How Stories Can Contribute Toward Quality Improvement in Long-Term Care.

It is important to evaluate how residents, their significant others, and professional caregivers experience life in a nursing home to improve quality of care based on their needs and wishes. Narratives are a promising method to assess this experienced quality of care as they enable a rich understanding, reflection, and learning. In the Netherlands, narratives are becoming a more substantial element within the quality improvement cycle of nursing homes. The added value of using narrative methods is that they provide space to share experiences, identify dilemmas in care provision, and provide rich information for quality improvements. The use of narratives in practice, however, can also be challenging as this requires effective guidance on how to learn from this data, incorporation of the narrative method in the organizational structure, and national recognition that narrative data can also be used for accountability. In this article, 5 Dutch research institutes reflect on the importance, value, and challenges of using narratives in nursing homes.

Regulation of long-term care for older persons: a scoping review of empirical research.

OBJECTIVE: Not only care professionals are responsible for the quality of care but other stakeholders including regulators also play a role. Over the last decades, countries have increasingly invested in regulation of Long-Term Care (LTC) for older persons, raising the question of how regulation should be put into practice to guarantee or improve the quality of care. This scoping review aims to summarize the evidence on regulatory practices in LTC for older persons. It identifies empirical studies, documents the aims and findings, and describes research gaps to foster this field. DESIGN: A literature search (in PubMed, Embase, Cinahl, APA PsycInfo and Scopus) was performed from inception up to December 12th, 2022. Thirty-one studies were included. RESULTS: All included studies were from high-income countries, in particular Australia, the US and Northwestern Europe, and almost all focused on care provided in LTC facilities. The studies focused on different aspects of regulatory practice, including care users' experiences in collecting intelligence, impact of standards, regulatory systems and strategies, inspection activities and policies, perception and style of inspectors, perception and attitudes of inspectees and validity and reliability of inspection outcomes. CONCLUSION: With increasingly fragmented and networked care providers, and an increasing call for person-centred care, more flexible forms of regulatory practice in LTC are needed, organized closer to daily practice, bottom-up. We hope that this scoping review will raise awareness of the importance of regulatory practice and foster research in this field, to improve the quality of LTC for older persons, and optimize their functional ability and well-being.

The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis.

BACKGROUND: Informal caregivers of people living with dementia experience a higher level of physical and mental stress compared with other types of caregivers. Psychoeducation programs are viewed as beneficial for building caregivers' knowledge and skills and for decreasing caregiver stress. OBJECTIVE: This review aimed to synthesize the experiences and perceptions of informal caregivers of people with dementia when participating in web-based psychoeducation programs and the factors that enable and impede informal caregivers' engagement in web-based psychoeducation programs. METHODS: This review followed the Joanna Briggs Institute protocol of systematic review and meta-aggregation of qualitative studies. We searched 4 English databases, 4 Chinese databases, and 1 Arabic database in July 2021. RESULTS: A total of 9 studies written in English were included in this review. From these studies, 87 findings were extracted and grouped into 20 categories. These categories were further synthesized into 5 findings: web-based learning as an empowering experience, peer support, satisfactory and unsatisfactory program content, satisfactory and unsatisfactory technical design, and challenges encountered in web-based learning. CONCLUSIONS: High-quality and carefully designed web-based psychoeducation programs offered positive experiences for informal caregivers of people living with dementia. To meet broader caregiver education and support needs, program developers should consider information quality and relevancy, the support offered, individual needs, flexibility in delivery, and connectedness between peers and program facilitators.

Correlations between care users' and the healthcare inspectorate's ratings of the quality of care in long-term care homes.

OBJECTIVES: Increasing emphasis is being placed on person-centredness as a quality requirement for long-term care (LTC). Although healthcare inspectorates value the importance of care users' experiences, they struggle to address these experiences in regulatory practice. The aim of this study is to explore the correlations between care users' and the healthcare inspectorate's ratings of the quality of LTC in The Netherlands. DESIGN: The correlations between care users' ratings from a public Dutch online patient rating site and the Dutch Health and Youth Care Inspectorate's ratings of the quality of care were examined using Spearman rank correlations. The inspectorate's ratings cover three themes: 'attention to person-centred care', 'working towards sufficient and competent care staff' and 'focusing on quality and safety'. SETTING: Ratings of the quality of care were obtained for 200 LTC homes in The Netherlands between January 2017 and March 2019. These LTC homes had 6 to 350 residents (M=89; SD=57) and belonged to organisations with 1-40 LTC homes in total (M=6; SD=6). PARTICIPANTS: Publicly available anonymous ratings of the perceived quality of care by care users were extracted from the Dutch patient rating website 'www.zorgkaartnederland.nl'. Care users' ratings were available for the 2 years prior to an assessment by the inspectorate for 200 LTC homes. RESULTS: We found a weak, significant correlation between the mean care users' ratings and the inspectorate's aggregated scores for the theme 'person-centred care' (r=0.26, N=200, padj<0.01); no other correlations were significant. CONCLUSIONS: This study showed only a weak correlation between care users' ratings and ratings of the Dutch Inspectorate of the quality of 'person-centred care' in LTC homes. Therefore, it may be fruitful to intensify or innovate approaches to involve care users' experiences in regulation to do them justice.

How are regulatory oversight organisations using long-term care performance indicators: a qualitative descriptive study in 10 high-income countries.

OBJECTIVES: Regulatory oversight organisations play an important role in quality stewardship in long-term care (LTC) facilities. Performance indicators are a key tool for any quality-related work. Our aim was to better understand how and what performance indicators are used by regulatory oversight organisations for long-term care facilities oversight and which features are affecting their fitness for use. DESIGN: Qualitative descriptive. SETTING AND PARTICIPANTS: We explored the use of LTC facility performance indicators by 10 regulatory oversight organisations from England, Ireland, Malta, New Zealand, Norway, Scotland, Singapore, Slovenia, Sweden and the Netherlands. We collected information by means of a questionnaire, 13 follow-up interviews with 20 experts from these organisations and document review. RESULTS: Performance indicators are used by participating oversight organisations to choose priority topics for audits, prioritise facilities to be audited and to identify areas within an audited facility, that require more attention. The indicators of most interest to oversight organisations are related to the dimensions of care articulated in the preset requirements on which audits are based. When the purpose of using indicators is to design a risk assessment model, the fitness for use of indicators ultimately depends on their ability to predict non-compliances on subsequent audits. When indicators are used directly by auditors, the ease of access, clear guidance to evaluate the data and the provision of contextual information are used by oversight organisations to increase fitness for use. CONCLUSIONS: Oversight organisations do not use LTC facility performance indicators to assess quality, but rather to assess the risk of lower quality or of non-compliance with requirements. This risk-related purpose has to be considered when the indicators used in oversight are chosen and when other aspects of fitness for use, such as data analysis and displaying findings, are developed.

Digital Technologies to Prevent Social Isolation and Loneliness in Dementia: A Systematic Review.

BACKGROUND: Dementia poses significant and sustained challenges to global society. Diagnosis can lead to increased feelings of loneliness and social isolation. People with dementia living alone are particularly at risk. Considering the growing number of technologies proposed to aid people with dementia address social isolation and loneliness, we reviewed the existing literature. OBJECTIVE: To collate and summarize current evidence for digital technologies to prevent social isolation and loneliness for people with dementia. METHODS: Following the PRISMA guidelines, we systematically searched five databases to identify studies of digital technologies designed to support or prevent social isolation or loneliness for people with dementia. Pre-specified outcomes included social isolation, loneliness, and quality of life. We used deductive thematic analysis to synthesize the major themes emerging from the studies. RESULTS: Ten studies met our inclusion criteria where all studies reported improvements in quality of life and seven reported benefits regarding social inclusion or a reduction in loneliness. Technologies were varied across purpose, delivery format, theoretical models, and levels of personalization. Two studies clearly described the involvement of people with dementia in the study design and five technologies were available outside the research context. CONCLUSION: There is limited- but increasing- evidence that technologies hold potential to improve quality of life and reduce isolation/loneliness for people with dementia. Results presented are largely based in small-scale research studies. Involvement of people with dementia was limited and few research concepts are reaching implementation. Closer collaboration with people with dementia to provide affordable, inclusive, and person-centered solutions is urgently required.

Involvement, worries and loneliness of family caregivers of people with dementia during the COVID-19 visitor ban in long-term care facilities.

To prevent COVID-19 from spreading in long-term care facilities (LTCFs), the Dutch government took restrictive measures, including a visitor-ban in LTCFs. This study examined the relationship between involvement of family caregivers (FCs) of people with dementia (PwD) living in LTCFs and FCs mental health during the visitor-ban, and whether this relationship was moderated by the frequency of alternative contact with PwD during the visitor-ban and FC resilience. This cross-sectional study collected data from 958 FCs. FCs who visited PwD more frequently before, were more worried during the visitor-ban than those with lower visiting frequency. FCs who visited the PwD daily before, but had minimal weekly contact during the visitor-ban, worried less. Resilient FCs who did social and task-related activities before, experienced less loneliness during the visitor-ban. It is advisable for healthcare professionals to reach out to these groups, to facilitate ongoing contact and help them overcome their loneliness.

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background.

BACKGROUND: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. METHODS: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. RESULTS: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach's alpha: 0.94). The CFA indicated that the factor 'Self-perceived Pressure from Informal Care' explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). CONCLUSIONS: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

Adaptation of an online training and support program for caregivers of people with dementia to Indian cultural setting.

Support for caregivers of people with dementia has been identified as an action area in the Global Action Plan on the Public Health Response to Dementia 2017-2025 by the World Health Organization (WHO). As a step towards that, WHO developed iSupport - an online program to provide support and training for caregivers of people with dementia. To address the need of caregivers in India, the iSupport program was adapted to the Indian cultural setting. The process of adaptation consisted of four phases: (a) information gathering (review of literature and focus group discussions), (b) preliminary adaptation design (modifications using an adaptation guide), (c) preliminary adaptation tests (face-to-face interviews and online test run), and (d) adaptation refinement (final modifications to the intervention and study process). The initial adaptation was carried out by effecting changes in words, names, resources, caregiving scenarios and audio files to make the English version of iSupport suitable to the Indian cultural context. The results of the qualitative adaptation tests provided additional recommendations like changing the links to India specific websites, revising the eligibility criterion for caregiving duration, re-wording of e-mail texts, inclusion of a time estimate required to complete the assessments and decreasing the numbers of screens that the caregivers had to navigate in the program, which were incorporated in the final phase. Preliminary data showed that the caregivers who participated in the adaptation process found the changes acceptable. Translation of iSupport to different Indian languages could be undertaken after initial effectiveness of the program is established.

Feasibility and preliminary effectiveness of an online training and support program for caregivers of people with dementia in India: a randomized controlled trial.

OBJECTIVES: Internet-based interventions involving elements of cognitive behavior therapy, psychoeducation, relaxation and skills training for caregivers of people with dementia have been found to be promising in Western countries. Given these outcomes, the adapted version of a multi-component online caregiver skills training and support program of the World Health Organization, called iSupport, was tested for feasibility and preliminary effectiveness in India. METHODS: One hundred fifty-one caregivers of family members with a diagnosis of Alzheimer's disease or dementia were randomized to either the intervention arm (iSupport; n = 74) or to the control group (an education-only e-book program; n = 77). Participants were assessed using self-rated measures of depression and perceived burden, which were the primary outcome measures, at baseline and 3-month follow-up. Person-centered attitude, self-efficacy, mastery and self-rated health were also assessed. RESULTS: Fifty-five caregivers (29 in the iSupport group and 26 in the control condition) completed the study. The recruitment and retention rate of the study were 44.67% and 36.42% respectively. No significant differences were found between the two groups at 3-month follow-up on the primary outcomes. Among the secondary outcomes, significant improvement was only seen in caregivers' person-centered attitude towards persons with dementia in the iSupport group (t = 2.228; p < 0.05). CONCLUSIONS: Despite efforts to recruit and retain participants to the online program, this study had a low recruitment and retention rate, which require closer attention and indicates a need for further adaptations of the Indian version of the iSupport program to improve its acceptability and accessibility. The lessons learned from this study will guide the further development of caregiver training and support interventions in India. The trial was registered with the Clinical Trials Registry-India (Trial Registration No. CTRI/2017/02/007876).

Stakeholders' perspectives on adapting the World Health Organization iSupport for Dementia in Australia.

BACKGROUND: In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. AIM: The aim of the study was to identify stakeholders' perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. METHODS: An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May-July 2018. A thematic analysis was utilised to analyse data and identify findings. RESULTS: In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. CONCLUSION: Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers.

Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study.

OBJECTIVES: There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. METHODS: Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. RESULTS: The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. CONCLUSIONS: The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. CLINICAL IMPLICATIONS: The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings.

Use and impact of the Alzheimer Experience: a free online media production to raise public awareness and enhance knowledge and understanding of dementia.

Objectives: This study aims to evaluate an online media production called 'the Alzheimer Experience' (AlzExp), which was developed to raise public awareness and enhance knowledge and understanding of dementia.Method: Before and after watching AlzExp, all visitors of AlzExp (February-June 2012) were asked to complete questionnaires on demographics, knowledge about dementia, attitude towards people with dementia (person-centeredness) and the use of AlzExp. McNemar's chi-squared test, multivariate linear regression analysis and paired t-tests were used to analyze change in knowledge, predictors for change in person-centered attitude and differences between subgroups in change in person-centered attitude.Results: Participants in this study (n = 213) were mostly professionals and working with people with dementia, or had someone with dementia among their acquaintances. An increase of person-centered attitude between pre- and posttest was predicted by age, having a professional or personal relationship with someone with dementia, person-centeredness at pre-test and time spent in AlzExp. Professionals had a more person-centered attitude after watching AlzExp, as did younger people, those who spent more time in AlzExp and those who had a lower score at pre-test.Conclusion: The beneficial impact of AlzExp found in this study was modest and in particular present for people who deal with people with dementia (professionally or personally). More insight is needed in the effects of tools aimed at raising public awareness and enhancing knowledge and understanding of dementia to tackle stigmatization associated with dementia and, thereby, improving the quality of life of people with dementia and their caregivers.

Nursing home care for people with dementia: Update of the design of the Living Arrangements for people with Dementia (LAD)-study.

AIM: The aim of the current study is to describe the extended design of the Living Arrangements for people with Dementia (LAD)-study. BACKGROUND: The demand for long-term care in care homes increases with the growing number of people with dementia. However, quality of care in care homes needs improvement. It is important to monitor quality of care in care homes for the purposes of conducting scientific research, providing input for policy, and promoting practice improvement. DESIGN: The Living Arrangements for people with Dementia -study monitors changes in - quality of - care in care homes since 2008. With its extended design, the Living Arrangements for people with Dementia -study now also focuses on additional topics that are considered to improve quality of care: implementation of person-centred care, involvement of family carers and volunteers and reducing psychotropic drugs and physical restraints using a multidisciplinary approach. METHODS: The data collection of the Living Arrangements for people with Dementia -study entails an interview with the manager and questionnaires are completed by care staff, family carers, volunteers, and multidisciplinary team members. This study is partly funded by the Dutch Ministry of Health, Welfare and Sports, grant number 323,088 and partly funded by the participating care homes. DISCUSSION: Results of the Living Arrangements for people with Dementia -study will shed more light on variables related to quality of care in care homes for people with dementia. IMPACT: Based on the obtained information, appropriate efforts to improve quality of care can be discussed and implemented. Furthermore, the results of this study guide policy making, because it expands knowledge about the effects of changing policies and exposes topics that need further attention. TRIAL REGISTRATION: Not applicable. This article does not report the results of a healthcare intervention on human participants.

Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study.

BACKGROUND: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them. OBJECTIVE: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts. METHODS: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses' registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts. RESULTS: The actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses' evaluations about providing self-management support online were mixed as it was a relatively new task for them. CONCLUSIONS: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.