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Distress in dementia care

Thom J Ringer, Afeez Abiola Hazzan, Courtney C Kennedy, Sarah Karampatos, Christopher Patterson, Sharon Marr, Brian Misiaszek, Tricia Woo, George Ioannidis, Alexandra Papaioannou
BACKGROUND: Physical frailty is associated with significant morbidity and mortality in community-dwelling older adults. Burden in informal caregivers of older adults causes significant physical and psychological distress. However, the relationship between these two clinical phenomena has not been extensively studied. This cross-sectional study evaluated the relationship between physical frailty of community-dwelling older adults attending an outpatient geriatric clinic and the subjective burden reported by their informal caregivers...
November 17, 2016: BMC Geriatrics
Mark E Kunik, A Lynn Snow, Nancy Wilson, Amber B Amspoker, Shubhada Sansgiry, Robert O Morgan, Jun Ying, Gayle Hersch, Melinda A Stanley
OBJECTIVES: To compare the efficacy of Preventing Aggression in Veterans with Dementia (PAVeD) with that of usual care in decreasing incidence of aggression (primary outcome) and pain and improving depression, pleasant events, caregiver burden, and patient-caregiver relationship quality (secondary outcomes). DESIGN: Randomized controlled trial with assessments at baseline and 3, 6, 9, and 12 months SETTING: Houston, TX. PARTICIPANTS: A total of 203 community-dwelling veterans with pain and dementia and their caregivers...
April 27, 2016: American Journal of Geriatric Psychiatry
Sean Page, Jenny Burgess, Ian Davies-Abbott, Debbie Roberts, Jaanika Molderson
It cannot be assumed by healthcare providers that transgender people routinely receive care and treatment that is of the quality and sensitivity that should be expected. In particular there are concerns from within the transgender community that they experience discrimination and disrespect from both individual practitioners and the healthcare system as a whole. This causes an avoidance of contact that is undesirable for both users and providers of healthcare services. Older transgender people are vulnerable to a range of mental health problems and, like all elderly, increasingly to dementia; failure to access specialist services in a timely manner may result in unnecessary distress and potentially to crisis...
October 14, 2016: Issues in Mental Health Nursing
Emilie Wawrziczny, Guillaume Berna, Francine Ducharme, Marie-Jeanne Kergoat, Florence Pasquier, Pascal Antoine
BACKGROUND: The progressive mobilization of spouse caregivers who take care of a person with dementia (PWD) can lead to situations of distress. OBJECTIVE: The current study sought to investigate the influence of the characteristics of the caregiving context on spousal caregiver distress. METHODS: 125 spousal caregivers participated in this study. The characteristics of the caregiving context were assessed using questionnaires. We examined a moderated-mediator model (Step 1) in which we hypothesized that PWD and caregiver characteristics and dyadic determinants contribute to spousal caregiver distress...
October 5, 2016: Journal of Alzheimer's Disease: JAD
Luana Baldin Storti, Débora Teles Quintino, Natália Michelato Silva, Luciana Kusumota, Sueli Marques
OBJECTIVE: to analyze the relationship between the distress of the family caregiver and the presence of neuropsychiatric symptoms in elderly patients with Alzheimer's disease or mixed dementia. METHOD: a descriptive, cross-sectional study conducted in the Geriatric and Dementias Clinic of a general tertiary hospital, with 96 elderly people with Alzheimer's disease or mixed dementia and their family caregivers. Questionnaires to characterize the elderly and caregivers, and the Neuropsychiatric Inventory were used...
2016: Revista Latino-americana de Enfermagem
Andrea Petriwskyj, Deborah Parker, Siobhan O'Dwyer, Wendy Moyle, Nikki Nucifora
BACKGROUND: Recent studies have indicated that family caregivers of people with dementia have higher rates of depression, anxiety and hopelessness, as well as higher levels of burden, stress and distress. Not all caregivers, however, succumb to the negative effects of caring. Caregivers who are able to recover from, resist or adapt to the physical and psychological demands of caring can be considered "resilient". OBJECTIVES: The objective of this review was to examine the existing evidence regarding interventions for building resilience in family caregivers of people living with dementia...
June 2016: JBI Database of Systematic Reviews and Implementation Reports
Irene Aasmul, Bettina Sandgathe Husebo, Elisabeth Flo
CONTEXT: Most people with dementia develop neuropsychiatric symptoms (NPS), which are distressing for their carers. Untreated pain may increase the prevalence and severity of NPS and thereby staff burden. OBJECTIVES: We investigated the association between NPS and the impact of individual pain treatment on distress in nursing home staff. METHODS: NH-units were cluster-randomized to an intervention group (33 NH units; n=175) or control group (27 NH units; n=177)...
August 11, 2016: Journal of Pain and Symptom Management
Tessa van der Maaden, Henrica C W de Vet, Wilco P Achterberg, Froukje Boersma, Jos M G A Schols, David R Mehr, Francisca Galindo-Garre, Cees M P M Hertogh, Raymond T C M Koopmans, Jenny T van der Steen
BACKGROUND: Pneumonia in people with dementia has been associated with severe discomfort. We sought to assess the effectiveness of a practice guideline for optimal symptom relief for nursing home residents with dementia and pneumonia. METHODS: A single-blind, multicenter, cluster randomized controlled trial was conducted in 32 Dutch nursing homes. Outcomes were assessed on the patient level. The main outcome measures were discomfort and symptoms: discomfort (DS-DAT: Discomfort Scale-Dementia of Alzheimer Type), (lack of) comfort (EOLD-CAD: End Of Life in Dementia-Comfort Assessment in Dying), pain (PAINAD: Pain Assessment in Advanced Dementia), and respiratory distress (RDOS: Respiratory Distress Observation Scale)...
2016: BMC Medicine
Shirley Harvey Bush, Nathalie Lacaze-Masmonteil, Marie Theresa McNamara-Kilian, Alistair Richard MacDonald, Sallyanne Tierney, Franco Momoli, Meera Agar, David Christopher Currow, Peter Gerard Lawlor
BACKGROUND: Delirium is a very common and distressing neuropsychiatric syndrome in palliative care. Increasing age, the presence of dementia and advanced cancer are well-known predisposing risk factors for delirium development. Sleep-wake cycle disturbance is frequently seen during delirium and melatonin has a pivotal role in the regulation of circadian rhythms. Current evidence across various settings suggests a potential preventative role for melatonin in patients at risk of delirium, but no studies are currently reported in patients with advanced cancer...
August 11, 2016: Trials
Sam T Creavin, Sarah J Cullum, Judy Haworth, Lesley Wye, Antony Bayer, Mark Fish, Sarah Purdy, Yoav Ben-Shlomo
BACKGROUND: People with cognitive problems, and their families, report distress and uncertainty whilst undergoing evaluation for dementia and perceive that traditional diagnostic evaluation in secondary care is insufficiently patient centred. The James Lind Alliance has prioritised research to investigate the role of primary care in supporting a more effective diagnostic pathway, and the topic is also of interest to health commissioners. However, there are very few studies that investigate the accuracy of diagnostic tests for dementia in primary care...
2016: BMC Family Practice
Esther Wiskerke, Jill Manthorpe
BACKGROUND: There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives' feelings, managing their possible distress and conflict, and how good practice should be reflected in care home policy and practice guidance. METHODS: This literature review explored what is known of the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person...
July 13, 2016: Dementia
Karen Harrison Dening, Michael King, Louise Jones, Victoria Vickestaff, Elizabeth L Sampson
BACKGROUND AND AIMS: When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers' choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this. METHODS: A cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ...
2016: PloS One
Laura N Gitlin, Catherine Verrier Piersol, Nancy Hodgson, Katherine Marx, David L Roth, Deidre Johnston, Quincy Samus, Laura Pizzi, Eric Jutkowitz, Constantine G Lyketsos
Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention...
July 2016: Contemporary Clinical Trials
Elizabeth Teale, John Young, Najma Siddiqi, Theresa Munyombwe, Jennifer Harrison, Marieke Schuurmanns
INTRODUCTION: Delirium is a common and distressing condition associated with frailty, dementia and comorbidity. These are common in long-term care settings. Residents in care homes are therefore at particular risk of delirium. Despite this, methods to detect delirium in care homes are lacking, with existing diagnostic tools taking too long, or requiring specific training to deliver. This limits their feasibility for use for the routine detection of delirium by care home staff. Routine screening for delirium in care homes would allow timely attention to exacerbating factors to attenuate the episode, and facilitate future research into delirium in the care home environment...
2016: BMJ Open
Chieh-Chun Kao, Li-Chan Lin, Shiao-Chi Wu, Ker-Neng Lin, Ching-Kuan Liu
BACKGROUND: Hyperphagia increases eating-associated risks for people with dementia and distress for caregivers. The purpose of this study was to compare the long-term effectiveness of spaced retrieval (SR) training and SR training combined with Montessori activities (SR + M) for improving hyperphagic behaviors of special care unit residents with dementia. METHODS: The study enrolled patients with dementia suffering from hyperphagia resident in eight institutions and used a cluster-randomized single-blind design, with 46 participants in the SR group, 49 in the SR + M group, and 45 participants in the control group...
2016: Clinical Interventions in Aging
Rachael Webb, Karen Harrison Dening
Many people with dementia are cared for by family members. Family carers often feel bound to support the person with dementia at the expense of their own needs, which can be neglected. They often experience distress when making decisions, especially over ethical dilemmas when their own interests and those of the person being cared for conflict. This paper presents a case study approach to consider best interests decision making for families affected by dementia. In the case study, a carer is supporting his father to remain living at home although he feels this unsafe and the demands of this cause tension with his family and affect his performance at work...
June 2016: British Journal of Community Nursing
R Romero-Moreno, L Gallego-Alberto, M Márquez-González, A Losada
OBJECTIVES: Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process. This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress. METHOD: A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life...
June 2, 2016: Aging & Mental Health
Suzanne Timmons, Emma O'Shea, Desmond O'Neill, Paul Gallagher, Anna de Siún, Denise McArdle, Patricia Gibbons, Sean Kennelly
BACKGROUND: Admission to an acute hospital can be distressing and disorientating for a person with dementia, and is associated with decline in cognitive and functional ability. The objective of this audit was to assess the quality of dementia care in acute hospitals in the Republic of Ireland. METHODS: Across all 35 acute public hospitals, data was collected on care from admission through discharge using a retrospective chart review (n = 660), hospital organisation interview with senior management (n = 35), and ward level organisation interview with ward managers (n = 76)...
2016: BMC Geriatrics
Carolyn Seeganna, Deborah Antai-Otong
As the population ages, nurses in various clinical settings must identify high-risk groups that are vulnerable to delirium and dementia. They also must be able to provide psychosocial and pharmacologic interventions that promote comfort and safety for patients and their families experiencing these distressful medical conditions. Efforts to facilitate health resolution and restore the patient and caregivers to an optimal level of functioning must be priorities.
June 2016: Nursing Clinics of North America
Andrea L Gilmore-Bykovskyi, Tonya J Roberts, Barbara J King, Korey A Kennelty, Amy J H Kind
PURPOSE OF THE STUDY: To describe skilled nursing facility (SNF) nurses' perspectives on the experiences and needs of persons with dementia (PwD) during hospital-to-SNF transitions and to identify factors related to the quality of these transitions. DESIGN AND METHODS: Grounded dimensional analysis study using individual and focus group interviews with nurses (N = 40) from 11 SNFs. RESULTS: Hospital-to-SNF transitions were largely described as distressing for PwD and their caregivers and dominated by dementia-related behavioral symptoms that were perceived as being purposely under-communicated by hospital personnel in discharge communications...
May 12, 2016: Gerontologist
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