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.

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).

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.

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.

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.

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.

The course of neuropsychiatric symptoms in patients with dementia in primary care.

BACKGROUND: During the course of dementia, most people develop some type of neuropsychiatric symptoms (NPS), which result in lower quality of life, high caregiver burden, psychotropic drug use and a major risk of institutionalization. Studies on NPS in people with dementia have been mainly conducted in clinical centres or psychiatric services. OBJECTIVES: To investigate the course of NPS in people with dementia in primary care. METHODS: Analysis of (cumulative) prevalence and incidence, persistence and resolution based on data collected during an assessment at home of a prospective naturalistic cohort study in primary care in a sample of 117 people with dementia and their informal caregivers. Subsyndromes of NPS were assessed with the Neuropsychiatric Inventory (NPI) and Cohen-Mansfield Agitation Inventory. Multivariate analyses were used to detect determinants for the course of NPS. RESULTS: The mean age of the people with dementia was 78.6 years, and 52% were female. Mean Mini-Mental State Examination total score was 19.5, mean NPI total score 15.7. The most prevalent clinically relevant subsyndromes of the NPI were hyperactivity and mood/apathy, and the most prevalent individual NPS were aberrant motor behaviour (28%), agitation/aggression (24%) and apathy/indifference (22%). Of the people with dementia, 72.3% had one or more symptoms of the mood/apathy and 75.3% of the hyperactivity subsyndrome. CONCLUSIONS: GPs should be aware of NPS in people with dementia and should actively identify them when they visit these patients or when informal caregivers consult them. Timely diagnosing facilitates adequate professional care.

Exploring the usefulness of indicators for referring people with dementia and their informal caregivers to activating interventions: a qualitative analysis of needs assessments.

BACKGROUND: People with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions. METHODS: A dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes. RESULTS: Both PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories. CONCLUSIONS: Needs-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad.

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.

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.

Neuropsychiatric symptoms and psychotropic drug use in patients with dementia in general practices.

Background: Neuropsychiatric symptoms (NPS) frequently occur in community-dwelling patients with dementia and they are also frequently prescribed psychotropic drugs. The prescription of psychotropic drugs has been found to be associated with the level of NPS. Data on NPS in patients with dementia in general practices are scarce. Objectives: The aim of this study was to assess the prevalence rates of NPS and psychotropic drug use (PDU) in patients with dementia in general practices. Methods: We analyzed data from the baseline measurement of a prospective cohort study in a sample of (Dutch) patients in general practices. Prevalence rates of NPS and subsyndromes assessed with the Neuropsychiatric Inventory (NPI) and of PDU were calculated. Prevalence rates of individual NPS are presented both as clinically relevant symptoms (NPI symptom score ≥ 4) and as prevalence rates of symptoms with symptom score > 0. Results: Of the 117 patients, more than 90% had at least one symptom and more than 65% had at least one clinically relevant symptom. The most common NPS were agitation/aggression, dysphoria/depression and irritability/lability. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference. Only 28.7% of the patients used at least one, 7.0% used at least two different and 1.7% used at least three different types of psychotropic drugs (excluding anti-dementia medication). Conclusions: NPS are highly prevalent in patients with dementia in general practices, but PDU is rather low. The most common clinically relevant NPS were aberrant motor behaviour, agitation/aggression and apathy/indifference.

Indicators to estimate the appropriateness of activating interventions for people living with dementia and for their informal caregivers.

OBJECTIVES: Dyadic activating interventions support both people with dementia and their informal caregivers to maintain activities. For a person-centered approach referrers need insight in how specific interventions might meet individual needs, characteristics, and preferences of a dyad. This study aimed to develop a set of indicators for three psychosocial dyadic, activating interventions. METHOD: We used the 'RAND Appropriateness Method' directed at agreement on indicators within a panel of experts. Qualitative research had identified 31 relevant conceptual indicators. A panel of 12 experts in dementia care rated the extent to which these indicators are recognizable in their clinical practice. Indicators with median ratings in the top third segment of the nine-point-scale were considered recognizable. RESULTS: 18/31 conceptual indicators (58%) were found recognizable in 75%-90% of the panelists' clients. Although consensus on the recognizability of some indicators about the need or preference for physical and social activities was lacking, the respondents nevertheless recommended including these in regular assessments. Other indicators were judged too difficult to recognize in clinical practice. CONCLUSION: The selected indicators offer guidance to referrers on what intervention(s) to choose, and discuss the appropriateness in a shared decision-making process, thus contributing to a person-centered approach.

A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study.

OBJECTIVE: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. METHODS: A pre-test-post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. RESULTS: Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. CONCLUSION: TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

The World report on ageing and health: a policy framework for healthy ageing.

Although populations around the world are rapidly ageing, evidence that increasing longevity is being accompanied by an extended period of good health is scarce. A coherent and focused public health response that spans multiple sectors and stakeholders is urgently needed. To guide this global response, WHO has released the first World report on ageing and health, reviewing current knowledge and gaps and providing a public health framework for action. The report is built around a redefinition of healthy ageing that centres on the notion of functional ability: the combination of the intrinsic capacity of the individual, relevant environmental characteristics, and the interactions between the individual and these characteristics. This Health Policy highlights key findings and recommendations from the report.

Volunteer provision of long-term care for older people in Thailand and Costa Rica.

PROBLEM: Demand for long-term care services for older people is increasing rapidly in low- and middle-income countries. Countries need to establish national long-term care systems that are sustainable and equitable. APPROACH: The Governments of Costa Rica and Thailand have implemented broadly comparable interventions to deploy volunteers in long-term home care. Both countries trained older volunteers from local communities to make home visits to impoverished and vulnerable older people and to facilitate access to health services and other social services. LOCAL SETTING: Costa Rica and Thailand are upper-middle-income countries with strong traditions of community-based health services that they are now extending into long-term care for older people. RELEVANT CHANGES: Between 2003 and 2013 Thailand's programme trained over 51 000 volunteers, reaching almost 800 000 older people. Between 2010 and 2016 Costa Rica established 50 community care networks, serving around 10 000 people and involving over 5000 volunteers. Despite some evidence of benefits to the physical and mental health of older people and greater uptake of other services, a large burden of unmet care needs and signs of a growth of unregulated private services still exist. LESSONS LEARNT: There is scope for low- and middle-income countries to develop large-scale networks of community-based long-term care volunteers. The capacity of volunteers to enhance the quality of life of clients is affected by the local availability of care services. Volunteer care networks should be complemented by other initiatives, including training about health in later life for volunteers, and investment in community long-term care services.

Organizing integrated health-care services to meet older people's needs.

In most countries, a fundamental shift in the focus of clinical care for older people is needed. Instead of trying to manage numerous diseases and symptoms in a disjointed fashion, the emphasis should be on interventions that optimize older people's physical and mental capacities over their life course and that enable them to do the things they value. This, in turn, requires a change in the way services are organized: there should be more integration within the health system and between health and social services. Existing organizational structures do not have to merge; rather, a wide array of service providers must work together in a more coordinated fashion. The evidence suggests that integrated health and social care for older people contributes to better health outcomes at a cost equivalent to usual care, thereby giving a better return on investment than more familiar ways of working. Moreover, older people can participate in, and contribute to, society for longer. Integration at the level of clinical care is especially important: older people should undergo comprehensive assessments with the goal of optimizing functional ability and care plans should be shared among all providers. At the health system level, integrated care requires: (i) supportive policy, plans and regulatory frameworks; (ii) workforce development; (iii) investment in information and communication technologies; and (iv) the use of pooled budgets, bundled payments and contractual incentives. However, action can be taken at all levels of health care from front-line providers through to senior leaders - everyone has a role to play.

Dans la plupart des pays, un changement fondamental de priorité dans l'organisation des soins cliniques destinés aux personnes âgées est nécessaire. Plutôt que d'essayer de gérer la variété des maladies et symptômes de manière individuelle, l'accent devrait être mis sur les interventions qui optimisent les capacités physiques et mentales des personnes âgées sur tout leur parcours de vie et qui leur permettent de continuer de réaliser les activités qui comptent pour elles. Mais cela suppose de modifier le mode d'organisation des prestations, avec une meilleure intégration à l'intérieur du système de santé et entre les services de santé et d'aide sociale. Cela ne signifie pas que les structures existantes doivent fusionner, mais plutôt qu'une grande diversité de prestataires doit travailler ensemble de manière plus coordonnée. Des données factuelles montrent que des prestations de santé et d'aide sociale intégrées entraînent de meilleurs résultats sur la santé des personnes âgées que les prestations de soins habituelles, pour un coût équivalent; d'où l'obtention d'une meilleure rentabilité des investissements comparativement aux modes de travail classiques. Elles permettent aussi aux personnes âgées de s'impliquer socialement et d'apporter leurs contributions à la société pendant plus longtemps. Une telle intégration est particulièrement importante au niveau des soins cliniques: des évaluations exhaustives devraient être réalisées chez les personnes âgées dans une optique d'optimisation de leurs capacités fonctionnelles, et les plans de soins devraient être communs à tous les prestataires. Au niveau du système de santé, l'intégration des prestations nécessite: (i) l'adoption de politiques, programmes et cadres réglementaires favorables; (ii) le développement du personnel de santé; (iii) un investissement dans les technologies de l'information et de la communication; et (iv) la mise en place de budgets communs, de paiements regroupés et de mesures contractuelles incitatives. Toutefois, des actions peuvent être entreprises à tous les niveaux d'organisation des soins de santé, depuis les prestataires de première ligne jusqu'aux hauts responsables ­ tout le monde a un rôle à jouer.

En la mayoría de países se necesita un cambio fundamental en el enfoque de la atención clínica que reciben las personas mayores. En lugar de intentar gestionar numerosas enfermedades y síntomas por separado, debería ponerse énfasis en las intervenciones que optimizan las capacidades físicas y mentales de las personas mayores durante su vida y que les permitan hacer lo que ellos valoran. Esto, a su vez, requiere un cambio en la forma en la que se organizan los servicios: debería haber más integración dentro del sistema sanitario y entre los servicios sanitarios y sociales. Las estructuras organizativas existentes no deben fusionarse, sino que el amplio conjunto de proveedores de servicios debe trabajar conjuntamente de una forma más coordinada. Las pruebas indican que la atención sanitaria y social integrada para las personas mayores contribuye a unos mejores resultados sanitarios a un coste equivalente a la atención habitual. De esta forma, se obtiene una mayor rentabilidad de la inversión que la obtenida con formas de trabajar más familiares. Además, las personas mayores pueden participar y contribuir en la sociedad durante más tiempo. La integración a nivel de la atención clínica es especialmente importante: las personas mayores deberían someterse a asesoramiento integral con el objetivo de optimizar la capacidad funcional, y deberían compartirse los planes de atención entre todos los proveedores. A nivel del sistema sanitario, la atención integrada requiere: (i) política, planes y marcos normativos de apoyo; (ii) desarrollo del personal sanitario; (iii) inversión en tecnologías de la información y comunicación; y (iv) el uso de presupuestos y pagos combinados e incentivos contractuales. No obstante, esto puede realizarse en todos los niveles de la atención sanitaria, desde los proveedores de primera línea hasta el personal directivo; todos juegan un papel.