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Distress in dementia care

Andreas Braun, Daksha P Trivedi, Angela Dickinson, Laura Hamilton, Claire Goodman, Heather Gage, Kunle Ashaye, Steve Iliffe, Jill Manthorpe
Background People living with dementia often develop distressing behavioural and psychological symptoms (BPSD) that can affect their quality of life and the capacity of family carers and staff providing support at home. This systematic review of qualitative studies considers the views and experiences of people living with dementia and care providers about these symptoms and what helps to reduce their impact. Methods The two-stage review involved (a) An initial mapping of the literature to understand the range of BPSD, and how it is operationalised by different groups, to develop a search strategy; (b) A search of electronic databases from January 2000 to March 2015, updated in October 2016...
January 1, 2018: Dementia
Daksha P Trivedi, Andreas Braun, Angela Dickinson, Heather Gage, Laura Hamilton, Claire Goodman, Kunle Ashaye, Steve Iliffe, Jill Manthorpe
Background Two-thirds of people living with dementia live at home in the UK and many experience distressing behavioural and psychological symptoms. This systematic review evaluates the effectiveness of non-pharmacological interventions for behavioural and psychological symptoms among community-dwelling people living with dementia. Methods This two-stage review undertook an initial mapping of the literature followed by a systematic review of relevant randomised controlled trials. We searched electronic databases for pertinent studies reporting outcomes from interventions from January 2000 to March 2015 and updated searches in October 2016...
January 1, 2018: Dementia
Stephanie Petty, Kevin Harvey, Amanda Griffiths, Donna Maria Coleston, Tom Dening
OBJECTIVE: More understanding is needed about the emotional experiences of dementia from the perspective of the individual. This understanding can then inform the provision of health care to meet individual needs. This systematic review aimed to present all available descriptions of emotional distress and explanations for emotional distress experienced by individuals with dementia, articulated personally and by others. METHODS: A systematic mixed-method review identified literature that was screened and quality appraised...
March 2, 2018: International Journal of Geriatric Psychiatry
Billy A Caceres, Adriana Perez
The Caregiver Advise, Record, Enable (CARE) Act has the potential to make a positive impact in the lives of Latino older adults and their caregivers. As Latino individuals are the fastest growing older adult population, the number of Latino families and caregivers is also expected to grow, particularly among those providing care for someone with Alzheimer's disease or other dementias. Caregiving has been considered a culturally embedded value among Latino individuals. Although few studies have focused on caregiving in this population, those that exist suggest that Latino caregivers struggle to find bilingual and bicultural support and information and show higher levels of distress and health disparities...
March 1, 2018: Journal of Gerontological Nursing
Tim Pauley, Byung Wook Chang, Anne Wojtak, Gayle Seddon, John Hirdes
PURPOSE OF STUDY: The purpose of this study was to identify factors predictive of new onset and improved caregiver distress among informal caregivers providing assistance for clients receiving home care. PRIMARY PRACTICE SETTINGS: Home care. METHODOLOGY AND SAMPLE: The sample included 323,409 clients receiving home care from a Community Care Access Centre between March 2002 and March 2015 for whom data were available from two subsequent Resident Assessment Instrument-Home Care (RAI-HC) assessments...
March 2018: Professional Case Management
Sai-Hung Tang, Oi-I Chio, Ling-Hui Chang, Hui-Fen Mao, Li-Hua Chen, Ping-Keung Yip, Jen-Ping Hwang
AIM: To determine whether giving dementia caregivers active psychoeducational intervention is more efficacious than passive intervention for improving their caregiving skills and reducing their caregiving burden. METHODS: This study was a prospective, single-blinded, controlled trial with 43 caregiver/person-with-dementia dyads. The dyads were randomly assigned to the active psychoeducational intervention (AP) group, which used role-play, discussion, and development of problem-solving capacity to build up their caregiving skills and competence, or the passive psychoeducational intervention (PP) group, which gave caregivers educational materials on common caregiving strategies...
January 22, 2018: Geriatrics & Gerontology International
G J E Crowther, C A Brennan, M I Bennett
Introduction: psychological symptoms and delirium are common, but underreported in people with dementia on hospital wards. Unrecognised and untreated symptoms can manifest as distress. Identifying distress accurately therefore could act as a trigger for better investigation and treatment of the underlying causes. The challenges faced by healthcare professionals to recognise and report distress are poorly understood. Methods: semi-structured interviews with a purposive sample of 25 healthcare professionals working with older people in general hospitals were conducted...
January 17, 2018: Age and Ageing
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
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
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
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
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
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
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
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
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
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
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
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
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...
November 2017: Nursing Research
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