I'm a bit late in posting this (I had taken a lot of notes to sift through), but I found the sessions I attended at the THE conference really interesting. This was a large event with multiple consecutive sessions, so by necessity this is a selective review.
Marianne Fallon, who works as a health psychologist, discussed her PhD on biopsychosocial model of cognitive decline in people ageing with ID. Using longitudinal data from research in Ireland, IDS-TILDA, generates data that is bio, psycho, and social. The work is influence by Engel, and draws on the pathways model (2020: https://www.sciencedirect.com/science/article/abs/pii/S0277953620300654)
Fallon highlighted greater prevalence and earlier onset of dementia in people with ID and those with Down syndrome in particular. She is analysing data on social connections, cognitive health status, subjective well-being and their impact on the outcome of cognitive decline. A number of factors feed into this (e.g. loneliness affects social connections).Fallon's work will feed into the ongoing clinical work at the National Intellectual Disability Memory Service.
Geraldine Boland outlined a scoping systematic review of inclusion of people with ID in neighbourhoods. Internationally, the pace of de-institutionalisation for people with ID has varied. There is an importance in this population of being seen as competent to perform tasks within their community. Boland made an interesting point that if a group of people with ID are interacting, people without ID may feel the group's "not for them", even though the group members might be more than happy to welcome them. The scope found that work looking at lived experience of people with ID in the context of their neighbourhoods seems to be lacking. Transport was brought up at Q&A following talk. People often unable to get around neighbourhood, even if living in an urban area. Professor Mary McCarron made an interesting point about the possibility of people with ID being motorists-there didn't seem to be any in the IDS-TILDA study.
In a similar vein, Andrew Wormald talked how to avoid loneliness. It's interesting that people with ID have high levels of loneliness, despite often spending less time alone than much of the general population. A small majority of participants in IDS-TILDA reported being rarely or never lonely, but a substantial minority were lonely much of the time. Protective factors including education, working in community, fewer functional limitations (these first three likely correlate closely) and having someone to confide in that can make a change in your life (Wormald highlighted the importance of the person being able to affect change for the person with ID).
Professor Mary McCarron talked about the impact of COVID-19 on people ageing with an ID. The main study itself, as highlighted by Marianne Fallon, has a broad range of biopsychosocial assessments. Professor McCarron spoke of how glad she was to see people with Down syndrome being prioritised for vaccination. The report itself (including accessible version) is available here. Prof McCarron also mentioned an upcoming second phase questionnaire that will track the effects of the virus and the lockdown(s) over time, and in particular highlighted the importance of monitoring vaccine over time.
Fidelma Flannery discussed how people with ID have a higher rate of mental health conditions and often have multiple traumatic life events. Flannery has conducted a systematic review of the impact of COVID-19 on people with ID. Incidents of aggression initially fell, but increased after the lockdown. Other research found how being housebound had impacted on people with ID's daily lives. It was interesting to see a paper from Murphy et al. using interviews of people with ID by people with ID, also highlighting issues with isolation, although similar to the work of McCarron et al there were some positives in terms of some participants having more of a chance to have a rest. Flannery sounded a cautionary note on the long-term mental health effects of COVID-19 and the associated restrictions.
Darren McCausland's highlighted how people with ID tend to have a smaller social network, and often have limited community involvement. The closure of day services led to increased loneliness in people with ID (inclusion Ireland), while carers were concerned about their own mental health (Family Carers Ireland). McCauslan drew on IDS-TILDA data-he compared participants who were interviewed pre- and post-lockdown, controlling for data from previous wave of IDS-TILDA. Family contact was better for post-lockdown group, and there was a lack of a difference in terms of contact with friends or social activities. There was greater access to technology post-lockdown, although this finding was not repeated for tech use (suggested there might be a gap in terms of learning/training how to use tech effectively). Overall, there didn't seem to be significant adverse effect of COVID-19 and lockdown. The data was collected during the summer-McCausland noted there could have been a novelty effect, and the prolonged lockdown(s) may be of concern, and also that quality of social interactions would be worth looking at more in future.
Professor Anne Rafferty, a historian as well as Professor of Nursing Policy, gave a keynote entitled "Nerds and Nightingales". Florence Nightingale was known for data visualisation; she was able to show that medical neglect was a bigger ultimate cause of death than battlewounds (considering number dying from illnesses). Cites The Atlantic - why nerds and nurses are taking over the U.S. economy. World shortage of nurses. But we don't have good models of workforce modelling. (Future of neglect?) No doubt hits home in Ireland, given level of waiting lists etc. With COVID-19, there will be trauma built up in nursing staff, but need to understand what therapies work.
Professor Rafferty emphasised that nursing is cognitive work, and though nurses may be viewed through a sentimental lens, doctors and nurses should be viewed as intellectual peers. With increasing levels of big data and AI, nurses often tasked with improving processes, but these are still too often hampered by weak data. Cognitive work in nursing is perhaps becoming more visible now. Given the lasting trauma of COVID-19 and high levels of burnout, what impact will this have on cognitive work? High levels of stress will impair performance for more cognitively complex tasks, and the cognitive complexity of a lot of nursing work can be underestimated. Rafferty called for a shift from reactive to predictive engagement with health challenges.
Holly Dennehy spoke about Get wise about your health, addressing health disparities for people with ID (e.g. inaccessible materials, unable to access health screening programs). The project was co-developed with people with ID in Ireland and Netherlands. Get wise about your health is a novel online platform in easy-read, with a strengths-based approach that builds on what people can already do, working with people with ID, researchers and healthcare workers. Participants in the research program generally had good relationship with doctors, but would struggle to set up appointment/visit themselves, and at visits would often not speak very much. www.getwiseid.eu will support users with doctor visits (e.g. how to deal with anxiety), so that they will have more confidence in going to the doctor as well as other health behaviours such as exercise.
Speaking of evercise, Sonia McDermott spoke about PPALS: People with ID as Physical Activity LeaderS. People with ID can act as leaders for physical activity sessions. Physical activity is a pervasive problem in society, and this is also the case for people with ID, who may have barriers to engaging in physical activity. By acting as leaders of physical activity can develop confidence as well as fitness. Like Get wise, PPALS involved international collaboration (Muinch and Barcelona were involved with piloting). Most participants reported it as a positive experience, despite most of the events being held online. They held an online graduation as well. A clip at the end of the talk demonstrated people thinking outside of the box during the pandemic in terms of locations for exercise sessions.
Éilish Burke made the point during the Q&A that older age may be a new chapter, but not simply a time to withdraw or "slow down" (particularly if that means becoming sedentary). In the chat box, one person noted: The PPALS leadership course has had such a positive impact on the leaders themselves, to their peers and to the wider community. One of the leaders from the original pilot has continued to teach weekly classes to her peers and has gone on to become a national tutor to deliver a physical activity education programme using her skills to teach others in her community. Huge improvements witnessed in confidence, autonomy and overall health & wellbeing.
When working from home on survey design, data analysis and writing up papers, one can sometimes lose sight of the value of project one can be involved with as a researcher, and I think this quote is a real reminder of what people can get out of an intervention.
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