Dementia Strategy Research Articles

Understanding dementia in minority ethnic communities: The perspectives of key stakeholders interviewed as part of the IDEAL programme.

Future populations of older adults in the UK, those aged 65+, will demonstrate increased diversity in terms of their ethnic identity resultant from the ageing of the post-war migrants from India, Pakistan, Bangladesh, and the Caribbean. As a consequence, there will be an increase in the numbers of older adults from these communities living with age-related chronic diseases such as dementia. In response to these demographic changes, we need to develop a research, policy and practice agenda that is inclusive and provides evidence for the development of culturally diverse and effective models of service delivery. This requires engagement with three key stakeholder groups: (a) people with dementia; (b) their carers; and (c) the wider community. As part of the IDEAL research programme on living well with dementia, we undertook semi-structured interviews with twelve community leaders, defined as known and trusted individuals active in their respective communities, and six community members (two people living with dementia and four carers). We explored their understandings, experiences, and views of about dementia. Our analysis identified two overarching themes. The migrant lifecourse highlighted issues of not belonging, discrimination and racism. This framed our second theme, the cultural context of dementia, which addressed dementia knowledge and attitudes, service provision and service access, and how being part of a minority ethnic community made a difference to these experiences. Our study highlights how lifecourse experiences of negative hostile social and policy environments and services can be profound and long-lasting and provide a prism through which accessing dementia care is experienced. Our findings argue for the inclusion of diverse views and lifecourse experiences within the context of developing a dementia strategy for research, policy and practice that is appropriate for a multicultural and heterogenous society.

Optimising The Implementation Of A Dementia Care Education Programme For Healthcare Assistants (Home Support): Lessons From A Qualitative Study

Abstract Background Healthcare Assistants (Home Support) provide a significant level of non-clinical formal care to people with dementia at home. Training is paramount if this workforce is to provide care effectively and achieve the ideals of the Irish National Dementia Strategy. This study examined the process of implementing a QQI-FET level 5 accredited dementia home care education programme for Healthcare Assistants (Home Support), specifically designed with an emphasis on self-development and ethical and strengths-based approaches to care. Methods This study was primarily a qualitative study conducted over five months. Semi-structured interviews were conducted with stakeholders (n=16) involved in the programme’s implementation. Focus groups (n=3) were conducted with 11 programme learners. Data on programme take-up, completion and retention rates were available for review, as were reports from external reviewers, and a sample of evaluation forms completed by learners. Results The programme content and its delivery were highly regarded. Implementing the programme took much longer than planned due to the Covid-19 pandemic, putting recruitment processes in place, and problems recruiting and retaining healthcare professionals to facilitate supervisory sessions. Organizational support, and motivated healthcare assistants with positive attitudes towards training were perceived to facilitate programme uptake and completion. A range of barriers were perceived to act as disincentives to programme participation, e.g. lack of opportunities for career progression. There was strong support for rolling out the accredited programme nationwide and maintaining its in-person format. An alternative shortened non-accredited version of the programme would be welcomed by stakeholders in some areas. Conclusion This qualitative study provides a rich and nuanced perspective on a dementia home care education programme for healthcare assistants (Home Support), challenges encountered during programme implementation and changes needed to optimize implementation. The findings can be used to support strategic and operational decision-making for enhancing programme implementation.

Communicating, Eating And Drinking With Dementia

Abstract Background Problems with eating and drinking can put patients at risk of malnutrition. Hospitalised patients with dementia are at a higher risk for eating/drinking difficulties and inadequate food/fluid intake. Dysphagia in dementia can contribute to malnutrition, dehydration, weight loss, choking episodes, repeat chest infections, pneumonia, and recurrent hospitalisations - all of which can cause strain on relationships between the person with dementia and carers. Where communication (and eating/drinking/swallowing) are impacted, the person with dementia can experience a decrease in quality of life, wellbeing, sense of personhood, and quality of relationships. Direct training and indirect feeding support for care staff results in fewer mealtime difficulties, more time spent assisting at mealtimes, and a positive changes in staff attitudes towards assisting in mealtimes for people with dementia. Using observational instruments to identify eating/drinking difficulties can lead to a positive influence for staff knowledge and skills to support patients/residents. Methods Create a Departmental Information Leaflet on “Communicating, Eating and Drnking with Dementia” for staff, visitors, service users, and their families.Select a tool to be used by nursing staff to better inform on behaviours around eating and drinking with dementia (Edinburgh Feeding Evaluation in Dementia Scale (EdFED-Q)).Create a training Powerpoint for Staff on “Communicating, Eating and Drnking with Dementia” and using the EdFED-Q tool. Results Departmental Information leaflet created.Selection of the EdFED-Q tool.Training programme for nursing staff developed on Communicating, Eating and Drnking with Dementia and using the EdFED-Q tool. Conclusion As outlined in the Irish National Dementia Strategy (2014), all people who provide care or interact with those with dementia should be trained and upskilled in working with and communicating with those with dementia. It is important to continue to develop our services and build on quality initiatives to do this.

Understanding how community-dwelling persons with early dementia perceive health and community services: Informing the dementia strategy of Newfoundland and Labrador, Canada.

With an increased aging population, the number of individuals with dementia is expected to rise. The onset of dementia marks the start of negotiating access to a wide range of health and social services to find practical and emotional supports to deal with the management of changes and subsequent challenges that individual with dementia face. The toll of dementia goes beyond the health care system, affecting families and caregivers' quality of life. This places more pressure on family caregivers and health care institutions to provide services for affected individuals. It is important to understand the service needs of this population to enable them to live at home longer, contribute to society and maintain a positive quality of life. To increase understanding of how persons living at home with early dementia and their caregivers/significant others currently perceive and interact with health and community-based services and service providers. A qualitative descriptive approach was used to explore the experiences of individuals with early dementia and care providers with health and community-based services using semi-structured interviews and content analysis. Participants included 16 individuals 50years and older with mild/early dementia living at home, 22 informal caregivers of individuals with mild/early dementia, and 5 key community informants (community health nurses and social workers). Four thematic categories of barriers and two thematic categories of facilitators for access to and uptake of supportive services were identified. Five strategies to inform the development of an action plan to enhance access to, and uptake of, supportive services were determined. Early recognition of dementia through education and publicity enhanced public awareness, attention, and social inclusion with dementia-friendly neighborhoods and facilities need to be considered to achieve effective dementia-related services. Inclusion and recognition of the wishes of persons with dementia is key.

The psychological effects of research participation on people with dementia: findings from a German exploratory interview study.

The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for 8 months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and wellbeing and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.

Implementing Dementia Care Management into routine care: protocol for a cohort study in Siegen-Wittgenstein, Germany (RoutineDeCM)

IntroductionDementia Care Management is an evidence-based model of care. It has proven its efficacy and cost-effectiveness and has been applied to different settings and different target groups. However, it is...

Addressing the challenges of dementia care in Nigeria: A call for a comprehensive national strategy

AbstractDespite the growing prevalence of dementia, driven by an ageing population and compounded by cultural misunderstandings and stigma, Nigeria lacks a coherent national plan to address this issue. The article points out that although Nigeria has enacted policies such as the National Aging Policy, which do not sufficiently address the specific needs of people living with dementia. It underscores the necessity of integrating a dementia strategy within the broader health and social care systems of Nigeria. The article draws on the World Health Organization's Global Dementia Action Plan to elaborates on several critical areas for action, including public health prioritization of dementia, awareness and stigma reduction, improved diagnosis, treatment, care, and support, alongside bolstering support for caregivers. It stresses the importance of a dementia‐friendly infrastructure, research and innovation, and leveraging community support to foster a more inclusive society. Furthermore, the article outlines current state of healthcare and social support systems in Nigeria, pointing to significant gaps in infrastructure, healthcare workforce, and financial mechanisms that hinder effective dementia care. Hence, elevating dementia care as a national health priority, and increasing access to quality care and support, Nigeria is well positioned to mitigate the impact of dementia on families and the person with dementia. The call to action is clear: a national dementia strategy, informed by global best practices and tailored to Nigeria's unique cultural and societal context, is essential for addressing the challenges of dementia care and improving the well‐being of affected individuals and their families in Nigeria.

Still here: Doing things differently, working with a VCSE partner, primary care service, library and La Trobe University Australia to pilot and establish a service for people with Mild Cognitive Impairment (MCI)

A Dementia strategy group met regularly over a year, comprising carers, professionals and voluntary, community and social enterprise (VCSE) groups, and gathered views of patients which led to the identification of gaps in service provision. People with MCI described feeling lost in a system between primary care, memory clinic and VCSE and felt that once they had been diagnosed that they were ‘abandoned’ as there was not a pathway for people with their diagnosis. A pilot was established to run a group for people with MCI by psychology, primary care and Age UK Berkshire and with the intention of the VCSE group running the group in the future if the pilot was successful. The six session MCI group used material developed and evaluated in Australia, the La Trobe and Caulfield Hospital Memory group programme (LaTCH memory group) which was supplemented with lifestyle change advice. Results showed significantly greater use of memory strategies post group, and the groups were liked and valued by participants. The pilot showed the benefit of working across agencies and with carers and patients to both identify and meet gaps in service provision.

Self-help support: The Alzheimer's telephone from the user's perspective.

Telephone counseling is an important form of support for informal carers of persons with dementia. The quality and benefit of this kind of service have rarely been evaluated in Germany. We developed a survey to assess the quality of telephone counseling. We conducted an online survey among 201 users of the telephone hotline "Alzheimer-Telefon" (Alzheimer's telephone service) provided by the German Alzheimer's Association after the consultation. The aim of the study was to determine whether this form of telephone support meets certain quality criteria and the callers' needs. Of the 201 participants, 80% were female. The mean age of the callers was 51 years. 74% of cases were one-off consultations; 26% of the callers sought advice twice or more often. The most common reasons for calling included behavioral changes (45%) and finding a nursing home (41%). Other family members were significantly (p=0.036) more likely to seek local respite options. Based on the 201 online questionnaires evaluated, most callers were highly satisfied with the counseling services provided by the Alzheimer's telephone service. Those seeking advice were particularly satisfied with the appreciative and empathetic communication style of the advisors and their professional competence. This also applies to the accessibility of the telephone. More than three quarters were fully satisfied with the information they received. Almost half of the callers were sure that the advice would help to solve their issue. 14% of people seeking advice were uncertain about how to implement the suggested solutions.A further survey would be worthwhile to determine to what extent the topics of the consultation can be implemented. The feedback from relatives who use the Alzheimer's telephone repeatedly could be used for this purpose - the repetition rate is currently 25% and the trend is rising. Results could be interesting for successful counseling and for the development of further support services. The telephone hotline is a useful component of dementia care in Germany and an important contribution to the National Dementia Strategy.

How Canadian caregivers of persons living with dementia are managing in a fragmented system

People living with dementia (PLWD) often need many different health and social services throughout their journey, and navigating and accessing these services can be challenging due to a lack of integration in dementia care. PLWD often rely on caregivers, usually family members, to help them navigate the system and access the care and services they need. The importance of better co-ordination and integration of health, community, and residential dementia services has been highlighted in the World Health Organization’s (WHO) global action plan on the public health response to dementia and Canada’s National Dementia Strategy, however a widespread, robust plan for integrated care for PLWD has yet to be implemented. This leaves caregivers with the task of seeking out and accessing services on their own. The Alzheimer Societies across Canada aim to help caregivers navigate and access services by providing information, education, and support in system navigation to caregivers. In this study, we explored the experiences of caregivers accessing health and social services for their loved ones with dementia, and the role that the Alzheimer Society played in this journey. This work has been informed and guided by members the Alzheimer Society of Canada’s People with Lived Experience Advisory Group.
 We conducted semi-structured interviews with 34 caregiver clients of the Alzheimer Society across Canada in the Fall of 2022. Interviews were completed by phone or video conference and lasted between 20 and 73 minutes (mean=32 minutes). Participants were all caregivers of a PLWD and ranged in age from 42-89 (mean age= 63 years). There were 10 men, 23 women, and one non-binary person in our sample (caregiver spouse=18, caregiver child=15, caregiver sibling=1). Interviews were recorded and transcribed verbatim. Deductive coding, based on the interview questions, was used to identify themes.
 Experiences accessing health and social services varied widely among participants based on geographic location, disease progression or symptoms, existing social support and self-advocacy skills, and finances. Many caregivers had trouble accessing the services that they needed and found the system to be difficult to navigate. In many cases, the Alzheimer Society played an important role in making caregivers aware of the health and community services available and provided guidance on how to access those services in a timely way. Some participants, however, found that despite being provided with information and education, they continued to struggle due to a lack of access to quality care in the community (e.g. adult day programs, respite, and long-term care). Some participants experienced such extreme distress at being unable to access the care they needed for the PLWD, that they experienced physical and mental health issues themselves. 
 The Alzheimer Society and similar organizations help to make up for the lack of an integrated care system for PLWD, however, there remain large gaps in the ability of caregivers to access timely, adequate care. Fragmented, disjointed, and difficult to access care can have negative consequences for PLWD and their caregivers, and action is needed to further support the development of integrated dementia care services across Canada.

How are early career dementia researchers considered and supported by national dementia plans and dementia‐specific charities and associations? An overview of global policy approaches

AbstractBackgroundEarly career dementia researchers (ECDRs) represent a crucial workforce to drive dementia research. Many charities, research leaders, and pressure groups, along with people living with dementia, continue to advocate for greater investment in dementia research. It remains unclear how ECDRs are being supported in this push for research through top‐down policy approaches. This study aimed to understand how ECDRs are considered and supported by national dementia plans or strategies across countries, and dementia‐specific charities and associations.MethodForty‐six countries from the G20 member states were evaluated. Each country’s dementia plan or strategy was reviewed alongside the policies of one governmental and one non‐governmental funding body. Data were gathered through internet searches and information requests to contacts at relevant organisations in each country. Data targeting support for ECDRs were extracted and subject to content analysis using inductive coding. Findings regarding ECDR support were categorised and narratively synthesised.ResultDespite efforts to contact stakeholders directly, little to no information could be obtained from some countries due to language barriers. While most G20 member states have a national dementia plan or strategy, only China, the U.S. (excluding Puerto Rico), England, Scotland, Greece, and Denmark specifically mentioned ECDR support in their national policy, referring to creating specific ECDR funding and career opportunities. Thirteen countries were identified as providing targeted support for ECDRs via dementia‐specific charities or associations. This ECDR support reflected the following four categories: (1) research funding, such as fellowships and research grants; (2) research dissemination and networking, e.g., grants for printing a doctoral thesis or conference travel grants; (3) training and career development opportunities; and (4) research advice, including mentoring programs and grant writing assistance.ConclusionECDR support varied greatly across the G20 member states, with few formally recognising ECDRs in their national dementia plan or strategy, and mixed support provided by dementia‐specific charities and associations or government bodies. Overall, ECDRs were not considered in dementia plans and strategies in the majority of included countries, and discrepancies between support levels exist across countries. To facilitate equal prospects for ECDRs, top‐down policy approaches are urged to enhance their efforts in the future.

Availability and quality of facilities for people with dementia and their caregivers in Lithuania

AbstractBackgroundThe aim of this study was to evaluate the availability and quality of health care and social care services as well as information with dementia related topics for people with dementia (PWD) and their caregivers. The research project was a part of a project “Towards a Dementia Strategy: Situation Analysis and Public Awareness” financed by the EEA Grants 2014 – 2021 through the Active Citizens Fund.MethodThe questionnaire based on the literature and relevant themes for the county was developed with 65 questions for caregivers. An online anonymous survey was conducted from 2022 September to 2023 and distributed using “snowball” method, in which 68 respondents (mean 51.6 years of age) participated.Result48,5% of respondents cared for PWD in the early stage of disease up to five years. The mean duration to final diagnosis was 13.3 months. The most important criterion for caregivers during establishment of dementia diagnosis was conveyance about progression of disease (77.9%) and competency of health care specialists recognizing dementia symptoms (76.5%). Availability and quality of information during diagnosis establishment was evaluated 5.4 points (out of 10) and was dependent on specialist’s ability to communicate and clearly present information. 51.5% of respondents noted deficiency of information on dementia. 35.3% of respondents stated that health care services are fully provided and 23.5% of participants noted the deficiency of health care facilities, mostly services at home and outpatient rehabilitation services. Availability and quality of health care was evaluated 4.97 points (out of 10.) The most common social service is day social care service at person’s home (22.4%). 53.7% of participants noted that they do not use any social care services. Availability and quality of social care was evaluated 5 points (out of 10).ConclusionAvailability and quality of health care and social facilities for people with dementia are not meeting expectations of caregivers. There is a lack of information for people with dementia and their caregivers about dementia related topics. The scope of the study is insufficient for more detailed conclusions and further investigation is needed to induce the necessary changes.

Advocating for Change: Lessons Learned from Ontario’s Quest for a Renewed Dementia Strategy

AbstractDementia has been labelled a public health priority by the WHO; with prevalence expected to triple over the next 30 years, urgent, whole‐of‐government action is needed to prepare for unprecedented strains on our health, home, and long‐term care systems. This session will focus on the experiences of Ontario, Canada’s largest province, detailing how government, private, and not‐for‐profit stakeholders can collaborate to influence policy.The effectiveness of policy networks as a tool to create policy change, specifically in the dementia space, will be examined using Ontario as an example. Learning outcomes will include a better understanding of how public institutions make decisions, what guides a policy agenda and how to influence such, how to create a sense of urgency, defining ageing as a problem worthy of public consideration, and evaluating the success of advocacy efforts. Participants will be encouraged to consider networks they can join and/or form in their respective jurisdictions, and how they can contribute personally and/or professionally to advocacy efforts.Examples of successful advocacy initiatives in Ontario will be examined. These include public campaigns leading up to and during the 2022 Ontario general election; the Roadmap Towards a Renewed Ontario Dementia Strategy (www.alzheimer.ca/on/roadmap); and the Ontario Dementia Care Alliance (https://alzheimer.ca/on/en/take‐action/policy‐advocacy/ontario‐dementia‐care‐alliance).

172 Using the early identification and management of delirium to optimise memory pathway referrals and resources

Abstract Background Priority actions within the National Dementia Strategy are to ensure early diagnosis of dementia and to develop appropriate referral pathways and interventions to support patients. One element is the consideration of referral to memory services for patients who develop delirium within the acute hospital setting, which may suggest possible underlying cognitive impairment. We examined the effect of early identification and diagnosis of delirium via an inpatient frailty service on this process. Methods Over a 9-month period (September 2022–May 2023), patients >75 years admitted to the acute medical floor were screened with the Rockwood Clinical Frailty Scale (CFS) by a multi-disciplinary in-patient frailty team. Those with a CFS score of 5–6 (mild to moderate frailty) were prioritised for Comprehensive Geriatric Assessment (CGA), which included the 4AT delirium screening tool. Patients presenting with a 4AT of 1–3 indicating cognitive vulnerability and those with a 4AT of >4 suggesting a probable delirium with possible dementia were identified for assessment. Results 3,200 patients >75 years were admitted to the medical floor during the 9 months. Over 2,100 patients were screened for mild to moderate frailty and 495 CGA’s were completed. 105 patients presented with a 4AT of >4 with 44% not having a formal diagnosis of cognitive impairment. 74% of this cohort were referred onward to memory streams. 143 patients presented with a 4AT of 1–3. 66% did not have a formal diagnosis of cognitive impairment, of which 61% were referred onward to memory services. Conclusion The development of delirium in the acute hospital setting is an important opportunity to assess for the presence of an underlying neurodegenerative process. Early identification and management pathways for delirium can allow timely initiation of referral to specialist memory streams to aid prompt diagnosis of dementia, facilitating optimisation of care, supports, and advanced planning.

Editors' Note: Association Between Dietary Habits in Midlife With Dementia Incidence Over a 20-Year Period.

In their analysis of the Malmö Diet and Cancer Study, Dr. Glans et al. evaluated the association between incident dementia and adherence to a modified Mediterranean diet vs conventional dietary recommendations. More than 28,000 individuals were followed over an approximately 20-year period and were asked to report on their dietary habits using a detailed questionnaire, food diary, and clinical interviews. There was no significant association between incident dementia and dietary strategy. Furthermore, the lack of association was observed in various sensitivity analyses—including those with best adherence to a particular diet and when assessing Alzheimer dementia or vascular dementia as secondary outcomes or when isolating a nested cohort (n = 738) with CSF samples for amyloid-β42 accumulation. In response to this analysis, Dr. Brenner emphasizes the potential risk of dementia based on the method of food preparation (rather than simply food content). In particular, there is a relationship between advanced glycation end-products (as seen in patients with diabetes and in patients who prepare foods by grilling or frying methods). Drs. Smith and Refsum also acknowledge the bias of self-reported dietary adherence and suggest that serologic biomarkers of diet be used to support the conclusions of this report. This exchange highlights the value of heterogeneity in study methodology. For conditions such as dementia, Alzheimer disease, and others, which may be causally related to innumerable factors (including dietary content, food preparation, and adherence to a particular regimen), large population-based cohorts may reveal specific, modifiable risk factors. However, definitive associations require validation with objective biomarkers and advanced neurodiagnostic testing, which may be cost-prohibitive for studies of this scale. There is an equal need for both large-scale population-based studies and smaller cohorts, which report highly detailed clinical, physiologic, and neurodiagnostic findings. In their analysis of the Malmö Diet and Cancer Study, Dr. Glans et al. evaluated the association between incident dementia and adherence to a modified Mediterranean diet vs conventional dietary recommendations. More than 28,000 individuals were followed over an approximately 20-year period and were asked to report on their dietary habits using a detailed questionnaire, food diary, and clinical interviews. There was no significant association between incident dementia and dietary strategy. Furthermore, the lack of association was observed in various sensitivity analyses—including those with best adherence to a particular diet and when assessing Alzheimer dementia or vascular dementia as secondary outcomes or when isolating a nested cohort (n = 738) with CSF samples for amyloid-β42 accumulation. In response to this analysis, Dr. Brenner emphasizes the potential risk of dementia based on the method of food preparation (rather than simply food content). In particular, there is a relationship between advanced glycation end-products (as seen in patients with diabetes and in patients who prepare foods by grilling or frying methods). Drs. Smith and Refsum also acknowledge the bias of self-reported dietary adherence and suggest that serologic biomarkers of diet be used to support the conclusions of this report. This exchange highlights the value of heterogeneity in study methodology. For conditions such as dementia, Alzheimer disease, and others, which may be causally related to innumerable factors (including dietary content, food preparation, and adherence to a particular regimen), large population-based cohorts may reveal specific, modifiable risk factors. However, definitive associations require validation with objective biomarkers and advanced neurodiagnostic testing, which may be cost-prohibitive for studies of this scale. There is an equal need for both large-scale population-based studies and smaller cohorts, which report highly detailed clinical, physiologic, and neurodiagnostic findings.

How does a diagnosis of mild cognitive impairment impact everyday behaviours, quality of life and healthcare utilisation? A systematic review of people with MCI and their carers.

AbstractBackgroundThe UK National Dementia Strategy was developed to improve professional and public attitudes and understanding around dementia, and to ensure through all stages of dementia that patients receive high‐quality care and support(1). Mild cognitive impairment (MCI) is a prodromal stage of dementia that can impact on patients’ everyday behaviours and quality of life (QOL). Carers may undertake additional responsibilities, which may ultimately impact on their health. We conducted a systematic review on the impact of an MCI diagnosis on the lives of both the individual and carers/families, focusing on everyday behaviours, QOL, and healthcare utilisation.MethodThis systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews (PRISMA) checklist. We searched five large databases including Web of Science, Scopus, Medline, Embase and Psychinfo for studies published after Jan 2004, using appropriate key terms. Titles, abstracts and full texts were screened against set inclusion criteria. Data were extracted onto a customized data extraction sheet, and a narrative synthesis of all eligible studies was undertaken. This review was registered with PROSPERO (no CRD42021291995).ResultsTen papers were included. Patients diagnosed with MCI and cares/families described a lack of understanding of the term MCI itself, particularly around ‘mild’ and the anxiety around further cognitive decline. There was a perceived lack of information provided to both patient and carers around the diagnosis, with carers not perceiving themselves as carers up until that point. Carers also reported increased levels of depression and distress as they undertook more caring responsibilities. Carers experienced frustration with loved ones, who denied that they had memory problems and took longer to process and do things; this led to increased family conflict.ConclusionThis review identified the functional and psychosocial impact of a MCI diagnosis on people and carers. There is a critical need to combat stigma, increase information and support for people with MCI, and provide psychosocial interventions for people and carers post MCI diagnosis to enhance them to better cope and potentially reduce related depression, anxiety, and carer burden.1 Banerjee S. Living well with dementia–development of the national dementia strategy for England. Int J Geriatr Psychiatry. 2010;25:917‐922.

How well is Brazil prepared for a disease‐modifying Alzheimer’s treatment?

AbstractBackgroundWhile the majority of patients with Alzheimer’s disease resides in low and middle‐income countries, little is known of their preparedness for emerging disease‐modifying treatments. We analyze the preparedness of Brazil, one of the most populous middle‐income countries, from a capacity and institutional preparedness perspective.MethodDesk research and 12 interviews for background and capacity data. Markov model to estimate wait times for access to treatment.ResultBrazil has no national dementia strategy or established pathway for evaluation of cognitive concerns, and dementia is typically diagnosed late if at all. While members of private health plans have ready access to elective specialty care, wait times in the public sector are long. Assuming potentially treatment‐eligible patients are referred from primary to specialty care based on a brief cognitive exam and a blood test for the Alzheimer’s pathology, available capacity will not be sufficient to match the projected demand (Figure 1). The biggest obstacle is availability of dementia specialist visits, and the effect of population growth and ageing means that the wait list for specialist appointment will continue to grow from around 400,000 in 2022 to over 2.2 million in 2040. We do not project substantial wait times for confirmatory biomarker testing and treatment delivery but note that this is a consequence of patients waiting for their specialist appointments. These queues will result in estimated persistent wait times for treatment of around two years on average with substantial differences between the public and private sectors, as capacity growth is insufficient to keep up with increasing demand.ConclusionOur findings suggest that Brazil is ill‐prepared to provide timely access to an Alzheimer’s treatment with predicted wait times of about two years, largely because of a limited number of dementia specialists. Access is likely to be unequal based on socioeconomic status and geographic location. Closing this gap will be challenging because of high public debt and chronic underinvestment, leaving a focus on prevention and on use of scalable technologies, such as digital cognitive and blood tests for Alzheimer’s disease as viable option. A national dementia plan with an implementation strategy would be an important first step.

♣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.

157 STAFF MEMBERS’ PERSPECTIVES OF HOW TO INCREASE DEMENTIA-FRIENDLINESS IN AN ACUTE IRISH HOSPITAL SETTING

Abstract Background Key principles from The Irish National Dementia Strategy promote accessibility and ease of understanding for those with dementia. Those who provide services and care to people with dementia have a key role to play in identifying gaps in existing service provision. Reduced compliance with National dementia guidelines and overall reduced dementia-friendliness were noted in a hospital-wide audit. It is imperative to seek opinions from those providing direct care to dementia patients on how we can improve dementia-friendliness at a service level. Methods Random selection was used to distribute staff questionnaires. An open-ended question was used to gather their perceptions on how this hospital can improve its dementia-friendliness at a service level. Results Forty-seven suggestions were collated across the hospital. Thematic analysis identified 11 different themes; increased staffing, environmental changes, the introduction of dedicated day rooms, increased signage, and introduction of activity boxes were the most common suggestions (68% of answers). Other suggestions included use of sensory items, increased staff education, orientation boxes and improved communication with patients. Conclusion Healthcare workers have an important role in driving and implementing changes in healthcare settings. Collating staff members’ perceptions of improving dementia-friendliness is invaluable given their role in providing services to people with dementia. Implementation of the above-mentioned changes must be explored in order to increase dementia-friendliness, to maintain high-quality service provision, and to ensure compliance with National standards.

Preparedness of the Brazilian health-care system to provide access to a disease-modifying Alzheimer's disease treatment.

While the majority of patients with Alzheimer's disease resides in low and middle-income countries, little is known of their preparedness for emerging disease-modifying treatments. We analyze the preparedness of Brazil, one of the most populous middle-income countries, from a capacity and institutional preparedness perspective. Desk research and 12 interviews for background and capacity data. Markov model to estimate wait times for access to treatment. Brazil has no national dementia strategy or established pathway for evaluation of cognitive concerns, and dementia is typically diagnosed late if at all. While members of private health plans have ready access to elective specialty care, wait times in the public sector are long. Assuming potentially treatment-eligible patients are referred from primary to specialty care based on a brief cognitive exam and a blood test for the Alzheimer's pathology, available capacity will not be sufficient to match the projected demand. The biggest obstacle is availability of dementia specialist visits, and the effect of population growth and ageing means that the wait list for specialist appointment will continue to grow from around 400,000 in 2022 to over 2.2 million in 2040. We do not project substantial wait times for confirmatory biomarker testing and treatment delivery but note that this is a consequence of patients waiting for their specialist appointments. These queues will result in estimated persistent wait times for treatment of around two years on average with substantial differences between the public and private sectors, as capacity growth is insufficient to keep up with increasing demand. Our findings suggest that Brazil is ill-prepared to provide timely access to an Alzheimer's treatment with predicted wait times of about two years, largely because of a limited number of dementia specialists.