Hormonal contraception and risk for cognitive impairment or Alzheimer's disease and related dementias in young women: a scoping review of the evidence

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

Hormonal contraception and risk for cognitive impairment or Alzheimer's disease and related dementias in young women: a scoping review of the evidence

IntroductionWomen 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.MethodsA 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”.ResultsEleven 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.DiscussionFurther 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 Registrationhttps://doi.org/10.17605/OSF.IO/MVX63, identifier: OSF.io: 10.17605/OSF.IO/MVX6

Sleep Diplomacy: an Approach to Boosting global brain health

Sleep diplomacy highlights the urgent need to address the widespread issue of sleep deprivation and its detrimental effects on overall health, particularly brain health and healthy ageing. By providing practical advice on sleep hygiene, healthy schedules, and light exposure, sleep diplomacy aims to promote a comprehensive approach to well-being. Despite the well-established importance of sleep for optimal cognitive function, emotional regulation, and physical abilities, it is often neglected in public and medical recommendations. Our proposed concept of sleep diplomacy also offers practical recommendations to address sleep issues in various settings and populations

Sleep diplomacy: an approach to boosting global brain health

Sleep diplomacy highlights the urgent need to address the widespread issue of sleep deprivation and its detrimental effects on overall health, particularly brain health and healthy ageing. By providing practical advice on sleep hygiene, healthy schedules, and light exposure, sleep diplomacy aims to promote a comprehensive approach to well-being. Despite the well-established importance of sleep for optimal cognitive function, emotional regulation, and physical abilities, it is often neglected in public and medical recommendations.Our proposed concept of sleep diplomacy also offers practical recommendations to address sleep issues in various settings and populations.Fil: Golombek, Diego Andrés. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de San Andrés; ArgentinaFil: Booi, Laura. Leeds Beckett University; Reino Unido. Trinity College; IrlandaFil: Campbell, Dominic. Trinity College; IrlandaFil: Dawson, Walter D. Trinity College; Irlanda. University of California; Estados Unidos. Global Brain Health Institute; Estados Unidos. Oregon Health and Science University; Estados Unidos. Portland State University; Estados UnidosFil: Eyre, Harris. Rice University; Estados Unidos. University of California; Estados UnidosFil: Lawlor, Brian. Trinity College; IrlandaFil: Ibañez, Agustin Mariano. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad de San Andrés; Argentina. Trinity College; Irlanda. University of California; Estados Unidos. Global Brain Health Institute; Estados Unidos. Universidad Adolfo Ibañez; Chil

Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice

open access articleBackground: 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

Improving primary care based post-diagnostic support for people living with dementia and carers: Developing a complex intervention using the Theory of Change

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

Exploring Participants’ Representations and Shifting Sensitivities in a Hackathon for Dementia

Recent HCI research has addressed emerging approaches for public engagement. One such public-facing method which has gained popularity over the previous decade have been open design events, or hackathons. In this paper 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 paper 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 paper by proposing a set of commitments for collaborative design events, community building through design, and reification in design

The aching backbone: perceptions and experiences of care aides in long term residential care

Purpose: Care aides provide most of the direct care for residents in long-term residential care (LTRC), and thus hold the greatest potential to improve residents’ quality of life. Two-thirds of residents in these facilities are older adults with dementia. The number of care aides working in LTRC needed to support Canada’s aging population is only expected to increase with time. Like residents in LTRC, care aides are a disenfranchised population. There is little understanding of what are the experiences and perceptions of care aides in LTRC. This doctoral thesis adds to the scarce body of knowledge that sheds light on the experience of care aides in LTRC. This study was informed by the literature on person-centered care and personhood theory, as well as critical gerontology and institutional theory. The purpose of this study was to understand the experiences and perceptions held by care aides in LTRC and to identify their perceived barriers and facilitators toward the delivery of care to residents. Method: The overall methodology for this study was a qualitative design, using ethnographic data-generating methods from one complex-care floor located within a campus of care facility in rural and remote Western Canada. Data sources for this study included the following: semi-structured interviews (70 hours) with 31 care aides, naturalistic observation (170 hours), and reflexive journaling (20,000 words). Thematic analysis was used to examine all data sources. Results: Care aides’ experiences entering and working in LTRC are varied; however, there are common overarching themes, including not being adequately trained for the realities of working as care providers and the scope of practice they are expected to fulfill within LTRC, as well as being under supported in their role. Participants report strong feelings of responsibility and affection for their residents, yet they perceive insurmountable barriers in their role that prevent them from delivering the care they would like to give. These barriers include the following: (i) lack of standardized education and training; (ii) lack of proper equipment; (iii) lack of autonomy over their residents; (iv) politics and bullying within the power hierarchy of LTRC; and (v) chronic unaddressed moral distress among care aides. Suggestions for improvement of care delivery in LTRC include the following: (i) standardization of care aide education and training; (ii) incorporation of reporting measures specifically for care aides; and (iii) increased autonomy of care aides over their residents. Implications: The support and empowerment of care aides in LTRC are fundamental in the delivery of good care to residents. Care aides have expressed that their attitudes toward their job are low because they feel unheard and voiceless within their work environment. Efforts to empower care aides’ voices should be developed and implemented to meet the needs of a large segment of Canada’s population living with dementia—residents in LTRC

Social interactions, wellbeing and health in the oldest old: what can we learn from daily life approaches?

Canada, like many Western societies, has an aging population. Past research indicates that social interactions are meaningfully associated with physical and mental health. Unfortunately, very few studies have included individuals older than 85 years. This is important because the Oldest Old are the fastest growing segment of the Canadian population. This study is based on a subsample of the Berlin Aging Study (N = 83; Mean age = 81.1 years) who participated in an intensive, one-week time-sampling module. I examined how older adults regulate their social interactions by looking at two competing theories, the Convoy Model and the Socioemotional Selectivity Theory. I also examined how daily social interactions are associated with concurrent affective experiences and physical symptoms. This study found that even when controlling for cognition and overall health, age was associated with a decrease in social interactions in the present sample of older adults. Results showed that a more limited future time perspective in this sample was associated with a greater amount of time spent alone as well as a greater number of socially unpreferred situations. Furthermore, a greater amount of time spent alone was associated with lower levels of daily wellbeing. Results also showed that time spent alone was a risk factor for mortality. I discuss possible explanations as to why my findings complement past research by showing less favorable associations between social interactions and wellbeing in the Oldest Old.Arts, Faculty ofPsychology, Department ofGraduat

'I wouldn't choose this work again':Perspectives and experiences of care aides in long-term residential care

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