BAKKER Christian, VERBOOM Marjon, KOOPMANS Raymond T. C. M.
Journal article citation:
Journal of the American Medical Directors Association, 23(2), 2022, pp.261-265.
Publisher:
Elsevier (for the American Medical Directors Association)
Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support...
(Edited publisher abstract)
Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support for people with young-onset dementia is still largely unavailable. In this special article, barriers as well as facilitators for the development of postdiagnostic care and support in young-onset dementia are addressed. Drawing from the experiences in the Netherlands, the establishment of an appropriate infrastructure has proven a corner stone in service development in young-onset dementia. The establishment of a centre at the national level for the development and dissemination of knowledge and affiliated regional centers that coordinate and offer care and support at the regional level has helped to reimagine, redefine, but more importantly also rearrange, postdiagnostic care and support in young-onset dementia in the Netherlands. This has resulted in care standards for service provision in young-onset dementia that have been incorporated in the dementia standard at the national level. Also, a quality hallmark has been developed to guide the arrangement of age-appropriate services at the local level. Moreover, specific training programs are in place for health care professionals involved in young-onset dementia. To be able to prioritize topics in research for the upcoming years, a scientific agenda has been established. The strong collaboration between organizations that provide a voice for people with dementia, care providers and research centers, that all strive to support people to live well with young-onset dementia has boosted these developments and may inspire other countries searching for ways to improve postdiagnostic care and support in young-onset dementia.
(Edited publisher abstract)
Subject terms:
young onset dementia, service provision, care reform, quality assurance, standards, needs, long term care;
Health and Social Care Delivery Research, 9(19), 2021, Online only
Publisher:
National Institute for Health Research
Place of publication:
London
Design: mixed-methods study. Setting: care homes for older adults in England. Findings: This study found that care home quality ratings were related to working conditions for staff and positively associated with quality-of-life outcomes for residents. This study found a positive relationship between care quality and both staff wages and staff being trained in dementia and person-centred care. Homes...
(Edited publisher abstract)
Background: Care home staff have a critical bearing on quality. The staff employed, the training they receive and how well they identify and manage residents’ needs are likely to influence outcomes. The Care Act 2014 requires services to improve ‘well-being’, but many residents cannot self-report and are at risk of exclusion from giving their views. The Adult Social Care Outcomes Toolkit enables social care-related quality of life to be measured using a mixed-methods approach. There is currently no equivalent way of measuring aspects of residents’ health-related quality of life. This study developed new tools for measuring pain, anxiety and depression using a mixed-methods approach. The study also explored the relationship between care home quality, residents’ outcomes, and the skill mix and employment conditions of the workforce who support them. Objectives: were to develop and test measures of pain, anxiety and depression for residents unable to self-report; to assess the extent to which regulator (Care Quality Commission) quality ratings reflect residents’ care-related quality of life; and to assess the relationship between aspects of the staffing of care homes and the quality of care homes. Design: mixed-methods study. Setting: care homes for older adults in England. Findings: This study found that care home quality ratings were related to working conditions for staff and positively associated with quality-of-life outcomes for residents. This study found a positive relationship between care quality and both staff wages and staff being trained in dementia and person-centred care. Homes that were short-staffed or struggled to keep staff tended to be of poorer quality. The research shows that care home quality is important to the quality of life of residents, especially those who have higher care and support needs. One way in which care homes can improve care quality, and, therefore, improve residents’ quality of life, is by investing in their care workforce through leadership, training, and better pay and working conditions. Conclusions: The most dependent residents gain the most from homes rated ‘good/outstanding’. However, measuring the needs and outcomes of these residents is challenging, as many cannot self-report. A mixed-methods approach can reduce methodological exclusion and an over-reliance on proxies. Improving working conditions and reducing staff turnover may be associated with better outcomes for residents.
(Edited publisher abstract)
Subject terms:
quality of life, care homes, staffing levels, residents, quality assurance, performance management, anxiety, depression, pain, outcomes;
This review looked at the care received by people living with dementia in care homes in Wales, and how they are supported in this important stage of their lives. It is based on inspection visits to 164 care homes and conversations with people living with dementia and their families about the care they received; and interviews with commissioners and providers of care home services. Main findings...
(Edited publisher abstract)
This review looked at the care received by people living with dementia in care homes in Wales, and how they are supported in this important stage of their lives. It is based on inspection visits to 164 care homes and conversations with people living with dementia and their families about the care they received; and interviews with commissioners and providers of care home services. Main findings include: people living with dementia are cared for by staff who are warm, respectful, and provide care in line with personal plans; in a small proportion of homes, care is rushed; staff received dementia training but this did not always result in person-centred care; people’s well-being and care could be more effective with improvements to the environment in which they live; in general, families were very positive about the care, staffing and management in the care homes; people living with dementia had access to healthcare but frequently did not receive a timely diagnosis of their dementia; multi-disciplinary working could be improved, particularly hospital discharge practice; people’s medication had been reviewed in consultation with a GP or pharmacist in about 90% of care homes and there is monitoring of the effect of medication; providers said one in four people living with dementia are prescribed antipsychotic medication; people living with dementia were supported to access specialist mental health support; more effective admission and discharge from hospital would support care homes; a number of care homes embrace technology, developing links with communities and undertaking a range of creative activities that improved the well-being of people living with dementia; providers said that the key challenges facing care homes for people living with dementia are the retention of staff, the complexity of dementia and the impact on the home of people needing one-to-one care. Finance was a challenge consistently identified by providers.
(Edited publisher abstract)
Subject terms:
care homes, older people, dementia, inspection, quality assurance;
Background: There is a lack of an up-to-date body of evidence and a comprehensive overview concerning literature on quality indicator (QI) development for dementia care. Therefore, we systematically reviewed recent literature and formulated recommendations for future research. Methods: PubMed, CINAHL and The Cochrane Library were searched for studies describing QI development or redefinition...
(Edited publisher abstract)
Background: There is a lack of an up-to-date body of evidence and a comprehensive overview concerning literature on quality indicator (QI) development for dementia care. Therefore, we systematically reviewed recent literature and formulated recommendations for future research. Methods: PubMed, CINAHL and The Cochrane Library were searched for studies describing QI development or redefinition for dementia care (from first symptoms until admission to long-term care), published from 2008 to May 2019. Results: We included a total of 7 articles, comprising of 107 QIs. The majority of publications originated from Europe. These applied to outpatient care, primary care and end-of-life care. Most QIs referred to care processes. Several care domains were determined by the authors, ranging from screening and assessment to end-of-life care. The methodological quality of the QI sets differed considerably. The QI sets with the best methodological quality were developed using expert evaluation or a Delphi technique. Conclusions: It can be concluded that a reasonable amount of QIs for assessing and optimizing community dementia care exists, however, further development and methodological improvements of these QIs are necessary. Involvement of people with dementia and caregivers in the development process and a broader focus including community oriented next to medically oriented QIs are examples of potential improvement measures.
(Edited publisher abstract)
Subject terms:
dementia, quality assurance, community care, systematic reviews, research, performance indicators;
BMC Health Services Research, 19(191), 2019, Online only
Publisher:
BioMed Central Ltd
A majority of nursing home residents have dementia, and many develop neuropsychiatric symptoms. These symptoms are often caused by neuropathological changes in the brain, but modifiable factors related to quality of care also have an impact. A team-based approach to care that include comprehensive geriatric assessments to facilitate clinical decision-making and structured case conference meetings...
(Edited publisher abstract)
A majority of nursing home residents have dementia, and many develop neuropsychiatric symptoms. These symptoms are often caused by neuropathological changes in the brain, but modifiable factors related to quality of care also have an impact. A team-based approach to care that include comprehensive geriatric assessments to facilitate clinical decision-making and structured case conference meetings could improve quality of care and quality of life for the residents. Despite recommendations to adopt this approach, dementia care does not reach standards of evidence-based practice. Better implementation strategies are needed to improve care. A cluster randomised controlled trial with a 12-month intervention was conducted, and the experiences of staff from the intervention nursing homes were explored in a qualitative study after the trial was completed. The aim of the present study was to describe: (i) staff’s experiences with the intervention consisting of comprehensive geriatric assessments of nursing home residents and case conferencing, and (ii) enablers and barriers to implementing and sustaining the intervention. Methods: Four focus groups with a total of 19 healthcare staff were interviewed, representing four out of eight intervention nursing homes. Thematic content analysis was used to interpret the transcribed data. Results: Two major themes emerged: 1) learning experiences and 2) enablers and barriers to implementation. The participants had experienced learning both on an organisational level: improvements in care and an organisation that could adjust and facilitate change; and on an individual level: becoming more conscious of residents’ needs and acquiring skills in resident assessments. Participants described important enabling factors such as managerial support, drivers for change, and feasibility of the intervention for the local nursing home. Barriers to implementing and sustaining the intervention were time constraints, lack of staff training, unsuitable electronic patient record system for care planning and high complexities of care and instabilities that are present in nursing homes. Conclusions: Quality improvements in nursing homes are difficult to sustain. In order to offer residents high quality of care that meet their individual needs, it is important for management and nursing home staff to be aware of and understand factors that enable or constrain change.
(Edited publisher abstract)
Subject terms:
health professionals, dementia, focus groups, qualitative research, case conferences, nursing homes, quality assurance, health care, assessment, skills, policy implementation, staff;
Disability and Rehabilitation: Assistive Technology, early cite 10 February 2019,
Publisher:
Taylor and Francis
Place of publication:
London
Purpose: To review evidence describing how health and social care professionals in England and Wales assess mental capacity, in order to identify ways to improve practice. Methods: A systematised literature review was completed. Electronic databases of published medical, health and social care research and gray literature were searched. Journal articles and research reports published between 2007 and 2018 were included if they met predefined eligibility criteria. Evidence from included studies was synthesised using thematic analysis. Results: 20 studies of variable methodological quality were included. The studies described assessments carried out by a range of multidisciplinary professionals working with different groups of service users in diverse care contexts. Four main themes were identified: preparation for assessment; capacity assessment processes; supported decision-making; interventions to facilitate or improve practice. There was a lack of detailed information describing how professionals provided information to service users and tested their decision-making abilities. Practice reported in studies varied in terms of its conformity to legal requirements. Conclusions: This review synthesised evidence about mental capacity assessment methods and quality in England and Wales and analysed it to suggest ways in which practice might be improved.
(Edited publisher abstract)
Purpose: To review evidence describing how health and social care professionals in England and Wales assess mental capacity, in order to identify ways to improve practice. Methods: A systematised literature review was completed. Electronic databases of published medical, health and social care research and gray literature were searched. Journal articles and research reports published between 2007 and 2018 were included if they met predefined eligibility criteria. Evidence from included studies was synthesised using thematic analysis. Results: 20 studies of variable methodological quality were included. The studies described assessments carried out by a range of multidisciplinary professionals working with different groups of service users in diverse care contexts. Four main themes were identified: preparation for assessment; capacity assessment processes; supported decision-making; interventions to facilitate or improve practice. There was a lack of detailed information describing how professionals provided information to service users and tested their decision-making abilities. Practice reported in studies varied in terms of its conformity to legal requirements. Conclusions: This review synthesised evidence about mental capacity assessment methods and quality in England and Wales and analysed it to suggest ways in which practice might be improved.
(Edited publisher abstract)
Subject terms:
mental capacity, assessment, health professionals, social care professionals, social workers, literature reviews, decision making, mental health, dementia, learning disabilities, quality assurance, evidence-based practice;
Dementia: the International Journal of Social Research and Practice, 18(5), 2019, pp.1764-1776.
Publisher:
Sage
This study evaluated discharge documentation for people with dementia who were discharged home, against expected discharge criteria and determined relationships between compliance scores and outcomes. This cross-sectional study audited discharge documentation and conducted a post discharge survey of carers. There were 73 eligible discharges and clinically significant documentation deficits...
(Edited publisher abstract)
This study evaluated discharge documentation for people with dementia who were discharged home, against expected discharge criteria and determined relationships between compliance scores and outcomes. This cross-sectional study audited discharge documentation and conducted a post discharge survey of carers. There were 73 eligible discharges and clinically significant documentation deficits for people with dementia included: risk assessments of confusion (48%), falls and pressure injury (56%); provision of medication dose-decision aids (53%), provision of contact information for patient support groups (6%) and advance care planning (9%). There was no significant relationship between compliance scores and outcomes. Carer strain was reported to be high for many carers. People with dementia and their carers are more vulnerable and at higher risk of poor outcomes after discharge. There are opportunities for improved provision of medications and risk assessment for people with dementia, provision of information for patient support groups and advanced care planning.
(Edited publisher abstract)
Subject terms:
evaluation, discharge planning, discharge, dementia, carers, service transitions, case records, hospital discharge, quality assurance;
Background: People living with dementia in care homes are regularly admitted to hospital. The transition between hospitals and care homes is an area of documented poor care leading to adverse outcomes including costly re-hospitalisation. This review aims to understand the experiences and outcomes of care for people living with dementia who undergo this transition from the perspectives of key...
(Edited publisher abstract)
Background: People living with dementia in care homes are regularly admitted to hospital. The transition between hospitals and care homes is an area of documented poor care leading to adverse outcomes including costly re-hospitalisation. This review aims to understand the experiences and outcomes of care for people living with dementia who undergo this transition from the perspectives of key stakeholders; people living with dementia, their families and health care professionals. Methods: A systematic search was conducted on the CINAHL, ASSIA, EMBASE, MEDLINE, PsychINFO, and Scopus databases without any date restrictions. Reference lists of included papers were hand searched. Papers were included if they focused on people living with dementia moving from hospital to a short or long term care setting in the community including sub-acute, rehabilitation, skilled nursing facilities or care homes. Titles, abstracts and full texts were screened. Two authors independently evaluated study quality using a checklist. Themes were identified and discussed to reach consensus. Results: In total, nine papers reporting eight studies met the inclusion criteria for the systematic review. A total of 257 stakeholders participated; 37 people living with dementia, 95 family members, and 125 health and social care professionals. Studies took place in Australia, Canada, United Kingdom (UK), and the United States of America (US). Four themes were identified as factors influencing the experience and outcomes of the transition from the perspectives of stakeholders; preparing for transition; quality of communication; the quality of care; family engagement and roles. Conclusion: This systematic review presents a compelling case for the need for robust evidence to guide best practice in this important area of multi-disciplinary clinical practice. The evidence suggests this transition is challenging for all stakeholders and that people with dementia have specific needs which need attention during this period.
(Edited publisher abstract)
Subject terms:
user views, dementia, service transitions, systematic reviews, care homes, hospitals, community care, evidence, older people, quality of life, participation, communication, quality assurance;
Dementia: the International Journal of Social Research and Practice, 18(6), 2019, pp.2140-2157.
Publisher:
Sage
Background: The concept of quality nursing care in a dementia specific unit is perceived as being subject to the interpretation of individuals, nurses and healthcare organisations. As the number of dementia diagnoses increases, understanding what constitutes quality nursing care within dementia specific care units is vital to inform policy makers and healthcare organisations globally. Efforts...
(Edited publisher abstract)
Background: The concept of quality nursing care in a dementia specific unit is perceived as being subject to the interpretation of individuals, nurses and healthcare organisations. As the number of dementia diagnoses increases, understanding what constitutes quality nursing care within dementia specific care units is vital to inform policy makers and healthcare organisations globally. Efforts to identify quality nursing care and improve dementia care within dementia specific care units, may significantly reduce the financial and emotional burden of care-giving and improve the quality of life for individuals living with dementia. This scoping review aimed to examine current literature to gain an understanding of what constitutes quality nursing care in a dementia specific care unit. Design and methods: Five electronic databases (CINAHL, MEDLINE, ProQuest, Social Sciences Citation Index and Ovid) were used to search for articles published in English between 2011 and 2016 focusing on a definition of quality nursing care within dementia specific care units. Findings: Twenty journal articles were identified. From these articles, two content themes were identified: Challenges in the provision of quality nursing care in dementia specific care units, and Standardised approach to quality nursing care in a dementia specific care unit. The articles contained the following research designs, controlled pre-test and post-test design (n = 1), focus group interviews (n = 1), cross sectional survey (n = 6), semi structured interviews (n = 3), narrative review (n = 1), survey (n = 2), literature review (n = 3), systematic review (n = 1), and prospective longitudinal cohort study (n = 2). Conclusions: The concept of quality nursing care in a dementia specific unit remains subject to the interpretation of individuals, nurses and healthcare organisations, with current literature unable to provide a clear definition. Further research into what constitutes quality nursing care in dementia specific care units is recommended.
(Edited publisher abstract)
Subject terms:
quality assurance, nursing, dementia, performance management, nurses, health care, literature reviews;
Dementia: the International Journal of Social Research and Practice, 18(7-8), 2019, pp.2543-2555.
Publisher:
Sage
Resident self-reports are considered the primary source of quality of care information, but proxy reports by family or staff can also be used to supplement or substitute resident reports. This study analyses how the results of proxy reports vary according to residents’ cognition level. The data set used covers proxy reports of family (n = 558) and staff (n = 801), divided by the availability of resident self-reports (family yes n = 289, no n = 269; staff yes 393, no = 408). Family and staff proxies assessed residents’ quality of care as better when resident self-reports were also available, and quality of care tended to be assessed as poorer among those with higher cognitive decline. The results of this methodological study indicate the importance of using several proxy evaluations; however, these can only supplement resident self-reports, not replace them. The interpretation rules acknowledging dependency between residents’ cognition and proxy assessments could be used as a basis for future comparisons of quality improvement in long-term care and for painting a more comprehensive picture of service quality.
(Edited publisher abstract)
Resident self-reports are considered the primary source of quality of care information, but proxy reports by family or staff can also be used to supplement or substitute resident reports. This study analyses how the results of proxy reports vary according to residents’ cognition level. The data set used covers proxy reports of family (n = 558) and staff (n = 801), divided by the availability of resident self-reports (family yes n = 289, no n = 269; staff yes 393, no = 408). Family and staff proxies assessed residents’ quality of care as better when resident self-reports were also available, and quality of care tended to be assessed as poorer among those with higher cognitive decline. The results of this methodological study indicate the importance of using several proxy evaluations; however, these can only supplement resident self-reports, not replace them. The interpretation rules acknowledging dependency between residents’ cognition and proxy assessments could be used as a basis for future comparisons of quality improvement in long-term care and for painting a more comprehensive picture of service quality.
(Edited publisher abstract)
Subject terms:
assessment, cognitive impairment, psychology, long term care, older people, instruments, quality assurance, research methods;