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Distress in dementia care

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https://www.readbyqxmd.com/read/28733181/caring-for-a-person-with-dementia-on-the-margins-of-long-term-care-a-perspective-on-burden-from-8-european-countries
#1
Caroline Sutcliffe, Clarissa Giebel, Michel Bleijlevens, Connie Lethin, Minna Stolt, Kai Saks, Maria E Soto, Gabriele Meyer, Adelaida Zabalegui, Helen Chester, David Challis
OBJECTIVES: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers...
July 18, 2017: Journal of the American Medical Directors Association
https://www.readbyqxmd.com/read/28713073/dementia-friendly-interventions-to-improve-the-care-of-people-living-with-dementia-admitted-to-hospitals-a-realist-review
#2
Melanie Handley, Frances Bunn, Claire Goodman
OBJECTIVES: To identify features of programmes and approaches to make healthcare delivery in secondary healthcare settings more dementia-friendly, providing a context-relevant understanding of how interventions achieve outcomes for people living with dementia. DESIGN: A realist review conducted in three phases: (1) stakeholder interviews and scoping of the literature to develop an initial programme theory for providing effective dementia care; (2) structured retrieval and extraction of evidence; and (3) analysis and synthesis to build and refine the programme theory...
July 16, 2017: BMJ Open
https://www.readbyqxmd.com/read/28691861/a-virtual-reality-intervention-to-improve-the-understanding-and-empathy-for-people-with-dementia-in-informal-caregivers-results-of-a-pilot-study
#3
Eva M Wijma, Marjolein A Veerbeek, Marleen Prins, Anne Margriet Pot, Bernadette M Willemse
OBJECTIVE: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted...
July 10, 2017: Aging & Mental Health
https://www.readbyqxmd.com/read/28689469/a-mindfulness-program-manual-for-people-with-dementia
#4
Joanne Chan, Anna Churcher Clarke, Lindsay Royan, Joshua Stott, Aimee Spector
This article describes a 10-session group-based Mindfulness Program for people with mild to moderate dementia. It aims to equip people with dementia with skills to manage psychological distress, with support from carers. The Mindfulness Program was developed through reviews of existing literature, consultation with experts, and a focus group with people with dementia. In a randomized controlled feasibility and pilot trial with people with mild to moderate dementia in care homes, it was found to significantly increase quality of life...
July 1, 2017: Behavior Modification
https://www.readbyqxmd.com/read/28673257/experiences-of-end-of-life-amongst-family-carers-of-people-with-advanced-dementia-longitudinal-cohort-study-with-mixed-methods
#5
Kirsten J Moore, Sarah Davis, Anna Gola, Jane Harrington, Nuriye Kupeli, Victoria Vickerstaff, Michael King, Gerard Leavey, Irwin Nazareth, Louise Jones, Elizabeth L Sampson
BACKGROUND: Many studies have examined the mental health of carers of people with dementia. Few have examined their experiences in the advanced stages of disease and into bereavement. We aimed to understand the experiences of carers during advanced dementia exploring the links between mental health and experiences of end of life care. METHODS: Mixed methods longitudinal cohort study. Thirty-five family carers of people with advanced dementia (6 at home, 29 in care homes) were recruited and assessed monthly for up to nine months or until the person with dementia died, then at two and seven months into bereavement...
July 3, 2017: BMC Geriatrics
https://www.readbyqxmd.com/read/28645985/a-study-protocol-for-a-randomised-controlled-trial-of-an-interactive-web-based-intervention-cancercope
#6
Suzanne K Chambers, Lee Ritterband, Frances Thorndike, Lisa Nielsen, Joanne F Aitken, Samantha Clutton, Paul Scuffham, Philippa Youl, Bronwyn Morris, Peter Baade, Jeffrey Dunn
INTRODUCTION: Approximately 35% of patients with cancer experience clinically significant distress, and unmet psychological supportive care needs are prevalent. This study describes the protocol for a randomised controlled trial (RCT) to assess the efficacy and cost-effectiveness of an internet-based psychological intervention for distressed patients with cancer. METHODS AND ANALYSIS: In phase I, the intervention was developed on an interactive web platform and pilot tested for acceptability using a qualitative methodology with 21 patients with cancer...
June 23, 2017: BMJ Open
https://www.readbyqxmd.com/read/28539958/cognitive-impairment-and-psychological-distress-at-discharge-from-intensive-care-unit
#7
Chi Ryang Chung, Hye Jin Yoo, Jinkyeong Park, Seunghyong Ryu
This study aimed to investigate cognitive impairment and psychological distress of critically ill patients at discharge from intensive care unit (ICU). This study included 30 critically ill patients who had neither pre-existing dementia nor ongoing delirium. At ICU discharge, they performed a screening test for cognitive impairment (Mini-Cog test) and completed questionnaires for depression (Patient Health Questionnaire-2, PHQ-2) and for 4 stressful experiences during ICU stay including nightmares, severe anxiety or panic, severe pain, and trouble to breathe or feeling of suffocation (Post-Traumatic Stress Syndrome 14-Question Inventory, PTSS-14 Part A)...
May 2017: Psychiatry Investigation
https://www.readbyqxmd.com/read/28535075/variance-in-caregiver-burden-predicted-by-patient-behaviors-versus-neuropsychological-profile
#8
Camille Branger, Joe Enright, Megan E O'Connell, Debra G Morgan
Informal caregivers provide the majority of care to persons with dementia; efforts to support caregivers' well-being are increasingly important in the context of limited formal healthcare supports. Informal caregiving is commonly associated with caregiver burden and burden may depend upon patient characteristics including neuropsychological profile, dementia severity, and dementia etiology. This study investigated predictors of caregiver burden in a sample of 213 Memory Clinic patients diagnosed with dementia and whose caregivers provided collateral information...
May 23, 2017: Applied Neuropsychology. Adult
https://www.readbyqxmd.com/read/28509367/measuring-change-in-perceived-well-being-of-family-caregivers-validation-of-the-spanish-version-of-the-perceived-change-index-pci-s-in-chilean-dementia-caregivers
#9
José M Aravena, Cecilia Albala, Laura N Gitlin
OBJECTIVE: Few instruments evaluate family caregiver perceptions of challenges caring for persons with dementia and improvement or worsening in these areas. To address this measurement gap, we examine psychometric properties of a Spanish version of the 13-item Perceived Change Index (PCI-S), originally validated with English-speaking caregivers. METHODS: Cross-sectional study with 94 caregivers of persons with mild to moderate dementia in Chile. Interviews included caregiver demographics, burden, health perception, distress with behaviours, dementia severity, behavioural symptoms and functionality...
May 16, 2017: International Journal of Geriatric Psychiatry
https://www.readbyqxmd.com/read/28488889/experiencing-place-younger-people-with-dementia-facing-aged-care
#10
Sally Rimkeit, Jacqueline McIntosh
OBJECTIVES: There are currently few facilities for people with younger onset dementia and they are placed by default into dementia care facilities designed for the elderly. There is limited understanding of how people with younger onset dementia and their care givers anticipate or experience aged residential care. This qualitative study has used semi-structured interviews to give voice to the opinions and perspectives of nine people with younger onset dementia and 11 care givers. METHOD: Interpretative Phenomenological Analysis was used for idiographic analysis, allowing examination of the lived experience of younger people with dementia and an iterative exploration of what their experiences mean...
May 1, 2017: Australasian Psychiatry: Bulletin of Royal Australian and New Zealand College of Psychiatrists
https://www.readbyqxmd.com/read/28483100/caregiver-burden-in-alzheimer-type-dementia-and-psychosis-a-comparative-study-from-india
#11
P Sinha, N G Desai, O Prakash, S Kushwaha, C B Tripathi
BACKGROUND: Caregiver burden in dementia is an important area of research. Providing care for a relative can be a potent source of chronic stress and can have deleterious consequences for both the physical and emotional health of caregivers. This study aims to evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer's dementia. METHODS: Thirty-two caregiver-patient dyads of Alzheimer-type dementia were compared with thirty-two caregiver-patient dyads of psychosis...
April 2017: Asian Journal of Psychiatry
https://www.readbyqxmd.com/read/28463027/the-views-of-domestic-staff-and-porters-when-supporting-patients-with-dementia-in-the-acute-hospital-an-exploratory-qualitative-study
#12
Caroline Ashton, Jill Manthorpe
There is increasing recognition that very many hospital patients have dementia but there are many concerns about the quality of care and support they receive. Consequently there have been numerous calls for hospital staff to have dementia training. While cleaning or domestic staff and porters form considerable parts of the hospital workforce they are infrequently considered in discussions of dementia care training and practice. This exploratory study aimed to investigate the experiences of domestic staff and porters working in an acute hospital setting who are in contact regularly with patients with dementia...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/28433550/evaluation-of-a-telephone-delivered-community-based-collaborative-care-management-program-for-caregivers-of-older-adults-with-dementia
#13
Shahrzad Mavandadi, Laura O Wray, Suzanne DiFilippo, Joel Streim, David Oslin
OBJECTIVES: To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. DESIGN: Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. SETTING: General community. PARTICIPANTS: Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults...
March 27, 2017: American Journal of Geriatric Psychiatry
https://www.readbyqxmd.com/read/28423936/relationship-quality-and-distress-in-caregivers-of-persons-with-dementia-a-cross-sectional-study
#14
Heidi Bjørge, Kari Kvaal, Milada Cvancarova Småstuen, Ingun Ulstein
This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs...
May 2017: American Journal of Alzheimer's Disease and Other Dementias
https://www.readbyqxmd.com/read/28411508/interventions-to-support-people-with-dementia-and-their-caregivers-during-the-transition-from-home-care-to-nursing-home-care-a-systematic-review
#15
REVIEW
Christian Müller, Sindy Lautenschläger, Gabriele Meyer, Astrid Stephan
BACKGROUND: During the transition of people with dementia from home to nursing home family caregivers often feel burdened. OBJECTIVES: We aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions...
June 2017: International Journal of Nursing Studies
https://www.readbyqxmd.com/read/28395276/lower-visual-avoidance-in-dementia-patients-is-associated-with-greater-psychological-distress-in-caregivers
#16
Marcela C Otero, Robert W Levenson
Caring for a spouse with dementia can lead to increased health problems in caregivers. The present study examined whether patient deficits in visual avoidance, a common form of emotion regulation, are related to greater psychological distress in caregivers. Participants were 43 Alzheimer disease (AD) patients, 43 behavioral variant frontotemporal dementia (bvFTD) patients, and their spousal caregivers. Patient visual avoidance (e.g., gaze aversion) was measured using behavioral coding of head, body, and eye position while viewing a disgusting film...
2017: Dementia and Geriatric Cognitive Disorders
https://www.readbyqxmd.com/read/28387447/withdrawn-interventions-for-fatigue-and-weight-loss-in-adults-with-advanced-progressive-illness
#17
REVIEW
Cathy Payne, Philip J Wiffen, Suzanne Martin
BACKGROUND: Fatigue and unintentional weight loss are two of the commonest symptoms experienced by people with advanced progressive illness. Appropriate interventions may bring considerable improvements in function and quality of life to seriously ill people and their families, reducing physical, psychological and spiritual distress. OBJECTIVES: To conduct an overview of the evidence available on the efficacy of interventions used in the management of fatigue and/or unintentional weight loss in adults with advanced progressive illness by reviewing the evidence contained within Cochrane reviews...
April 7, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28385034/voices-of-spouses-living-with-partners-with-neuropsychiatric-symptoms-related-to-dementia
#18
Marie Tyrrell, Pernilla Hillerås, Kirsti Skovdahl, Bjöörn Fossum, Dorota Religa
Persons with dementia, who reside in their own homes, are often cared for by family members. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory also known as neuropsychiatric symptoms. Quality of life for both the person with neuropsychiatric symptoms and their careers are affected, increasing suffering and risk for hospitalisation and admission to long-term residential care...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/28332736/dementia-related-restlessness-relationship-to-characteristics-of-persons-with-dementia-and-family-caregivers
#19
Natalie G Regier, Laura N Gitlin
OBJECTIVE: Dementia-related restlessness is commonly endorsed by caregivers but not well understood. This study examines differences in characteristics (demographics, cognitive status, physical function, pain, and mood) of persons with dementia whose caregivers endorse restlessness versus those who do not. We also examine the relationship of restlessness to caregiver well-being including burden, upset with behaviors, mastery, and depressive symptomatology. METHODS: We combined baseline data from three caregiver intervention studies of community-dwelling persons with dementia who exhibited neuropsychiatric symptoms (n = 569) as measured by the Agitated Behaviors in Dementia Scale...
March 23, 2017: International Journal of Geriatric Psychiatry
https://www.readbyqxmd.com/read/28323838/bupropion-for-the-treatment-of-apathy-in-huntington-s-disease-a-multicenter-randomised-double-blind-placebo-controlled-prospective-crossover-trial
#20
Harald Gelderblom, Torsten Wüstenberg, Tim McLean, Lisanne Mütze, Wilhelm Fischer, Carsten Saft, Rainer Hoffmann, Sigurd Süssmuth, Peter Schlattmann, Erik van Duijn, Bernhard Landwehrmeyer, Josef Priller
OBJECTIVE: To evaluate the efficacy and safety of bupropion in the treatment of apathy in Huntington's disease (HD). METHODS: In this phase 2b multicentre, double-blind, placebo-controlled crossover trial, individuals with HD and clinical signs of apathy according to the Structured Clinical Interview for Apathy-Dementia (SCIA-D), but not depression (n = 40) were randomized to receive either bupropion 150/300mg or placebo daily for 10 weeks. The primary outcome parameter was a significant change of the Apathy Evaluation Scale (AES) score after ten weeks of treatment as judged by an informant (AES-I) living in close proximity with the study participant...
2017: PloS One
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