People Living With Advanced Dementia In Nursing Care Homes Baseline Results From A Feasibility Trial Of The Namaste Care Intervention
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People Living with Advanced Dementia in Nursing Care Homes: Baseline Results from a Feasibility Trial of the Namaste Care Intervention by Katherine Froggatt Pdf
Background: Identification of valid, reliable and clinically relevant measures of quality of dying for palliative care trials is challenging. Self-reports and/or proxy reporting by professional or family carers has limitations. An alternative is measurement of general functioning (physical activity level or sleep patterns) evaluated with objective methods such accelerometers. There is increasing use of accelerometers in research, but little has considered this as an outcome measure for people with advanced dementia at the end of life. Aim: To determine the acceptability and utility of accelerometers as a proxy outcome of quality of dying in people with advanced dementia, and to estimate physical activity and sleep characteristics. Methods: 32 participants, from 6 nursing homes from the NAMASTE trial (a feasibility trial to improve the quality of dying for people with advanced dementia), wore a wrist band accelerometer (GENEActiv) for a maximum of 28 days. We estimated levels of physical activity and sleep characteristics (duration and efficiency). We used descriptive analyses and hierarchical linear models to describe and estimate activity and sleep. Acceptability of the accelerometer was ascertained by length of time worn and feedback from the resident, family or care staff. Results: The accelerometer was acceptable: 30 (94%) participants wore the actigraph continuously following the protocol (28 days) (1 participant withdrew from the study; 1 participant stopped wearing the device whilst in hospital). On average, measurements were available for 23.4 days (SD=2.8). No adverse effects were reported. Participants were generally inactive: they spent 98% of each day with low levels of activity
Towards Quality Care by Caroline Mozley,Caroline Sutcliffe,Heather Bagley,Lis Cordingley,David Challis,Peter Huxley,Alistair Burns Pdf
This unique evaluation of the outcomes of residential and nursing home care for older people identifies the factors determining the quality of life of older people who have moved into care homes. It examines the relationship between older people's psychological well-being and the kinds of care received in residential homes. The volume draws on a study of UK care homes, interviewing new entrants soon after admission and then on two further occasions, to ascertain their experience of care and their quality of life. Interviews were also undertaken with care staff and their managers, and the care environment of each home was assessed. The authors provide valuable evidence of the factors which can influence older people's well-being on entering a care home and how they adjust either positively or not to their new surroundings. The volume offers clear pointers towards ways to improve quality of residential and nursing home care.
Person-Centred Practice in Nursing and Health Care by Brendan McCormack,Tanya McCance Pdf
Person-centred Practice in Nursing and Health Care is a comprehensive and practical resource for all nurses and healthcare practitioners who want to develop person-centred ways of working. This second edition which builds on the original text Person Centred Nursing, has been significantly revised and expanded to provide a timely and topical exploration of an important subject which underpins all nursing and healthcare, edited by internationally renowned experts in the field. Person-centred Practice in Nursing and Health Care looks at the importance of person-centred practice (PCP) from a variety of practice, strategic, and policy angles, exploring how the principles of PCP underpin a variety of perspectives, including within leadership and in the curriculum. The book explores not only a range of methodologies, but also covers a variety of different healthcare settings and contexts, including working within mental health services, acute care, nursing homes, the community, and working with children and people with disabilities. Key features: Significantly updated and expanded since the previous edition, taking into account the considerable changes in recent health care advancements, including the ‘Francis’ report Builds on previous perspectives of person-centredness in nursing and applies them in a broader nursing and health care context Includes a stronger exploration on the role of the service-user Shows the use of life-story and narrative approaches as a way of putting the individual’s identity at the heart of the care relationship Includes learning features such as links to current practice developments and reflective questions
Background: Most people with dementia live in their own homes, often together with their partners, who become informal caregivers. Relationship quality and sense of couplehood can be threatened as a result of the transition from a mutually interdependent relationship to a caregiver-care-receiver relationship. This, in turn, may lead to many negative consequences for both partners. Support provided for couples is often divided into different types for the person with dementia and for the partner without dementia and lacks couple-based support that targets the relationship, resources and the couple’s everyday life together. Aim: The overall aim of this thesis is to explore couple-centred interventions in dementia and to develop and test a salutogenic, resource-oriented and couple-based intervention among couples in which one partner has dementia living at home. Methods and findings: This thesis comprises three parts: The first part Exploring involves two linked reviews, one narrative review (study I A) and one scoping review (study I B) that aim to identify and describe what previous couple-centred interventions comprised and why they were conducted. The results of the reviews revealed a knowledge gap in and a need for easily accessible support that targets couple relationships, resources and everyday life. The second part Developing (study II) refers to the development of an easily accessible resource-oriented couple-management intervention. The first step was to identify priority topics for such an intervention through a co-researcher process with couples living with dementia. This included a comprehensive literature review, interviews with couples in which one partner has dementia, and consultation meetings with expert groups of people with dementia and partners in both Sweden and the UK. The co-researcher process and the expert meetings informed four main themes with corresponding sub-themes that couples with dementia considered as important to their wellbeing in their everyday lives: (1) Home and Neighbourhood, (2) Meaningful Activities and Relationships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was developed for the delivery of the intervention. The third part Testing and Evaluating describes a feasibility study (study III) in which the DemPower application was tested for feasibility and acceptability among couples in Sweden and the UK. The results of the feasibility study indicated that the DemPower intervention was feasible and acceptable among couples in which one partner has dementia living at home. The testing and evaluating part also comprise a qualitative study (study IV) that explores the experiences of engaging with DemPower together as a couple living with dementia in Sweden. The findings resulted in the three themes: (1) Growth of the relationship, (2) We are not alone, and (3) Positive approach, which the couples appreciated and associated with the resource-oriented and salutogenic approach of DemPower. The overall findings of the thesis are presented in a concluding synthesis at the end of the thesis. The concluding synthesis, focused on “Meaningfulness”, “Empowering health promotion”, “Normalization” and “Transitions and couplehood”, represents the core findings of this thesis. What this thesis adds: This thesis contributes to research, healthcare and the public by highlighting the need for a salutogenic approach toward couples living with dementia. The DemPower application, with its focus on couples’ relationships, resource-orientation and everyday life, has proven feasibility and acceptability and has meaningfully addressed a gap in the literature and in practice. As researchers, healthcare professionals and the public, we need to support couples where one partner has dementia to continue to live as normal life as possible. This can best be achieved by focusing on what couples can do, by inclusion and by valuing them as the experts within dementia research and of their life experiences. Bakgrund: Majoriteten av personer med demens bor i sitt eget hem och ofta tillsammans med sin partner som blir en informell vårdgivare. Relationens kvalitet och känsla av parskap hotas ofta till följd av övergången från en ömsesidig beroenderelation till en vårdgivare-vårdtagar-relation allt eftersom demenssjukdomen fortskrider. Detta kan innebära många negativa konsekvenser. Stöd för par där ena partnern har demens delas ofta upp i olika former för personen med demens och för partnern utan demens, vilket innebär att det saknas parbaserat resursorienterat stöd med inriktning på att främja parrelationen och parets vardagliga liv. Syfte: Syftet med denna avhandling är att utforska parcentrerade interventioner inom demens och att utveckla och testa ett parbaserat, salutogent och resursorienterat stöd för par där ena partnern har en demenssjukdom och som bor tillsammans i det egna hemmet. Metoder och fynd: Denna avhandling består av tre delar. Den första delen att utforska inkluderar två länkade litteraturöversikter, en narrativ översikt och en kartläggande översikt (studie I) som beskriver tidigare interventioner för par som lever med demens och varför de genomförts. Resultaten av översikterna visade ett kunskapsgap i, och ett behov av lättillgängligt stöd som riktar sig till parförhållanden, parens resurser och att främja det vardagliga livet. Den andra delen, att skapa (studie II) involverar utvecklingen av ett lättillgängligt resursorienterat och parbaserat stöd. Det första steget var att identifiera prioriterade ämnen för en sådan intervention tillsammans med par som lever med demens, genom en så kallad medforskarprocess. Detta inkluderade en omfattande litteraturgenomgång, intervjuer med par där ena partnern har demens, och konsultationsmöten med expertgrupper bestående av personer med demens och partners i Sverige och i Storbritannien. Medforskarprocessen och expertmötena resulterade i fyra huvudteman med motsvarande underteman vilka par med demens ansåg vara viktiga för deras relation och för välbefinnande i vardagen: (1) Hem och grannskap, (2) Meningsfulla aktiviteter och relationer, (3) Förhållningssätt och empowerment och (4) Parskap. Dessa teman vidareutvecklades och integrerades i multimedia-applikationen DemPower, som utvecklades i syfte att erbjuda interventionen till par som lever med demens. Den tredje delen att testa och att utvärdera beskriver genomförbarhetsstudien (studie III) där applikationen DemPower testades med avseende på genomförbarhet och acceptabilitet hos par där en partner har demens i Sverige och i Storbritannien. Resultaten av studien visade att DemPower-interventionen var genomförbar och acceptabel bland par där ena partnern har demens. Denna delen av avhandlingen inkluderar även en kvalitativ studie (studie IV) som undersökte parens erfarenheter av att testa DemPower tillsammans som ett par. De samlade upplevelserna resulterade i tre teman: (1) Utveckling av parrelationen, (2) Vi är inte ensamma och (3) Positivt förhållningssätt. De övergripande resultaten från avhandlingen presenteras även i en konkluderande syntes i slutet av avhandlingen. Den konkluderande syntesen med fokus på Meningsfullhet, Empowerment, Normalisering och Parskap representerar kärnan i denna avhandling. Avhandlingens slutsatser och kunskapsbidrag: DemPower-applikationen med fokus på parförhållanden, hälsofrämjande resurser och vardagen har bidragit med ett stöd som vilar på en genuin parbaserad grund tillämpad i det vardagliga livet för par som lever med demens. Denna avhandling bidrar även med kunskap till forskning, vård och allmänheten genom att lyfta fram ett salutogent förhållningssätt till par som lever med demens. Som forskare, vårdpersonal och allmänhet bör vi stödja par där ena partnern har demens för att de ska kunna fortsätta leva ett så normalt liv som möjligt. Detta kan bäst uppnås genom att fokusera på parens resurser, genom inkludering och genom att värdera dem som experter inom demensforskning och i deras livserfarenheter.
Maintaining dignity for patients approaching death is a core principle of palliative care. Dignity therapy, a psychological intervention developed by Dr. Harvey Max Chochinov and his internationally lauded research group, has been designed specifically to address many of the psychological, existential, and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close. In the first book to lay out the blueprint for this unique and meaningful intervention, Chochinov addresses one of the most important dimensions of being human. Being alive means being vulnerable and mortal; he argues that dignity therapy offers a way to preserve meaning and hope for patients approaching death. With history and foundations of dignity in care, and step by step guidance for readers interested in implementing the program, this volume illuminates how dignity therapy can change end-of-life experience for those about to die - and for those who will grieve their passing.
Challenging Behaviour in Dementia by Graham Stokes Pdf
Understanding socially disruptive behavior in dementia is never easy. Most explanations offer neither solace nor solutions for families and carers, and treatment is often characterized by policies of control and containment. The result of Graham Stokes' 15 years of clinical work with people who are challenging, this book: disputes the traditional medical model of dementia and asserts that if we reach behind the barrier of cognitive devastation and decipher the cryptic messages, it can be shown that much behavior is not meaningless but meaningful. It contrasts the medical interpretation that sees anti-social behavior as mere symptoms of disease with a person-centered interpretation that resonates change and resolution. It offers a radical and innovative interpretation of challenging behavior consistent with the new culture of dementia care, focusing on needs to be met rather than problems to be managed.
Compassionate Communities by Klaus Wegleitner,Katharina Heimerl,Allan Kellehear Pdf
Compassionate communities are communities that provide assistance for those in need of end of life care, separate from any official heath service provision that may already be available within the community. This idea was developed in 2005 in Allan Kellehear’s seminal volume- Compassionate Cities: Public Health and End of Life Care. In the ensuing ten years the theoretical aspects of the idea have been continually explored, primarily rehearsing academic concerns rather than practical ones. Compassionate Communities: Case Studies from Britain and Europe provides the first major volume describing and examining compassionate community experiments in end of life care from a highly practical perspective. Focusing on community development initiatives and practice challenges, the book offers practitioners and policy makers from the health and social care sectors practical discussions on the strengths and limitations of such initiatives. Furthermore, not limited to providing practice choices the book also offers an important and timely impetus for other practitioners and policy makers to begin thinking about developing their own possible compassionate communities. An essential read for academic, practitioner, and policy audiences in the fields of public health, community development, health social sciences, aged care, bereavement care, and hospice & palliative care, Compassionate Communities is one of only a handful of available books on end of life care that takes a strong health promotion and community development approach.
Assessment Scales for Advanced Dementia by Ladislav Volicer,Ann C. Hurley Pdf
As internationally recognised pioneers in their field, Drs Volicer and Hurley have brought critical attention to the unique issues and needs of people in the advanced stages of dementia. In this book, they bring together a culmination of more than 20 years of research on late-stage dementia, providing the best evidence-based measurement scales available for researchers and care providers who are seeking to improve care for people in the final stages of this increasingly prevalent disease.
Intellectual Disability and Dementia by Karen Watchman Pdf
Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support. Practitioners, managers and commissioners will find this to be an informative resource for developing person-centred provision for people with intellectual disabilities and dementia and their families. It will also be a key text for academics and students who wish to be up-to-date with the latest research and practice developments in this field.
National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Committee on Family Caregiving for Older Adults
Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Committee on Family Caregiving for Older Adults Publisher : National Academies Press Page : 367 pages File Size : 53,6 Mb Release : 2016-11-08 Category : Medical ISBN : 9780309448093
Families Caring for an Aging America by National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Committee on Family Caregiving for Older Adults Pdf
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
Primary Care for Older People by Steve Iliffe,Vari Drennan Pdf
Primary Care for Older People is a contemporary reference work on health problems in later life written exclusively by primary care professionals for primary care professionals that: integrates nursing and medical perspectives on clinical practice and service organisation. understands that well-intentioned changes in practice and service provision can have harmful effects on patients, professionals and the health service is still able to offer positive guidance to individual practitioners, practices and Primary Care Groups, about best practice and innovative multi-disciplinary care for an ageing population. It is aimed at doctors, nurses, health visitors and social workers who are trying to combine care of individuals with an understanding of the needs of whole communities. Its themes are relevant to teachers in different professional disciplines, to members of Primary Care Group and Trust Boards, to planners and managers of primary care services, as well as to practitioners. The authors bring to this book their experience in general practice and community nursing, their expertise in service development and management, and their awareness of primary care research. Dr. Steve Iliffe has been an inner-city general practitioner in London since 1978, and is Reader in General Practice at the Royal Free and University College Medical School, where he is co-director of the Centre for Ageing Population Studies (CAPS) and manages the Primary Care for Older People research and development programme. He can be contacted at [email protected]. Vari Drennan has been a community health service manager , specialist health visitor for older people and health visitor since 1980 and is currently a senior lecturer in primary care nursing in the Department of Primary Care and Population Sciences at the Royal Free and University College Medical School. She can be contacted at [email protected],
