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Caregiver burden

Sara J Czaja, Chin Chin Lee, Dolores Perdomo, David Loewenstein, Marina Bravo, Jerad H Moxley PhD, Richard Schulz
Background and Objectives: Family caregivers (CGs) are critical to the provision of long-term services and support for older adults. Numerous intervention programs to alleviate CG distress have been developed and evaluated yet few have been implemented in community settings. This paper describes and presents outcomes from Community REACH, a community implementation of the evidence-based Resources for Enhancing Alzheimer's Caregiver Health (REACH) II program. Research Design and Methods: Community REACH involved a partnership between REACH II investigators and United HomeCare Services (UHCS), a nonprofit home health organization that provides home health, personal care, companion, and respite services...
March 19, 2018: Gerontologist
Wies Maarse, Chantal W B Boonacker, Henriette F N Swanenburg de Veye, Moshe Kon, Corstiaan C Breugem, Aebele B Mink van der Molen, Johannes J M van Delden
OBJECTIVES: The prenatal diagnosis of oral clefts (OCs) by ultrasound can pose an ethical dilemma. The purpose of this study was to obtain insight into the psychosocial and moral considerations of prospective parents concerning OCs, the burden of OCs and parents' attitude toward possible termination of pregnancy (TOP) in order to improve counseling in the future. DESIGN: Between August 2011 and August 2014, a prospective cohort questionnaire study was administered...
January 1, 2018: Cleft Palate-craniofacial Journal
Ngoc Huong Lien Ha, Mei Sian Chong, Robin Wai Munn Choo, Wai Jia Tam, Philip Lin Kiat Yap
BACKGROUND: Although foreign domestic workers (FDWs) play a significant role in caring for frail seniors in Singapore and are vulnerable to caregiving burden, there has been little research conducted hitherto. We explored caregiver burden and its determinants in this study. METHODS: FDWs (N = 221, M age = 32.3, SD = 6.23) recruited from a hospital geriatric unit completed the Zarit Burden Interview (ZBI) administered in English, Bahasa Melayu, or Burmese. Univariate and multivariate regression were employed to investigate factors influencing caregiving burden in FDWs...
March 21, 2018: International Psychogeriatrics
Fabio Cocco, Guglielmo Campus, Laura Strohmenger, Viviana Cortesi Ardizzone, Maria Grazia Cagetti
BACKGROUND: This survey aims to evaluate the prevalence and severity of tooth loss in the Italian elderly population living in nursing homes and to associate the oral data with demographic, socioeconomic factors, the Mini-Mental State Examination (MMSE), the Body Mass Index (BMI) and the Mini Nutritional Assessment (MNA) scores. METHODS: A cluster sample method was performed using each nursing home as a cluster. Twenty-three nursing homes located in the five areas of the Italy (North-West, North-East, Centre, South and Islands) were selected...
March 20, 2018: BMC Geriatrics
Maria Jose Catalan, Jose Antonio Molina-Arjona, Pablo Mir, Esther Cubo, Jose Matias Arbelo, Pablo Martinez-Martin
Impulse control behaviors are a frequent comorbidity for patients with Parkinson's disease (PD). The objective of the present study was to evaluate the effectiveness levodopa-carbidopa intestinal gel (LCIG) therapy on impulse control disorders (ICDs) in patients with advanced PD. We conducted a multicenter, observational, and prospective (6 months follow-up) study that included consecutive PD patients assigned to LCIG through routine medical practice. Patients completed visits at baseline, 1, 3, and 6 months after percutaneous endoscopic gastrostomy procedure...
March 20, 2018: Journal of Neurology
Selene Valero-Moreno, Marián Pérez-Marín, Inmaculada Montoya-Castilla, Silvia Castillo-Corullón, Alvar Ramírez-Aguilar, Amparo Escribano-Montaner
INTRODUCTION: Adolescents with asthma face problems inherent to this stage in their development, to which the challenges of taking over control of their disease, complying with a daily treatment and regular medical followup are added. Any rejection generated by this may lead to treatment non-adherence and poor asthma control, which brings about problems in family dynamics, made worse by the stress or the emotional distress that this situation causes in caregivers. OBJECTIVE: Identify adjustment profiles and predictors of risk for the well-being of caregivers of pediatric patients with bronchial asthma...
April 1, 2018: Archivos Argentinos de Pediatría
Xin Xu, Cheuk Ni Kan, Tien Yin Wong, Ching-Yu Cheng, M Kamran Ikram, Christopher Li-Hsian Chen, Narayanaswamy Venketasubramanian
OBJECTIVE: Sleep disturbances were found to be associated with more behavioral and psychological symptoms (BPS) in early patients with Alzheimer's disease (AD). However, data on preclinical stages of dementia are lacking. Hence, the present study sought to investigate the association between sleep disturbances and BPS in dementia-free elderly with varying severity of cognitive impairment in an Asian sample. METHODS: Community-living elderly were recruited and administered a comprehensive cognitive battery (vascular dementia battery [VDB]) and the Neuropsychiatric Inventory to assess symptoms of sleep disturbances and BPS...
January 1, 2018: Journal of Geriatric Psychiatry and Neurology
Junhong Yu, Philip Yap, Tau Ming Liew
OBJECTIVES: Using a sample of dementia caregivers, we compared the diagnostic utility of the various short versions of the Zarit Burden Interview (ZBI) with the original scale to identify the most optimal one. Next, we established externally validated cutoffs for the various ZBI versions using probable depression cases as a reference standard. METHODS: Caregivers (N = 394; 236 males; Agemean = 56 years) were administered the ZBI and a self-report depression measure...
March 19, 2018: Aging & Mental Health
Angela Ju, Mark Unruh, Sara Davison, Juan Dapueto, Mary Amanda Dew, Richard Fluck, Michael Germain, Sarbjit V Jassal, Gregorio Obrador, Donal O'Donoghue, Michelle A Josephson, Jonathan C Craig, Andrea Viecelli, Emma O'Lone, Camilla S Hanson, Braden Manns, Benedicte Sautenet, Martin Howell, Bharathi Reddy, Caroline Wilkie, Claudia Rutherford, Allison Tong
Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions...
March 15, 2018: American Journal of Kidney Diseases: the Official Journal of the National Kidney Foundation
Lindsay Bonsignore, Nicholas Bloom, Karen Steinhauser, Reginald Nichols, Todd Allen, Martha Twaddle, Janet Bull
CONTEXT: The impact of telehealth and remote patient monitoring have not been well established in palliative care populations in rural communities. OBJECTIVES: The objective of this study was to 1) Describe a telehealth palliative care program using the TapCloud remote patient monitoring application and videoconferencing, 2) Evaluate the feasibility, usability, and acceptability of a telehealth system in palliative care, and 3) Use a quality data assessment collection tool (QDACT) in addition to TapCloud ratings of symptom burden and hospice transitions...
March 15, 2018: Journal of Pain and Symptom Management
Emily E Adams, Morgan L Wrightson
The present study aims to synthesize current evidence on the impact of LVAD implantation on quality of life. Current evidence was systematically reviewed to obtain relevant quantitative and qualitative articles published after 2007. Sandelowski's recommended steps for meta-summary were used to analyze the 19 studies that met the inclusion criteria. LVADs can improve HF symptoms and some aspects of QoL. Emotional and physical adaptation involves many changes and learning to manage the device takes time. Functional limitations still exist and patients still lack independence...
March 15, 2018: Heart & Lung: the Journal of Critical Care
Cristan Farmer, Margo Thienemann, Collin Leibold, Gabrielle Kamalani, Bethany Sauls, Jennifer Frankovich
Objectives: To establish the psychometric properties of the Caregiver Burden Inventory (CBI) in patients with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which is characterized by the abrupt onset of obsessive-compulsive disorder and/or restricted eating and at least two additional psychiatric symptoms. Parents of patients with PANS have reported high caregiver burden. However, no validated instrument of burden exists for this population. Methods: Study took place at a community-based PANS clinic where the CBI is administered as part of routine clinical care...
March 14, 2018: Journal of Pediatric Psychology
Lyndsey M Miller, Carol J Whitlatch, Christopher S Lee, Michael S Caserta
Background and Objectives: Persons with dementia (PWDs) often place greater importance on their care values (i.e., maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g., care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception...
March 12, 2018: Gerontologist
Gunta Laizane, Anda Kivite, Inese Stars, Marita Cikovska, Ilze Grope, Dace Gardovska
BACKGROUND: Rotavirus is the leading cause of severe diarrhea in young children and infants worldwide, representing a heavy public health burden. Limited information is available regarding the impact of rotavirus gastroenteritis on the quality of life of affected children and their families. The objectives of study were to estimate the impact of rotavirus infection on health-related quality of life (HRQL), to assess the social and emotional effects on the families of affected children...
March 15, 2018: BMC Pediatrics
Patricia C Griffiths, Mariya Kovaleva, Melinda Higgins, Ashley H Langston, Kenneth Hepburn
INTRODUCTION: This study examined the feasibility and efficacy of Tele-Savvy, an online version of the Savvy Caregiver Program, a psychoeducation program for caregivers caring for a person with dementia. METHODS: A convenience sample of 22 caregivers from the Atlanta VA and 42 caregivers from 14 different states enrolled in Tele-Savvy. Pre- and post-program evaluations assessed caregiver burden, caregiver competency, and frequency of behavioral and psychological symptoms of dementia (BPSD)...
January 1, 2018: American Journal of Alzheimer's Disease and Other Dementias
Mohammed Saji Salahudeen, Prasad S Nishtala
OBJECTIVE: To summarize studies that used the international Resident Assessment home care instrument (interRAI HC) to examine study outcomes for older people. METHODS: A comprehensive systematic search was performed to identify relevant studies, using five databases from 1990 until October 2016. The Cochrane Risk-Bias assessment tool and Newcastle-Ottawa Scale was used to assess the quality of RCTs and non-RCTs, respectively. RESULTS: Based on the full-text analysis, 40 studies met the inclusion criteria out of 506 total records...
March 2, 2018: Clinical Gerontologist
John W Wax, Amy W An, Nicole Kosier, Timothy E Quill
Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support...
March 2018: Journal of the American Geriatrics Society
Kathleen Oare Lindell, Mehdi Nouraie, Melinda J Klesen, Sara Klein, Kevin F Gibson, Daniel J Kass, Margaret Quinn Rosenzweig
Introduction: Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses...
2018: BMJ Open Respiratory Research
Jesús Rivera-Navarro, Rosa Sepúlveda, Israel Contador, Bernardino Fernández-Calvo, Francisco Ramos, Miguel Ángel Tola-Arribas, Miguel Goñi
The objective of our study is to validate the Caregiver Abuse Screen (CASE) as an instrument for detecting the maltreatment of people with dementia in Spain. In total, 326 informal caregivers of people with different types of dementia were interviewed in several cities in northwest Spain. The caregivers were selected from outpatient neurology clinics and associations of relatives of people with Alzheimer's disease and other dementias. A comprehensive sociodemographic questionnaire was administered to all participants, and several standardized scales were used to assess burden, anxiety, depression, social support and resilience...
March 2018: European Journal of Ageing
Rita S Suri, Alan S Kliger
The use of frequent hemodialysis (HD) is growing, with the hope of improving outcomes in end-stage renal disease. We narratively review the three randomized trials, 15 comparative cohort studies, and several case series of frequent HD that empirically demonstrate the potential efficacy and adverse effects of these regimens. Taken together, the randomized studies suggest frequent HD may result in left ventricular mass regression. This effect is most pronounced when left ventricular mass is abnormal, but attenuated by significant residual urine output...
March 12, 2018: Seminars in Dialysis
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