Typologies of caregiving: Understanding support needs of carers across four continents

Background Caregivers play an essential role in supporting people living with Alzheimer’s disease globally. Cross-country research on caregivers’ experiences of coping is a prerequisite to developing useful trans-cultural guidelines for support organisations. While some coping strategies of caregivers globally have been identified, these are neither well understood or elaborated, nor linked effectively into carer support offerings. Methods In partnership with Alzheimer’s Disease International (ADI) and Roche, we conducted in-depth qualitative interviews with photo-elicitation with 34 caregivers from UK, US, Brazil, and South Africa to understand critical factors in coping during and after the pandemic. Inductive narrative analysis of data and participant generated images coded to dominant themes (Relationships and Caring role) were developed with input from global and national charity and industry sectors. Results We uncovered four caregiving styles: Empaths used emotion-focused strategies to construct their caring role ('put yourself in that person’s shoes’). They tended to develop strong coping skills, but needed psychosocial support and time specific information. Organisers used problem-focused strategies and sought information and training early on ('I’m a pretty good expert now’). They developed strong narratives of organisation, advocacy and expertise. Non-identifiers managed some aspects of the caring role but felt isolated and lacked knowledge and expertise ('do everything I can…there’s nobody else’). They sought others to manage disease related support. Reluctants struggled with unwanted caring duties ('I didn’t sign up for this’). They needed support in coming to terms with their loved one’s diagnosis and professional help with the day-to-day caring role. Conclusion Our findings highlight the need for tailored user-driven support offerings, that begin with the individual carer’s experiences and needs. Our typology will be used in the communication and development of findings and best practice guidelines to inform charities and policy makers about cost effective ways of tailoring support to fit individual carer circumstances globally

Clinical research in dementia: A perspective on implementing innovation

The increasing global prevalence of dementia demands concrete actions that are aimed strategically at optimizing processes that drive clinical innovation. The first step in this direction requires outlining hurdles in the transition from research to practice. The different parties needed to support translational processes have communication mismatches; methodological gaps hamper evidence-based decision-making; and data are insufficient to provide reliable estimates of long-term health benefits and costs in decisional models. Pilot projects are tackling some of these gaps, but appropriate methods often still need to be devised or adapted to the dementia field. A consistent implementation perspective along the whole translational continuum, explicitly defined and shared among the relevant stakeholders, should overcome the "research-versus-adoption" dichotomy, and tackle the implementation cliff early on. Concrete next steps may consist of providing tools that support the effective participation of heterogeneous stakeholders and agreeing on a definition of clinical significance that facilitates the selection of proper outcome measures

Equity and balance in applied dementia research: A charter of conduct and checklist for global collaborations

International audienc