scholarly journals Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care

2016 ◽  
Vol 4 (23) ◽  
pp. 1-298 ◽  
Author(s):  
Kate Gridley ◽  
Jenni Brooks ◽  
Yvonne Birks ◽  
Kate Baxter ◽  
Gillian Parker
Keyword(s):  
Feasibility Study ◽  
Best Practice ◽  
Social Care ◽  
Life Story ◽  
Good Practice ◽  
Dementia Care ◽  
Care Staff ◽  
Care Homes ◽  
Staff Attitudes ◽  
People With Dementia

BackgroundImproving dementia care quality is an urgent priority nationally and internationally. Life story work (LSW) is an intervention that aims to improve individual outcomes and care for people with dementia and their carers. LSW gathers information and artefacts about the person, their history and interests, and produces a tangible output: the ‘life story’.ObjectiveTo establish whether or not full evaluation of LSW was feasible.DesignMixed-methods feasibility study.MethodsIn-depth interviews and focus groups explored experiences of LSW and best practice with people with dementia, family members and dementia care staff. A systematic review explored best practice and theories of change for LSW. These stages helped to identify the outcomes and resources to explore in the feasibility study. A representative sample survey of health and social care dementia care providers in England established LSW practice in different settings. A survey of a self-selected sample of family members of people with dementia explored how LSW is experienced. Two small outcome studies (stepped-wedge study in six care homes and pre-test post-test study in inpatient specialist dementia care wards) explored the feasibility of full evaluation of LSW in these settings.SettingsSurvey: generalist and specialist care homes; NHS dementia care settings; and community dementia services. Feasibility study: care homes and NHS inpatient dementia care wards.ParticipantsNHS and social care services, people with dementia, family carers, care home staff and NHS staff.InterventionsLSW.Main outcome measuresSpread of LSW and good practice, quality of life (QoL) for the person with dementia and carers, relationships between people with dementia and family carers, staff attitudes about dementia, staff burnout, resource use and costs.Review methodsNarrative review and synthesis, following Centre for Review and Dissemination guidelines.ResultsGood practice in LSW is identifiable, as are theories of change about how it might affect given outcomes. Indicators of best practice were produced. LSW is spreading but practice and use vary between care settings and are not always in line with identified good practice. Two different models of LSW are evident; these are likely to be appropriate at different stages of the dementia journey. The feasibility study showed some positive changes in staff attitudes towards dementia and, for some people with dementia, improvements in QoL. These may be attributable to LSW but these potential benefits require full evaluation. The feasibility work established the likely costs of LSW and highlighted the challenges of future evaluation in care homes and inpatient dementia care settings.LimitationsThere was insufficient evidence in the literature to allow estimation of outcome size. We did not carry out planned Markov chain modelling to inform decisions about carrying out future evaluation because of the dearth of outcome data in the literature; low levels of data return for people with dementia in the hospital settings; lack of detected effect for most people with dementia; and questions about implementation in the research settings.ConclusionsLSW is used across different health and social care settings in England, but in different ways, not all of which reflect ‘good practice’. This large, complex study identified a wide range of challenges for future research, but also the possibility that LSW may help to improve care staff attitudes towards dementia and QoL for some people with dementia.Future workFull evaluation of LSW as an intervention to improve staff attitudes and care is feasible with researchers based in or very close to care settings to ensure high-quality data collection.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals MEDREV: feasibility study of a combined pharmacy–health psychology intervention to improve care for people with dementia with behaviour that challenges in care homes

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703253
Author(s):  
Ian Maidment
Keyword(s):  
Feasibility Study ◽  
Qualitative Interviews ◽  
Care Home ◽  
Training Session ◽  
Dementia Care ◽  
Training Data ◽  
Care Staff ◽  
Care Homes ◽  
Inappropriate Use ◽  
People With Dementia

Background‘Behaviour that Challenges’ is common in older people with dementia in care homes and treated with antipsychotics. Policy is focused on reducing the use of antipsychotics in people with dementia and therefore reducing harm. This submission reports results on a NIHR-funded feasibility study MEDREV.AimTo assess the feasibility of medication review by a specialist dementia care pharmacist combined with staff training with the objective of limiting the inappropriate use of psychotropics.MethodCare homes were recruited. People meeting the inclusion (dementia; medication for behaviour that challenges), or their personal consultee, were approached. A specialist dementia care pharmacist reviewed medication and made recommendations. Care staff received a 3-hour training session promoting person-centred care and GPs’ brief training. Data were collected on recruitment and retention, and implementation of recommendations. Other outcomes included the Neuropsychiatric Inventory-Nursing Home version, quality of life (EQ-5D/DEMQoL), cognition (sMMSE), and health economic (CSRI). Qualitative interviews explored expectations and experiences.ResultsMedication reviews were conducted in 29 of 34 residents recruited and the pharmacist recommended reviewing medication in 21 of these. Fifteen (71.4%) of these were antidepressants: 57.1% (12 of 21) of recommendations were implemented and implementation took a mean of 98.4 days. Non-implementation themes for will be presented. One hundred and sixty-four care staff received training (care homes = 142; primary care = 22). Twenty-one participants (care home managers = 5; GPs = 3; nurses = 2; care staff = 11) were interviewed.ConclusionThe study was feasible, although the approach would need modification to improve the uptake of reviews and reduce the delay in implementation. Most of the recommendations related to antidepressants.

Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia

2020 ◽  
Vol 25 (4) ◽  
pp. 265-277 ◽  
Author(s):  
Gillian Parker ◽  
Kate Gridley ◽  
Yvonne Birks ◽  
Julie Glanville
Keyword(s):  
Systematic Review ◽  
Complex Intervention ◽  
Life Story ◽  
Good Practice ◽  
Dementia Care ◽  
Care Staff ◽  
People With Dementia ◽  
Causal Pathway ◽  
Health And Social Care ◽  
Story Work

Objectives Life story work involves gathering information about a person, their history and interests, and producing a tangible output, usually a book. It is used increasingly in dementia care. However, theory about if, how, and why it affects outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult. This article uses a systematic review to uncover theories of change and outcomes for life story work in dementia care. We describe the methods and their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Methods A systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of life story work to inform a feasibility study for the formal evaluation of life story work in dementia care. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit causal links between life story work and outcomes. We triangulated the review findings with qualitative research, which used focus groups with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from life story work. Results Of the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia, individual psychological outcomes, improved relationships between care staff and the individual with dementia, better care, more effective engagement of family members/carers within the care setting, and helping carers to cope. Twelve final theories linking these outcomes to life story work via a causal pathway were elicited. There was substantial overlap in the outcomes identified by the review and by carers, people with dementia, and professionals. Together, the results informed our choice of outcome measures for the pilot evaluation. Conclusions This approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un-theorized areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

Enjoying the front-line of dementia care: an integrative analysis of what care home staff report makes them happy at work

2014 ◽  
Vol 18 (4) ◽  
pp. 167-175 ◽  
Author(s):  
Jill Manthorpe
Keyword(s):  
Job Satisfaction ◽  
Social Care ◽  
Care Home ◽  
Dementia Care ◽  
Care Homes ◽  
Front Line ◽  
Content Type ◽  
Care Home Staff ◽  
People With Dementia

Purpose – High turnover of staff in the long-term dementia care sector contributes to poor quality care and lack of continuity of care in the UK and many other countries. The purpose of this paper is to explore the research evidence on what care assistants report they enjoy when working in front-line dementia care jobs in long-term care facilities. Design/methodology/approach – An integrative analysis was used to study research findings focusing on the front-line workforce in care homes. The literature review sought to capture key findings, including overviews of research, from studies from 1990 to mid-2014 that have considered the positive experiences of front-line care home staff working with people with dementia. Findings – There is a great deal of research investigating care home staff's job satisfaction. Much of this highlights the importance of personal, social and managerial relationships. Common themes continue to be reported. There is potential for work on improving care assistant experiences in care homes but also a need to address long-standing inequities affecting the care home sector. Research limitations/implications – Some studies are not precise about which staff groups they are investigating in studies about care homes and many concentrate on the problems staff report. Measures of job satisfaction vary. When exploring dementia-related care not all studies are clear if care home residents have dementia or not. Practical implications – Many studies have investigated the views of care assistants working with people with dementia in care homes that address happiness in their work, often reported as job or work satisfaction, and these should be consulted when developing dementia services or managing care homes. As with other parts of the social care workforce, employers and managers need to be aware of effective and acceptable workforce reforms and ways to reduce turnover. Originality/value – This review suggests the value of investigating positive aspects of care work with people with dementia living in care homes. Greater attention could be paid to job satisfaction in social care more widely.

Enhanced healthcare in care homes for people with dementia: the Admiral nursing offer

2021 ◽  
Vol 23 (7) ◽  
pp. 1-10
Author(s):  
Karen Harrison Dening ◽  
Zena Aldridge
Keyword(s):  
Primary Care ◽  
Residential Care ◽  
Social Care ◽  
Care Home ◽  
Dementia Care ◽  
Care Homes ◽  
Complex Needs ◽  
Care Home Staff ◽  
People With Dementia ◽  
Health And Social Care

Background The UK older population is higher than the global average. Over the next 20 years, England will see an increase in the number of older people who have higher levels of dependency, dementia and comorbidity, many of whom will require 24-hour residential care. It is estimated that 70% of residents in nursing and residential care homes either have dementia on admission or develop it while residing in the care home, many of who will have complex needs with high levels of multimorbidity. However, there is a lack of consistency in the provision of primary care and specialist services to this population and a known gap in knowledge and skills of dementia care in care home staff and primary care teams. Methods This article considers the current health policy drivers to enhance integrated health and social care provision to care homes and proposes a model of care that would support the aims of the NHS Long Term Plan for care to be delivered closer to home and improve out of hospital care which includes people who live in care homes by introducing Enhanced Health in Care Homes. It is crucial that such a model includes the correct skill mix to meet the needs of the care home population. Conclusions There are currently gaps in service provision to many care homes. Admiral nurse case managers and specialists in dementia care, are well placed to support the delivery of Enhanced Health in Care Homes and improve access to specialist support to care home residents, their families, care home staff and the wider health and social care system.

scholarly journals 37 Factors Influencing Mealtime Care for People with Dementia Living in Care Homes: An Ethnographic Study

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i7-i11
Author(s):  
J Faraday ◽  
C Abley ◽  
C Exley ◽  
J Patterson
Keyword(s):  
Social Care ◽  
Hospital Admissions ◽  
Care Home ◽  
Good Practice ◽  
Ethnographic Study ◽  
Care Homes ◽  
Care Home Staff ◽  
Factors Influencing ◽  
People With Dementia ◽  
Health And Social Care

Abstract Introduction More and more people with dementia are living in care homes. Often they depend on care home staff for help with eating and drinking. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to identify factors influencing mealtime care for this population. Methods Over twenty-five hours of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care home staff and residents living with dementia. Twenty-two semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. The study used a constant comparison approach, so that data from early observations and interviews were explored in more depth subsequently. Results Five factors were identified which influenced mealtime care for people with dementia living in care homes. These were: environment (such as background music and building layout); kitchen and food (including connectivity between kitchen staff and others); staffing (for example: staff ratios and allocation); knowledge and support (including training, resources and supportive culture); and relationship with wider care team (such as family involvement, and the role of visiting health and social care professionals). Conclusions This study is part of a bigger project which will develop a staff training intervention to improve mealtime care for people with dementia living in care homes. The intervention will be informed by these findings, and by complementary evidence on good practice in mealtime care (from primary and secondary studies). It is anticipated that good mealtime care may improve quality of life for care home residents, and reduce hospital admissions.

scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Management of dementia

2020 ◽  
pp. 557-570
Author(s):  
Sarah Cullum ◽  
Tesema Taye
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Ethical Issues ◽  
Family Members ◽  
Dementia Care ◽  
Psychosocial Aspects ◽  
People With Dementia

The cornerstone of dementia care is social care, and much of this is delivered by the families and carers of people with dementia. The management of dementia should therefore focus on supporting and developing the care provided by family members and carers in the community, because their education and enablement will help to optimize the quality of life for all people living with dementia. This chapter concentrates on the assessment and management of people with dementia in the early and later stages of the disorder. At both stages we consider engagement, autonomy, respect, protection, and ethical issues, as well as describing the clinical and psychosocial aspects of treatment. The emphasis is on the broader principles of management, which apply to people with dementia of any aetiology, their families, carers, and communities, and take into account the different settings in which they may present.

scholarly journals Connections with nature for people living with dementia

2019 ◽  
Vol 23 (3) ◽  
pp. 142-151 ◽  
Author(s):  
Simon Chester Evans ◽  
Julie Barrett ◽  
Neil Mapes ◽  
June Hennell ◽  
Teresa Atkinson ◽  
...  
Keyword(s):  
Social Interaction ◽  
Online Survey ◽  
Good Practice ◽  
Dementia Care ◽  
Care Homes ◽  
Content Type ◽  
Outdoor Spaces ◽  
The Uk ◽  
Extra Care Housing

Purpose The benefits of “green dementia care”, whereby people living with dementia are supported to connect with nature, are increasingly being recognised. Evidence suggests that these benefits span physical, emotional and social spheres and can make a significant contribution towards quality of life. However, care settings often present specific challenges to promoting such connections due to a range of factors including risk-averse cultures and environmental limitations. The purpose of this paper is to report on a project that aims to explore the opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in residential care and extra care housing schemes in the UK. Design/methodology/approach Data were gathered from 144 responses to an online survey by managers/staff of extra care housing schemes and care homes in the UK. In depth-case studies were carried out at three care homes and three extra care housing schemes, involving interviews with residents, staff and family carers. Findings A wide variety of nature-based activities were reported, both outdoor and indoor. Positive benefits reported included improved mood, higher levels of social interaction and increased motivation for residents, and greater job satisfaction for staff. The design and layout of indoor and outdoor spaces is key, in addition to staff who feel enabled to promote connections with nature. Research limitations/implications This paper is based on a relatively small research project in which the participants were self-selecting and therefore not necessarily representative. Practical implications The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes. Social implications Outdoor activities can promote social interaction for people living with dementia in care settings. The authors’ findings are relevant to the recent policy focus on social prescribing. Originality/value The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes.

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