Developing champions to enhance the care of people with dementia in general hospitals

In NHS Ayrshire and Arran, almost 5500 people have a dementia diagnosis. This could increase by as much as 60% over the next 20 years (Alzheimer Scotland, 2007). National dementia strategies in the U.K. have identified a need for better training that supports staff in general hospitals. While all clinical settings will admit people with dementia, their specialist care needs are not always being met Better awareness will help ensure these are addressed on both admission and throughout their care journey. This is the second article describing a nurse led initiative to improve approaches towards dementia in a general community hospital. The first article (Crabtree and Mack, 2010) focused on raising awareness of dementia, while this follow-up article describes the development and implementation of a dementia champions programme.     

Explanatory models of dementia: links to end-of-life care

We will describe four models used to understand dementia: as a neurological condition; as a neuro-psychiatric condition; as a normal part of ageing; and seeing dementia from a person-centred perspective. Adopting the last of these allows an engagement with palliative care that has the potential to enrich the end-of-life experience of people with dementia, of their families and of the professional care staff who work with them. In this article, it will be argued that our perceptions of what is possible for practising person-centred care at the end of life are constrained by the paradigms we work within. There is developing evidence about how approaches to end-of-life care for people with dementia can move beyond what was, at best, therapeutic pessimism and at worst ill-treatment towards something that optimizes the capacities of those with dementia and mobilizes imaginative care practice.     

The pressures felt by informal carers of people with dementia

Caring for people with dementia is complex and demanding, and informal carers carry out much of the care. In this article, Madeline Armstrong outlines the different types of dementia and discusses the psychological approaches to care. Informal carers experience many stressors when caring for people with dementia and Admiral nurses play an important role in supporting carers.     

Supporting people with young onset dementia and their families: An evaluation of a training course for care workers

This article reports the findings of an evaluation of a training course for care workers who care for people with dementia in the community. Twenty-four care workers participated in the training which took place in London and Surrey, United Kingdom. The training had a significant positive impact on participants’ confidence in understanding the experiences and social care needs of people with young onset dementia (YOD) and their families. Participants also perceived that the training would help them improve their working practice by furthering their understanding of practical approaches to supporting and caring for people with dementia in general. Additionally, participants reported many ways in which they perceived being able to specifically support and empower people with YOD. It was concluded that the short training course improved knowledge and confidence for care workers on dementia care, and specifically in understanding how to support people with YOD and their families. Dementia specific training should be considered by service managers as a way of potentially increasing care worker job satisfaction.     

Supporting people with dementia in acute hospital settings

This article is the first in a series of five focusing on the needs of patients with dementia. The number of people with dementia accessing acute care is rising. The need for acute hospital care to adapt to demographic changes and to reflect these in the acute hospital structure is emphasised. The most common forms of dementia, including Alzheimer's disease, vascular dementia and Lewy body dementia, are discussed. The psychosocial aspects of this condition also need to be considered to promote nursing care that is sensitive to patients' needs.     

Behaviors associated with dementia: whether resisting care or exhibiting apathy, an older adult with dementia is attempting communication. Nurses and other caregivers must learn to 'hear' this language

Seemingly simple adjustments in care routines and approaches can make a significant difference in the experiences of people with dementia. This article provides an overview of cognitive impairment in older adults and suggests interventions that can help providers understand the "behavioral symptoms" of dementia, which are often considered a way of communicating unmet needs. By focusing on the person rather than on the disease, nurses promote comfort and functional autonomy in older adults whose cognitive impairments have progressed and yet who are very much alive and deserving of respectful, dignified care.     

A new strategy for patients with dementia

There are 800,000 people with dementia in the UK, of whom about 82,000 live in Scotland. The general population is ageing, and because the risk of developing dementia increases with age, the number of people with dementia in Scotland is expected to double over the next 25 years (Alzheimer Scotland 2011). A sharp increase in the number of people with dementia who present to emergency departments (EDs) and acute care settings. Up to one in four of all general hospital beds in the UK are occupied by people aged over 65 years who have dementia (Alzheimer's Society 2009), yet their specific needs are often poorly understood by healthcare staff (Alzheimer's Society 2009, Mental Welfare Commission 2010). This article describes the development of an online resource for ED staff in Scotland, and of the associated infrastructure, to improve the care experience for people with dementia, their families and carers.     

Sustaining citizenship: people with dementia and the phenomenon of social death

Social death is apparent when people are considered unworthy of social participation and deemed to be dead when they are alive. Some marginalized groups are more susceptible to this treatment than others, and one such group is people with dementia. Studies into discrimination towards older people are well documented and serve as a source of motivation of older people's social movements worldwide. Concurrently, theories of ageing and care have been forthcoming in a bid to improve the quality of responses to older people in times of need. Included in this theorizing has been the analysis of values and approaches that paid carers convey to citizens who require their help. In this article, the values and approaches of social workers and mental health nurses bring to people with dementia are considered within the context of social life and social death. It is based on a small study that undertook to critically examine how participation of people with dementia was facilitated. A thanatological lens was used to interpret inclusive and exclusive practices which potentially create opportunity for participation or reinforce the loss of citizenship for older people with dementia.     

Healthcare staffs’ experiences and perceptions of caring for people with dementia in the acute setting: Qualitative evidence synthesis

BackgroundDementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting.ObjectivesThe aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development.SettingsA screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings.ParticipantsTwelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers.MethodsFramework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings.ResultsKey themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia.ConclusionsThis review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.     

Educating nursing staff involved in the provision of dementia care

Evidence from several studies suggests that general nurses and acute health care staff do not always have an adequate understanding of the needs of people with dementia. This has major implications for the quality of care that is delivered and the well-being of people with dementia and a concurrent medical or surgical condition. This article describes how the creation of the role of nurse educator in dementia care helped to address this problem in one NHS trust.     

Preserving personhood in dementia research: a literature review

The aim of this literature review was to investigate studies that actively engage older people with dementia in research 'with' rather than 'on' them. The focus of the paper is the methods that researchers have used to ensure that studies are ethical, meaningful and preserve the personhood of individuals. The intention is to present a selection of papers rather than undertake an exhaustive review. It is well recognized that the prevalence of dementia in older adults is increasing, this increase is reflected by a huge rise in the amount of research into this area. The biomedical model continues to dominate dementia research however there is a small, but growing, body of research that actively seeks to engage people with dementia. This increase in research that actively engages people with dementia has developed in parallel with the 'new culture' of dementia care in which Kitwood ( Dementia Reconsidered: The Person Comes First . Open University Press, Buckingham, 1997) exhorts us to respect the personhood of people with dementia. This review identifies 22 studies that sought the views and experiences of older people with dementia. There is evidence in each paper that the researchers had given thought to ensuring that their work was ethical, meaningful and preserved the personhood of individuals. The skill with which this aim was achieved varied considerably from formulaic approaches to those that clearly demonstrate that the researchers have a mindset that is grounded in a powerful belief in, and application of, the concepts of genuine respect for older people with dementia. The examples of good practice that have been drawn from these papers have direct application to both future research and to the provision of clinical care.     

Achieving care and social justice for people with dementia

This article draws on two studies that have used an ethic of care analysis to explore lay, nursing and social work care for people with dementia. It discusses the political as well as the practice application of ethic of care principles and highlights the necessity to understand both what people do and the meanings with which such practices are imbued in order to identify ;good care' and the relationship between this and social justice. Examples of care for people with dementia are discussed by reference to core principles of an ethic of care: attentiveness, responsibility, competence, responsiveness and trust. These illustrate the potential for the development of a shared language within which different disciplines, lay carers and people with dementia can communicate about how needs could best be met in complex and difficult circumstances.     

Caring for people with dementia in the acute setting: a study of nurses' views

Caring for people with dementia in an acute hospital setting presents a number of challenges. This article reports the findings of a study which explored nurses' experiences of caring for older people with dementia in a unit caring for older people within an acute hospital. The study used a thematic approach to produce an interpretation of the care experience and a purposive sample of seven nurses was interviewed regarding the research aims. The findings revealed the structural inadequacies of the acute hospital as a dementia care environment and the resultant challenges and complexities of the care experience. Despite the identified challenges, nurses considered the specific needs of people with dementia and the environmental effects of the acute setting on their ability to meet identified needs.     

The psychiatric management of end-of-life pain and associated psychiatric comorbidity

Involvement by psychiatrists in the care of patients who are terminally ill has been limited historically; however, psychiatrists increasingly are participating in the care of these people who are facing the most challenging times of their lives. Pain management is considered to be an area of subspecialization for psychiatrists beyond their traditional role of being psychopharmacologists and psychotherapists. Biologically focused psychiatrists are able to address neuropsychiatric disorders, including pain and depression in the medically ill, and actively improve the quality of life for dying patients and their family members. This article provides a review of the recent literature that has addressed the involvement of psychiatrists in end-of-life care. Beginning with an example of the scientific aspects of cancer-related treatment from a patient’s perspective, and into the major treatment considerations, this article addresses pain, its recognition, and management challenges when the end of life approaches. The prompt recognition of frequently overlooked and underestimated concomitant depressions, delirium, dementia, and other mental disorders is important for mental health specialists. The importance of psychiatric care for patients who are terminally ill and the role of psychiatrists in the phase of care also are discussed.     

Exploring the usefulness of a recovery-based approach to dementia care nursing

Exploring new approaches to dementia care nursing is vital to enable services to cope with the expected rise in demand for healthcare due to an ageing population. A comparison between the current person-centred care approach in aged care and recovery-based approach that underpins mental health nursing was reviewed in the literature to determine which is more useful to dementia care nursing. The recovery model is the conceptual framework that underlies the recovery-based approach. It broadens the current person-centred care approach through the fostering of hope, facilitative rather than directive care, and enhances autonomy. This promotes positive outcomes for older people with dementia through empowerment to make choices in the way they wish to live within the community. This essay proposes that the recovery-based approach is more useful to dementia care nursing than person-centred models.     

Dementia care. Part 3: end-of-life care for people with advanced dementia

End-of-life care issues for people with advanced dementia have only recently been addressed in guidance. There appear to be barriers to accessing good palliative care for people in the terminal phase of the disease. The reasons for this are multifactorial, but may be attributed to factors such as dementia not being recognized as a terminal disease like cancer, problems in recognizing the symptoms of terminal dementia, and decision-making conflicts between family caregivers and other health and social care providers. This article highlights common symptoms of advanced dementia, and the need for a palliative care approach. It also addresses specific issues in both caring for people with dementia at the end of their lives and in supporting carers.     

People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care

Little is known about the experiences of people with dementia, as there has been relatively little research carried out that includes their perspectives. In the past, user perspectives on experiences of dementia and on services have mostly been solicited from family carers, rather than from people with dementia themselves. It has been suggested that these studies may lack information and insight into the experiences of people with dementia. This study aimed at eliciting the views and feelings of people in all stages of dementia, as well as those of their relatives, on care services and on experiences of dementia. Twenty-seven people with dementia from residential and day care settings were interviewed and their daily lives videotaped. Interviews were also conducted with next of kin. This article reports on findings and issues arising from the study.     

No more fighting and biting during mouth care: applying the theoretical constructs of threat perception to clinical practice

The purpose of this article is to describe how the neurobiological principles of threat perception and fear response can support clinical approaches to prevent and reduce care-resistant behaviors during mouth care. Nursing home residents who exhibit care-resistant behavior are at risk for poor oral health because daily oral hygiene may not be consistently provided. Poor oral health predisposes these older people to systemic problems such as pneumonia, cerebral vascular accidents, and hyperglycemia. Care-resistant behavior is a fear-evoked response to nurses' unintentionally threatening behavior during mouth care. Nurses can safely and effectively provide mouth care to persons with dementia who resist care by using personalized combinations of 15 threat reduction strategies.     

Adequacy of training in dementia care for acute hospital staff

People with dementia are frequently admitted to general wards where their dementia is often unrecognised and related healthcare needs are unaddressed. This article examines how staff view the training they have received in assessing and caring for people with dementia who are admitted to hospital. It reports on the results of the National Audit of Dementia (Care in General Hospitals); staff completed questionnaires reporting the sufficiency of their training in 13 main areas related to dementia care. Responses were obtained from 270 doctors, 968 qualified nurses and 541 healthcare assistants (HCAs); 690 worked on medical wards, 677 on surgical/orthopaedic wards and 412 on care of older people wards. Doctors felt more adequately trained than nurses or HCAs. Nurses on medical and surgical/orthopaedic wards thought their training was less sufficient than their colleagues working on care of older people wards. The authors conclude that nurses and HCAs working on wards not specialising in the care of older people should receive increased training in dementia care.