Dementia Policy Research Articles

The dementia policies in Australia relating to the COVID‐19 pandemic

BackgroundAustralia has a population of 26 million, and on January 28th 2021, 28,794 COVID‐19 infections and 909 deaths. 685 deaths were at residential aged care facilities, and data from the Australian Bureau of Statistics revealed that 72.7% of the people who died of the coronavirus in Australia (up to 31 August 2020) had at least one pre‐existing chronic condition listed on their death certificate, with dementia the most common (noted on 41% of death certificates). This presentation will present and discuss the key Australian dementia policy interventions implemented during the pandemic.MethodA scoping review of published academic, media, policy papers, white papers, and grey literature was conducted. We extracted relevant information pertaining to policies relating to dementia care during the COVID‐19 pandemic.ResultThe Australian government is managing the COVID‐19 outbreak as a health emergency, and have developed and funded a comprehensive response. For the older population and those with ADRD, the key policies include the National Health Plans, specific plans for people with disabilities, telehealth expansions, mental health and wellbeing pandemic response plans, home delivery of prescriptions, the establishment of an Aged Care Health Emergency Response Operations Centre, and a National COVID‐19 Aged Care Plan. In Victoria, the Victorian Aged Care Response Centre was established. The Pfizer/BioNTech vaccine will be given to priority groups from February 2021, which include aged care and disability care residents and workers (people with dementia account for 52% of all residents in aged care facilities). Strict policies were put in place for aged care facility visitations, and for the aged care workforce, such as the use of personal protective equipment and limiting staff to work in only one facility. Advocacy bodies were also key, and Dementia Australia and Dementia Support Australia, for example, developed advice to support people experiencing behavioural and psychological symptoms of dementia during the pandemic.ConclusionThere are currently no active cases in residential aged care in Australia, zero locally acquired cases for several weeks, with the (minimal) new cases emerging from the hotel quarantine system. Health policies have managed to limit the spread of COVID‐19 infection in Australia.

Dementia policy and its implication for supporting people with ADRD during the unprecedented time in China

AbstractBackgroundImproving dementia care has been prioritized in a community‐based psychosocial support system in China. In 2020, the National Health Commission announced implementing the National Dementia Strategic Plan in more than 60 demonstration areas. The Plan intends to improve community‐based dementia care by utilizing the existing psychosocial support system, creating multidisciplinary teams, and establishing a collaborative network between specialists and primary care services. During the COVID‐19 pandemic, community service has played a pivotal role in supporting residents, especially older adults. Therefore, the study aimed to explore the implications of the National dementia strategic plan in supporting persons living with dementia during the unprecedented time.MethodWe conducted qualitative interviews with ten leaders of community health centers. All the interviews were audio‐recorded and transcribed. Thematic extraction was used for data analysis.ResultThis presentation will report the main findings of the qualitative studies, including the potential of integrating the Dementia strategic plan with community service during the unprecedented times, the barriers and enablers for the implementation, and the interaction between the Plan and the managerial regulations relevant to preventing the cross‐infection of COVID‐19.ConclusionCommunity service is mainstream both for COVID‐19 prevention and dementia care. There is a great potential to integrate the national dementia strategic plan with the community psychosocial support tackling the disaster response during the unprecedented time.

Developing a protocol for neuroimaging to investigate brain ageing and dementia in collaboration with aboriginal Australian communities

AbstractBackgroundDementia rates in Aboriginal Australians are 3‐5 times higher than in the broader Australian population, and among the highest rates reported globally. Existing evidence suggests that dementia types are similar to those found in non‐Indigenous Australian populations. Neuroimaging, however, has not been previously available in any study of dementia in this population to support or inform clinical diagnoses.MethodThis study extends our epidemiological work, and arose from extensive community consultation and engagement. This engagement included a pilot MRI study (n=14), community planning survey, and guidance from an Aboriginal and Torres Strait Islander Steering Committee. The neuroimaging sub‐study is a prospective, cross‐sectional non‐interventional study. Participants first complete a comprehensive interview and diagnostic assessment as part of the Koori Growing Old Well study. Consenting participants with cognitive decline (diagnosis of cognitive impairment or dementia; n=40) and age/sex‐matched healthy controls (n=40) aged 60+ will undergo MR, FDG PET‐CT and PiB PET‐CT scans. An additional n=120 participants >55 years will be recruited to an MR scan‐only condition.ResultPilot work and consultation showed acceptability of neuroimaging with partnering Aboriginal communities, including 74% of planning survey participants (n=213) indicating that neuroimaging should be included in future dementia studies (Lavrencic et al., 2020, Int Psychogeriatr). Older Aboriginal people living in New South Wales, Australia are currently being recruited; n=20 have undergone PET‐CT and MR scans to date (expected study completion by 2023). Outcome analyses will compare cognitive decline and healthy control groups on a range of measures including amyloid burden, regional glucose metabolism, hippocampal atrophy/volume and vascular indices on MR. Associations between amyloid burden and vascular pathology will be examined for cases of possible/probable Alzheimer’s disease. Correlations between MR measures and early life stress, adult adversity, cognitive function, and clinically diagnosed cognitive impairment will be investigated.ConclusionOur study will, for the first time, investigate functional and anatomical neuroimaging in older Aboriginal Australians and inform dementia prevention, diagnosis and policy for Aboriginal Australians. It will also contribute to the wider literature on vascular risk in the pathogenesis of AD, with associated biomedical and social risk factors across the lifespan of Aboriginal Australians.

Dementia care in Taiwan during COVID‐19

BackgroundTaiwan has been bolstering dementia care policy with the concern of reaching the ‘super‐aging’ mark by 2025. Taiwan’s success in containing the COVID‐19 pandemic involves focused, timely interventions in preventive measures, including policies targeting people living with dementia and their caregivers. This review presents key dementia policy interventions achieved during the pandemic.MethodA scoping review of published academic, media and grey literature was conducted. We extracted relevant information pertaining to dementia care during the COVID‐19 pandemic and summarized the data in a narrative format.ResultTaiwanese government has implemented a policy in April 2020 that restricted visitations to long‐term care facilities, which continues today. Since the start of the pandemic, one nurse and no individuals with dementia living in long‐term care facilities has been infected. A landmark decision was made in April 2020 to ban penalization of people with dementia for violation of the epidemic prevention regulation (e.g., wearing a mask) if they have documentation of disability. This was possible due to the strong, continued advocacy from the Taiwan Alzheimer’s Disease Association (TADA). TADA provided critical resources to the dementia community by releasing online videos to teach patients how to protect themselves and others during the pandemic, such as mask wearing and handwashing. TADA’s Reference Handbook of Dementia Care Responding to COVID‐19was well‐received by the Health Promotion Administration of the Ministry of Health and Welfare, who forwarded the handbook to all local governments and shared these videos on its national official website. There are government‐sponsored facilities across the districts of Taipei City that encourage people with dementia to participate in local activities during the pandemic.ConclusionIn Taiwan, national public health policies quickly came into place since the beginning of the pandemic to curb the spread of COVID‐19 infection in elderly care settings impacting dementia care. Patient advocacy groups have played an important role in providing resources and support to the dementia community. Taiwan’s recent demonstration of quick policy reactions and public‐private partnerships to protect people with dementia and their caregivers provide an effective dementia care model for future response measures.

159 BARRIERS AND FACILITATORS TO IMPLEMENTING NON-PHARMACOLOGICAL STRATEGIES TO MANAGE RESPONSIVE BEHAVIOURS OF NURSING HOME RESIDENTS WITH DEMENTIA

Abstract Background Many nursing home residents with dementia exhibit responsive behaviours including agitation and aggression. Psychotropic drugs are often prescribed to manage responsive behaviours but increase the rate of falls, strokes and death in residents with dementia. Therefore, the aim of this research is to conceptualise the barriers and facilitators to implementing non-pharmacological strategies to manage responsive behaviours. Methods Twenty-five interviews were conducted with nursing home managers, nurses and healthcare assistants from twenty-one private and voluntary nursing homes. Reflexive thematic analysis was used to conceptualise the barriers and facilitators to implementing non-pharmacological strategies to manage responsive behaviours. Ethical approval was obtained from the University Research Ethics Committee (Ref. FHMREC20091). All participants provided written informed consent. Results Three themes were constructed conceptualising the barriers and facilitators to taking a non-pharmacological approach to manage responsive behaviours. Strong leadership, specialised training in gerontology or dementia care and retention of staff long term supported the development of trusting relationships with residents. Treating residents with dementia with love and respect while providing meaningful activities enhanced resident’s self-esteem, facilitating a non-pharmacological approach to managing responsive behaviours. In addition, the engagement of families in residents’ care was found to be a powerful facilitator. However, sub-optimal teamwork between nurses and healthcare assistants and a lack of multidisciplinary collaboration posed barriers to taking a non-pharmacological approach to behaviour management. Furthermore, most healthcare assistants perceived that they were not valued, this also had a detrimental impact on residents’ care. Conclusion Conceptualisation of the barriers and facilitators to taking a non-pharmacological approach to manage responsive behaviours enables formulation of recommendations to address these barriers. These recommendations will assist in the development of dementia policy including the national dementia strategy, to implement sustainable non-pharmacological strategies to manage responsive behaviours of nursing home residents with dementia.

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.

1472Spatial clusters and affecting factors on Alzheimer's disease death in South Korea

Abstract Background The prevalence of dementia is increasing worldwide; and dementia deaths are also increasing. In South Korea, deaths from Alzheimer's disease (AD) ranked 9th in the 2018 cause of death statistics, and the ranking has risen. Methods We collected 2009 to 2018 AD deaths and related data from Statistics Korea and Community Health Survey. SaTScan software was used for detecting and evaluating the clusters with high risk in AD deaths, and R version 4.0.3 was used for mapping and analysis of affecting factors. Results A total of 39,412 people died from AD during 10 years in Korea, 7.7 per 100,000 inhabitants. While 98.7% of deaths were above-65 age, the proportion of under 65 was also rising. The global Moran index of 10 years’ AD deaths was 0.2 (P &amp;lt; 0.01), and the clusters were detected primarily in southern rural region. According to the spatial regression analysis, AD deaths in 2018 were increased in area with lower dementia screening rate, long-term care workers, and higher home-care service usage rate in long-term care, inhabitants educated about dementia. Conclusions Some clusters of AD deaths were identified, and they were influenced by institutional factors. It is necessary that the local government considers characteristics of each region when implementing the dementia policies. Key messages AD deaths in South Korea were increasing from 2009 to 2018, and their clusters were observed in southern regions. AD deaths in 2018 were influenced by dementia-related policies.

A Study on the Effect of Communication on Organizational Trust in Dementia Policy for the Elderly

본 연구는 치매관리정책의 의사소통, 조직신뢰의 인과관계를 검증하는데 것이 목적이다. 연구대상은 대구광역시 치매안심센터를 비롯한 노인복지관련 시설 및 요양원 등에 근무하는 종사자들을 대상으로 하고자 한다. 자료의 수집방법으로는 설문조사를 실시하여 무작위 표본추출을 실시하였다. 치매관리정책의 의사소통과 조직신뢰의 영향관계를 분석한 결과 ① 의사소통의 명료성, 정확성, 적시성, 개방성이 인지적 신뢰에, ② 의사소통의 정확성, 적시성이 정서적신뢰, ③ 의사소통의 정확성, 적시성, 개방성이 높을수록 행동적 신뢰에 긍정적 영향을 미치는 것으로 나타났다. 정책시사점으로 치매관리의 소통원활화를 위해 인적·물적자원의 추가투입과 시설의 인프라를 확대하는 것에 대해 장기적 관점에서 시민참여단을 출범시켜 신뢰도향상을 유도해 가야할 것이다.

Analysis of Research Trends on Caregivers’ Dementia Elderly Care : Focusing on Domestic Papers from 2008 to 2020

본 연구는 2008년부터 2020년까지 국내논문에 게재된 장기요양기관에 종사하는 요양보호사의 치매노인케어에 대한 연구 동향을 분석하여 의료적 모델, 사회적 모델, 인간중심케어 모델로 제시하고 연구주제별로 분석된 결론을 토대로 향후 연구과제를 도출하고자 수행되었다. 이를 위해 내용분석 방법의 일반적 절차에 따라 연구주제, 연구접근방식, 주요 치매노인케어로 나누어 연구 동향을 분석하였다. 분석대상의 연구는 학술논문 44편, 학위논문 21편으로 모두 65편이다. 본 연구의 결과는 다음과 같다. 첫째, 연구주제는 행동심리증상(BPSD)이 가장 많았다. 둘째, 연구접근방식은 양적연구, 질적연구, 혼합연구로 분석되었는데, 이 중에서 양적연구가 월등하게 많았다. 셋째, 주요 키워드는 60개로 분류하였는데 2008-2011년에는 7개, 2012-2015년에는 22개, 2016-2020년에는 31개의 연구내용이 확인되었다. 넷째, 치매노인케어는 주요 키워드 중심에 따른 치매에 대한 관점에 따라 연도별로 분석하였는데 이 분석에 따르면 인간중심케어 모델의 연구가 증가하는 것으로 분석되었다. 이 연구는 우리나라의 치매 정책이 전문가 중심으로 흐르고 있어 요양보호사의 치매노인케어도 의료인과 같은 전문가에 의존하는데, 향후 치매노인 당사자 중심에 맞는 개별화 지원체계의 구축을 통한 인간중심케어의 정책과 구조에 대한 연구의 필요성을 시사하였다.;This study was conducted to analyze the research trends of dementia elderly care for caregivers in long-term care institutions published in domestic papers from 2008 to 2020 and present them as medical model, social model, and person-centered care model, and to derive future research projects based on the conclusions analyzed by research subjects. The research trends were analyzed by dividing the research topics, research approaches, main keywords, and dementia elderly care according to the general procedure of the content analysis method. The research subjects of analysis are 44 domestic journals and 21 domestic theses, total of 65. The results of this study were as follows: First, the most common topic was behavioral psychological symptoms(BPSD). Second, the research approach was analyzed as quantitative studies, qualitative studies, and mixed studies, and there were for more quantitative studies than other studies. Third, the main keywords were classified into 60 categories. In 2008-2011, 7 research contents were identified, in 2012-2015, 22 research contents, and in 2016-2020, 31 research contents were confirmed. Fourth, dementia elderly care was analyzed by year according to the viewpoint of dementia based on main keywords. According to this analysis, the research on the person-centered care model was analyzed to increase. Since Korea’s dementia policy is centered on experts, caregivers’ dementia elderly care also depends on experts such as medical personnel. This study suggests the need for research on the policy and structure of person-centered care through the establishment of an individualized support system that centers the elderly with dementia in the future.

Complementary and alternative medicines for behavioral and psychological symptoms of dementia: A protocol of overview of systematic reviews.

Background:Dementia is causing a huge medical and socioeconomic burden. Along with strategies to delay cognitive decline in dementia, behavioral and psychological symptoms of dementia (BPSD) are major contributing factor to the burden of dementia, and have been an important clinical issue for successful management of dementia. However, pharmacological strategies such as antipsychotics raise concerns in terms of risk-to-benefit ratio in managing BPSD. Therefore, there is a need for an effective and safe alternative in BPSD management. From this point of view, various complementary and alternative medicines (CAMs) are attracting attention in BPSD management. Therefore, the overview will make it possible to evaluate the feasibility of using CAM as a potential treatment strategy for BPSD in terms of evidence-based medicine.Methods and analysis:Comprehensive searching will be performed in 13 bibliographic databases from their inception dates to November 2021. Systematic reviews and/or meta-analyses that examined the effectiveness and safety of CAM modalities including herbal medicine, acupuncture, acupressure, aromatherapy, meditation, and relaxation on BPSD, will be included. The methodological quality of included reviews will be assessed by using the A MeaSurement Tool to Assess systematic Reviews-2. Two independent researchers will conduct study search, study selection, data extraction, and quality assessment processes.Results:The results of overview will be disseminated by the publication of a manuscript in a peer-reviewed journal or presentation at a relevant conference.Conclusion:The findings of this overview will help to solve the major public health problem related to dementia, and will provide patients with dementia, their caregivers, clinicians, and health policy makers credible evidence in mitigating the burden of dementia.Ethics and dissemination:As this protocol is for an overview of systematic reviews and meta-analyses, ethical approval is not required.Protocol registration number:Open Science Framework registry (https://osf.io/g5f3m)

The association between an early diagnosis of dementia and secondary health service use.

Backgrounddementia policy suggests diagnosing dementia early can reduce the risk of potentially harmful hospital admissions or emergency department (ED) attendances; however, there is little evidence to support this. A diagnosis of mild cognitive impairment (MCI) before dementia is a helpful proxy to explore early diagnosis. This study investigated the association between an early diagnosis of dementia and subsequent hospitalisations and ED attendances.Methoda retrospective cohort study of electronic health care records from 15,836 patients from a large secondary care database in South London, UK. Participants were divided into two groups: those with a diagnosis of MCI before dementia, an early diagnosis, and those without. Cox regression models were used to compare the risk of hospitalisation and ED attendance after dementia diagnosis and negative binomial regression models were used to compare the average length of stay and average number of ED attendances.Resultsparticipants with an early diagnosis were more likely to attend ED after their diagnosis of dementia (HR = 1.09, CI = 1.00–1.18); however, there was no difference in the number of ED attendances (IRR = 1.04, CI = 0.95–1.13). There was no difference in the risk of hospitalisation (HR = 0.99, CI = 0.91–1.08) or length of stay between the groups (IRR = 0.97, CI = 0.85–1.12).Conclusionthe findings of this study do not support the assumption that an early diagnosis reduces the risk of hospitalisation or ED attendance. The patterns of health service use in this paper could reflect help-seeking behaviour before diagnosis or levels of co-morbidity.

프랑스의 치매 대응 정책 분석과 그 함의

본 연구는 프랑스의 선행된 치매 대응 정책의 도입과 주요 전개 과정을 살펴보고, 그 쟁점 및 실천 전략들을 분석하여 우리나라의 치매 지원 체계 강화에 필요한 함의 제시에 목적이 있다. 본 논문은 프랑스의 치매 정책 관련 정부, 위원회 및 기관의 보고서와 학술 자료 등을 조사하고 분석한 문헌 고찰로써 그 연구 결과는 다음과 같다. 프랑스는 연속적인 국가치매계획을 통해 연구, 의료·보건·복지 서비스, 사회적 연대의 세 영역을 통합하고, 포괄적인 치료 및 돌봄 서비스 제공을 도모하였다. 프랑스의 치매 대응 정책은 공공정책 기반의 지속적 모델링, 통합 지원 강화, 치매환자 및 가족 중심 접근의 특징을 보이며, 최근 그 대상을 유사퇴행성질병과 초고령 사회 관련 문제로 확장하였다. 특히 MAIA라는 제도적, 구조적, 실천적 통합을 위한 장치이자 방법을 도입하여 하향식과 상향식 접근을 융합하는 전략을 통한 커뮤니티 케어 네트워크 구축 사례는 우리나라의 치매 중심 커뮤니티 케어 활성화에 시사하는 바가 크다.

A Study on Complementary Policy to Enhance the Effectiveness of National Dementia Policy in Terms of Medical Services

A Study on Complementary Policy to Enhance the Effectiveness of National Dementia Policy in Terms of Medical Services

Perception and Attitude of University Students’ Dementia Policies, and Knowledge Level Survey: Focus on Dementia National Responsibility

목적: 재학 중인 대학생들을 대상으로 치매정책에 대한 인식 및 태도, 지식수준을 알아보고자 하였다. 연구방법: 2019년 4월 24일부터 4월 30일까지 약 일주일간 부산, 울산, 경남소재 대학교에 재학 중인 대학생들을 대상으로 치매정책에 대한 인식과 태도, 지식수준에 관한 전자 설문조사를 실시하였으며, 총 110부 중에 106부를 회수하고 응답이 잘못된 6부를 제외한 100부의 설문지가 최종 분석 자료로 활용되었다. 연구결과: 치매정책에 대한 인식 및 태도는 치매 국가적 지원과 치매 보호시설의 증가가 가장 높았으며, 치매국가책임제에 대한 인식과 치매치료시설의 충족수가 가장 낮았다. 치매정책에 대한 지식수준은 치매안심센터가 가장 높았으며, 의료비 부담과 국가치매연구개발위원회가 가장 낮았다. 대학생들의 일반적 특성과 치매정책에 대한 인식 및 수준, 지식수준의 상관관계는 가까이 지내는 노인의 유무와 치매정책에 대한 인식 및 태도, 지식수준과 양의 상관관계를 보였다. 결론: 본 연구는 대학생들의 치매정책에 대한 인식 및 태도, 지식수준을 알아볼 수 있는 기초자료로 치매정책에 대한 인식과 지식수용의 필요를 권고하며, 그에 따른 지식수준을 갖기 위한 교육의 토대가 마련되기를 기대한다.

Justification for Integrated Care of Dementia and Presbycusis: Focused on National Dementia Policy

Dementia management has become one of essential factors in the national policy globally in terms of the elderly health care service. In the brief communication, we compared various national reports from other countries to see whether current care service for the dementia had integrative approach for the patients with hearing loss in Korea. We also discussed a need of systematic hearing care for the elderly with dementia who was also a suspected case of aged-related hearing loss because many studies had confirmed that untreated hearing loss has a negative effect on dementia and vice versa. After analyzing the national policy from several countries, we found that the systems had been well established to screen dementia patients by using various clinical tests in UK, Canada, and Japan who provided appropriate services by classifying types of the dementia. Remarkably, the hearing test was included as the testing protocol for the dementia in Canada and the experts such as speech pathologists and music therapists had worked in a non-pharmacotherapy program for the elderly with dementia in France. Unfortunately, the dementia policy of Korea needs to be refined when considering the hearing care/management in that the integrated management of hearing and dementia are important. In addition, the clinicians who work for the dementia care home need to know audiological knowledge. Since the auditory training and rehabilitation for the elderly can reduce increased rate of cognitive decline, we strongly recommend that auditory training should be a part of the cognitive rehabilitation programs in the dementia care home.

The Association Between a Previous Diagnosis of Mild Cognitive Impairment as a Proxy for an Early Diagnosis of Dementia and Mortality: A Study of Secondary Care Electronic Health Records

Dementia policy states that the early diagnosis of dementia can keep people living well for longer; however, there is little robust evidence to support this. Mild cognitive impairment (MCI) is considered a prodrome to dementia and can aid with the earlier diagnosis of dementia. The objective of this study was to use a previous diagnosis of MCI, before dementia, as a proxy for early diagnosis to investigate the relationship between an early diagnosis and mortality. A retrospective cohort study of electronic health care records from South London and Maudsley NHS. Patients aged 50+, diagnosed with dementia between January 2008 and November 2018, were divided into two groups: those with a previous diagnosis of MCI (early diagnosis) and those without. Cox regression models used to compare the risk of mortality between groups. Of 18,557 participants, 5.6%(n = 1,030) had an early diagnosis; they had fewer cognitive, psychiatric, and functional problems at dementia diagnosis. The early diagnosis group had a reduced hazard of mortality (HR = 0.86, CI = 0.77-0.97). However, the magnitude of this effect depended on the scale used to adjust for cognitive difficulties. A previous diagnosis of MCI is a helpful proxy for early diagnosis. There is some evidence that an early diagnosis is associated with a reduced risk of mortality; however, it is not clear how Mini-Mental State Exam scores affect this relationship. While these findings are promising, we cannot be conclusive on the relationship between an early diagnosis and mortality.

Family carers\u2019 involvement strategies in response to sub-optimal health services to older adults living with dementia \u2013 a qualitative study

BackgroundWhile dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities.MethodsQualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology.ResultsTwo main involvement strategies were identified: 1) being “the hub in the wheel” and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers’ weighing conflicting concerns and perceived costs and benefits.ConclusionsAwareness and acknowledgment of family carers’ strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers’ own perspectives on carer involvement is a necessary precursor to developing good care partnerships.

A systematic review and meta-analysis of dementia prevalence in seven developing countries: A STRiDE project

ABSTRACT The STRiDE project sets out to support the development of effective dementia policy in middle-income countries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa). As part of this it will generate new data about the prevalence of dementia for a subset of these countries. This study aims to identify the current estimates of dementia prevalence in these countries and where the gaps lie in the current literature. A systematic review was completed on 30th April 2019 across electronic databases, identifying dementia prevalence literature originating from any of the seven countries. Four hundred and twenty-nine records were identified following de-duplication; 28 studies met the inclusion criteria and were included in the systematic review. Pooled estimates of dementia prevalence ranged from 2% to 9% based on DSM-IV criteria; these figures were generally higher in studies using other diagnostic criteria (e.g. the 10/66 algorithm). Available prevalence data varied between countries. Only Brazil, Mexico and India had data derived from studies judged as having a low risk of bias. Irrespective of country, studies often were not explicit in detailing the representativeness of their sample, or whether there was non-response bias. Further transparent and externally valid dementia prevalence research is needed across the STRiDE countries.

Survey of the Knowledge, Attitudes and Practices of Primary Care Physician's Towards Dementia Care in Israel

Aim: Primary care physicians have an important role in the early diagnosis and management of dementia as a common first point of contact for patients dealing with cognitive decline. Our aim was to explore primary care physicians knowledge, attitudes, and practices regarding care of people with dementia and their families. Methods: A cross sectional study among primary care physicians, attending their annual conference. The self-complete questionnaire included questions measured with a five point Likert scale as well as open-ended questions. Multivariable linear regression models were used to evaluate primary care physicians confidence in their dementia diagnosis and their level of knowledge and training. Results: Questionnaires were returned by 95 primary care physicians, a 24% response rate. The majority of primary care physicians feel it is their role to diagnose dementia (87%), unfortunately, 80% do not feel confident in making this diagnosis and 66% feel they are lacking knowledge or training to do so. They report they need more training on non-pharmacological interventions (86%), pharmacological treatments (92%), and community services (92%). Regression analysis revealed that lack of easily accessible screening tools plays an important role in confidence in dementia diagnosis. Conclusion: Our results may help policy makers plan interventions to meet training and system needs of primary care physicians and translate the national dementia policy guidelines into practice at the local level. Keywords: physicians, primary care, dementia, early diagnosis, adult day care centers

The annual dementia review: exploring current practice in primary care.

Dementia is a global public health challenge, the significant consequences of which are recognised in global and national health policies. Despite approaches to improve the implementation of evidence-based dementia care in primary care and the inclusion of indicators for dementia in the Quality and Outcomes Framework (QOF), there is consistent evidence that people with dementia and their family carers lack access to care which meets their needs. This study aims to explore current practice regarding the annual dementia review in primary care by investigating: 1) what 'should' be happening in annual dementia reviews; 2) how dementia reviews are delivered in a sample of general practices; 3) the barriers and facilitators to the implementation of evidence-based care in dementia reviews; and 4) the experience of these reviews from the perspectives of people with dementia and their informal carer(s). Qualitative methods will be used. In the first stage, semi-structured interviews with national and regional experts in dementia policy and healthcare will be used to explore what 'should' be happening in an annual dementia review. In the second stage, interviews with primary healthcare team members will explore how annual dementia reviews are delivered in a sample of practices in North East England. Interviews with people with dementia and their carers will then be used to explore how reviews are experienced by service users. Thematic analysis will be used to analyse data. Key themes from the first stage will be presented and their implications in primary care discussed. The research plan for the second stage will be presented.