Psychological Impact of Parkinson Disease Delusions on Spouse Caregivers: A Qualitative Study.
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ABSTRACT:
SUBMITTER: Deutsch CJ
PROVIDER: S-EPMC8301855 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Family caregivers of older adults experience high levels of chronic stress and psychological distress, which are known to impair cognition. Very little research, however, has assessed the impact of caregiving on key cognitive outcomes such as learning and memory. This study compared 16 spouse caregivers with 16 matched controls using standardized neuropsychological measures of learning, episodic memory, and working memory. Analyses compared groups on these cognitive outcomes and examined whether psychological distress mediated group differences in cognition. Results indicated that caregivers were significantly more distressed than non-caregivers and exhibited deficits in learning, recall of episodic information after short and long delays, and working memory. Furthermore, the majority of group differences in cognitive outcomes were mediated by psychological distress. This study adds to a small body of literature demonstrating impaired cognitive functioning among family caregivers. It also suggests that distress is one of a number of possible underlying mechanisms leading to disruptions in learning and memory in this population.
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Project description:The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents, n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34-78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.
| S-EPMC4673040 | biostudies-literature
Project description:BackgroundCerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease.MethodsWe recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the illness: before receiving a formal diagnosis, at the start of initial treatment, after initial treatment was completed and at six months' follow-up; caregivers were also interviewed postbereavement. We interviewed the patients' general practitioners once, after treatment had been completed. We transcribed the interviews and analyzed them thematically using the constant comparative method of a grounded theory approach.ResultsWe conducted in-depth interviews with 26 patients, 23 of their relatives and 19 general practitioners. We saw evidence of physical, social, psychological and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment. Each patient's individual course varied according to other factors including the availability of support and individual and family resources (e.g., personal resilience and emotional support).InterpretationThere are practical ways that clinicians can care for patients with glioma and their caregivers, starting from before a diagnosis is confirmed. Understanding the trajectories of physical, social, psychological and existential well-being for these patients allows health care professionals to predict their patients' likely needs so they can provide appropriate support and sensitive and effective communication.
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Project description:BackgroundParkinson disease (PD) symptoms are complex, gradually progressive, and fluctuate hour by hour. Home-based technological sensors are being investigated to measure symptoms and track disease progression. A smart home sensor platform, with cameras and wearable devices, could be a useful tool to use to get a fuller picture of what someone's symptoms are like. High-resolution video can capture the ground truth of symptoms and activities. There is a paucity of information about the acceptability of such sensors in PD.ObjectiveThe primary objective of our study was to explore the acceptability of living with a multimodal sensor platform in a naturalistic setting in PD. Two subobjectives are to identify any suggested limitations and to explore the sensors' impact on participant behaviors.MethodsA qualitative study was conducted with an inductive approach using semistructured interviews with a cohort of PD and control participants who lived freely for several days in a home-like environment while continuously being sensed.ResultsThis study of 24 participants (12 with PD) found that it is broadly acceptable to use multimodal sensors including wrist-worn wearables, cameras, and other ambient sensors passively in free-living in PD. The sensor that was found to be the least acceptable was the wearable device. Suggested limitations on the platform for home deployment included camera-free time and space. Behavior changes were noted by the study participants, which may have related to being passively sensed. Recording high-resolution video in the home setting for limited periods of time was felt to be acceptable to all participants.ConclusionsThe results broaden the knowledge of what types of sensors are acceptable for use in research in PD and what potential limitations on these sensors should be considered in future work. The participants' reported behavior change in this study should inform future similar research design to take this factor into account. Collaborative research study design, involving people living with PD at every stage, is important to ensure that the technology is acceptable and that the data outcomes produced are ecologically valid and accurate.International registered report identifier (irrid)RR2-10.1136/bmjopen-2020-041303.
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Project description:A large number of older adults have physical and/or cognitive challenges and require help to manage everyday activities. Many older adults receive care from a spouse. Over the long term, this has adverse consequences for caregiver health and well-being. Less is known about the outcomes associated with the early transition to becoming a spousal caregiver. Nor is it clear how mild-cognitive decline worsens caregiver outcomes. The present study uses dyadic data from 588 couples in the National Social Life, Health, and Aging Project to compare mental and social well-being in marital partners who became a spousal caregiver versus those who remained noncaregivers or became caregivers for someone other than a spouse between 2010 and 2015. Cognitive ability was assessed using a validated version of the Montreal Cognitive Assessment. Moderated Actor-Partner Independence Models revealed that becoming a caregiver was associated with an increase in perceived stress in both men and women, and an increase in anxiety among men. Partners' cognitive limitations moderated, in a dose-dependent fashion, the association between becoming a caregiver and changes in well-being. Specifically, becoming a caregiver was associated with increased support from friends for wives at lower levels of husband's cognitive ability, and with increased anxiety for husbands at lower levels of wife's cognitive ability. Associations were independent of demographic characteristics and physical limitations. We discuss the value of using population-based samples to study the transition to caregiving and implications for interventions during the early transition to a caregiving role for even modestly cognitively impaired partners. (PsycINFO Database Record (c) 2020 APA, all rights reserved).
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Project description:The purpose of this study is to evaluate the relative risk of abnormal dopamine transporter (DAT) imaging for subjects with and without hyposmia and the feasibility of acquiring a large, community-based, 2-tiered biomarker assessment strategy to detect prodromal Parkinson disease (PD).In this observational study, individuals without a diagnosis of PD, recruited through 16 movement disorder clinics, underwent tier 1 assessments (olfactory testing, questionnaires). Tier 2 assessments (neurologic examination, DAT imaging, and other biomarker assessments) were completed by 303 subjects. The main outcome of the study is to compare age-expected [(123)I]?-CIT striatal binding ratio in hyposmic and normosmic subjects.Tier 1 assessments were mailed to 9,398 eligible subjects and returned by 4,999; 669 were hyposmic. Three hundred three subjects (203 hyposmic, 100 normosmic) completed baseline evaluations. DAT deficit was present in 11% of hyposmic subjects compared with 1% of normosmic subjects. Multiple logistic regression demonstrates hyposmia (odds ratio [OR] 12.4; 95% confidence interval [CI] 1.6, 96.1), male sex (OR 5.5; 95% CI 1.7, 17.2), and constipation (OR 4.3; 95% CI 1.6, 11.6) as factors predictive of DAT deficit. Combining multiple factors (hyposmia, male sex, and constipation) increased the percentage of subjects with a DAT deficit to >40%.Subjects with DAT deficit who do not meet criteria for a diagnosis of PD can be identified by olfactory testing. Sequential biomarker assessment may identify those at risk of PD. Selecting hyposmic individuals enriches the population for DAT deficit, and combining hyposmia with other potential risk factors (male sex, constipation) increases the percentage of subjects with a DAT deficit compatible with prodromal PD.
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Project description:BACKGROUND: While immunization is one of the most effective and successful public health interventions, there are still up to 30,000 deaths in major developed economies each year due to vaccine-preventable diseases, almost all in adults. In the UK, despite comparatively high vaccination rates among ≥65 s (73%) and, to a lesser extent, at-risk ≤65 s (52%) in 2013/2014, over 10,000 excess deaths were reported the previous influenza season. Adult tetanus vaccines are not routinely recommended in the UK, but may be overly administered. Social influences and risk-perceptions of diseases and vaccines are known to affect vaccine uptake. We aimed to explore the socio-psychological factors that drive adult vaccination in the UK, specifically influenza and tetanus, and to evaluate whether these factors are comparable between vaccines. METHODS: 20 in-depth, face-to-face interviews were conducted with members of the UK public who represented a range of socio-demographic characteristics associated with vaccination uptake. We employed qualitative interviewing approaches to reach a comprehensive understanding of the factors influencing adult vaccination decisions. Thematic analysis was used to analyze the data. RESULTS: Participants were classified according to their vaccination status as regular, intermittent and non-vaccinators for influenza, and preventative, injury-led, mixed (both preventative and injury-led) and as non-vaccinators for tetanus. We present our finding around five overarching themes: 1) perceived health and health behaviors; 2) knowledge; 3) vaccination influences; 4) disease appraisal; and 5) vaccination appraisal. CONCLUSION: The uptake of influenza and tetanus vaccines was largely driven by participants' risk perception of these diseases. The tetanus vaccine is perceived as safe and sufficiently tested, whereas the changing composition of the influenza vaccine is a cause of uncertainty and distrust. To maximize the public health impact of adult vaccines, policy should be better translated into high vaccination rates through evidence-based implementation approaches.
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Project description:BackgroundCOVID-19 is erupting globally. Mass quarantine had been implemented all around China which could influence the psychological status of patients with memory disorders and their caregivers.AimTo investigate the psychological impact of mass quarantine on patients with memory disorders and their caregivers in China.MethodsWe completed a cross-sectional study in 787 patients and their caregivers registered from 2010 to 2019 in Memory Clinic, The First Affiliated Hospital of Chongqing Medical University, by telephone interviews. The performance in neuropsychiatric symptoms (NPSs), sleep, nutrition, chronic diseases of patients, and the burden of care, anxiety and depression of caregivers was assessed by six assessment scales (MNA-SF, PSQI, NPI, RSS, PHQ-9 and GAD-7).ResultsOnly 68 (8.6%) patients worried about the outbreak of COVID-19. The prevalence of NPSs among all subjects was nearly 60.0%. Approximately 50.0% of the caregivers reported distress. More than 70.0% of patients remained stable in NPSs. However, anxiety, depression, aberrant motor disorder and delusion were exacerbated (22.9%, 18.6%, 17.1% and 16.8%, respectively). Appetite and eating disorder led alleviation rate by 25.8% while disappearing rate of agitation led by 5.8%. 7.5% of caregivers manifested depressive symptoms while 4.9% expressed anxiety symptoms, and 40.8% showed care burden. The coefficients of RSS and PHQ-9, RSS and GAD-7, RSS and NPI-D, PHQ-9 and GAD-7 were 0.7, 0.5, 0.5 and 0.6, respectively (p < 0.01).ConclusionChanges in NPSs during COVID-19 were observed in some patients with memory disorders and their caregivers, and adherence to medication contributed to the stabilization of NPSs.
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Project description:BackgroundVoluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying.Methods28 semi-structured interviews were conducted with 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically.ResultsParticipants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient's illness; progression or state of a patient's illness; patient's geographical location; and the capability and assertiveness of a patient and/or caregiver.ConclusionsInstitutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria's existing policy approach appears to preference institutional positions over patient's choice given existing power dynamics.
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Project description:PurposeDue to population aging, the number of older adults with cancer will double in the next 20 years. There is a gap in research about older adults who are the caregiver of a spouse with cancer. Therefore, this review seeks to answer the overarching research question: What is known about the association of providing care on Health-Related Quality of Life (HRQOL), psychological distress, burden, and positive aspects of caregiving for an older adult caregiver to a spouse with cancer?MethodsThis scoping review was guided by the framework of Arksey and O'Malley and refined by Levac et al. Comprehensive search strategies were conducted in Medline, Excerpta Medica Database (EMBASE), PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) from inception until April 15, 2021. Two independent reviewers screened abstracts, full text, and completed data abstraction. A gray literature search and two stakeholder consultations were conducted.ResultsA total of 8132 abstracts were screened, and 17 articles were included. All studies outlined caregivers provided preventive, instrumental, and protective care to a spouse in active cancer treatment. However, the time spent on caregiving was rarely examined (n = 4). Providing care had a negative association on HRQOL, perceived burden, and psychological distress outcomes. Five studies examined positive experiences of caregivers.ConclusionThe scoping review findings highlight the informal care provided by older adult caregivers to a spouse with cancer and how the care provided is associated with HRQOL, burden, psychological distress, and the positive aspects of caregiving.
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