The use of life story work with people with dementia to enhance person-centred care

mckeown j., clarke a., ingleton c., ryan t. & repper j. (2010) The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing 5 , 148–158 Background. Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. Aims and objectives. The study investigates how life story work is: understood and developed in practice; experienced by all participants and affects the delivery and outcomes of care. Design and methods. The experience of older people with dementia, family carers and care staff in using life story work was explored within an NHS Health and Social Care Trust. A multiple case study design was adopted within a constructivist approach. Semi-structured interviews, observation, conversations were employed. Findings. Life story work has the potential to: enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard, verbally and non-verbally; be enjoyable for all concerned and enable the person with dementia to feel proud about themselves and their lives. Conclusion and implications for practice. Life story work has the potential to enhance person-centred care for older people with dementia and their families. Taking a practice development approach ensures that life story work can be implemented sensitively and is sustained in practice.     

Dignity, dining and dialogue: reviewing the literature on quality of life for people with dementia

venturato l. (2010) Dignity, dining and dialogue: reviewing the literature on quality of life for people with dementia. International Journal of Older People Nursing 5 , 228–234
doi: 10.1111/j.1748-3743.2010.00236.x Aim. To review contemporary literature on quality of life for people with dementia. Background. One of the consequences of population ageing is the predicted increase in the incidence of dementia. While we can as yet do little to affect the course of the disease, health care professionals are well-placed to intervene to affect quality of life and quality of care for people with dementia. Results. Research into quality of life for people with dementia has grown markedly over the last decade, in line with evolving conceptual and theoretical understandings of this complex concept. While much of the literature continues to focus on assessment and measurement of quality of life, emerging areas of interest are noted, including dialogue associated with personhood; dignity; and dining and mealtime experiences. Conclusion. Literature on quality of life for people with dementia is as diverse as the concept itself. Established and emerging areas of research suggest that this diversity will continue into the future as we strive to better understand quality of life for people with dementia in all its complexity.     

Life story work in health and social care: systematic literature review

AIM: The aim of this paper is to review the literature on life story work in health and social care practice. BACKGROUND: Life story work as an intervention has been used with a number of health and social care clients, such as children people with learning disabilities, older people on medical wards and with older people who have dementia. It may help challenge ageist attitudes and assumptions, be used as a basis for individualized care, improve assessment, assist in transitions between different care environments, and help to develop improved relationships between care staff and family carers. However, to date there has been no attempt to collate the findings from published accounts. METHODS: A systematic search of the literature on life story work was conducted in February 2004, using nursing, medical and social science databases and a combination of thesaurus and free text search terms. This revealed over 1000 publications; the use of carefully constructed inclusion and exclusion criteria identified 51 relevant items. Fourteen were subsequently selected and reviewed using a set of reflective critical appraisal questions. FINDINGS: A range of methodological approaches has been adopted to explore the use of life story work with no one specific methodology prevailing. The work has been most frequently used with older people and people with a learning disability and life story books are the most common approach. Staff perceptions of life story work have been explored, but patient and carer views are less frequently reported. The findings of the studies are discussed in broad themes, offering some tentative recommendations for using life story work in practice. CONCLUSION: Evidence on the use of life story work is immature, leading to the recommendation for more research. Although appraising literature from a range of approaches is complex, there are some potentially far-reaching benefits of life story work in health and social care practice.     

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.     

Dementia, dignity and quality of life: nursing practice and its dilemmas

manthorpe j., iliffe s., samsi k., cole l., goodman c., drennan v. & warner j. (2010) Dementia, dignity and quality of life: nursing practice and its dilemmas. International Journal of Older People Nursing 5 , 235–244
doi: 10.1111/j.1748-3743.2010.00231.x Aims. The need for healthcare practitioners to respect the dignity of older people is widely recognised in England, where it has been given attention by politicians, professionals and health service regulators. This article aims to provide examples of how such ambitions may be used in practice development. Methods. This article reports the use of five vignettes discussed by dementia care practitioners that explored the areas of dementia diagnosis, lying, incontinence, behavioural and psychological distress, and end of life care. Findings. Each vignette promoted discussion of differences of perspectives about the ways to enhance the dignity of people with dementia in hospital, care home and community settings. The discussion confirmed that while dignity may be one quality indicator of good care potentially enhancing quality of life, it is not always straightforward. It may be more easily conceptualised when talking of physical care and treatment than other areas. Conclusion. The opportunity to debate the subject and to discuss practice examples revealed differences of opinion and moral perspectives between practitioners about the use and relevance of the term dignity. These need to be acknowledged in any debates about objective and subjective definitions of quality of life.     

Factors associated with quality of life of people with dementia in long-term care facilities: A systematic review

Background

Quality of life has become an important outcome measure in dementia research. Currently there is no convincing evidence about which factors are associated with quality of life of people with dementia living in long-term care facilities.

Objective

This study aims to investigate which factors are associated with quality of life, including factors associated with change over time, of people with dementia living in long-term care facilities.

Design

A systematic literature review was performed.

Data sources

Cochrane, Pubmed, CINAHL, Web of Science, and PsycINFO were searched.

Review methods

Three researchers independently assessed studies for eligibility. The inclusion criteria were: (1) the primary focus was on factors related to quality of life; (2) the study was performed in long-term care facilities; (3) the study regarded quality of life as multidimensional construct. Methodological quality of studies included in the review was assessed with a quality criteria checklist.

Results

Ten cross-sectional and three longitudinal articles were included in the review. In cross-sectional studies, depressive symptoms were negatively related to self-rated quality of life of people with dementia. The association between depressive symptoms and proxy-rated quality of life was less clear. Behavioural disturbances, especially agitation, appeared to be negatively related to proxy-rated quality of life. There appeared to be a negative relation between quality of life, activities of daily living and cognition, although this could not be confirmed in all studies. In longitudinal studies, depressive symptoms were negatively related and cognition was positively related to self-rated quality of life, whereas dependency and depressive symptoms were negatively related to proxy-rated quality of life.

Conclusions

There are only few high quality studies that investigate associations of (change in) quality of life of people with dementia living in long-term care facilities. Our results suggest that depressive symptoms and agitation are related to lower quality of life. Perspective of quality of life measurement, i.e. self- or proxy rating, may influence its associations. Longitudinal studies are needed to determine which factors are related to change in quality of life over time. This information is essential for the development of interventions that aim to improve quality of life.     

Developing an oral assessment and intervention tool for older people: 2

This is the second of a series of three articles relating to oral care for older people. The first article highlighted the importance of effective oral care for older people (Vol 9(17): 1124-7). This article critically analyses a number of oral care agents and interventions to identify evidence-based practice relating to oral care for older people. Recommendations for practice are highlighted to guide practitioners in implementing safe and effective nursing interventions within oral care. The third article will critique a number of published oral assessment tools and describe an oral assessment and intervention tool that has been developed.     

A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to end-of-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions. This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care.     

Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts

moyle w., murfield j.e., griffiths s.g. & venturato l. (2012)?Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing68(10), 2237-2246. ABSTRACT: Aims. This article reports on a study of quality of life of older people with dementia, as assessed by the person with dementia, family carer and care staff. Background. People with dementia can give meaningful assessments of their quality of life, but these often differ from proxy ratings. In understanding this discrepancy, the influence of age, extent of cognitive impairment and activity limitation has been investigated. A lack of conclusive associations between quality of life ratings and these variables indicates a need for further research. Methods. Fifty-eight triads comprising the person with dementia, family carer and member of care staff from four long-term care facilities were surveyed on the Quality of Life-Alzheimer's Disease questionnaire between August and December 2007. Results. There was an important difference in the Quality of Life-Alzheimer's Disease questionnaire total mean scores between groups, with the person with dementia providing the highest ratings. Level of impairment in Activities of Daily Living had an important effect on quality of life ratings, with proxies, particularly care staff, providing lower ratings when there was greater activity limitation. This was not replicated for assessments made by the person with dementia. Age or level of cognitive impairment did not influence any ratings. Conclusion. People with dementia can give assessments of their quality of life. However, discrepancy in ratings, with greater activity limitation affecting proxy ratings but not those made by the person with dementia, indicates the importance of including both self-report and proxy measures in research and care planning.     

Is quality of life being compromised in people with dementia in long-term care?

Moyle W. (2010) Is quality of life being compromised in people with dementia in long-term care? International Journal of Older People Nursing 5 , 245–252
doi: 10.1111/j.1748-3743.2010.00230.x Aim. To outline the importance of understanding quality of life (QOL) in people with dementia living in long-term care. To consider several key research questions and some of the challenges and impact of neglecting knowledge transfer. Background. There is a gap between the knowledge in the broad dementia research literature and transfer of knowledge into practice. Quality of life research and transfer of research into practice is one means by which health professionals can inform health and social care policy and improve care practice. Discussion. There are a number of unanswered research questions in relation to QOL in people with dementia living in long term care. A selection of questions discussed in this paper relate to the impact of staff knowledge of mental health assessment and the importance of therapeutic communication, cognitive training programs and social biography, individual needs, weight and behavioural and psychological symptoms of dementia (BPSD), resident choice and the impact of the environment on QOL. Conclusion. Research methods used to assess QOL must not be too restrictive and mixed methods and data from multiple perspectives should be encouraged so that an extensive understanding is uncovered. Potential strategies to assist knowledge transfer in long-term care settings are needed.     

Palliative care for persons with dementia

Dementia is irreversible. Although currently available drugs are typically able to ameliorate symptoms and slow down its progress, there is yet no known cure for this disease. The inevitable consequence of dementia is the gradual deterioration of the condition until final decline into the end of life stage. The priority care plan for patients with end stage dementia, therefore, must focus on palliative care that provides for a comfortable and high as possible quality of life. However, dementia is rarely looked upon as an end-stage disease. In 2009, the Taiwan National Health Insurance began reimbursing the costs of hospice care for patients with end stage dementia. This paper discusses end stage dementia cases in which patients received inappropriate interventions during their final days as well as the barriers faced in developing countries to providing palliative care. This paper also suggests strategies to promote quality of care and quality of life in people with end of life dementia.     

Family Caregivers for People with Dementia and the Role of Occupational Therapy

ABSTRACT. As the population continues to age, the prevalence of Alzheimer's disease and related dementia (ADRD) will increase, along with the number of informal (e.g., family and friends) caregivers needed. The negative physical, mental, and financial impact providing such care has on the caregiver, in addition to the tremendous economic value of their care, has been well documented. Furthermore, the quality of care and the amount of care that is provided has also been shown to influence the overall health and wellbeing of the care receiver and caregiver. The current qualitative, phenomenological study explored the experience of these family caregivers and how occupational therapists can better assist caregivers for people who have dementia. Five themes emerged: Personal Changes, Obstacles/Challenges, Support Network, Emotions, and Healthcare Thoughts. A discussion of the themes and how occupational therapists can assist these caregivers is included.     

A Nurse Practitioner initiated model of service delivery in caring for people with dementia

The increasing number of people with dementia in aged care facilities is reported to have a high burden of care among staff. The Nurse Practitioner role can be beneficial in the provision of dementia care particularly when difficult and aggressive behaviour is being displayed. The model of service described in this paper is designed in such a way to make the outreach team contribute to staff sustainability. Such a service is different to other outreach services and focuses on a number of key deliverables. In practice, the service ensures that recommendations made by the team at the initial assessment are implemented. In addition, they work with the staff in managing the resident's behaviour, train and model suggestions for practice in interventions. Evaluation of the service is a work in progress and will highlight important aspects about the workforce for the improvement of quality of life for residents with dementia.     

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.     

Effective nursing interventions for the management of Alzheimer's disease.

Alzheimer's disease (AD) is a progressive neurodegenerative disease that causes severe deterioration of functional and cognitive abilities. As the leading cause of dementia in adults, it affects one in every 10 people who are more than 65 years of age. There is a vital need for neuroscience nurses with knowledge of AD to provide high-quality care for the growing number of patients. The use of effective nursing interventions for the management of AD can help nurses promote independence and quality of life for AD patients. Nursing care must include interventions that focus on maintaining AD patients' functional and cognitive abilities as well as on preventing further disability and decline. Nurses can implement these measures in acute, long-term, and home healthcare settings.     

Interventions to improve communication between people with dementia and nursing staff during daily nursing care: A systematic review

BackgroundTo provide adequate nursing care it is important for nursing staff to communicate effectively with people with dementia. Due to their limited communication skills, people with dementia have difficulties in understanding communication and expressing themselves verbally. Nursing staff members often report communication difficulties with people with dementia, which emphasises the urgent need for interventions to improve their communication with people in this specific target group.ObjectivesTo provide an up-to-date overview of communication interventions that are applicable during daily nursing care activities, irrespective of care setting, and to describe the effects on communication outcomes in people with dementia and nursing staff.DesignSystematic literature reviewData sourcesThe Cochrane Library, CINAHL, PsycINFO, and Pubmed databases were searched for all articles published until the 23rd of February 2016.Review methodsPapers were included, if: (1) interventions focused on communication between nursing staff and people with dementia and were applicable during daily nursing care; (2) studies were (randomised) controlled trials; (3) papers were written in English, Dutch, or German. Data were extracted on content and communication outcomes of interventions, and on methodological quality of the studies. The data extraction form and methodological quality checklist were based on the Method Guidelines for Systematic Reviews for the Cochrane Back Review Group.ResultsSix studies on communication interventions were included. All of the studies incorporated a communication skills training for nursing staff with a broad range in frequency, duration and content. In addition, there was wide variation in the communication outcome measures used. Four studies measured non-verbal communication, all found positive effects on at least some of the communication outcomes. Four studies measured verbal communication, of which three found positive effects on at least one of the measured outcomes. Methodological quality assessment demonstrated a high risk of bias in five of the six studies.ConclusionsFew studies have been identified with wide variation in interventions and outcome measures. In addition, the methodological shortcomings make it difficult, to draw conclusions about the effectiveness. More research is needed to develop and evaluate communication interventions. Additionally, it is useful to reach consensus on defining and measuring communication.     

Issues related to quality of life measures for persons with dementia

The rising population of elderly worldwide has led to an increasing number of people with dementia. Managing and providing quality care for people with dementia has thus become a priority public health issue in developed countries. Dementia is a gradually degenerative disease. In the absence of a cure, improving, maintaining or maximizing quality of life is becoming the primary goal of nursing care for patients with this disease. Quality of life is an important outcome index of medical care and can be a criterion for making health economics decisions. The fact that dementia is a disease that presents steadily declining cognitive function has led to numerous challenges and debates regarding the optimal concepts and methodologies to be used to measure quality of life in those with dementia. This paper reviews relevant debates on these issues and makes suggestions that may serve as guides to monitoring / studying quality of life in dementia patients.     

Effects of dance intervention on agitation and cognitive functioning of people living with dementia in institutional care facilities: Systematic review

IntroductionAgitation and impaired cognitive functioning are common symptoms of dementia, which require costly medication regimens that are associated with adverse effects. This study investigates the effects of dance interventions on agitation and cognitive function in people living with dementia in institutional care facilities.MethodsFive electronic databases were searched for eligible studies on dance interventions for people living with dementia published between 2002 and 2021. Standard deviation and post mean values were extracted. Within-group Hedges’ g was computed for individual studies.ResultsSix randomised controlled trials and three non-randomised studies of satisfactory quality, with a total of 610 participants, were included. Statistical analysis found significant improvements in agitation and cognitive functioning with dance interventions.DiscussionThis review provided favourable evidence on the effects of dance interventions on agitation and cognitive functions in people with dementia. However, given the limited evidence, more studies are needed to confirm the effects.