BackgroundThere is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to ‘live well’ vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs.MethodsIDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia.DiscussionIDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.Electronic supplementary materialThe online version of this article (10.1186/s12889-018-6129-7) contains supplementary material, which is available to authorized users.
An exploration of perceptions of stigma among people with early and late-onset Alzheimer's disease and those who support them; using questionnaires (n=44) and semi-structured interviews (n=14). Perceived stigma reporting was low in the questionnaires; whereas interviews revealed higher levels of perceived stigma in the form of unpredictable reactions to diagnosis, feeling stupid, and ignorance of the condition among the public. Perceived stigma was managed in similar ways across age groups; focusing on 'being the lucky ones'. Results support the need to further tackle stigma and challenge expectations, particularly given the drive to diagnose people and thereby expose them to stigma.
Following the global health pandemic of COVID-19, a spotlight has been placed on care homes in the UK and the disproportionate impact the virus has had, and continues to have (Hanratty et al., 2020). There is an urgent need to widen our knowledge base about care homes and the inclusion of people living and working in care homes in research studies. This paper presents qualitative findings from a study exploring the facilitators and barriers to research participation in care homes. Semi-structured interviews were conducted with residents (n = 12), staff (n = 15), relatives (n = 6) and researchers (n = 8) across three care homes in Scotland between 2014 and 2015. The findings suggest that the key barriers and facilitators to research participation are best captured by three themes: relationships, knowledge about research, and structural challenges. The way these themes are navigated within the care home is expected to shape the willingness and ability of care homes to engage in research. Positive relationships, accessible information about research, and adequate time and space are all likely to increase research presence within care homes.Conversely, poor relationships, alienating research communication, and limited time and space are all likely to result in care homes being unable or unwilling to participate. Overall, this paper demonstrates that care homes face several barriers to research participation, and efforts to improve relationships, raise awareness of the research process and provide flexible solutions for structural challenges are needed. Future research needs to be mindful of these challenges in order to facilitate research relating to COVID-19 and more generally in gerontology and dementia.
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