Impulsive and compulsive behaviors in Parkinson's disease: Impact on quality of and satisfaction with life,and caregiver burden

IntroductionTo disentangle the association between impulsive and compulsive behaviors (ICBs), health-related quality of life (HRQOL), satisfaction with life (SwL), and caregiver distress in dyads of people with Parkinson's disease (PwP) and caregivers.MethodsData used in this study were obtained from the ongoing Norwegian ParkWest study, a population-based longitudinal cohort study of the incidence, neurobiology and prognosis of PD in Western Norway. One hundred and one dyads of PwP free of dementia and their caregivers were included 5 years after PD diagnosis and inclusion in the ParkWest study. Standardized clinical rating scales were used to evaluate ICBs, HRQOL, SwL and caregiver distress.ResultsOf 101 PwP-caregiver dyads, self-reported ICBs were seen in 33% of PwP and only caregiver-reported ICBs in 12% of PwP. PwP-reported ICBs were associated with poorer HRQOL and SwL, whereas ICBs reported by caregivers only were associated with increased caregiver distress, but not poorer HRQOL or SwL in PwP.ConclusionsICBs have adverse effects on HRQOL, SwL and caregiver distress. These findings underpin the need for proper identification and management of ICBs in PwP.     

Using business/law negotiation techniques in response to a ‘difficult’ family

Effective communication between clinicians, patients, and families at end of life is associated with better clinical outcomes. A large body of literature describes the key skills needed for effective communication. We believe that clinicians could also benefit from communication skills more commonly associated with business or law negotiations. We will demonstrate via analogy (i.e. buying a house) how four key business/law negotiation techniques – 1. Determine your Reservation and Aspiration Value; 2. Separate People from their Positions; 3. Separate Positions from Interests; and 4. Logrolling of Interests – can be applied to a difficult family meeting in a home hospice patient.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

Quality of life in patients with multiple sclerosis and caregivers. Predictive factors: An observational study

PurposeMultiple sclerosis (MS) is a neurodegenerative and autoimmune disease, which can significantly affect not only the quality of life (QoL) of affected people but also that of their careers who care for them. The main objective of this study was to assess the extent to which the patient's clinical, cognitive and psychological conditions affect his or her QoL and that of the caregiver.MethodsWe examined a number of patients with clinically defined MS. In this study 78 patient-assistant pairs were enrolled.ResultsOur results showed a significant correlation between the change in the patient's state of health and the quality of life of caregivers, especially in specific social and work areas. In addition, the age and the physical and mental health of patients emerged as predictive factors on the quality of caregivers.ConclusionsThis study has shown that degenerative and chronic diseases, such as multiple sclerosis, can be predictors of stress and poor quality of life for careers.Future studies should further clarify the impact that the psychological conditions of MS patients have on the quality of life of careers.     

Depression among caregivers of patients with dementia: Associative factors and management approaches

As elderly people increasingly come to represent a higher proportion of the world’s population, various forms of dementia are becoming a significant chronic disease burden. The World Health Organization emphasizes dementia care as a public health priority and calls for more support for family caregivers who commonly play a significant, central role in dementia care. Taking care of someone with dementia is a long-term responsibility that can be stressful and may lead to depression among family caregivers. Depression and related behavioral and cognitive changes among caregivers could in turn affect the status and prognosis of the dementia patient. This review article explores depression in dementia caregivers and summarizes proposed mechanisms, associated factors, management and research findings, and proposes future research directions.     

Parent-reported sleep problems in school-aged children with fetal alcohol spectrum disorder: association with child behaviour,caregiver, and family functioning

Objective/backgroundSleep problems are a common clinically reported area of concern for children and adolescents with fetal alcohol spectrum disorder (FASD). However, limited empirical research has been undertaken investigating sleep problems for children with FASD. The current study aimed to examine the associations between parent-reported sleep problems in children with FASD and child behaviour, caregiver mental health and health-related quality of life and family functioning.Participants163 caregivers of children diagnosed with FASD aged 5–17 years were included in the current study.MethodCross-sectional online survey that collected information pertaining to child sleep problems (difficulty falling asleep, difficulty staying asleep and/or frequent waking during the night and waking early in the morning) and standardised caregiver reported measures of child behaviour, caregiver mental wellbeing, caregiver health-related quality of life, and family functioning.ResultsSleep problems were common, affecting 65.6% (n = 107) of participants. Difficulty falling asleep (56.4%) was the most common sleep problem encountered, followed by difficulty staying asleep (44.8%) and waking early (29.4%). Sleep problems were associated with increased rates of child behaviour problems and caregiver anxiety and negative impacts on caregiver and family quality of life.ConclusionSleep problems in children and adolescents with FASD are common and associated with poorer child, caregiver and family outcomes. Future research needs to determine whether effective identification and management of sleep problems can reduce adverse outcomes.     

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms

IntroductionApproximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population.MethodsSecondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale.ResultsOf 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms.ConclusionFindings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.     

Online self-management interventions for chronically ill patients: Cognitive impairment and technology issues

IntroductionAs the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully.ObjectivesTo review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies.MethodsThis study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management.ResultsDisease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management.ConclusionPatients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient–caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies.