Dr Laura Booi

Background Emerging evidence suggests that Indigenous peoples may have disproportionately high rates of Alzheimer’s disease and related dementias (ADRD). However, there is a lack of data on Indigenous peoples’ knowledge and awareness of ADRD, especially in low‐ and middle‐income countries. Our aim was to investigate knowledge and awareness of ADRD, risk and protective factors, and barriers towards risk reduction in a remote Peruvian adult population. Method Adults living in Amazonian, Andean highland, coastal Peruvian regions completed a pen and paper survey about dementia knowledge, risk and protective factors, and barriers to risk reduction. Data were analyzed using descriptive statistics. Result Participants were 133 young adults (98 female; 1 non‐binary; mean age = 28.6 ± 6.4 years). Most participants identified as mixed race (i.e., Indigenous and European ancestry; 62.4%) or Quechua (28.6%). Six percent of the sample identified as White. Most participants lived in rural areas (60.2%). One third of participants were unemployed and half rated their socioeconomic status as low. Nearly one fifth of participants (18‐20%) reported not having electricity or a bathroom in their house, and one third (37.6%) did not have running water. Most participants (71.4%) said violence was a problem in their community. Half of participants (52.6%) said they were fearful about developing dementia. On average, participants recognized 5 of the 12 modifiable risk factors from the 2020 Lancet Commission on Dementia Prevention. The most endorsed factors were head injury (60.2%), social isolation (52.6%), and depression (51.1%). The least recognized factors were diet (9%) and air pollution (18%). The biggest barriers to risk reduction were lack of knowledge (63.9%), lack of money (55.6%), and pre‐existing health problems (49.6%). Conclusion Peruvian adults living in remote areas have moderate knowledge dementia risk factors but identify multiple barriers to risk reduction. Findings are among the first to explore dementia knowledge in Amazonian, Andean highland and coastal regions of Peru.

Objective: The topic of brain health across the life-course is currently receiving exponential attention. Alongside this, exposure to lifestyle-related risk factors for Alzheimer's disease and related dementias accumulates across the life-course. This study aimed to explore young adults' (18–39 years) perceptions and understanding of brain health and dementia risk. Study design: This study employed a phenomenological descriptive qualitative methodology to examine the lived experiences and perceptions of participants. Methods: Focus groups were conducted with 39 young adults (18 female, 2 non-binary) from North America (n = 20) and Europe (n = 19), conducted via video conference. Results: Participants' awareness and understanding of brain health and dementia risk factors varied, influenced by factors such as general health, family history of dementia, and personal experiences with brain health issues (e.g., traumatic brain injury). The data revealed rich insights into how participants connected (or did not connect) lifestyle factors to brain health and dementia risk. Conclusion: This study is among the first to explore young adults’ perceptions of brain health across diverse populations. While participants demonstrated moderate awareness of factors affecting brain health, they often struggled to link these factors directly to dementia risk or protective measures.

Background: Evidence suggests that risk factors for Alzheimer’s disease and related dementias (ADRD) are at least partially modifiable, and that lifestyle risk accumulates as we age. However, the prevalence and impact of lifestyle-related risk factors in young adulthood (i.e., 18-39 years) remain poorly understood, with some risk factors that are developed in early adulthood being difficult to remove and reverse at midlife. The Next Generation (NextGen) brain health survey is the first of its kind to be designed specifically for young adults, with the aim of exploring attitudes, understanding and exposure to ADRD risk and protective factors in this life stage.Methods: The NextGen survey is an international, cross-sectional survey of young adults aged 18-39 years. The survey was developed in three phases with ongoing input from public advisors (i.e., young adults from Europe, North America, and Africa). First, we adapted items from existing literature for the target population. Second, we conducted focus groups with young adults to review the items and explore new themes. Third, we piloted the survey in an international network, including brain health researchers, clinicians, and advocacy groups. Feedback was integrated to create the finalized survey.Discussion: The NextGen survey will be conducted online and made available to individuals aged 18-39 years internationally. Results will contribute new knowledge about young adults and ADRD risk exposure before mid-life, including much-needed evidence in populations that are traditionally under-represented in research. Findings will also help to identify mediators and modifiers of associations between knowledge, attitudes, and risk exposure, and provide the basis for comparison with middle-aged and older populations.

Women are significantly more likely to develop Alzheimer’s disease and related dementias (ADRD) than men. Suggestions to explain the sex differences in dementia incidence have included the influence of sex hormones with little attention paid to date as to the effect of hormonal contraception on brain health. The aim of this scoping review is to evaluate the current evidence base for associations between hormonal contraceptive use by women and non-binary people in early adulthood and brain health outcomes. A literature search was conducted using EMBASE, Medline and Google Scholar, using the keywords “hormonal contraception” OR “contraception” OR “contraceptive” AND “Alzheimer*” OR “Brain Health” OR “Dementia”. Eleven papers were identified for inclusion in the narrative synthesis. Studies recruited participants from the UK, USA, China, South Korea and Indonesia. Studies included data from women who were post-menopausal with retrospective data collection, with only one study contemporaneously collecting data from participants during the period of hormonal contraceptive use. Studies reported associations between hormonal contraceptive use and a lower risk of ADRD, particularly Alzheimer’s disease (AD), better cognition and larger grey matter volume. Some studies reported stronger associations with longer duration of hormonal contraceptive use, however, results were inconsistent. Four studies reported no significant associations between hormonal contraceptive use and measures of brain health, including brain age on MRI scans and risk of AD diagnosis. Further research is needed on young adults taking hormonal contraceptives, on different types of hormonal contraceptives (other than oral) and to explore intersections between sex, gender, race and ethnicity.

Background Exposure to lifestyle-related risk factors for Alzheimer’s disease and related dementias (ADRD) accumulates across the life course, yet there is limited knowledge about awareness and understanding of ADRD risk factors among young adults. The aim of this study was to investigate young adults’ (18-39 years) understanding of ADRD risk and protective factors and how this relates to conceptualization of their own brain health.MethodsYoung adults (N=39; 18 female) from North America (n=20) and Europe (n=19) were recruited to a qualitative study using focus groups conducted over video conference technology. Participants had a mean age of 26 years (SD=3.68). Most participants identified as Black (76%), followed by White (15%), Asian (6%) and mixed race (3%). Focus groups were audio recorded and transcribed and data were analysed using reflexive thematic analysis. FindingsIndividuals’ awareness and understanding of risk factors and brain health varied according to their general health, family history of ADRD and personal experience of brain health issues (e.g., traumatic brain injury). Regarding factors that can improve brain health, participants highlighted the importance of sleep, good nutrition and physical exercise. Regarding factors that can negatively affect brain health, participants highlighted exposure to racism and discrimination, poor sleep quality, stress, and excessive alcohol consumption. Participants also reported being unsure about many factors, such as screen-time, cannabis use, engagement with social media and video games. InterpretationsFindings from this study are among the first to explore perceptions around brain health in a diverse young adult population. Young adults had a moderate level of awareness of factors that can affect brain health, but they often did not connect these to risk of or protection against ADRD. Outputs from this study will be used to inform a large-scale, international survey to explore brain health awareness, understanding and exposure to risk factors among 18-39-year-olds.

Maintaining and improving brain health, one of the most critical global challenges of this century, necessitates innovative, interdisciplinary, and collaborative strategies to address the growing challenges in Latin America and the Caribbean. This paper introduces Brain Health Diplomacy (BHD) as a pioneering approach to bridge disciplinary and geographic boundaries and mobilize resources to promote equitable brain health outcomes in the region. Our framework provides a toolkit for emerging brain health leaders, equipping them with essential concepts and practical resources to apply in their professional work and collaborations. By providing case studies, we highlight the importance of culturally sensitive, region-specific interventions to address unique needs of vulnerable populations. By encouraging dialogue, ideation, and cross-sector discussions, we aspire to develop new research, policy, and programmatic avenues. The novel BHD approach has the potential to revolutionize brain health across the region and beyond, ultimately contributing to a more equitable global cognitive health landscape.

INTRODUCTION: Women are significantly more likely to develop Alzheimer's disease and related dementias (ADRD) than men. Suggestions to explain the sex differences in dementia incidence have included the influence of sex hormones with little attention paid to date as to the effect of hormonal contraception on brain health. The aim of this scoping review is to evaluate the current evidence base for associations between hormonal contraceptive use by women and non-binary people in early adulthood and brain health outcomes. METHODS: A literature search was conducted using EMBASE, Medline and Google Scholar, using the keywords "hormonal contraception" OR "contraception" OR "contraceptive" AND "Alzheimer*" OR "Brain Health" OR "Dementia". RESULTS: Eleven papers were identified for inclusion in the narrative synthesis. Studies recruited participants from the UK, USA, China, South Korea and Indonesia. Studies included data from women who were post-menopausal with retrospective data collection, with only one study contemporaneously collecting data from participants during the period of hormonal contraceptive use. Studies reported associations between hormonal contraceptive use and a lower risk of ADRD, particularly Alzheimer's disease (AD), better cognition and larger grey matter volume. Some studies reported stronger associations with longer duration of hormonal contraceptive use, however, results were inconsistent. Four studies reported no significant associations between hormonal contraceptive use and measures of brain health, including brain age on MRI scans and risk of AD diagnosis. DISCUSSION: Further research is needed on young adults taking hormonal contraceptives, on different types of hormonal contraceptives (other than oral) and to explore intersections between sex, gender, race and ethnicity. SYSTEMATIC REVIEW REGISTRATION: https://doi.org/10.17605/OSF.IO/MVX63, identifier: OSF.io: 10.17605/OSF.IO/MVX63.

This position statement of the Expert Panel on Brain Health of the American Association for Geriatric Psychiatry (AAGP) emphasizes the critical role of life course brain health in shaping mental well-being during the later stages of life. Evidence posits that maintaining optimal brain health earlier in life is crucial for preventing and managing brain aging-related disorders such as dementia/cognitive decline, depression, stroke, and anxiety. We advocate for a holistic approach that integrates medical, psychological, and social frameworks with culturally tailored interventions across the lifespan to promote brain health and overall mental well-being in aging adults across all communities. Furthermore, our statement underscores the significance of prevention, early detection, and intervention in identifying cognitive decline, mood changes, and related mental illness. Action should also be taken to understand and address the needs of communities that traditionally have unequal access to preventive health information and services. By implementing culturally relevant and tailored evidence-based practices and advancing research in geriatric psychiatry, behavioral neurology, and geroscience, we can enhance the quality of life for older adults facing the unique challenges of aging. This position statement emphasizes the intrinsic link between brain health and mental health in aging, urging healthcare professionals, policymakers, and a broader society to prioritize comprehensive strategies that safeguard and promote brain health from birth through later years across all communities. The AAGP Expert Panel has the goal of launching further activities in the coming months and years.

Recent HCI research has addressed emerging approaches for public engagement. One such public-facing method which has gained popularity over the previous decade has been open design events, or hackathons. In this article, we report on DemVR, a hackathon event that invited designers, technologists, and students of these disciplines to design Virtual Reality (VR) environments for people with dementia and their care partners. While our event gained reasonable attraction from designers and developers, this article unpacks the challenges in representing and involving people with dementia in these events, which had multiple knock-on effects on participant's outputs. Our analysis presents insights into participants’ motivations, challenges participants faced when constructing their “absent user”, and the design features teams developed to address the social context of the user. We conclude the article by proposing a set of commitments for collaborative design events, community building through design, and reification in design.

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of non-normative gender identities and sexualities. Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Walrath wrote an opinion editorial, published in the Irish Times during the 2019 PRIDE festival, and were subsequently invited by HRB Open Access to provide a more detailed expansion of that work. In this Open Letter we describe the theme of ‘diversity and brain health’ and some of the lessons we learned from listening to the lived experience of older LGBT+ people in Ireland today. We illustrate why it’s important to understand the lived experience of older LGBT+ people and highlight the failure of the State to evaluate the experience of LGBT+ people in policy implementation. We call on researchers, clinicians, service planners and policy makers, to recognize and address diversity as an important way to address health inequities in Ireland.

NG

The potential for future prevention of Alzheimer's disease and related dementias (ADRD) through healthy lifestyle change is spurring a positive brain health movement. However, most ADRD research continues to focus on mid- and later life. We lack evidence regarding risk exposure and protective factors in young adulthood, i.e., 18-39 years. Brain capital is an emerging framework that represents the combination of education, knowledge, skills, and optimal brain health that people accumulate over their lives. Building on this framework, we present a new model that focuses on optimizing brain health in young adulthood; namely, young adult brain capital. Increasing focus on younger populations is critical for developing citizens who are emotionally intelligent, resilient and can anticipate and cope with rapid changes in the world. By understanding the values that are key drivers and motivators for young adults, we can empower the next generation to become active agents in optimizing their brain health and reducing their risk for future ADRD.

We should promote brain health as an aspirational goal, like fitness

Background: Brain health diplomacy aims to influence the global policy environment for brain health (i.e. dementia, depression, and other mind/brain disorders) and bridges the disciplines of global brain health, international affairs, management, law, and economics. Determinants of brain health include educational attainment, diet, access to health care, physical activity, social support, and environmental exposures, as well as chronic brain disorders and treatment. Global challenges associated with these determinants include large-scale conflicts and consequent mass migration, chemical contaminants, air quality, socioeconomic status, climate change, and global population aging. Given the rapidly advancing technological innovations impacting brain health, it is paramount to optimize the benefits and mitigate the drawbacks of such technologies. Objective: We propose a working model of Brain health INnovation Diplomacy (BIND). Methods: We prepared a selective review using literature searches of studies pertaining to brain health technological innovation and diplomacy. Results: BIND aims to improve global brain health outcomes by leveraging technological innovation, entrepreneurship, and innovation diplomacy. It acknowledges the key role that technology, entrepreneurship, and digitization play and will increasingly play in the future of brain health for individuals and societies alike. It strengthens the positive role of novel solutions, recognizes and works to manage both real and potential risks of digital platforms. It is recognition of the political, ethical, cultural, and economic influences that brain health technological innovation and entrepreneurship can have. Conclusions: By creating a framework for BIND, we can use this to ensure a systematic model for the use of technology to optimize brain health.

Background Inequalities and gaps in post-diagnostic support (PDS) for people with dementia persist despite a policy focus on dementia in England and Wales. Understanding and overcoming the factors contributing to these inequalities is vital to improve care for people living with dementia (PLWD) and their families. Objective To explore common barriers to the delivery of PDS in England and Wales and describe successful strategies to address them, drawing on examples from current practice. Design Qualitative semi-structured interviews, focus groups and observation. Settings Phase 1: interviewees were drawn from multiple sectors across England and Wales, including NHS clinical commissioning groups and social care. Phase 2: six case study sites based in different sectors (primary care, secondary mental health and third sector) in England. Participants Phase 1: 61 professionals, including commissioners and service managers. Phase 2: 68 professionals, including frontline staff and those working in related services; 17 PLWD; 31 carers. Results Barriers to implementing PDS in dementia were an unsupportive infrastructure, limited proactive review and limited capacity and capability particularly in primary care. Strategies used successfully in practice to address these challenges included creating opportunities for service development, improving joint working, supporting non-specialists and developing ongoing, holistic review and care planning. Conclusion A range of practical strategies have been identified to address many of the common barriers to PDS in dementia. To achieve policy goals of a task-shifted and task-shared approach to PDS, widespread use of these strategies is recommended.

This Open Letter discusses the theme of ‘diversity in brain health’ in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of ‘Diversity and Brain Health’ through the lens of lesbian, gay, bisexual, transgender/transsexual plus (LGBT+).  . Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Walrath wrote an opinion editorial, published in the Irish Times during the 2019 PRIDE festival, and were subsequently invited by HRB Open Research to provide a more detailed expansion of that work. In this Open Letter we describe the theme of ‘diversity and brain health’ and some of the lessons we learned from listening to the lived experience of older LGBT+ people in Ireland today. We illustrate why it’s important to understand the lived experience of older LGBT+ people and highlight the failure of the State to evaluate the experience of LGBT+ people in policy implementation. We call on researchers, clinicians, service planners and policy makers, to recognize and address diversity as an important way to address health inequities in Ireland.

Background There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. Results Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.

Aims To provide insight into the everyday realities facing care aides working in long-term residential care (LTRC), and how they perceive their role in society. Design A qualitative ethnographic case study. Methods Data were collected over. 10 months of fieldwork at one LTRC setting [September 2015 to June 2016] in Western Canada; semi-structured interviews (70 h) with 31 care aides; and naturalistic observation (170 h). Data were analysed using reflexive thematic analysis. Results The findings in this work highlight the underpinned ageism of society, the gendered work of body care, and the tension between the need for relational connections – which requires time and economic profit. Four themes were identified, each relating to the lack of training, support, and appreciation care aides felt about their role in LTRC. Conclusion Care aides remain an unsupported workforce that is essential to the provision of high-quality care in LTRC. To support the care aide role, suggestions include: (i) regulate and improve care aide training; (ii) strengthen care aides autonomy of their care delivery; and (iii) reduce stigma by increasing awareness of the care aide role. Impact What problem did the study address? The unsupportive working conditions care aides experience in LTRC and the subsequent poor quality of care often seen delivered in LTRC settings. What were the main findings? Although care aides express strong affection for the residents they care for, they experience insurmountable systemic and institutional barriers preventing them from delivering care. Where and on whom will the research have impact? Care aides, care aide educators, care aide supervisors and managers in LTRC, retirement communities, and home care settings.

Within many societies and cultures around the world, older adults are too often undervalued and underappreciated. This exacerbates many key challenges that older adults may face. It also undermines the many positive aspects of late life that are of tremendous value at both an individual and societal level. We propose a new approach to elevate health and well-being in late life by optimizing late-life Brain Capital. This form of capital prioritizes brain skills and brain health in a brain economy, which the challenges and opportunities of the 21st-century demands. This approach incorporates investing in late-life Brain Capital, developing initiatives focused on building late-life Brain Capital.

BACKGROUND: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. METHODS: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. RESULTS: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. CONCLUSION: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.

Efforts to prevent dementia can benefit from precision interventions delivered to the right population at the right time; that is, when the potential to reduce risk is the highest. Young adults (aged 18-39 years) are a neglected population in dementia research and policy making despite being highly exposed to several known modifiable risk factors. The risk and protective factors that have the biggest effect on dementia outcomes in young adulthood, and how these associations differ across regions and groups, still remain unclear. To address these uncertainties, the Next Generation Brain Health team convened a multidisciplinary expert group representing 15 nations across six continents. We identified several high-priority modifiable factors in young adulthood and devised five key recommendations for promoting brain health, ranging from individual to policy levels. Increasing research and policy focus on brain health across the life course, inclusive of younger populations, is the next crucial step in the efforts to prevent dementia at the global level.

BackgroundEvidence suggests that risk factors for Alzheimer’s disease and related dementias (ADRD) are at least partially modifiable, and that lifestyle risk accumulates as we age. However, the prevalence and impact of lifestyle-related risk factors in young adulthood (i.e., 18–39 years) remain poorly understood, with some risk factors that are developed in early adulthood being difficult to remove and reverse at midlife. The Next Generation (NextGen) Brain Health Survey is the first of its kind to be designed specifically for young adults, with the aim of exploring attitudes, understanding and exposure to ADRD risk and protective factors in this life stage.MethodsThe NextGen survey is an international, cross-sectional survey of young adults aged 18–39 years. The survey was developed in three phases with ongoing input from public advisors (i.e., young adults from Europe, North America, and Africa). First, we adapted items from existing literature for the target population. Second, we conducted focus groups with young adults to review the items and explore new themes. Third, we piloted the survey in an international network, including brain health researchers, clinicians, and advocacy groups. Feedback was integrated to create the finalized survey.DiscussionThe NextGen survey is conducted online and made available to individuals aged 18–39 years internationally. Results will contribute new knowledge about young adults and ADRD risk exposure before mid-life, including much-needed evidence in populations that are traditionally under-represented in research. Findings will help identify mediators and modifiers of associations between knowledge, attitudes, and risk exposure, and provide the basis for comparison with middle-aged and older populations.

The potential for future prevention of Alzheimer’s disease and related dementias (ADRD) through healthy lifestyle change is spurring a positive brain health movement. However, most ADRD research continues to focus on mid- and later life. We lack evidence regarding risk exposure and protective factors in young adulthood, i.e., 18–39 years. Brain capital is an emerging framework that represents the combination of education, knowledge, skills, and optimal brain health that people accumulate over their lives. Building on this framework, we present a new model that focuses on optimizing brain health in young adulthood; namely, young adult brain capital. Increasing focus on younger populations is critical for developing citizens who are emotionally intelligent, resilient and can anticipate and cope with rapid changes in the world. By understanding the values that are key drivers and motivators for young adults, we can empower the next generation to become active agents in optimizing their brain health and reducing their risk for future ADRD.

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Background: Evidence suggests that risk factors for Alzheimer’s disease and related dementias (ADRD) are at least partially modifiable, and that lifestyle risk accumulates as we age. However, the prevalence and impact of lifestyle-related risk factors in young adulthood (i.e., 18-39 years) remain poorly understood, with some risk factors that are developed in early adulthood being difficult to remove and reverse at midlife. The Next Generation (NextGen) brain health survey is the first of its kind to be designed specifically for young adults, with the aim of exploring attitudes, understanding and exposure to ADRD risk and protective factors in this life stage. Methods: The NextGen survey is an international, cross-sectional survey of young adults aged 18-39 years. The survey was developed in three phases with ongoing input from public advisors (i.e., young adults from Europe, North America, and Africa). First, we adapted items from existing literature for the target population. Second, we conducted focus groups with young adults to review the items and explore new themes. Third, we piloted the survey in an international network, including brain health researchers, clinicians, and advocacy groups. Feedback was integrated to create the finalized survey. Discussion: The NextGen survey will be conducted online and made available to individuals aged 18-39 years internationally. Results will contribute new knowledge about young adults and ADRD risk exposure before mid-life, including much-needed evidence in populations that are traditionally under-represented in research. Findings will also help to identify mediators and modifiers of associations between knowledge, attitudes, and risk exposure, and provide the basis for comparison with middle-aged and older populations.

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BACKGROUND: Care aides provide up to 70-90% of the direct care for residents in long-term care (LTC) and thus hold great potential in improving residents' quality of life and end-of-life (EoL) care experiences. Although the scope and necessity of the care aide role is predicted to increase in the future, there is a lack of understanding around their perceptions and experiences of delivering EoL care in LTC settings. The aim of this study was to gain an understanding of the perspectives, experiences, and working conditions of care aides delivering end-of-life care in LTC in a rural setting, within a high-income country. METHODS: Data were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 h) with 31 care aides; and observation (170 h). Data were analysed using Reflexive Thematic Analysis. RESULTS: Two themes were identified: (i) the emotional toll that delivering this care takes on the care aids and; (ii) the need for healing and support among this workforce. Findings show that the vast majority of care aides reported feeling unprepared for the delivery of the complex care work required for good EoL care. Findings indicate that there are no adequate resources available for care aides' to support the mental and emotional aspects of their role in the delivery of EoL care in LTC. Participants shared unique stories of their own self-care traditions to support their grief, processing and emotional healing. CONCLUSIONS: To facilitate the health and well-being of this essential workforce internationally, care aides need to have appropriate training and preparation for the complex care work required for good EoL care. It is essential that mechanisms in LTC become mandatory to support care aides' mental health and emotional well-being in this role. Implications for practice highlight the need for greater care and attention played on the part of the educational settings during their selection and acceptance process to train care aides to ensure they have previous experience and societal awareness of what care in LTC settings entails, especially regarding EoL experiences.

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Background: Care aides provide upwards of 90% of the direct care for residents in long-term care (LTC) and thus hold great potential in improving residents’ quality of life and end-of-life (EoL) care experiences. Although the scope and necessity of the care aide role is predicted to increase in the future, there is a lack of understanding around their perceptions and experiences of delivering EoL care in LTC settings.Methods: Data were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 hours) with 31 care aides; and naturalistic observation (170 hours). Data were analysed using Reflexive Thematic Analysis.Results: Three themes were identified: (i) the lack of training and preparedness for the role of EoL care; (ii) the emotional toll that delivering this care takes on the care aids and; (iii) the need for healing and support among this workforce. Findings show that the vast majority of care aides reported feeling unprepared for the delivery of the complex care work required for good EoL care. Findings indicate that there are not adequate resources available for care aides’ to support the mental and emotional aspect of their role in the delivery of EoL care in LTC. Participants shared unique stories of their own self-care traditions to support their grief, processing and emotional healing. Conclusions: The care aides’ role in LTC is of increasing importance, especially in relation to the ageing population and the delivery of EoL care. To facilitate the health and wellbeing of this essential workforce, care aides need to have appropriate training and preparation for the complex care work required for good EoL care. It is essential that mechanisms in LTC become mandatory to support care aides' mental health and emotional wellbeing in this role.

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