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Distress in dementia care

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https://www.readbyqxmd.com/read/29322577/i-just-can-t-please-them-all-and-stay-sane-adult-child-caregivers-experiences-of-family-dynamics-in-care-giving-for-a-parent-with-dementia-in-australia
#1
Gemma Tatangelo, Marita McCabe, Ashley Macleod, Anastasia Konis
Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care-giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers' distress in the context of caring for a parent with dementia. Semi-structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community...
January 11, 2018: Health & Social Care in the Community
https://www.readbyqxmd.com/read/29306500/nurses-perspectives-on-whether-medical-aid-in-dying-should-be-accessible-to-incompetent-patients-with-dementia-findings-from-a-survey-conducted-in-quebec-canada
#2
G Bravo, C Rodrigue, M Arcand, J Downie, M-F Dubois, S Kaasalaine, C M Hertogh, S Pautex, L Van den Block
We conducted a survey in a random sample of 514 Quebec nurses caring for the elderly to assess their attitudes towards extending medical aid in dying to incompetent patients and to explore associated factors. Attitudes were measured using clinical vignettes featuring a hypothetical patient with Alzheimer disease. Vignettes varied according to the stage of the disease (advanced or terminal) and the presence or absence of a written request. Of the 291 respondents, 83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably...
January 3, 2018: Geriatric Nursing
https://www.readbyqxmd.com/read/29212555/study-partners-should-be-required-in-preclinical-alzheimer-s-disease-trials
#3
REVIEW
Joshua D Grill, Jason Karlawish
BACKGROUND: In an effort to intervene earlier in Alzheimer's disease (AD), clinical trials are testing promising candidate therapies in preclinical disease. Preclinical AD trial participants are cognitively normal, functionally independent, and autonomous decision-makers. Yet, like AD dementia trials, preclinical trials require dual enrollment of a participant and a knowledgeable informant, or study partner. MAIN TEXT: The requirement of dyadic enrollment is a barrier to recruitment and may present unique ethical challenges...
December 6, 2017: Alzheimer's Research & Therapy
https://www.readbyqxmd.com/read/29153005/screening-for-delirium-development-and-validation-of-the-buffalo-delirium-scale-for-use-in-a-home-based-hospice-setting
#4
Jennifer M Breier, Scott T Meier, Christopher W Kerr, Scott T Wright, Pei C Grant, Rachel M Depner
BACKGROUND: Delirium is a challenging occurrence among people at end of life. It can be difficult to detect and treat because of its episodic nature. The Buffalo Delirium Scale (BDS) was designed to identify risk factors for hospice patients in the prodromal stage of delirium. OBJECTIVE: This study evaluated the psychometric properties of items assessing delirium risk factors related to cognitive problems, psychological distress, and sleep problems. METHODS: Hospice nursing staff assessed patients with the 11-item BDS over a 6-month period as part of standard weekly visits to monitor for emerging signs of delirium, for example, sleep patterns, cognition, and behavior...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29146222/nursing-staff-distress-associated-with-neuropsychiatric-symptoms-in-young-onset-dementia-and-late-onset-dementia
#5
Jeannette C L van Duinen-van den IJssel, Ans J M J Mulders, Martin Smalbrugge, Sandra A Zwijsen, Britt Appelhof, Syste U Zuidema, Marjolein E de Vugt, Frans R J Verhey, Christian Bakker, Raymond T C M Koopmans
OBJECTIVE: The aims of this study were (1) to investigate the relationship between different neuropsychiatric symptoms (NPS) and the level of distress experienced by nurses caring for residents with young-onset dementia (YOD) and (2) to compare these findings with those for nurses caring for residents with late-onset dementia (LOD). DESIGN/SETTING: This is a retrospective study conducted in Dutch long-term care facilities. Data were used from the Behavior and Evolution of Young-ONset Dementia studies (BEYOND) Parts I and II and the WAAL Behavior in Dementia-II (Waalbed-II) study...
November 14, 2017: Journal of the American Medical Directors Association
https://www.readbyqxmd.com/read/29143722/relationship-between-the-number-of-behavioral-symptoms-in-dementia-and-caregiver-distress-what-is-the-tipping-point
#6
Paul B Arthur, Laura N Gitlin, John A Kairalla, William C Mann
BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are a primary manifestation of brain dysfunction in dementia and a great challenge in caregiving. While BPSD are historically associated with caregiver distress, it is unclear whether there is an identifiable point where BPSD number is associated with heightened caregiver distress. The purpose of this study was to determine if such a tipping point exists to assist clinicians in identifying caregiver compromise. METHODS: Analyses were performed with three datasets totaling 569 community-dwelling persons with dementia and their caregivers...
November 16, 2017: International Psychogeriatrics
https://www.readbyqxmd.com/read/29143427/effectiveness-of-educational-program-using-printed-educational-material-on-care-burden-distress-among-staff-of-residential-aged-care-facilities-without-medical-specialists-and-or-registered-nurses-cluster-quasi-randomization-study
#7
Koji Fukuda, Seishi Terada, Mamoru Hashimoto, Katsuyuki Ukai, Ryo Kumagai, Mizue Suzuki, Masahiro Nagaya, Mika Yoshida, Hideyuki Hattori, Kenta Murotani, Kenji Toba
AIM: Behavioral and psychological symptoms of dementia are an important source of distress for caregivers. The aim of the present study was to evaluate the effectiveness of educational intervention using printed educational material for reducing distress induced by behavioral and psychological symptoms of dementia among caregivers working at facilities without medical specialists and/or registered nurses. METHODS: A cluster quasi-randomized, controlled comparative trial was carried out at 17 facilities in Japan...
November 15, 2017: Geriatrics & Gerontology International
https://www.readbyqxmd.com/read/29141448/utilizing-evidence-based-assessment-instruments-to-detect-well-being-and-distress-in-english-and-spanish-speaking-caregivers-of-individuals-affected-by-dementia
#8
Shanna L Burke, Aaron Burgess, Tamara Cadet
Objective The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/29132219/achieving-positive-outcomes-in-complex-cases-the-admiral-nurse-dementia-helpline-innovative-practice
#9
Susan Drayton, Karen H Dening
Carer distress is an all too common factor in caring for someone with dementia, whether living with the person with dementia, or trying to maintain their independence when they are living alone. Providing support for families on many day-to-day issues with immediacy as and when they arise can be very difficult to achieve for services on the ground as carer need can be difficult to anticipate as well as the changing status of the person with dementia. This paper discusses the innovative role of managing complexity on a dementia telephone helpline manned by Admiral Nurses, specialist dementia nurses, in expertly supporting a family over a weekend where there were health concerns of a family member with dementia and a high level of carer distress...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/29124914/experiences-of-using-simulation-in-dementia-education
#10
Vicki Leah, Julie Combes, Madeline McMillan, Lydia Russell, Kirsty McCune
This article describes the development of a simulation training day for multidisciplinary teams (MDTs) working on acute adult wards with the aim of improving their confidence in supporting people with dementia who are distressed. Recommendations are made for those who may be interested in delivering simulation training in their area of practice. Registered nurses, non-registered support workers and occupational therapists experienced in dementia care took part in a one-day simulation training pilot session that included three 'skill stations' with three patient simulation scenarios...
September 29, 2017: Nursing Older People
https://www.readbyqxmd.com/read/29122049/predictive-factors-associated-with-psychological-distress-of-caregivers-of-people-with-dementia-in-japan-a-cross-sectional-study
#11
Ryo Shikimoto, Mitsuhiro Sado, Akira Ninomiya, Kimio Yoshimura, Baku Ikeda, Toshiaki Baba, Masaru Mimura
BACKGROUND: Caregivers of people with dementia are likely to have psychological distress that sometimes results in mental health problems, such as depression. The objective of this study was to examine some predictive factors that are thought to be associated with psychological distress of caregivers of people with dementia in Japan. METHODS: Design: A cross-sectional study. SAMPLE: As part of a study to estimate the cost of dementia in Japan, 1,437 people with dementia-caregiver dyads were enrolled in the current informal care time study...
November 10, 2017: International Psychogeriatrics
https://www.readbyqxmd.com/read/29105505/development-and-pilot-testing-of-the-focus-on-the-person-form-supporting-care-transitions-for-people-with-dementia
#12
Elissa Burton, Susan Slatyer, Mary Bronson, Pam Nichols, Eleanor Quested, Andrew Hill, Sean Maher, Samar Aoun, Keith D Hill, Yukiko Kuno, Chris Toye
When people with dementia are hospitalised, their capacity to communicate with the staff may be limited, compounding risks of distress and other adverse outcomes. Opportunities for carers to share relevant information to inform appropriate person-centred care are also limited. This four-phase mixed methods study aimed to develop an evidence-based family carer-staff communication form, the Focus on the Person form, to address this concern. In Phase I, a literature review plus consultation with clinicians and carers informed form development...
January 1, 2017: Dementia
https://www.readbyqxmd.com/read/29095373/good-and-bad-days-fluctuations-in-the-burden-of-informal-dementia-caregivers-an-experience-sampling-study
#13
Sandrine Pihet, Christina Moses Passini, Manuela Eicher
BACKGROUND: Informal dementia caregivers (IDCs) are often confronted with important fluctuations in care-related burden, commonly described as "good and bad days." These fluctuations are overlooked by traditional questionnaires focusing on the average experience. The experience sampling method (ESM) is based on the repeated collection of data in everyday life, thereby allowing the description of day-to-day fluctuations in IDC burden, and the identification of their correlates. ESM studies are still scarce among IDCs, with none focusing on day-to-day fluctuations in burden...
November 2017: Nursing Research
https://www.readbyqxmd.com/read/29094543/role-of-the-admiral-nurse-in-supporting-a-person-with-dementia-and-their-family-carer
#14
Jean Karyn Gamble, Karen Harrison Dening
Distress is commonly experienced by those caring for someone with dementia, and can occur whether the carer is living with a person with dementia, or supporting a person with dementia who lives alone to maintain their independence. It is essential for health and social care professionals to support family carers to balance their needs with those of the person they care for. However, this might be challenging because many influencing factors can affect these needs, and identifying the needs of the family carer and balancing them with the needs of the person with dementia is often complex...
September 27, 2017: Nursing Standard
https://www.readbyqxmd.com/read/29077985/the-experience-of-psychological-distress-in-family-caregivers-of-people-with-dementia-a-cross-sectional-study
#15
Wilson Abreu, Teresa Rodrigues, Carlos Sequeira, Regina Pires, Ana Sanhudo
PURPOSE: To evaluate the degree of psychological distress in family caregivers of people with dementia. DESIGN AND METHODS: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. FINDINGS: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive-compulsion, interpersonal sensitivity, anxiety, and paranoid ideation...
October 27, 2017: Perspectives in Psychiatric Care
https://www.readbyqxmd.com/read/29068697/needs-and-quality-of-life-of-people-with-middle-stage-dementia-and-their-family-carers-from-the-european-actifcare-study-when-informal-care-alone-may-not-suffice
#16
Liselot Kerpershoek, Marjolein de Vugt, Claire Wolfs, Bob Woods, Hannah Jelley, Martin Orrell, Astrid Stephan, Anja Bieber, Gabriele Meyer, Geir Selbaek, Ron Handels, Anders Wimo, Louise Hopper, Kate Irving, Maria Marques, Manuel Gonçalves-Pereira, Elisa Portolani, Orazio Zanetti, Frans Verhey
OBJECTIVE: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). METHOD: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol...
October 25, 2017: Aging & Mental Health
https://www.readbyqxmd.com/read/28978301/dying-comfortably-in-very-old-age-with-or-without-dementia-in-different-care-settings-a-representative-older-old-population-study
#17
Jane Fleming, Rowan Calloway, Anouk Perrels, Morag Farquhar, Stephen Barclay, Carol Brayne
BACKGROUND: Comfort is frequently ranked important for a good death. Although rising numbers of people are dying in very old age, many with dementia, little is known about symptom control for "older old" people or whether care in different settings enables them to die comfortably. This study aims to examine, in a population-representative sample, associations between factors potentially related to reported comfort during very old people's final illness: physical and cognitive disability, place of care and transitions in their final illness, and place of death...
October 5, 2017: BMC Geriatrics
https://www.readbyqxmd.com/read/28977013/bereavement-support-for-family-caregivers-the-gap-between-guidelines-and-practice-in-palliative-care
#18
Samar M Aoun, Bruce Rumbold, Denise Howting, Amanda Bolleter, Lauren J Breen
BACKGROUND: Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. OBJECTIVE: To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. DESIGN: An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding...
2017: PloS One
https://www.readbyqxmd.com/read/28971511/relationship-between-speaking-english-as-a-second-language-and-agitation-in-people-with-dementia-living-in-care-homes-results-from-the-marque-managing-agitation-and-raising-quality-of-life-english-national-care-home-survey
#19
C Cooper, P Rapaport, S Robertson, L Marston, J Barber, M Manela, G Livingston
OBJECTIVE: As not speaking English as a first language may lead to increased difficulties in communication with staff and other residents, we (1) tested our primary hypotheses that care home residents with dementia speaking English as a second language experience more agitation and overall neuropsychiatric symptoms, and (2) explored qualitatively how staff consider that residents' language, ethnicity, and culture might impact on how they manage agitation. METHODS: We interviewed staff, residents with dementia, and their family carers from 86 care homes (2014-2015) about resident's neuropsychiatric symptoms, agitation, life quality, and dementia severity...
October 3, 2017: International Journal of Geriatric Psychiatry
https://www.readbyqxmd.com/read/28967849/-what-hath-night-to-do-with-sleep-the-caregiving-context-and-dementia-caregivers-nighttime-awakenings
#20
Amanda Leggett, Courtney A Polenick, Donovan T Maust, Helen C Kales
OBJECTIVES: Care provision for persons with dementia can be rewarding yet may disrupt caregiver's sleep health. Using the National Health & Aging Trends Study and the National Study of Caregiving, we examine care receiver and caregiver contextual factors, caregiver health and psychological wellbeing as predictors of caregivers' nighttime awakenings. METHODS: The sample for this cross-sectional study included 451 caregivers for individuals with dementia surveyed by telephone...
July 7, 2017: Clinical Gerontologist
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