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Distress in dementia care

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https://www.readbyqxmd.com/read/28925299/living-with-incontinence-the-experience-of-people-with-dementia
#1
Laura Cole, Vari M Drennan
Dementia is a distressing condition in which individuals progressively require the support of others. Many people experience problems with incontinence and continence management. The presence of incontinence is influential in decisions for people with dementia to move into a care home. This study, in the interpretative tradition, investigates for the first time the person with dementia's perspective on these problems and their strategies for managing them. We conducted semi-structured conversational interviews with seven people with mild-to-moderate dementia and analysed the transcripts thematically...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/28922625/living-and-dying-with-advanced-dementia-a-prospective-cohort-study-of-symptoms-service-use-and-care-at-the-end-of-life
#2
Elizabeth L Sampson, Bridget Candy, Sarah Davis, Anna Buylova Gola, Jane Harrington, Michael King, Nuriye Kupeli, Gerry Leavey, Kirsten Moore, Irwin Nazareth, Rumana Z Omar, Victoria Vickerstaff, Louise Jones
BACKGROUND: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. AIMS: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. DESIGN: 9-month prospective cohort study. SETTING AND PARTICIPANTS: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes...
August 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28914991/resistiveness-to-care-as-experienced-by-family-caregivers-providing-care-for-someone-with-dementia
#3
Pamela C Spigelmyer, Judith E Hupcey, Carol A Smith, Susan J Loeb, Lisa Kitko
PURPOSE: This research explored family caregivers' lived experiences of resistiveness to care when they provided care for people with dementia. The goal was to identify a general meaning of family caregivers' lived experiences to target potential areas for future nursing interventions to help family caregivers manage their caregiving role and provide a base for future research surrounding resistiveness to care. DESIGN: Descriptive phenomenology was used to provide descriptions of eight family caregivers who provided care for someone with dementia and experienced resistiveness to care...
September 15, 2017: Journal of Nursing Scholarship
https://www.readbyqxmd.com/read/28858007/the-management-of-sleep-disorders-in-dementia-an-update
#4
Kirsi M Kinnunen, Anastasia Vikhanova, Gill Livingston
PURPOSE OF REVIEW: Sleep disorders in dementia cause distress and may lead to families being unable to care for someone with dementia at home. Recent Cochrane reviews found no interventions of proven effectiveness. There was no effect of light therapy and moderate evidence that melatonin was ineffective both given without knowledge of the patient's circadian rhythm. The current article updates this review by considering newer publications on interventions for sleep disorders or abnormalities of the sleep-wake cycle in people with dementia living in the community...
September 6, 2017: Current Opinion in Psychiatry
https://www.readbyqxmd.com/read/28817366/trajectory-of-dyspnea-and-respiratory-distress-among-patients-in-the-last-month-of-life
#5
Margaret L Campbell, Jason M Kiernan, John Strandmark, Hossein N Yarandi
BACKGROUND: The trajectory of dyspnea has been reported among patients approaching the end of life. However, patients near death have been dropped from longitudinal studies or excluded altogether because of an inability to self-report; proxy estimates have been reported. It is not known whether dyspnea or respiratory distress remains stable, escalates, or abates as patients reach last days. OBJECTIVE: Determine trajectory of dyspnea (self-reported) and respiratory distress (observed) among patients who were approaching death...
August 17, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28806917/study-protocol-pragmatic-randomized-control-trial-of-an-internet-based-intervention-my-tools-4-care-for-family-carers
#6
Wendy Duggleby, Jenny Ploeg, Carrie McAiney, Kathryn Fisher, Jenny Swindle, Tracey Chambers, Sunita Ghosh, Shelley Peacock, Maureen Markle-Reid, Jean Triscott, Allison Williams, Dorothy Forbes, Lori Pollard
BACKGROUND: Family carers of older persons with Alzheimer's' disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL)...
August 14, 2017: BMC Geriatrics
https://www.readbyqxmd.com/read/28795386/dementia-caregiver-burden-a-research-update-and-critical-analysis
#7
REVIEW
Sheung-Tak Cheng
PURPOSE OF REVIEW: This article provides an updated review of the determinants of caregiver burden and depression, with a focus on care demands and especially the differential effects of various neuropsychiatric symptoms or symptom clusters. Moreover, studies on caregivers for frontotemporal and Lewy body dementias were referred to in order to identify differences and similarities with the mainstream literature based largely on Alzheimer caregivers. RECENT FINDINGS: As a group, neuropsychiatric symptoms are most predictive of caregiver burden and depression regardless of dementia diagnosis, but the effects appear to be driven primarily by disruptive behaviors (e...
August 10, 2017: Current Psychiatry Reports
https://www.readbyqxmd.com/read/28793380/non-pharmacological-approaches-for-behavioural-and-psychological-symptoms-of-dementia-in-older-adults-a-systematic-review-of-reviews
#8
REVIEW
Laura E Legere, Susan McNeill, Lori Schindel Martin, Michelle Acorn, Diana An
AIMS AND OBJECTIVES: To review the evidence on non-pharmacological approaches to care for behavioural and psychological symptoms of dementia in older adults. BACKGROUND: Dementia is increasing in worldwide prevalence and can have severe and life-altering impacts on older adults. Behavioural and psychological symptoms of dementia can occur as a result of unmet needs and are distressing for family and caregivers. Many reviews have examined specific approaches to behaviours, but few have compared interventions for effectiveness and applicability across settings...
August 9, 2017: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/28754586/distress-associated-with-dementia-related-psychosis-and-agitation-in-relation-to-healthcare-utilization-and-costs
#9
Donovan T Maust, Helen C Kales, Ryan J McCammon, Frederic C Blow, Amanda Leggett, Kenneth M Langa
OBJECTIVES: Explore the relationship between behavioral and psychological symptoms of dementia (BPSD; specifically, delusions, hallucinations, and agitation/aggression) and associated caregiver distress with emergency department (ED) utilization, inpatient hospitalization, and expenditures for direct medical care. DESIGN/SETTING/PARTICIPANTS: Retrospective cross-sectional cohort of participants with dementia (N = 332) and informants from the Aging, Demographics, and Memory Study, a nationally representative survey of U...
October 2017: American Journal of Geriatric Psychiatry
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
#10
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
#11
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
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
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