Alzheimer’s Disease International has identified that dementia and related disorders is threatening populations in low and middle-income countries (LMICs) at an increasing rate. Persons with dementia (PwDs), their family members, and caregivers experience increased social isolation, stigma, and decreased health outcomes. Social integration and improved social networks lead to increased social support and access to health resources.
Social isolation is a significant factor affecting PwDs and caregivers. Research has been shown there is a social relationship and the risk of dementia. Families affected by dementia and caregivers are faced with chronic stress, perceived loneliness, and isolation. Theory, methodology, and interventions exist that support the concept of aging in place. Beyond theories that support aging in place, environmental support to reduce social isolation and promote health is has been shown to have significant benefits, and reduce morbidity among older adults. Improving resilience thinking can close conceptual gaps in theories of social support in a way that can be effective for PwDs, their families, and. Social and cultural aspects of dementia care must be placed into context with regard to environmental resources and lack of clinical and pharmaceutical interventions typically available to PwDs in high-income countries. Long-term effectiveness of dementia care plans in India on micro, mezzo, and macro levels need to balance the perceived need with available resources to achieve maximum benefits.
The concept of “aging in place”, defined as implementing policies and systems of care that allow persons with gerontological issues to live at home or close to their community of origin, has been identified with improved standards of living and wellbeing for patients and families. Incorporating theories of aging in place and wellness is not limited to high-income countries’ systems of health care. Low and middle-income countries have a great deal to teach us with regard to traditional healing practices, including ideas that have not been addressed by Western Medicine. From this perspective, concepts of health in different ethnic contexts can be served via traditional dimensions of care that include diet, yoga, Ayurvedic medicine, music, and the arts. Music in particular has been shown to have universal benefits for persons with dementia symptoms. Six stages of health acceptance for dementia include: 1) ignoring the problem, 2) some awareness of the problem, 3) building dementia infrastructure, 4) advocacy efforts, 5) policy and dementia plan improvements, and 6) normalization. Until a community is able to go through the six stages of health acceptance for dementia it is unlikely that effective strategies will be put into place to take care of this problem in the long run.
“Age Friendly” and “Dementia Friendly” communities refer to environmental theories of care that take into account the needs of elderly persons and accept these persons have human rights entitling them to access within the public sphere. Dementia Friendly Communities (DFCs) combine the comforts of home, with a commitment from communities to provide awareness to the needs of this population. The first DFC pilots were in the EU, and now there are a number of heterogenous pilots that have expanded the concept of what constitutes a DFC and where they can be developed. Costa Rica is the first LMIC to explore the possibilities of DFCs, they began with one in the city of Curribidat, near the capital of San Jose, and they now have three DFCs.
India presents a challenge and an opportunity for a proposed DFC pilot implementation. The Non-Governmental Organization (NGO) for dementia care in South Asia, Alzheimer’s and Related Disorders Society of India (ARDSI), with Alzheimer’s Disease International (ADI) has a mission to transform dementia care services through macro and mezzo policy. DFCs in India have the potential to change the perception of dementia reduce social isolation for families and caregivers in LMICs, and to improve the quality of life for these individuals. Age-friendly communities have been proposed to address challenging health and social inequalities. A community-based model for health care addresses a range of disability thresholds that effect individuals at different parts of the age spectrum. However, it is clear from the Tropical Health Foundation of India, that the full range of disability thresholds in low and middle-income countries should be expanded and that resources to deal with an array of health disorders is lacking.
Evidence-based methods are required to make community-based interventions a reality. Implementing programs and policies takes evidence-based structures such as the Exploration, Preparation, Implementation, Sustainment (EPIS) model. This framework provides insight needed to understand Inner and Outer contexts at various stages of implementation. However, the Availability, Responsiveness and Continuity (ARC) Implementation Framework is similar to the EPIS model, though for the purpose of a DFC pilot it is superior because of its focus on organizational and community interventions within a rural implementation context. DFCs in LMICs require needs assessments. Social contexts determine 1) which interventions are adopted and, once adopted, 2) the extent to which the interventions are implemented as intended or adapted and changed by those social contexts. The successful implementation of innovative interventions such as evidence-based practice depends on the fit between the new intervention and the social context of the organizational and community setting in which it is implemented. Thrissur provides an excellent example of South Asian population dynamics, including non-secular elements, education, health resources, and community networks.
Music and arts interventions are ideal for DFCs because they follow the guidelines of EPIS and ARC implementation, they are economically viable, and they meet clients and caregivers where they are. There is significant evidence that these interventions work to improve the lifestyle of PwDs and to reduce caregiver burden. Lacking to this point has been a method to train the trainers of caregivers to implement these interventions and a method to measure the effects of music and arts interventions so they can be reproduced. The goal of this project is to work with Alzheimer’s Disease International and Alzheimer’s and Related Disorders Society of India to implement a Train the Trainers curriculum and DFC pilot program in the state of Kerala, India.
Using evidence-based innovation complemented by evidence-based implementation strategies when addressing persistent gaps in healthcare settings is a key component to this project. The ARC implementation model was selected for the DFC Thrissur strategy because it addresses 1) which interventions are adopted, 2) the extent to which interventions are implemented as intended or adapted and changed, 3) the “goodness of fit” between the intervention and the social context it is implemented. Economic impact and education are important factors for the development of a community health intervention in LMICs.
Thrissur shares many of the contextual factors of rural communities including population density, income, ethnicity, and social structure. Health clinics, especially specialized clinics are usually only available in urban settings. This project will take advantage of unique social characteristics, proactive strategies to implement services that take into account the importance of building grass roots support, developing personal relationships with community stakeholders and opinion leaders, forging informal networks within the broader community, and linking services to the socio-political context of the community.
The primary strategies that will be used for the DFC Thrissur pilot implementation are defined within strategy clusters: Evaluative and Iterative Strategies 1) readiness and needs assessment, 2) audit and feedback, 3) develop and implement tools for quality measurement, 4) obtain patient and consumer feedback; Interactive Assistance: 5) clinical supervision, 6) technical assistance; Promote and Tailor to Context: 7) promote adaptability, 8) tailor strategies; Develop Stakeholder Relationships: 9) build a coalition, 10) conduct local consensus discussions, 11) develop academic partnerships, 12) identify and prepare champions, 13) informal local opinion leaders, 14) involve executive boards, 15) organize clinician implementation team, 16) promote network weaving; Train and Educate Stakeholders: 17) conduct educational meetings, 18) conduct educational outreach visits, 19) conduct ongoing training, 20) create a learning collaborative, 21) develop educational materials, 22) distribute educational materials, 23) use train-the-trainer strategies, 24) work with educational institutions; Support Clinicians: 25) develop resource sharing agreements, 26) facilitate relay of clinical data to providers; Engage Consumers: 27) increase demand, 28) intervene with patients/consumers to enhance uptake and adherence, 29) involve patients/consumers and family members, 30) use mass media; and Utilize Funding Strategies: 31) access new funding.
The need to scale-up implementation for geriatric health care policy is becoming recognized in India and among global development leaders. LMICs share the traits of reduced social and mental health services that the ARC Model was designed to implement for rural community health strategies. The ARC organizational and community intervention model responds to needs and builds on existing knowledge of organizational and community intervention strategies that have been used in business, industry, and agriculture. Research has been done with regard to what DFCs would look like in an Indian context, particularly in the state of Kerala. The ARC model for implementation has aspects that are similar to other evidence-based implementation strategies that deal with contextual social elements. The ARC model incorporates interorganizational development, a community intervention domain, diffusion of innovation, and technology transfer that make it an ideal implementation strategy for DFCs in LMICs.
Early outcomes of the DFC Thrissur logic model include engaging with stakeholders, increased capacity to implement action items, the beginning of the needs assessment study, creating the DFC Thrissur Community Cultural Board, initiating the DFC Thrissur pilot strategy, increased integration of PwDs, families, caregivers, and community health resources, and the implementation of action plans. Intermediate outcomes include associations with dementia care partner organizations, motivating the community to take action, educating the community regarding best practices for dementia care, approaching leaders to provide policy making decisions, health care providers are more knowledgeable of the needs of PwDs and their caregivers, there is greater community involvement in dementia efforts. Long-term outcomes include improvements in the promotion of dementia care, increased diagnosis, improved care and management of PwDs, families, and caregivers, and improved quality of life for patients and caregivers.
Anticipated impacts for DFC Thrissur are in line with the goals of the National Dementia Care Strategy for India, including: 1) dementia as a public health priority, 2) dementia risk reduction, 3) dementia diagnosis, treatment, care and support, 4) support for dementia caregivers, 5), dementia research and innovation, and 6) information systems for dementia.
The importance of establishing networks, including representative stakeholders within the community, involving people affected by dementia, raising awareness of the disorder in communities, and gaining commitment from organizations will determine the effectiveness of this DFC implementation model. The goal of designing DFCs goes beyond organizational networking and community buy-in, including understanding how the environment can be a tool to support dementia friendly interventions from a mezzo perspective. It is important to go beyond the needs assessment analysis in order to understand the root benefits/deficits of the community. This is the primary goal of the community study tools that will be addressed. Though they have been used primarily in high-income country communities it will be valuable to find out what insight previous DFC implementations share with LMICs. If there is good construct validity then DFCs for LMICs may be able to provide significant changes for the lifestyle of PwDs, their families and caregivers, ultimately leading to a breakthrough in eldercare.
The research design is quasi-experimental with quantitative and qualitative data outputs. There is a pre-test/mid-test/post-test for inputs with PwDs, family members, and caregivers. The sample is all persons affected by dementia in Thrissur. Though that relates to approximately 60 families, in a small Indian town it is likely that 2nd and 3rd order relations will have connections with each other. Understanding how those relations interact will be important.
Data collection will be done via process and outcome measures, including quantitative data analysis and qualitative analysis. The needs assessment protocol will allow interviews, case studies, as well as researcher assessment of the community. Interviews will be conducted with professionals connected to the Memory Clinic, government leaders, as well as laypersons. The DFC Thrissur pilot will provide data from implementation and outcomes over years and not months. The implementation model will be best suited to this project if persons affected by it, both inside Thrissur and international dementia care leadership are affected by the results of this project over the course of years. Though this Fulbright grant is not intended for that length it is clear from my experience with AIMS, ARDSI, and ADI that the connections made during a Fulbright research project extend well beyond the time of the original grant. I would see this grant as a fulfillment of that research project and I expect that the goal of the DFC Thrissur pilot would be met in the time during and after my stay in India through my connection with ARDSI, ADI, the Fulbright Association, USAID, and other organizations. My research on Musical Reminiscence Therapy for Dementia Care in 2015-2016 the effectiveness of music therapy for PwDs in diverse social settings. I began a doctorate-of-social work at USC Suzanne Dworak-Peck School of Social Work in 2018 and I focused my capstone project on dementia care in India, which brought me to my interest in research on DFCs. This project deals with wider concepts from the social work field, including community-based care and eliminating health disparities in LMICs. However, the importance of Music Reminiscence Therapy for Dementia Care is central to clinical interventions that are effective and low-cost.
A needs assessment evaluation will be conducted with academic partners in India, the USC Roybal Institute of Aging, and with the support of ARDSI and ADI. The needs assessment has a pre-test, mid-test, and post-test for PwDs and caregivers, and will be able to be determined over nine months. Some of the tests I want to include are the General Practitioner Assessment of Cognition, Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care, the CAIDE Dementia Risk Score, and Music in Dementia Assessment Scales, among other assessments.
Social work has been a developing field for approximately 100 years. The arts and music have been associated with this development though there has been no formal connection. Currently, efforts are being made in the field of social work to increase awareness of the benefits of the arts and music to improve outcomes. Social workers and music therapists will be able to work together to make measurable interventions that improve the lives of clients and caregivers. Music has already proven to be particularly powerful in work with persons with neurological disorders. Social workers can learn a great deal from music therapists in this area.
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|Commitee:||Katz, Irving, Islam, Nadia|
|School:||University of Southern California|
|School Location:||United States -- California|
|Source:||DAI-A 81/9(E), Dissertation Abstracts International|
|Keywords:||Alzheimer's disease, Dementia friendly communities, India, International development, Needs assessment, Social work|
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