants completed the revised version of the Cambridge Behaviour Inventory and a measure of burden. ALS caregivers reported significantly more disturbance than healthy control informants on the functional domains of everyday skills, self-care, and sleep, and in the behavioural domains of mood and motivation. There were no differences between groups in frequency of memory and orientation difficulties, or behaviours characteristic of FTD, such as changes to eating habits or stereotypic and motor behaviour, indicating that the behavioural profile in ALS may differ from FTD. In the ALS group, the domains with the strongest relationship to caregiver burden were everyday skills, motivation and memory, likely because poor motivation, memory dysfunction and difficulties completing activities of daily living require more carer support via direct supervision, prompting or hands on care. Services to support ALS patients and caregivers need to provide targeted interventions for those functional and behavioural changes which are most burdensome in the disease.

A hidden Markov model approach to analyze longitudinal ternary outcomes when some observed states are possibly misclassified.

Understanding the dynamic disease process is vital in early detection, diagnosis, and measuring progression. Continuous-time Markov chain (CTMC) methods have been used to estimate state-change intensities but challenges arise when stages are potentially misclassified. We present an analytical likelihood approach where the hidden state is modeled as a three-state CTMC model allowing for some observed states to be possibly misclassified. Covariate effects of the hidden process and misclassification probabilities of the hidden state are estimated without information from a 'gold standard' as comparison. Parameter estimates are obtained using a modified expectation-maximization (EM) algorithm, and identifiability of CTMC estimation is addressed. Simulation studies and an application studying Alzheimer's disease caregiver stress-levels are presented. The method was highly sensitive to detecting true misclassification and did not falsely identify error in the absence of misclassification. In conclusion, we have developed a robust longitudinal method for analyzing categorical outcome data when classification of disease severity stage is uncertain and the purpose is to study the process' transition behavior without a gold standard.

Navigating Without a Roadmap

Caregivers of individuals with Alzheimer’s disease are willing to make large sacrifices to attend to the everyday demands of their loved one’s health. Many still lack the necessary skills, information, and resources from medical professionals needed to fully execute this role. The aim of this study is to explore the challenges that first-time Alzheimer’s caregivers encountered with members of their health care team around a loved one’s diagnosis. Four focus groups (N = 13) were conducted in a primary care clinic and academic setting, using a semi-structured interview format facilitated by a mental health professional. The authors used thematic analysis to generate three overarching themes regarding lack of information given about the diagnosis, complications with medication management, and level of confidence in their medical team. Medical professionals should consider educating Alzheimer’s disease caregivers during the initial stage of this role, providing greater continuity of care with the family throughout treatment.

Complementary and alternative treatment methods used for patient care bycaregivers to alzheimer's disease at home

Aim: This study was carried outto determine thecomplementary and alternative treatment methods used for patient care by caregiver to Alzheimer’s disease at home. Material and Method: This study, designed in accordance with descriptive research principles, was applied in a hospital between June 15, 2014 and December 20, 2015 in Samsun. The participants were 177 Alzhemier’s disease caregivers who registered to Home Care Services Centre and who agreed to participate to the study. The data of the study were collected with 'Data Collection Form'. In evaluating the obtained data, number, percentandChi-square (X²) testwere used. Results: In the study, the average age of the caregivers of Alzheimer's patients is 48.8±13.2 and the 83.6's% are women. The frequency of the complementary and alternative treatment methods used for patient care bycaregivers to Alzheimer’s disease at homeis 61.6%. It was found out that 21.5% of the caregivers prefer massage, 30.5% prefer honey as herbal methods, 51.4% prefer religious practices for patient care. It was determined that 59.6% of the participants did not consult to the medical staff before/during their use of complementary and alternative treatment methods. The relationship between the status of achieving to the expected results of the complementary and alternative treatment methods used for patient care by caregiver to Alzheimer’s disease at home and the status of economical support was foundstatistically significant (p

Can early counselling and support for Alzheimer′s disease caregivers reduce burden? Study protocol for a multicenter randomized controlled trial

Background: The activity of caregiving for people affected with Alzheimer's disease (AD) is associated with an augmentation in health problems (anxiety, depression, stress, increased mortality), as well as in social and financial problems. Different methods of counselling, to reduce caregiver anxiety and depression, have been shown to be effective. Methods/Design: This study will be a multicenter, prospective, randomized, open-label, blinded-endpoint (PROBE) controlled superiority trial with two parallel groups. Two hundred and sixty-four caregivers of AD patients will be randomly allocated to the modified Mittelmann psychosocial intervention or an educational intervention. The treatment will consist of 6 hours of counselling and psychosocial support to caregivers, administered by psychologists, along with a specific telephone support service, whereas the active control treatment will be 6 hours of general information about AD. The primary endpoint is change in caregiver burden measured with the Zarit Burden Interview. Secondary endpoints comprise caregiver depression, anxiety and quality of life. All endpoints will be measured at baseline, 6, 12 and 24 months post treatment. Discussion: The results of this trial will be helpful to supply the efficacy of early counselling and psychosocial support for AD caregivers and offer in-depth useful information for stakholders and policy makers to implement strategies for caregivers. Trial registration: Clinical Trials.gov identifier: NCT02685787; registered on 6 February 2016. Ethics: This trial has been approved by Umbria Ethical Review Committee, Italy and will be performed in accordance with the norms on Good Clinical Practice and the Helsinki Declaration. Informed consent: Written informed consent will be obtained from the caregivers.

The relationship between specific cognitive defects and burden of care in Parkinson's disease.

In spite of the recognized physical and psychosocial effects of caring for patients with Parkinson's disease (PD), caregiver burden (CB) in this setting is poorly understood. The objective of this research was to identify factors that were associated with CB in an Australian population of PD caregivers using a novel instrument - the Parkinson's Disease Caregiver Burden (PDCB) questionnaire. Fifty patient-caregiver couples were recruited from three movement disorders clinics in Melbourne, Australia. Burden on caregivers was rated using the PDCB questionnaire. Burden scores were correlated with patient factors, including motor symptom severity (Unified Parkinson's Disease Ratings Scale and Hoehn & Yahr (H&Y) scale), patient cognition (Neuropsychiatry Unit Cognitive Assessment Tool; NUCOG), presence of impulsive and compulsive behaviors (Questionnaire for Impulsive-Compulsive Disorders in Parkinson's disease), and patient olfaction. Caregiver and patient demographics, as well as results for depression and anxiety (Hospital Anxiety and Depression Scale; HADS), were also examined for their relationship with CB. H&Y stage, depression or anxiety in either caregiver or patient, and decreased patient NUCOG score were significantly associated with higher PDCB score. Multiple linear regression analysis identified caregiver and patient depression score and patient score for the visuoconstructional subscale of NUCOG to predict burden score. In addition, disease duration, duration of caregiving, and increased hours per day spent in giving care were significantly associated with increased burden. We found psychiatric and cognitive factors to be the most relevant factors in the perception of burden in PD caregivers. On top of this, we found deficits in the domain of visuoconstruction predicted burden - a relationship not yet described in literature. Targeting depression and anxiety in this setting as well as identifying caregivers at high risk of burden may give clinicians the chance to optimize care of patients with PD through the caregiver.

Joint coverage probability in a simulation study on continuous-time Markov chain parameter estimation

Parameter dependency within data sets in simulation studies is common, especially in models such as continuous-time Markov chains (CTMCs). Additionally, the literature lacks a comprehensive examination of estimation performance for the likelihood-based general multi-state CTMC. Among studies attempting to assess the estimation, none have accounted for dependency among parameter estimates. The purpose of this research is twofold: (1) to develop a multivariate approach for assessing accuracy and precision for simulation studies (2) to add to the literature a comprehensive examination of the estimation of a general 3-state CTMC model. Simulation studies are conducted to analyze longitudinal data with a trinomial outcome using a CTMC with and without covariates. Measures of performance including bias, component-wise coverage probabilities, and joint coverage probabilities are calculated. An application is presented using Alzheimer's disease caregiver stress levels. Comparisons of joint and component-wise parameter estimates yield conflicting inferential results in simulations from models with and without covariates. In conclusion, caution should be taken when conducting simulation studies aiming to assess performance and choice of inference should properly reflect the purpose of the simulation.

Factors Associated with Greater Adherence to and Satisfaction with Transdermal Rivastigmine in Patients with Alzheimer's Disease and Their Caregivers

Background/Aims: Adherence to cholinesterase inhibitors is important in order to maximise treatment efficacy. This study aimed to investigate patient and caregiver factors associated with adherence to and satisfaction with transdermal rivastigmine treatment. Methods: Sociodemographic, clinical and psychosocial data were collected from 127 patients and their caregivers during the first follow-up visit after prescription. At the second follow-up, data were collected on 110 of the dyads. Adherence to and satisfaction with the treatment were assessed using the Medication Adherence Report Scale and an adapted version of the Alzheimer's Disease Caregiver Preference Questionnaire. Results: 66.2% of the caregivers reported being adherent to, and 77.0% were satisfied with, the patch at the second follow-up. Factors predicting higher adherence at the second follow-up were caregivers' greater frequency of contact with patients, greater satisfaction with the information received about the patch, better tolerability of the patch and living at home with their caregivers. Greater concerns of the caregivers about the patch and the patients' belief in ‘other' causes of their Alzheimer's disease predicted a lower adherence at the second follow-up. Conclusions: Assessing and addressing caregivers' concerns about transdermal rivastigmine, improving doctor-patient/caregiver communication to increase caregiver satisfaction with information about the patch as well as providing education and support around patients' beliefs and tolerability of the patch could improve adherence to transdermal rivastigmine.

Foundation engagement in healthy aging initiatives and evidence-based programs for older adults.

Foundation engagement in healthy aging initiatives and evidence-based programs for older adults.

Sex Differences in Parkinson’s Disease Caregiving (S48.003)

Sex Differences in Parkinson’s Disease Caregiving (S48.003)