Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden

2019 ◽  
Vol 49 (1) ◽  
pp. 52-56 ◽  
Author(s):  
Andrew P Allen ◽  
Maria M Buckley ◽  
John F Cryan ◽  
Aoife Ní Chorcoráin ◽  
Timothy G Dinan ◽  
...  

Abstract Objectives The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. Methods In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients’ age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. Results At baseline, patients’ age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Conclusions Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.

2021 ◽  
pp. 088307382110012
Author(s):  
Michelle Kowanda ◽  
Lindsey Cartner ◽  
Catherine Kentros ◽  
Alexa R. Geltzeiler ◽  
Kaitlyn E. Singer ◽  
...  

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers’ reported impact on their dependent’s services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported “feeling stressed but able to deal with problems as they arise,” and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.


2019 ◽  
Vol 23 (25) ◽  
pp. 1-98 ◽  
Author(s):  
Rod S Taylor ◽  
Sarah Walker ◽  
Oriana Ciani ◽  
Fiona Warren ◽  
Neil A Smart ◽  
...  

Background Current national and international guidelines on the management of heart failure (HF) recommend exercise-based cardiac rehabilitation (ExCR), but do not differentiate this recommendation according to patient subgroups. Objectives (1) To obtain definitive estimates of the impact of ExCR interventions compared with no exercise intervention (control) on mortality, hospitalisation, exercise capacity and health-related quality of life (HRQoL) in HF patients; (2) to determine the differential (subgroup) effects of ExCR in HF patients according to their age, sex, left ventricular ejection fraction, HF aetiology, New York Heart Association class and baseline exercise capacity; and (3) to assess whether or not the change in exercise capacity mediates for the impact of the ExCR on final outcomes (mortality, hospitalisation and HRQoL), and determine if this is an acceptable surrogate end point. Design This was an individual participant data (IPD) meta-analysis. Setting An international literature review. Participants HF patients in randomised controlled trials (RCTs) of ExCR. Interventions ExCR for at least 3 weeks compared with a no-exercise control, with 6 months’ follow-up. Main outcome measures All-cause and HF-specific mortality, all-cause and HF-specific hospitalisation, exercise capacity and HRQoL. Data sources IPD from eligible RCTs. Review methods RCTs from the Exercise Training Meta-Analysis of Trials for Chronic Heart Failure (ExTraMATCH/ExTraMATCH II) IPD meta-analysis and a 2014 Cochrane systematic review of ExCR (Taylor RS, Sagar VA, Davies EJ, Briscoe S, Coats AJ, Dalal H, et al. Exercise-based rehabilitation for heart failure. Cochrane Database Syst Rev 2014;4:CD003331). Results Out of the 23 eligible RCTs (4398 patients), 19 RCTs (3990 patients) contributed data to this IPD meta-analysis. There was a wide variation in exercise programme prescriptions across included studies. Compared with control, there was no statistically significant difference in pooled time-to-event estimates in favour of ExCR, although confidence intervals (CIs) were wide: all-cause mortality had a hazard ratio (HR) of 0.83 (95% CI 0.67 to 1.04); HF-related mortality had a HR of 0.84 (95% CI 0.49 to 1.46); all-cause hospitalisation had a HR of 0.90 (95% CI 0.76 to 1.06); and HF-related hospitalisation had a HR of 0.98 (95% CI 0.72 to 1.35). There was a statistically significant difference in favour of ExCR for exercise capacity and HRQoL. Compared with the control, improvements were seen in the 6-minute walk test (6MWT) (mean 21.0 m, 95% CI 1.57 to 40.4 m) and Minnesota Living with Heart Failure Questionnaire score (mean –5.94, 95% CI –1.0 to –10.9; lower scores indicate improved HRQoL) at 12 months’ follow-up. No strong evidence for differential intervention effects across patient characteristics was found for any outcomes. Moderate to good levels of correlation (R 2 trial > 50% and p > 0.50) between peak oxygen uptake (VO2peak) or the 6MWT with mortality and HRQoL were seen. The estimated surrogate threshold effect was an increase of 1.6 to 4.6 ml/kg/minute for VO2peak. Limitations There was a lack of consistency in how included RCTs defined and collected the outcomes: it was not possible to obtain IPD from all includable trials for all outcomes and patient-level data on exercise adherence was not sought. Conclusions In comparison with the no-exercise control, participation in ExCR improved the exercise and HRQoL in HF patients, but appeared to have no effect on their mortality or hospitalisation. No strong evidence was found of differential intervention effects of ExCR across patient characteristics. VO2peak and 6MWT may be suitable surrogate end points for the treatment effect of ExCR on mortality and HRQoL in HF. Future studies should aim to achieve a consensus on the definition of outcomes and promote reporting of a core set of HF data. The research team also seeks to extend current policies to encourage study authors to allow access to RCT data for the purpose of meta-analysis. Study registration This study is registered as PROSPERO CRD42014007170. Funding The National Institute for Health Research Health Technology Assessment programme.


2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S016-S017
Author(s):  
Q Zhang ◽  
L Fachal ◽  
R Shawky ◽  
M Parkes ◽  
C Anderson ◽  
...  

Abstract Background Patients with Crohn’s disease (CD) can develop complications including stricturing and penetrating disease [1, 2]. Although reliable baseline predictors of disease progression are urgently needed to inform management strategies, few studies have comprehensively explored the phenotypic and genetic determinants of disease progression in a sufficiently powered cohort. Methods We used data from 13,926 patients with CD in the UK IBD BioResource to investigate the effects of clinical phenotypes and genetics on CD progression. Median follow-up was 10.6 years and total follow-up was 193,033 patient-years. We applied the Montreal classification system to define disease as B1 (inflammatory), B2 (stricturing) and B3 (penetrating). Patients with B2 or B3 disease (N = 5,185) were compared to patients with B1 disease (N = 8,471) in a multivariate model fitted with both phenotype data and a polygenic score that we developed. Associations with q-values (false discovery rate adjusted p-values) less than 0.05 were defined as statistically significant. Results CD progression occurred over time from diagnosis (Figure 1). Consistent with previous findings, we confirmed factors including smoking, disease location and perianal disease were associated with disease progression [3] (Table 1). The impact of a genetic influence on disease progression was confirmed and shown to be independent of genetic effects on disease location [4]. Early prescription of medications showed a protective effect on disease progression: Infliximab, adalimumab and thiopurines significantly reduced the chance of B2/B3 progression when prescribed within two years of diagnosis. Additionally, we observed a decreased progression to B2/B3 disease in patients diagnosed recently (between 2012–2020) compared to those diagnosed before 2012. This finding persisted after conditioning on exposure to biologics and correcting for follow-up time and interval to first thiopurine prescription, and thus may be indicative of other improvements in standards of care in recent years. Conclusion Using a large, well-characterised cohort we confirm the importance of disease location, smoking status and genetics on disease progression. We highlight the positive impact of early medication prescription on disease progression and discover an independent signal relating to potential improvements in the standard of care in CD over time. These results create the framework for reliable predictors of CD progression that may better guide future CD management strategies. References


Author(s):  
Saket Girotra ◽  
Xin Lu ◽  
Mary Vaughan-Sarrazin ◽  
Joana Popescu ◽  
Phillip Horwitz ◽  
...  

Background Hospital volume has been widely embraced as a proxy for hospital quality; little attention has been focused on an alternative quality metric - hospital specialization. While specialization occurs on a continuum, prior studies of specialization have largely focused on a small number of highly specialized ( specialty) hospitals. Studies on the broad relationship between hospital specialization and outcomes after cardiac surgery are lacking. Methods We used Medicare data to identify 705084 patients who underwent CABG at 1130 hospitals during 2001-2005. We stratified hospitals into quintiles of cardiac specialization based on the relative proportion of all Medicare discharges at each hospital classified as Major Disease Category 5 - diseases of cardiovascular system. We obtained hospital characteristics from the 2001-2005 AHA survey. We used multivariable hierarchical regression to examine the association of cardiac specialization with risk of 30-day mortality adjusting for patient characteristics & CABG volume. Results The mean age of CABG recipients was 75 years, 65% were men, 92% were white. Patient demographic & comorbidity was generally similar between quintiles of hospital specialization. The median cardiac specialization was 29.7% for all hospitals (mean cardiac specialization in lowest quintile of hospital specialization was 23.2% vs. 45.2% for highest quintile). Compared to the highest quintile, hospitals in the lowest quintile had fewer beds (296 vs. 314, p < .01), were less likely to be teaching hospitals (22% vs. 26%, p < .01) and had lower CABG volume (63 vs. 239, p < .01). They also admitted less transfer patients (8.3% vs. 17.5%, p < .01) and performed less concurrent valve surgery (13% vs. 15%, p < .01). Unadjusted 30-day mortality was higher at least specialized hospitals compared to most specialized hospitals (4.9% vs. 4.3%, p < .01). Odds of mortality remained higher at these hospitals after adjustment for patient characteristics (OR 1.15 95% CI [1.07 - 1.24] p trend < .01) but was similar after further adjustment for CABG volume (OR 1.05 95% CI [0.97 - 1.15] p trend 0.65). Conclusion After accounting for hospital volume, hospitals with greater cardiac specialization did not have better CABG outcomes than less specialized hospitals.


2010 ◽  
Vol 24 (9) ◽  
pp. 537-542 ◽  
Author(s):  
Paul Marotta ◽  
Kurt Lucas

BACKGROUND: The Canadian Association for the Study of the Liver, and The Association of Medical Microbiology and Infectious Diseases Canada, jointly developed the Canadian Chronic Hepatitis B (HBV) Consensus Guidelines to assist practitioners involved in the management of this complex disease. These guidelines were published inThe Canadian Journal of Gastroenterologyin June 2007 and distributed to all Canadian gastroenterologists and hepatologists.OBJECTIVE: To assess the degree to which Canadian specialist physicians were able to incorporate the recommendations from the Canadian HBV Consensus Guidelines into their daily practice.METHODS: A 30 min telephone survey probing the management strategies of 80 key HBV specialists was completed on three occasions, eight months apart, to longitudinally assess the impact of the Canadian HBV Consensus Guidelines on the management of HBV. The questionnaire detailed HBV practice patterns, the impact of the Canadian HBV Consensus Guidelines on clinical practice and HBV management.RESULTS: The majority of specialists incorporated many of the published recommendations outlined in the Canadian HBV Consensus Guidelines into their daily practice for patients with HBV. However, because public drug coverage is a major hurdle in the management of HBV, patients are provided markedly different HBV treatments depending on whether they have public or private drug insurance coverage.CONCLUSIONS: The management of HBV is growing in complexity and continues to evolve rapidly. The Canadian HBV Consensus Guidelines have served as a valuable tool for many physicians in the management of HBV. However, effective treatment algorithms continue to be rendered irrelevant by restrictive drug coverage issues. Coverage for effective therapies and, therefore, management of HBV, differs widely across Canada depending on therapy reimbursement criteria rather than patient characteristics.


2019 ◽  
Vol 6 ◽  
pp. 205435811986194
Author(s):  
Farah Ladak ◽  
Pietro Ravani ◽  
Matthew J. Oliver ◽  
Fareed Kamar ◽  
Alix Clarke ◽  
...  

Background: Clinical practice guidelines recommend arteriovenous fistulas as the preferred form of vascular access for hemodialysis. However, some studies have suggested that older age is associated with poorer fistula outcomes. Objective: We assessed the impact of age on the outcomes of fistula creation and access-related procedures. Design: This was a prospective cohort study using data collected as part of the Dialysis Measurement Analysis and Reporting (DMAR) system. Setting: Participating Canadian dialysis programs, including Southern Alberta Renal Program, Manitoba Renal Program, Sunnybrook Health Sciences Centre (Toronto, Ontario), London Health Sciences Centre (London, Ontario), and The Ottawa Hospital (Ottawa, Ontario). Patients: Incident hemodialysis patients aged 18 years and older who started dialysis between January 1, 2004, and May 31, 2012. Measurements: The primary outcome was the proportion of all first fistula attempts that resulted in catheter-free fistula use, defined as independent use of a fistula for hemodialysis (ie, no catheter in place). Secondary outcomes included the time to catheter-free fistula use among patients with a fistula creation attempt, total number of days of catheter-free fistula use, and the proportion of a patient’s hemodialysis career spent with an independently functioning fistula (ie, catheter-free fistula use). Methods: We compared patient characteristics by age group, using t tests or Wilcoxon rank sum tests, and chi-square or Fisher exact tests, as appropriate. Logistic and fractional logistic regression were used to estimate the odds of achieving catheter-free fistula use by age group and the proportion of dialysis time spent catheter-free, respectively. Results: A total of 1091 patients met our inclusion criteria (567 age ≥ 65; 524 age < 65). Only 57% of first fistula attempts resulted in catheter-free fistula use irrespective of age (adjusted odds ratio [OR]≥65vs<65: 1.01; P = .93). The median time from hemodialysis start to catheter-free use of the first fistula did not differ by age when grouped into fistulas attempted pre- and post-dialysis initiation. The adjusted rates of access-related procedures were comparable (incidence rate ratio [IRR]≥65vs<65: 0.95; P = .32). The median percentage of follow-up time spent catheter-free was similar and low in patients who attempted fistulas (<65 years: 19% vs ≥65 years: 21%; P = .85). Limitations: The relatively short follow-up time may have underestimated the benefits of fistula creation and the observational study design precludes inferences about causality. Conclusions: In our study, older patients who underwent a fistula attempt were just as likely as younger patients to achieve catheter-free fistula use, within a similar time frame, and while requiring a similar number of access procedures. However, the minority of dialysis time was spent catheter-free.


Resuscitation ◽  
2010 ◽  
Vol 81 (1) ◽  
pp. 31-35 ◽  
Author(s):  
Paolo Calzavacca ◽  
Elisa Licari ◽  
Augustine Tee ◽  
Moritoki Egi ◽  
Andrew Downey ◽  
...  

2019 ◽  
Vol 22 (1) ◽  
pp. 30-35
Author(s):  
Azmal Kabir Sarker ◽  
Faria Nasreen ◽  
Lutfun Nisa ◽  
Raihan Hussain

Objective: Gated SPECT myocardial perfusion imaging (GSMPI) is a preferred modality for non invasive assessment following coronary revascularization (CR) of both symptomatic and asymptomatic patients. This study was conducted to observe the impact of GSMPI results on further management of patients who after CR had underwent GSMPI at National Institute of Nuclear Medicine and Allied Sciences (NINMAS). Patients and methods: Record files of GSMPI of all patients who underwent GSMPI over a period of 31 months from June 2011 to December 2013 at NINMAS for assessment of perfusion after CR were selected from the Nuclear Cardiology Divisional archive of patient studies in order to retrieve their clinical and demographic data including the contact numbers. The results of GSMPI scan were categorized as normal scan (NS) and perfusion defect (PD) which included reversible and/or fixed PD. All the contact numbers were called up by a nuclear medicine physician who conducted a semi-structured telephonic interview either with the patients or with a concerned family member. Management strategies adopted after GSMPI were categorized as conservative (CM) and interventional (IM).Cramer’s V (φc) test were done to find strength of relation among patients’ symptoms, scan findings and management strategies. Results: Follow up data of 55 patients (54M, 1F) among 68 (66M, 2F) were available who underwent MPI for the purpose of post CR assessment. MPI was performed in between six months to 13 years after CR (mean 43.8 ± 48.2 months). Categorically 33 patients had percutaneous transluminal coronary angioplasty (PTCA) with stent, 16 patients had coronary artery by-pass grafting (CABG) and 6 patients had both CABG & PTCA. There were 38PD (27symptomatic) and 17NS(12 symptomatic).Since all patients (n=12) who had fixed PD were symptomatic, a strong relation was found between being symptomatic and fixed perfusion defect (φc> 0.3). Symptoms were found to be weakly related with reversible PD i.e. ischemia (φc< 0.2). Management strategies were conservative in 44 (30 symptomatic and 28 PD) and interventional in 11 (nine symptomatic and 10 PD). Management strategies were found to be weakly related with symptoms (φc< 0.2) but moderately related with perfusion status (φc = 0.24). Conclusions: While symptoms were observed to be poorly related with perfusion status following CR, GSMPI guided to choose further interventional management strategies with rationality in lower proportion of patients. Bangladesh J. Nuclear Med. 22(1): 30-35, Jan 2019  


2020 ◽  
Author(s):  
Sylvie Arlotto ◽  
Stéphanie Gentile ◽  
Anne Claire Durand ◽  
Sylvie Bonin-Guillaume

Abstract Background. Informal care provided by family caregivers to old persons is associated with a high risk of burden and poor health status. This study aimed to analyze the impact of Personalized Social Support (PSS) for non-dependent old persons living in the community on caregiver burden, satisfaction, and frailty. Methods. This non-interventional longitudinal study was performed in the southeast of France: old persons asking for PSS (>70 years of age, with no disability and no severe chronic disease, living at home) and their caregivers were included with a 6-month follow-up. Eligible dyads were visited at home by social workers. Caregiver burden was assessed with Mini-Zarit and frailty status with FiND (Frail Non-Disabled).Results. 876 dyads were eligible for PSS. Old persons were 82.2 ± 5.8 years old and 77.6% were women. Most caregivers were women (64.5%). Most caregivers were the children of the old person (61%), the rest were mostly spouses. Nearly 64% of old persons were frail and 38% were highly dependent. Follow-up was conducted for 686 dyads (78.3%). Of these, only 569 had PSS. The PSS was mainly for housework and meal preparation. At the time of follow-up, 53% of the caregivers for whom the old person had PSS had less difficulty helping their old person. Two-thirds (61.5%) of caregivers were fully satisfied with the PSS. Whether or not they had received the PSS, 73% of caregivers had reduced burden at 6 months, only 6% still had a high burden, 17% were less frail, and 18% felt healthier than at the time of inclusion.Conclusions. Our study highlights that non-dependent old person’s caregivers also experience burden. Implementing social support for activities of daily living had a major impact on their burden but not on their level of frailty. This means that the determinants of caregiver frailty are more complex and further studies are needed.


2009 ◽  
Vol 101 (05) ◽  
pp. 878-885 ◽  
Author(s):  
Joel Gore ◽  
George Reed ◽  
Darleen Lessard ◽  
Luigi Pacifico ◽  
Cathy Emery ◽  
...  

SummaryBleeding is the most frequent complication of antithrombotic therapy for venous thromboembolism (VTE). However, little attention has been paid to the impact of bleeding after VTE in the community setting. The purpose of this investigation was to describe the incidence rate of bleeding after VTE, to characterize patients most at risk for bleeding, and to assess the impact of bleeding on rates of recurrent VTE and all-cause mortality. The medical records of residents of the Worcester (MA, USA) metropolitan area diagnosed with ICD-9 codes consistent with potential VTE during 1999, 2001, and 2003 were individually validated and reviewed by trained data abstracters. Clinical characteristics, acute treatment, and outcomes (including VTE recurrence rates, bleeding rates, and mortality) over follow-up (up to 3 years maximum) were evaluated. Bleeding occurred in 228 (12%) of 1,897 patients with VTE during our follow-up. Of these, 115 (58.8%) had evidence of early bleeding occurring within 30 days of VTE diagnosis. Patient characteristics associated with bleeding included impaired renal function and recent trauma. Other than a history of prior VTE, the occurrence of bleeding was the strongest predictor of recurrent VTE (hazard ratio [HR] 2.18; 95% confidence interval [CI] 1.54–3.09) and was also a predictor of total mortality (HR 1.97; 95%CI 1.57–2.47). The occur-rence of bleeding following VTE is associated with an increased risk of recurrent VTE and mortality. Future study of antithrombotic strategies for VTE should be informed by this finding. Advances that result in decreased bleeding rates may paradoxically decrease the risk of VTE recurrence.


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