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The Kintun program for families with dementia: From novel experiment to national policy (innovative practice)
Abstract
The Kintun program is the first public health strategy specifically designed for dementia care in Chile. It was launched in 2013 in the city of Santiago with support from the National Service for the Elderly and the Municipality of Peñalolén. Using an interdisciplinary team, the program seeks to promote community integration and better support for persons with dementia and their caregivers. The multicomponent program includes: an activity-based day care center, training and education of family caregivers, home visits, and community outreach to increase dementia awareness. Case management helps to monitor ongoing needs and link families to resources. To date, 259 dyads (persons with dementia and their families) have been enrolled in the program. Due to its success in 2015, the Kintun program received funding from the Ministry of Health. This has led to the integration of previously disparate initiatives, better consistency across services, and the development of a comprehensive national dementia plan for Chile.
... It has been estimated that over half a million people will have dementia by 2050 (5,6). However, the health system is not prepared to tackle the challenge of increasing numbers of people with dementia, with inadequate numbers of dementia specialists, a lack of primary care training in dementia, and low numbers of daycare centers (7)(8)(9). There are few studies on the costs of dementia in Chile; however, it has been reported that families with a person living with dementia spend over 1,400 US dollars per month on care, mainly due to indirect costs. ...
... As the Plan was in a pilot stage, it was initially decided that CMYN would only assess referrals from the primary care centers of Peñalolen, where according to the Plan, services and supports for dementia care were implemented in primary care centers as well as the provision of a Kintun, i.e., a daycare for dementia, that has been described elsewhere (8). However, since the hospital is a referral center for eight other communes in the eastern metropolitan area, CMYN quickly extended its services to patients from this larger area, regardless of whether they have facilities for dementia care within the primary care centers. ...
The development of healthcare services for dementia is key to improving access to care and post-diagnostic support for people living with dementia. Memory Units have emerged as a new healthcare service composed of multidisciplinary teams with the goal of improving diagnosis and/or management of dementia patients. The main objective of this study was to describe and evaluate the Reach and Effectiveness of a Memory Unit in a public hospital in Chile, using the RE-AIM model, a multi-component model that allows for the evaluation of the implementation of ongoing healthcare programs. Regarding “R” (Reach): from March 2018 up to June 2019, a total of 510 patients were referred and assessed. Most patients came from primary care (51.9%) and from outpatient services at the Hospital Salvador (39.2%), particularly from the Neurology (63.3%) and Psychiatry (16.0%) departments. We estimated that our Memory Unit assessed 5.39% of all of the dementia patients living in the area of referral. With respect to “E” (Effectiveness): 419 patients are still being followed up at the Memory Unit. Ninety-one patients (18%) were discharged. Of these, 55 (66%) were referred to primary healthcare, 28 (31%) to other outpatient services, 9 (10%) to a specialized mental healthcare center, and 9 (10%) to a daycare center. Due to the short period of time that the Memory Unit has been operating, no other RE-AIM dimensions could be evaluated at this juncture. To our knowledge, this is the first implementation study of a Memory Unit in Latin America, and the first using the RE-AIM model. Although cultural differences worldwide might play a role in the lack of international guidelines, the publication of the experience of the first year of this unit in Chile could inform new countries about this process. Ongoing challenges include continuing to collect data to complement the RE-AIM evaluation and developing a protocol that can be adopted elsewhere in Chile and Latin America. Further studies are needed to assess the benefits of a Memory Unit in comparison to regular care and to develop a model that assures continuity and coordination of care for people with dementia.
... En el año 2013 inició su funcionamiento el primer Centro Diurno para personas con demencias y sus entornos de apoyo, Kintun, proyecto piloto financiado por el Servicio Nacional del Adulto Mayor (SENAMA) y la Ilustre Municipalidad de Peñalolén. Los centros diurnos o centros comunitarios de apoyo a la demencia, son dispositivos que brindan un apoyo especializado a personas que requieran intervenciones más intensivas en un periodo de tiempo con foco en el ajuste ambiental, capacidad de cuidado del entorno y solución de problemas psicosociales (Gajardo, Aravena, Budinich, Larraín, Fuentes y Gitlin, 2017). ...
... Meeting Centers Support Program [175,176] Kintun [177,178] Respitality [179,180] Montessori [181,182] DAYS BLG! [183][184][185] CASCADE [186] Social and care farming: Services that have been adapted from a farm setting, using farm resources to promote health. Use of commercial farms and agriculture to promote physical and mental health, by partaking in normal farming activities. ...
Dementia is a global health priority, with huge human and financial costs. Over 50 million people worldwide live with dementia, a figure which is set to rise to 130 million by 2050. The current cost of dementia to the global economy is a staggering $1 trillion per year.
Around 60% of people with dementia live in low- and middle-income countries (LMICs), countries in which population ageing is occurring at the most rapid rate and which already have the least capacity to cope. Key challenges in these regions include limited reliable epidemiological data, poor public understanding of dementia, inadequate health and social care systems and a lack of coherent, national or transnational dementia strategies. These challenges require concerted effort towards innovative, collaborative and technology-driven solutions involving clinicians, academics, engineers, economists and policymakers.
LMICs also present new opportunities for globally relevant dementia research: for example, the study of novel genetic and environmental factors that modify vulnerability and resilience to disease, as well as innovative approaches to dementia diagnosis and care in resource-poor situations. Whilst some established institutions in the developing world are already engaged in exploring these research opportunities, there is enormous potential for benefit from greater international exposure and collaboration.
The 2015 World Health Organization First Ministerial Conference on dementia concluded that “A sustained global effort is required to promote action on dementia and address the challenges posed by dementia and its impacts. No single country, sector or organization can tackle these challenges alone.” The aim of this Research Topic is to bring together, in one volume, research addressing problems that specifically relate to the impact of dementia in the developing world. In doing so, we hope to identify new challenges for future investigation.
We welcome submissions from a broad range of disciplines and are particularly interested in work that illustrates the collaborative coming together of disciplines and centers. Topics that will be considered include, but are not restricted to, epidemiology, diagnosis (clinical, neuropsychology, biomarkers, imaging), genetics, modifiable risk factors, treatment, diversity and under-represented populations, health economics, social science and public policy. Whilst submissions covering the full range of article types are encouraged, we are particularly interested in Original Research on dementia that specifically addresses issues relating to the LMIC context.
Objectives
Community-based support for people with earlier-stage dementia and their care partners, such as regularly meeting groups and activities, can play an important part in postdiagnostic care. Typically delivered piecemeal in the UK, by a variety of agencies with inconsistent funding, provision is fragmented and many such interventions struggle to continue after only a short start-up period. This realist review investigates what can promote or hinder such interventions in being able to sustain long term.
Methods
Key sources of evidence were gathered using formal searches of electronic databases and grey literature, together with informal search methods such as citation tracking. No restrictions were made on article type or study design; only data pertaining to regularly meeting, ongoing, community-based interventions were included. Data were extracted, assessed, organised and synthesised and a realist logic of analysis applied to trace context–mechanism–outcome configurations as part an overall programme theory. Consultation with stakeholders, involved with a variety of such interventions, informed this process throughout.
Results
Ability to continually get and keep members; staff and volunteers; the support of other services and organisations; and funding/income were found to be critical, with multiple mechanisms feeding into these suboutcomes, sensitive to context. These included an emphasis on socialising and person-centredness; lowering stigma and logistical barriers; providing support and recognition for personnel; networking, raising awareness and sharing with other organisations, while avoiding conflict; and skilled financial planning and management.
Conclusions
This review presents a theoretical model of what is involved in the long-term sustainability of community-based interventions. Alongside the need for longer-term funding and skilled financial management, key factors include the need for stigma-free, person-centred provision, sensitive to members’ diversity and social needs, as well as the need for a robust support network including the local community, health and care services. Challenges were especially acute for small scale and rural groups.
This article discusses the results of a content and critical discourse analysis of Canadian federal policy documentation relating to the development of a national Canadian dementia strategy. These documents span from 2013 and focus upon Canadian federal policy directives and directions up to the release, and including the release, of a national strategy in June 2019. The analyses, supplemented by a subtextual examination of these documents guided by Bacchi's (2012) "What's the Problem Represented to be?" framework, focuses upon the treatment of gender in policy documentation and the specific gender related policy framework, known as GBA+ (gender-based analysis and intersectionality), which is intended to bring about health equity to disadvantaged groups. As women, particularly, working class women and their carers, as well as women with additional intersecting factors, such as being lesbian or bisexual, are less likely to receive the dementia related care and services they need, precipitating a premature move to residential care, GBA+ is an essential policy framework in the attempt to address these inequities. However, findings point to a superficial treatment of gender, GBA and GBA+ in federal policy documents and lack a meaningful invocation of women's gendered and intersectional lived experiences of dementia. Additionally, the Canadian federal government's Dementia Strategy for Canada: Together We Aspire (2019) is grounded in a rendition of citizenship that do not work to unearth the complex relationships between citizenship, old age, gender and intersectional factors. As a result, the Dementia Strategy for Canada: Together We Aspire (2019) presents a version of citizenship that homogenizes older adults and prevents representations of older adults as diverse, complex and continually changing groupings. Therefore, inspired by Bartlett et al. (2018), I advocate for the application of a feminist and intersectional citizenship lens in Canadian federal dementia-related policymaking documentation going forward.
El libro "Demencias: una mirada biopsicosocial " presenta una mirada integradora de los fundamentos y estrategias para el trabajo con personas con demencia y sus entornos de apoyo, y busca poner a disposición de los equipos de salud y ciencias sociales un conjunto de herramientas para favorecer la salud y calidad de vida de las personas con problemas cognitivos y quienes les apoyan. Compila aspectos clínicos, epidemiológicos, de políticas en salud, evidencia científica en su abordaje y aprendizajes desde experiencias locales de diseño e implementación.
Corresponde a un esfuerzo cooperativo entre profesionales de diversas áreas.
Para acceder a la versión digital del libro, basta con registrarse gratuitamente en el sitio www.demencias.cl
Dementia has become a priority for public health. The increasing number of persons with dementia and the insufficient social and health resources for support challenge the development of specific strategies to address this condition. The World Health Organization highlights the need to count on biopsychosocial plans or strategies to face dementia in each country. In this scenario, this article offers a review of the context of health and social policy related to dementia in Chile and milestones towards the development of a National Plan for dementia, considering the important international events that have occurred. Dementia should be considered a complex health and social problem that requires a coordinated approach by different sectors of social activity with the purpose of prevention and the contribution to a high quality of life of the persons who live with dementia and the social environments that support them.
O Chile está num avançado estágio de transição epidemiológica, com a população de 60 anos ou mais representando 15% da população total e o número de idosos tem mais que dobrado entre 1990 e 2014. O rápido avanço econômico tem promovido significantes mudanças na organização social para as quais o país não está habituado. Os problemas de saúde mental em idosos são particularmente desafiadores para as estruturas sociais e de saúde atuais do país. A prevalência de demência entre aqueles com idade superior a 60 anos excede 8% e é mais elevada na população rural. Há mais treinamento em demência na população médica e comunidade científica locais, aumentando o conhecimento dentro da comunidade civil, porém, com insuficiente resposta do estado às necessidades diagnósticas e terapêuticas de pacientes e cuidadores. O objetivo deste estudo foi providenciar uma atualização da informação sobre demência no contexto de envelhecimento cerebral do Chile.
Background
Caring for a person with dementia is associated with well-documented increases in burden and distress and decreases in mental health and wellbeing. Studies assessing burden in caregivers of patients with dementia and its determinants are scarce in Latin America.
Objective
The main objective of this study was to assess the extent and the determinants of burden in informal primary caregivers of patients with dementia in Chile.
Methods
A descriptive study was conducted using clinically validated scales to assess dementia characteristics and to measure caregiver variables. Family socio-demographic characteristics and functional status, patient functional dependency and behavioral disturbances, and caregiver psychiatric morbidity were analyzed as independent variables to determine caregiver burden.
Results
Two hundred and ninety-two informal caregivers were included. There were more female (80%) than male caregivers, consisting mainly of daughters and spouses of the patients. Severe burden was reported in 63% of the caregivers, and 47% exhibited psychiatric morbidity. Burden was associated with caregiver psychiatric distress, family dysfunction, severity of neuropsychiatric symptoms and functional disability, but neither patient age, gender, nor socioeconomic status impacted burden.
Conclusion
Our results underscore the importance of assessing the consequences of dementia in both caregivers and patients in order to evaluate the real biopsychosocial impact of dementia, as well as the importance of planning appropriate and effective public health interventions in Latin American countries. In addition, interventions targeting caregiver psychological distress, caregiver familial dysfunction, patient neuropsychiatric disorders, and patient functional disability could potentially diminish caregiver burden.
Objective:
To describe and compare socioeconomic inequalities in the onset and progression of disability in a cohort of Chilean community-dwelling older people that provides unprecedented information about this process in Chile.
Methods:
The data were drawn from a 10-year longitudinal study (2000-2010) that followed a probabilistic and representative sample of the SABE (Health, Welfare and Aging) cohort. The present study was based on 78% (1019) of the baseline sample of adults aged 60 years or more living in Santiago, Chile. Functional limitation was defined on the basis of a combination of six basic activities of daily living, seven instrumental activities, and seven mobility activities (limited, no limited). Socioeconomic position (high, medium and low) was assessed by combining measures of household equipment, wealth, and education.
Results:
The initial prevalence of functional limitation was 47.3% (95%CI: 44.2-50.4) with a clear socioeconomic gradient (60.1% low, 47.5% medium, and 28.7% high; p<0.001). At the end of the follow-up, older adults with low socioeconomic status remained functionally limited while those with high socioeconomic status remained non-limited. The incidence density of functional limitation also followed a socioeconomic gradient (5.33, 6.59 and 7.73 per 100 years-person for low, medium and high socioeconomic status). Social inequalities were also observed for mortality.
Conclusion:
This study corroborates the social stratification of functional status and mortality, suggesting that aging is not a leveler of inequalities. In Latin-American countries, policies should aim to reduce inequalities by attempting to limit exposure to risk factors and to compensate for deficiencies (especially among the poorest older people) in order to prevent the progression of functional impairment to disability.
Chile is a developing country with a rapidly expanding economy and concomitant social and cultural changes. It is expected to become a developed country within 10 years. Chile is also characterized as being in an advanced demographic transition. Unique challenges are posed by the intersection of rapid economic development and an aging population, making Chile an intriguing case study for examining the impact of these societal-level trends on the aging experience. This paper highlights essential characteristics of this country for understanding its emerging aging society. It reveals that there is a fundamental lack of adequate and depthful epidemiologic and country-specific research from which to fully understand the aging experience and guide new policies in support of health and well-being.
Background:
Previous research shows that nonpharmacological strategies may effectively manage behavioral symptoms (agitation, wandering) in persons with dementia and improve caregiver wellbeing. However, strategies depend upon caregivers for their implementation. We examine the impact of caregiver readiness to use nonpharmacological strategies on treatment outcomes.
Methods:
Data were from a randomized trial involving 110 family caregivers in the treatment group which received nonpharmacologic strategies for managing behavioral symptoms. Interventionists rated caregiver readiness to use nonpharmacologic strategies as pre-action (precontemplation, contemplation, preparation) or action at treatment initiation and conclusion. Caregivers in pre-action and action stages by treatment conclusion (16 weeks) were compared on proximal (frequency of, and caregiver upset and confidence with targeted behaviors) and more distal (caregiver burden and wellbeing) outcomes at 16 and 24-week follow-ups.
Results:
By treatment conclusion, 28.2% (n = 31) and 71.8% (n = 79) of caregivers were rated at pre-action and action respectively. Means for proximal outcomes differed between the groups at 16 and 24 weeks; those at action showed greater improvement on all proximal and distal outcomes. Hierarchical regressions showed significant relationships of readiness to targeted outcomes. By 24 weeks, caregiver readiness predicted lower frequency estimates of targeted behaviors (β = -.180, p = .041) and higher confidence (β = .27, p = .009). Readiness was not a significant predictor of caregiver burden and wellbeing at 16 or 24 weeks.
Conclusion:
By treatment conclusion, >25% of participants were not activated to use nonpharmacologic strategies. Activated caregivers reported greater decline in distressing behavioral symptoms, and more confidence than non-activated participants. Activation is needed to impact behavioral management but not other caregiver outcomes. Copyright © 2016 John Wiley & Sons, Ltd.
This unique text provides comprehensive coverage of one of the most neglected-yet vitally important--areas of public health research: developing, evaluating, and implementing novel behavioral interventions in service and practice settings. Written for Masters- and Doctoral-level courses as well as novice and expert researchers in this area, the book examines the most critical issues surrounding this form of research in order to maximize the ability of intervention researchers to successfully implement current and future evidence-based protocols in practice settings. Expert contributors embrace key challenges -the complexities of health care delivery, disease management and prevention, rising costs, and changing population demographics-in shaping the push toward advancing more efficient and effective behavioral interventions and methodologies.
Tackling numerous topics that have been neglected in traditional randomized trial handbooks, methodology texts, and books on dissemination and implementation science, the book addresses: ways to develop and advance an intervention, emerging hybrid trial designs - theories and new models for integrating behavioral interventions with implementation science - - recruitment and retention strategies for inclusion of diverse samples - research designs for different stages of intervention development - treatment fidelity models and measures - novel measurement and analytic strategies - cost analyses - selection of control groups - use of mixed methodology - ethics and informed consent - technology-based intervention approaches - professional considerations. Abundant case examples from successful behavioral intervention trials-both national and international--illustrate key concepts.
La construccio´n social de las demencias en personas mayores de la Regio´n Metropolitana
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- M E Tijoux
Guajardo, G., Tijoux, M. E., & Abusleme, M. T. (Eds.). (2015). La construccio´n social de las demencias
en personas mayores de la Regio´n Metropolitana, Chile. Santiago, Chile: SENAMA, FLACSO
Chile, Instituto Chileno de Terapia Familiar.