National Dementia Plan Research Articles

♣Public health policies, dementia care and support in LMICs

AbstractBackgroundThe World Health Organization (WHO) recommends that low‐and‐middle‐income countries (LMICs) develop national plans to formulate public health policies in response to dementia Across Africa, no country has developed a national dementia strategy to date. Although Kenya is in the process of developing a national dementia plan, much work remains to develop care pathways that meet the diverse needs of persons with dementia across the Kenyan population. In a study on perceptions and experiences of dementia and its care in rural Kenya, family caregivers reported negative experiences of disclosure of a diagnosis of dementia. They also reported limited and insufficient provision of information on dementia. The WHO Global dementia action plan has set the target of 75% of countries providing support and training programmes for carers and families of people with dementia by 2025.MethodAlzheimer’s Society of Ireland (ASI) family caregiver training was developed to help caregivers respond to the needs of people with dementia more confidently by developing their caring skills. Though set for a population in Ireland, there are many similar challenges that caregivers in both Kenya and Ireland share. To avoid reinventing the wheel, we adopted the ASI caregiver training programme to be used in Kenya. We conducted a baseline survey to understand the needs of caregivers in Kenya before beginning course adaptation and training. . Due to COVID‐19, the training couldn’t be conducted in person and we conducted the training online with two goals:• To provide quality online education to family caregivers to provide person centred care.• To create peer support for caregivers.We adopted and piloted 6 modules of the training. We used WhatsApp and Zoom to facilitate learning for caregivers, employing micro‐learning between weekly sessions.ResultI will present the lessons learnt from culturally adapting a course for family caregivers in Kenya and providing online training for caregivers in Kenya.Conclusion There is an urgent need for more funding in LMICs to grow programs that provide support for caregivers and people with dementia. Programs to build capacity for more people who provide training on dementia are essential to grow awareness and understanding.

National Dementia Plans of Group of Seven Countries and South Korea Based on International Recommendations

This quality improvement study investigates whether national dementia plans in Group of Seven (G7) countries and South Korea conform to the recommendations of the World Health Organization and the Organization for Economic Cooperation and Development.

Annual Incidence of Dementia from 2003 to 2018 in Metropolitan Seoul, Korea: A Population-Based Study.

National dementia plans were applied in dementia support centers established in Seoul, Korea between 2007 and 2009. However, the annual incidence rates of dementia in Seoul have not been reported. We investigated this annual incidence and the characteristics of incident cases from 2003 to 2018. The customized research database of the Korean National Health Insurance Services was used. The annual crude and age-standardized incidence of dementia patients and their characteristics were analyzed. This study analyzed 108,596 incident dementia cases aged ≥60 years. The incidence rate increased from 2003 to 2011, including a rapid increment from 2007 to 2011. From 2011 to 2018, the crude (age-standardized) incidence per 105 person-years decreased from 641.51 (577.12) to 448.26 (361.23). The proportion of incident dementia cases was highest in the highest income group every year. However, the proportion of incident dementia cases in the lowest income group increased from 10.4% in 2003 to 25.8% in 2011. The annual incidence rate of dementia showed a sharp increase immediately after 2007, the year dementia support centers began to be introduced, and then stabilized after 2011. The characteristics of incident dementia cases have changed, including the proportion in the low-income group.

Russian and UK Dementia Action Plans: a comparative analysis

PurposeThis study aims to compare two national dementia plans and analyse the approach of each state to the issue.Design/methodology/approachComparative analysis, legal analysis, policy analysisFindingsAlthough research is central to both plans, the practical implementation of the Russian and UK plans differs. The Russian action plan on dementia is advisory in nature and does not propose specific programmes for research funding. Two plans have different approach to the role of education and risk factors.Research limitations/implicationsLack of information on Russian regional strategies does not allow to compare regional differences between two countries.Originality/valueThis study illustrates several weak points in the UK and Russian dementia policies, which should be addressed to tackle the dementia problem in both countries.

Multiple Streams Analysis of the Long-Term Care Insurance in South Korea: Understanding Policy Changes (2008 - 2014)

The Long-Term Care Insurance (LTCI) Act in South Korea was enacted in 2008 to improve the quality of life of older adults by promoting better health and to mitigate the burden of care on family members. In 2014, the Enforcement Decree for the LTCI Act was revised to broaden criteria for eligible recipients of LTCI-related services and care. This policy analysis seeks to explore the political circumstances under which the Act was formed and how social environmental factors had evolved to revise the LTCI Act using a multiple streams policy analysis framework. A combination of factors influenced the status of LTCI policy agenda, including shifts in aged demographic structure and increasing medical expenditures. From the Korean National Dementia Plan, a pilot project of dementia care was conducting to prove the efficiency of dementia care service. While the Korean Senior Citizens Association (KSCA) was less successful gaining press attention around dementia care, the presidential election and candidates’ election pledges were key factors to suddenly open the opportunity to extend the recipients for dementia care. The process through which the LTCI Act was revised and expanded showed the importance of the political environment associated with the election. Based on the recognition of LTIC policy agenda and already testing the efficiency of dementia care services, the election leaded to revision of LTCI Act and it quickly diffused by the new administration. From the revision of LTCI, international policymakers and scholars should recognize how the political events might use the policy for older adutls.

Reviewing the development of national dementia plans: Implications for Vietnam

AbstractBackgroundVietnam, a country with a rapidly ageing population, is a member of the World Health Organization (WHO) and agreed to develop a national dementia plan consistent with the WHO’s guidelines in 2018. Recently, steps towards this plan have been implemented with national workshops and the development of research activities related to dementia. This paper reviews 32 national dementia plans (NDPs), based on the WHO’s guideline and WHO’s Global Dementia Observatory’s indicators (GDO), to inform the Vietnamese plan.MethodsData were extracted from 32 NDPs identified from the Alzheimer’s Disease International’s website regarding the vision, mission, objectives, framework, principles, priorities, stakeholders, budget, implementation and evaluation. We compared the plans using the WHO’s guideline and GDO.ResultsMost NDPs were from high‐income countries with only two from middle‐income countries and one from a low‐income country. Overarching visions encompassed improving the quality of life for persons with dementia. Principles covered respect, dignity, accessibility and equity. All plans addressed the seven priority areas advocated by the WHO, but differences in priorities were aligned with national situational analyses. There were similarities across NDPs: to improve awareness of dementia, reduce stigma, develop support services, improve quality of care, improve training and education, and improve dementia research. The process of developing the NDPs involved stakeholders including persons with dementia and their carers, civil society, central government units, state or provincial representatives, older people, disability associations, and local non‐governmental and international organisations.ConclusionThis review provides an important resource for countries yet to develop their national dementia plans, both on plan content, the process of development, implementation and evaluation.

Change in care location of older adults who resided in group homes in Japan: An observational study using long‐term care insurance comprehensive database

AbstractBackgroundGroup homes have been introduced into Japanese public long‐term care insurance program to accommodate people with dementia in a homelike, small‐scale environments. The national dementia plan was launched in 2013 to promote provision of end‐of‐life care to people with dementia at group homes. However, discharge destinations from group homes have rarely been investigated. The present study examined the discharge destination of older adults between group homes and other types of homelike, small‐scale environments under the public long‐term care services.MethodWe used monthly data of January and July during 2013‐2016 from the long‐term care insurance comprehensive database. The 3,468 discharges from group home (n = 500), housing with care (n = 571), nursing home (n = 2097), or in‐home multiple service (n = 300) during 2013‐2016 were included in analysis.ResultOf the 500 discharges from group homes, 173 (34.6%) were admitted to hospitals, 110 (22.0%) were admissions to facilities, and 178 (35.6%) were deceased. Controlling for individual characteristics and the use of specialized care, residents of group homes were more likely to be admitted to hospital rather than discharged by death, in comparison to those of housings with care (adjusted odds ratio [OR] = 0.35, 95% confidence interval [CI] = 0.25‐0.48) or nursing homes (adjusted OR = 0.25, 95%CI = 0.19‐0.32).ConclusionGroup home residents were more likely to be hospitalised compared to residents of housings with care or nursing homes. Further dementia care strategies should be explored to reduce changes in location of care among people with dementia.

Healthcare services for people with dementia in Vietnam: A situational analysis

AbstractBackgroundVietnam is facing rapid population ageing, with one in four Vietnamese citizens being over 60 years old by 2050. This has contributed to a boom of chronic and non‐communicable diseases, such as dementia. In order to develop a national dementia plan as recommended by the World Health Organization (WHO) and increase the preparedness of the healthcare system to tackle dementia, a situational analysis of the current healthcare services related to dementia is needed.MethodIn late 2019, we conducted a situational analysis desk review of the healthcare system in Vietnam, focusing on health service delivery for the elderly, using the guidance developed by the Strengthening Responses to Dementia In Developing Countries (STRiDE) project. The WHO’s six‐building‐block framework was used to analyse the healthcare system in Vietnam, followed by the thematic and SWOT (Strengths, Weaknesses, Opportunities and Threats) analyses of dementia‐related healthcare services.ResultAlthough Vietnam has achieved significant improvement in healthcare in general, there are still inefficiencies in health service delivery. There are also discrepancies in health service readiness and quality across areas of healthcare. Despite of extensive primary healthcare system, grassroots‐level facilities have inadequate infrastructure required for basic care delivery and none for dementia. There are few healthcare facilities at central and provincial levels, mainly located in the three biggest cities of Hanoi, Ho Chi Minh and Danang, providing services for people with dementia. There is limited training in dementia diagnosis and management for health professionals.ConclusionDeveloping a national dementia plan, including transforming the current healthcare services to better cope with rapid population ageing and dementia disease is urgently needed in Vietnam. Integrating dementia services into existing health and social services for the elderly and the disabled, making use of the extensive primary healthcare system in detection, early interventions, management and support for people with dementia at community level are strategic solutions to deal with dementia in a sustainable way. To this end, a whole‐system approach in transformation and operation with implementing a patient centred care model is necessary.

Life experiences of people with dementia in Vietnam and among the Vietnamese diaspora: A systematic review of qualitative studies

AbstractBackgroundAs part of the effort to gather research evidence for the development of Vietnam’s National Dementia Plan, a systematic review was conducted to map dementia research in Vietnam or among the Vietnamese diaspora. This paper aimed to report the qualitative research evidence on the life experiences of people with dementia in Vietnam and among the Vietnamese diaspora.MethodSystematic searches were conducted in June 2019 using Medline, Embase, Emcare, PsycINFO and Cochrane electronic databases, as well as grey literature. Keywords and Medical Subject Headings [MeSH terms] for dementia and associated terms were combined with keywords for Vietnam and its provinces. Qualitative research articles published in English or Vietnamese were included to examine evidence on the life experiences of Vietnamese people with dementia using thematic analysis.ResultOur searches resulted in 3,940 papers, from which 21 qualitative research studies were included for final analysis. The majority of research has not been undertaken in Vietnam but with the Vietnamese diaspora in Western countries and has taken a cultural perspective to analyses. Research in Western countries has focused on the need for culturally adapted and culturally sensitive models of care. Emerging themes about the life experiences of Vietnamese people with dementia identified from the studies included: many people do not have diagnostic terms for dementia but use the descriptive language of symptoms; stigma was a reported problem and on occasions can be observed in the descriptive language used for people with dementia; cultural and traditional values create both an opportunity and a barrier, supporting compassion, family care and relaxation, but creating barriers to accessing health services or long‐term residential care.ConclusionThis is the first systematic review reporting evidence on the life experiences of people with dementia in Vietnam and among the Vietnamese diaspora. Future research is needed on the voice of people with dementia themselves and their caregivers particularly in low and middle‐income countries with regards to living with dementia, pathways to care from diagnosis, treatment, care and support, additional social care and preparedness for end of life care for people with dementia.

From Plan to Impact IV, progress towards the WHO global action plan on dementia

AbstractBackgroundAt the World Health Assembly 2017, the World Health Organization launched the Global action plan on the public health response to dementia 2017‐2025. Alzheimer's Disease International (ADI) monitors progress towards the action areas and targets of the Global plan and in May 20201 will publish "From plan to impact IV", which is especially poignant in the context of Covid‐19.MethodADI continuously gathers information and updates relating to the 7 action areas of the Global action plan through our network of over 100 member associations and federations globally, as well as our contacts and partners in research, science, health and care, people living with dementia and carers. A specific analysis of progress towards the key goal of developing national dementia plans or strategies is a focal point of the research. In addition there will be a focus on the impact and implications of Covid‐19, including disruption to services, diagnosis and research.ResultThere was some encouraging policy developments in 2020 despite the challenges of Covid‐19, with the governments of China, Dominican Republic, Germany and Iceland developing national dementia plans. However, there are still only 35 national plans in existence, increasing urgency, and a need for a new focus and mobilisation to reach the central goal of the Global action plan, of 146 Member States developing a plan by 2025. This equates to the need for over 25 new plans every year.ConclusionProgress is being made across all 7 action areas of the Global action plan on dementia, with hope in the form of potential breakthroughs in disease modifying treatments and diagnostics, but this too is reflected in the need for much better healthcare preparedness. ADI, working with WHO and our partners, will continue to focus attention on governments across the world to take action, to develop robust and well‐funded national plans and to monitor their progress and to fulfil their commitments in adopting the Global action plan on dementia.

Key Intervention Categories to Provide Person-Centered Dementia Care: A Systematic Review of Person-Centered Interventions.

Background:Person-centered care (PCC) is an important concept in many countries’ national guidelines and dementia plans. Key intervention categories, i.e., a taxonomy of person-centered (PC)-interventions, to provide person-centered dementia care, are difficult to identify from literature.Objective:This systematic review aimed to identify and categorize published PC-interventions into key intervention categories to guide the provision of person-centered dementia care.Methods:Conduct of this systematic review followed Cochrane guidelines. A search of the dimensions ‘Dementia’, ‘Person-Centered Care’, and ‘Intervention’ combined was performed in PubMed, EMBASE, and Web of Science. Study selection was based on 2-stage screening against eligibility criteria, limited to controlled study designs. Information about interventions and outcomes was extracted into an “Effects Table”. The identified PC-interventions were categorized in intervention categories to provide person-centered dementia care.Results:Searches identified 1,806 records. 19 studies were included. These covered a range of psychosocial interventions, oftentimes multi-component interventions, which followed heterogeneous approaches. Studies were conducted in long-term care/hospital settings. Nine key intervention categories were identified: social contact, physical activities, cognitive training, sensory enhancement, daily living assistance, life history oriented emotional support, training and support for professional caregivers, environmental adjustments, and care organization.Conclusion:Our findings provide a current overview of published PC-interventions in dementia, which followed heterogeneous approaches under the PCC-concept. The heterogeneity made it challenging to identify a well-defined concept of PCC and common key intervention categories. An effectiveness-evaluation of “PC” - including “relationship-centered”-interventions may be valuable, to assess whether an explicit focus on relationships around PCC-interventions yields an added benefit.PROSPERO-ID: CRD42021225084.

Primary care and memory clinic in the assistance of patients with dementia: What implications for the public health?

In Italy, 1,100,000 people are estimated to have dementia, and almost 900,000 to have MCI. Establishing a relationship between general practitioners (GPs) and Centers for Cognitive Disorders and Dementias (CCDDs) specialists is essential to provide adequate care for patients with dementia (PwD) and their families. The Italian National Dementia Plan defines a specific role for GPs and specialists within diagnostic and therapeutic pathways.

Atención de Terapia Ocupacional en Demencias durante el contexto de Pandemia COVID-19. Sistematización de experiencia desde el Centro Kelluwun, Hualpén

One of the emerging challenges at a global level is related to the aging population and the consequent risk of increased incidence of major neurocognitive disorder or dementias, which do not have an effective and currently validated curative treatment. However, the available evidence emphasizes the effectiveness and importance of developing symptomatic and accompanying treatments for maintaining the quality of life of those living with a diagnosis of dementia and their immediate environment, especially caregivers. Taking this approach and under the atrous of the National Dementia Plan, the Community Support Center for People with Dementia “Kelluwun” has been working since 2016, which offers comprehensive and transdisciplinary treatment to people living with the diagnosis of dementia in the municipality of Hualpen. However, the Covid-19 pandemic and its consequences, characterized mainly by restrictive measures focused on preventing and reducing the risk of spreading the SARS-CoV-2 virus, has presented new challenges and opportunities for the continuity of non-pharmacological treatments in people diagnosed with dementia. This article aims to publicize a systematization of work experience from Occupational Therapy in the Center “Kelluwun”, which has been developed during the last 17 months since the beginning of the Covid-19 pandemic.

The Implementation of National Dementia Plans: A Multiple-Case Study on Denmark, Germany, and Italy.

In a theory-driven, qualitative, multiple-case study, we examined the implementation of national dementia plans (NDPs) in Denmark, Germany, and Italy to determine how stakeholders involved in implementing the NDPs evaluate contextual factors in light of the World Health Organization’s seven action areas of dementia-focused policy. To analyse the NDPs, we used a driver diagram of large-scale change and conducted both document analysis and semi-structured interviews, after which we performed three-way open coding to analyse the methods. The results show that the implementation of NDPs has increased awareness of dementia in all three countries by positioning the disease as a national public health concern. The study also reveals that resources, the use of change theory, and the monitoring of implementation and fragmentation are crucial factors to consider for countries when implementing NDPs. Although stakeholders find the NDPs useful, many challenges remain for their successful implementation due to the highly limited means for implementation and evaluation. Moreover, present NDPs all lack a communication plan that encompasses all layers of society to address ways of achieving change. Patients with dementia, and their informal caregivers, should be included more in the design, implementation, and evaluation of NDPs in order to improve their usefulness and effectiveness.

Japanese National Dementia Plan Is Associated with a Small Shift in Location of Death: An Interrupted Time Series Analysis.

Background:Japan has one of the highest percentages of persons with dementia and hospital deaths in the world. Hospitals are often not equipped to handle the care complexity required for persons with dementia at the end of life. The National Dementia Orange plan aimed to decrease hospital deaths by expanding time in the community.Objective:The aim of this study is to evaluate whether the National Dementia Orange Plan is associated with a decrease in hospitals deaths for persons with dementia.Methods:We used quarterly, cross-sectional, national death certificate data consisting of the total Japanese dementia population 65 years and older, spanning a period from 2009 to 2016. The primary outcome was quarterly adjusted relative risk rates (aRRR) of dying in hospital, nursing home, home, or elsewhere. An interrupted time series analysis was performed to study the slope change over time. Analyses were adjusted for sex and seasonality.Results:149,638 died with dementia. With the implementation of the Orange Plan, death in nursing home (aRRR 1.08, [1.07–1.08], p < 0.001) and elsewhere (aRRR 1.05, [1.05–1.06], p < 0.001) increased over time compared to hospital death. No changes were found in death at home.Conclusion:This study provides evidence that the National Dementia Orange plan was associated with a small increase in death in nursing home and elsewhere. Hospital death remained the primary location of death. End-of-life strategies should be expanded in national dementia policies to increase aging in the community until death.

Designing Dementia Care Pathways to Transform Non Dementia-Friendly Hospitals: Scoping Review.

People with dementia (PwD) occupy around 25% of the hospital beds. Once PwD are admitted to hospitals, their cognitive impairment is not considered in most of the cases. Thus, it causes an impact on the development of the disease becoming a stressful situation as care plans are not adapted to PwD. The aim of this study was to explore the published core elements when designing a dementia care pathway for hospital settings. A scoping review was conducted to provide an overview of the available research evidence and identify the knowledge gaps regarding the topic. This review highlights person-centered care, compassionate care and end-of-life process as some of the key elements that should integrate the framework when designing a dementia care pathway. Architectonical outdoor and indoor hospital elements have also been found to be considered when adapting the healthcare context to PwD. Findings provide information about the key points to focus on to successfully design dementia interventions in hospital environments within available resources, mostly in those contexts in which national dementia plans are in its infancy. Hospitals should transform their patients’ routes and processes considering the increasing demographic changes of people with cognitive impairment.

Health Professionals' Recommendations for a Dementia Plan for China.

There is no specific national dementia plan concerning people with dementia in China. The purpose of this study was to explore health professionals' recommendations for a dementia plan for China to meet the needs of people with dementia. Semi-structured interviews were conducted with 24 doctors and nurses using purposive maximum variation sampling. Data were interpreted inductively using thematic analysis. Four themes were identified. Themes on policy recommendations emphasized a need to support people with dementia and those who care for them, including the development of community daycare centers, specialized dementia care units in hospitals, and specialized nursing homes. Improvement in dementia care in China is needed, including services across all care settings. Programs to train and support family caregivers and help health professionals to detect, diagnose and treat dementia are crucial. Further support for the families of people with dementia is required.

Dementia Incidence, Burden and Cost of Care: A Filipino Community-Based Study.

Background: In the midst of competing priorities and limited resources in low-middle-income countries (LMIC), convincing epidemiological evidence is critical for urging governments to develop national dementia plans. The majority of primary epidemiological studies on dementia are from high income countries (HIC). Implications for developing countries are typically extrapolated from these outcomes through modeling, meta-analyses, and systematic reviews. In this study, we directly assessed the incidence of dementia, disability adjusted life years (DALYs), and cost of care among community-dwelling Filipino elderly.Methods: This was a follow-up study of the prospective cohort Marikina Memory Ageing Project (MMAP). Baseline assessment was performed in 2011–2012, and follow-up was done in 2015–2016 (N = 748 at follow-up). Incident dementia was determined. Disease burden was computed using the incidence rates and DALYs. Both indirect and direct (medical and non-medical) costs of dementia care were computed.Results: The crude incidence rate was 16 (CI: 13–20) cases per 1,000 person-years (pyr) with 17 (CI: 12–21) per 1,000 pyr for females and 14 (CI: 9–21) per 1,000 pyr for males. Based on this incidence, we project an estimation of 220,632 new cases in 2030, 295,066 in 2040, and 378,461 in 2050. Disease burden was at 2,876 DALYsper 100,000 persons. The economic burden per patient was around Php 196,000 annually (i.e., ~4,070 USD, or 36.7% of average family annual income in the Philippines). The majority (86.29%) of this care expense was indirect cost attributed to estimated lost potential earning of unpaid family caregivers whereas direct medical cost accounted for only 13.48%.Conclusions: We provide the first Filipino community-based data on the incidence of dementia, DALYs, and cost of care to reflect the epidemiologic and economic impact of disease. The findings of this study serve to guide the development of a national dementia plan.

Influence of Music Therapy and Music-Based Interventions on Dementia: A Pilot Study.

According to national dementia plan in many countries, the music implementation into the daily routine as an adjunctive therapy to medication treatment is common. However, the ability of long-term care facilities to implement individualized music therapy (MT) and music-based interventions is not sufficiently taken into account. This pilot study examined the frequency of use and acceptance of MT and technology-based music interventions (TBMI) as well as the influence of high and low usage of both interventions of dementia on behavioral and psychological symptoms (BPSD) at two timepoints. Furthermore, the influence on the combination of MT and TBMI of dementia within the nursing home setting on BPSD with a focus on agitation, apathy, depression, and quality of life at all timepoints was considered. In the present study, data from 30 people with dementia (PwD) aged on average 81 years were analyzed within an eight-week noncontrolled intervention study, including four-week follow-up. Initial outcome data indicated significant decreases at times T2 and T3 in agitation and apathy among PwD with a high usage of MT and TBMI than among those with a low usage. In general, reductions were obtained from all observed BPSD at all timepoints. Significant results were found only for agitation over time. Considering the demonstrated results, a long-term implementation of music within daily routines in nursing homes for PwD should be strived for.

Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries.

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.