Reminiscence groupwork as meaningful activity

 

There has been some research interest over the last few years in the effect of reminiscence and its effect on autobiographical memory performance, perhaps particularly in people with impairment in autobiographical memory. In the pre-COVID "before times", I was involved in a project with a service provider that organises various activities for residents and people from the local community.  

We ran reminiscence sessions that covered subjects drawing on personal autobiography as well as some broader social/political events in Irish history (all participants were Irish). There was a comparison condition where we ran sessions with similar topics, but with a focus on the present (e.g. covering lifelong learning/learning new things, whereas the equivalent reminiscence session was about schooldays). We offered both groups to all participants, assessing their autobiographical memory retrieval at baseline and after both of the groups. 

Although I was going in with the idea of running the groups specifically with people with memory impairment, the meaningful activities manager suggested it would work better with a more mixed group. The inclusion of people with no cognitive impairment and those with dementia in the same group might have seemed daunting at first glance, but actually worked well, as participants could remind each other of memories at a more personalised/localised level than I would have been able to. The group had 6-8 people in general, but we were able to break into smaller groups of 2 or 3 so that people had more scope for taking turns in discussing their memories.

When assessed using a structured interview, autobiographical memory retrieval didn't seem to be substantially affected (I should say it was a small sample). However, the meaningful activities manager indicated that the people who took part in the groups and their families reported a greater engagement with reminiscence during their daily lives. There's a general lesson in there about how, although cognitive assessments at a given point in time can be controlled and tight, they may struggle to capture cognition "in the wild".

It's great to see a manuscript based on this project published in Groupwork, whose special issue on groupwork and research prompted us to think about some of the processes of this work in greater depth. I must acknowledge as well that the project wouldn't have been possible without the help of the staff at the service provider. 

Allen, A., Tully, M. L., O’Neill, D., & Roche, R. A. (2021). Reminiscence groupwork and autobiographical memory as part of meaningful activities. Groupwork, 30(1). https://doi.org/10.1921/gpwk.v30i1.1548

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Seminar: Supporting people with an intellectual disability at end-of-life

 

Death may be in the news every day, but most of us probably don't want to think about our own deaths, and perhaps are even more reluctant to talk to our family members about the end of our lives or theirs. In the past, people with intellectual disability have been somewhat shielded from the concept of death by people caring for them, which has often left them poorly prepared for their end of their lives. 

Data from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) does seem to show that things are changing. Nonetheless, family members do struggle with starting a conversation around the end of life, and wondering when to initiate such a conversation. However, people with intellectual disability have expressed an interest in receiving concrete, unambiguous information about death and dying.

At an interesting seminar for palliative care week, Dr Éilis Burke from the Trinity Centre of Ageing and Intellectual Disability talked about accessible materials she has developed with her colleagues to help people with intellectual disability build up a picture of what they want for the end of their lives. These materials can help the carer/family member to shift the perspective from themselves to the person with intellectual disability. The documents Dr Burke have prepared are living documents that will be revisited over time.

Small conversations can help to build up sense of what people want for the end of their life. As with the general population, the end of life may come sooner than expected, so having some conversations in advance can be helpful. In having these conversations, it is important to build knowledge of the person with intellectual disability, and take a collaborative approach in delivering information at a level the individual can take on board. 

Transition points in life can be a good point for beginning conversations around death and dying (e.g. shortly after a serious diagnosis) Or it could just be when someone raises the issue themselves - it could be prompted by something as simple as a storyline on a soap opera. Ideally, talking about the end of life is not a one-off conversation, but an ongoing discourse over time. Help the person think about what brings comfort, happiness or dignity to them, get a conversation going with family and friends as well, write it down and review.

Liz Hunt (RNID & Area manager, Brothers of Charity Services) gave an account of the use of this tool. The services take a person-centred approach with a focus on rights. A key theme of this is empowerment (e.g. starting from the assumption that people have the capacity to make decisions for themselves) and engagement (e.g. using accessible materials to assist with decision-making). Staff at the services had generally known the people they were working with for a long time, so close relationships had been developed. A multidisciplinary team collaborated in the process, and worked with the person's family from the beginning. Liz Hunt gave the example of someone's favourite CD being carried to the altar, and angels being part of her final days, as she had talked about angels frequently. 

I imagine for a lot of people this is like starting one's homework or having a talk about the birds and the bees with one's kids - starting is the hard part, but once you have a framework in this place this will help to take the first steps.

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Defining brain health

The term "brain health" is used with increasing frequency. Looking at the scholarly literature, there were only a handful of references to this term through the nineties and noughties, until it increased exponentially in the 2010's (even allowing for exponential increases in academic publishing more generally). Given the amount of money that can be ploughed into products and approaches claiming to enhance brain health, one might think "the experts" had a clear idea of exactly what brain health is. However, there is a lack of consensus on what the term "brain health" means. 

The authors used a hybrid concept analysis method which combined review of the existing literature (from 1990-2020) with original fieldwork. The latter involved an international online survey of the community of the Global Brain Health Institute. In a final analysis, they developed a working definition based on the two bodies of work. From the outset, the authors were keen not to define brain health as simply the absence of brain disease, citing the World Health Organisation's statement that ‘health is a state of complete physical, mental, and social well‐being and not merely the absence of disease or infirmity'. They also wished to avoid equating health with the idea of "average" or "normal".

The review of the existing literature found twelve difference models of "brain health": a biological function model, (absence of) disease model, cognitive model, prevention model, well-being and holistic model, multidomain model, fitness model, dynamic process life course model, optimal function model, autonomy-resilience model, subjective experience model and empirical referents model. Some of the cited papers drew on multiple models, suggesting a multifaceted concept of brain health. Interestingly, a lot of articles did not define the term "brain health", with some only using the term in their title. 

Key attributes of brain health identified by the authors include that it exists along a continuum from poor to optimal, it includes both objective and subjective components, is a dynamic process throughout life, and (as mentioned above) is a multidimensional construct. The authors also mention antecedents to brain health (e.g. lifestyle choices) and consequences (e.g. the ability to live independently), although I think these may not really be defining for what brain health is as a state/process.    

The survey had 73 respondents, most of whom were working in health or basic sciences. Besides respondents from North America and Western/Northern Europe, who are typically over-represented in this kind of work, 15 of these respondents were from South America, 7 from Southern/Eastern Europe, 4 from Africa and 2 from Western Asia. Most respondents in general reported that the term "brain health" was not commonly used in their country of origin. 

The proposed working definition the authors came up with was the following:

Brain health can be defined as a life‐long dynamic state of cognitive, emotional and motor domains underpinned by physiological processes. It is multidimensional and can be objectively measured and subjectively experienced. Brain health is influenced by eco‐ biopsychosocial determinants, resulting in a continuum of quality of life and wellness  

At a first reading, I personally think the final clause is perhaps a bit too focused on consequences, although this is probably necessary when the initial sentence doesn't seems to capture the idea of "positive" or "healthy" (apart from the term "brain health" itself). It is perhaps difficult to separate the following: (i). the consequences of brain processes that allow a brain-owner to function adaptively in their environment and (ii). an appraisal of these processes as healthy or unhealthy.   

In closing out the paper, the authors say their paper will help to operatonalise the concept of brain health for research, policy and practice. It will be interesting to see whether the definition above is taken up by those working in the area of brain health more generally. I hope it will help, given the inconsistencies that are highlighted here between overly reductive biomedical models and approaches that over-emphasise individuals' subjective appraisal of their own brain health. 

Disclosure: I am currently working on a (separate) project on staff mental health with the first author (Dr. Yaohua Chen).

Chen, Y., Demnitz, N., Yamamoto, S., Yaffe, K., Lawlor, B., & Leroi, I. (2021).  Defining brain health: A concept analysis. International Journal of Geriatric Psychiatry. DOI: 10.1002/gps.5564.

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NIDMS seminar: Cognitive Stimulation Therapy

I've been attending a masterclass by the National Intellectual Disability Memory Service. The latest session looked at Cognitive Stimulation Therapy for Dementia, with a focus on specialised services for people with intellectual disability.

Gunnar Scheibner (clinical psychologist at St Michael's House) gave a brief introduction to CST. It is a brief psychosocial intervention developed by Aimee Spector to improve or at least maintain cognition and mood. It combines elements of different approaches (e.g. reminiscence therapy, art therapy). It's recommended that it's conducted in small groups (ideally no more than 6 clients taking part). Scheibner pointed out that it's very cost effective; CST does not require much equipment (e.g. some means of playing music, art materials, often available already in care settings), don't need to have highly trained staff. (However, Professor Mary McCarron did mention that a certain level of group facilitating skills are important.) 

CST is particularly interesting for people with intellectual disability, who are more likely to develop dementia, particularly people who have Down syndrome. However, the current data is very limited for this particular population. Some work by Orrell et al. found a positive impact on family relationships, but not on cognitive functioning. Shannahan found some improvements in cognitive functioning in people with intellectual disability but without dementia. 

Pauline Smyth, from the Brothers of Charity Roscommon, described how her team were working with clients who were living with dementia. Her team became interested in CST and they wanted to find an evidenced-based, post-diagnostic support for people with dementia. Smyth emphasised that CST should be delivered in the context of good person-centred care, and cited the importance of social inclusion - the CST group can be an opportunity for social connection. 

For people with intellectual disability in particular, it's better to have smaller groups than with general population, probably no more than 4, also allow greater amount of time per session (e.g. don't want to rush for creative activities). Important to have knowledge of people's preferences (e.g. what music/hobbies they like, their ability/willingness to continue with the sessions for their duration). For cognitive stimulation, Smyth advised to be careful not to put any individual on the spot; rather, it's important to have a fun/enjoyable atmosphere, and to try to avoid school-like vibe. Consistent with the point about social connection, she said it is worth being vigilant that people are included (e.g. someone might be under-engaged, but could benefit from another participant pairing up with them). For reminiscence, care is required not to push people into talking about painful memories (notwithstanding there can be good and bad in broader memories).   

Dr Janette Tyrell emphasised the importance of using non-pharmacological approaches such as CST (notwithstanding the utility of medications such as those targeting acetylcholinesterase etc.). In her clinical opinion, the more services use techniques like CST that keep people active, the less you see the negative behavioural manifestations of dementia. During the COVID-19 pandemic and lockdown, a lot of people have had opportunities for cognitive stimulation reduced, so it was positive to note that a lot of people are doing activities online at this time. The pandemic does seem to have motivated more people with intellectual disability to get more involved in using platforms like ZOOM. 

A question was raised about running CST with people who have more advanced dementia. Gunnar Scheibner cited a PhD student was who is doing work in this area, and the results will be interesting to see. Pauline Smyth suggested not trying to have people at very variable levels of cognitive impairment (consistent with pitching tasks that are doable for the people who are taking part).    

It was certainly an interesting masterclass. I did wonder whether there are a lot of services doing things like cognitive stimulation therapy without necessarily labelling it as such. There are a lot of people with intellectual disability out there (along with families and services) doing their best to keep active during the pandemic, though as one of the panellists noted, a lot of people in general are languishing.         

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Individualised supports for people with intellectual disability and dementia

While looking for something to discuss at a journal club in work, I came across an interesting paper about individualised supports for people with intellectual disability (ID) and dementia. Over the last 50 years, life expectancy has increased substantially in people with ID. Compared to the general population, this cohort has a higher prevalence and earlier onset of dementia. A systematic review found that psychosocial interventions for people with dementia have rarely been implemented with those with both dementia and ID. 

This study by Watchman et al. included five co-researchers with ID who were involved from the initial grant application onwards. The team sampled participants from multiple settings (living alone with some outreach support, group homes for PwID, and generic care home). For the psychosocial interventions, a resource called Jenny's diary was used as a starting point to discuss possible intervention components (e.g. design changes to home, reminiscence), so participants could select intervention activities that appealed to them as an individual.

The researchers used a bespoke measure of studying effects of intervention on behaviour (examining observed behaviour, “observed mood”, body language and verbal communication), to capture this “in the moment”, as well as assessing quality of life with a more standardised measure. They also conducted semi-structured interviews with social care staff, as well as generating data with PwID and dementia, using photovoice (a participatory research method which involves the use of photographs to convey the meaning of different lived experiences). 

Participants had between two and six interventions, and most interventions showed “in the moment” positive effects. Nearly three-quarters of interventions were described as having met or exceeded their goals. The results less clear for quality of life scores, which fell at mid-point before increasing. 

From the semi-structured interviews, social care staff described interventions positively, that they ”brought them (the participants) back”. Key themes were: enabling care (allowing participants to have choice about what interventions were being used, having one-on-one time with staff), interventions for practice (a key point here was a change in perception from seeing interventions as adding to work burden to viewing them as timesavers overall, e.g. by reducing agitation).

From the photovoice images, key themes included the importance of friendship, involvement in future planning (photos included images from Jenny’s diary), and fear of dementia (with an associated fear of return to institutional care/change in living situation).

I thought this paper was interesting, with a wide range of measures and methods to gain a greater understanding of interventions for people with ID and dementia. The use of in-the-moment assessment can overcome difficulties in displaying effects of interventions with retrospective (even recent retrospective) measures.

I wondered to what extent photovoice was a reproduction of materials presented to participants (e.g. Jenny’s voice appeared as an image). However, it may be worth comparing with extent to which participants from the general population can bring truly novel ideas when guided through semi-structured interviews etc.

Watchman, K., Mattheys, K., McKernon, M., Strachan, H., Andreis, F., & Murdoch, J. (2021). A person‐centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia—A participatory action study. Journal of Applied Research in Intellectual Disabilities, 34(1), 164-177.

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Rant: It'S NoT rOckEt SciEnCe

Psychology isn't rocket science.

It's actually more complicated than that.

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Conference review: THEconf2021

 

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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Suicides are not "mental accidents" (thoughts on Ajdacic-Gross et al., 2019)

The so-called "psychotically depressed" person who tries to kill herself doesn't do so out of quote "hopelessness" or any abstract conviction that life's assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certainly unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise...Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the window just checking out the view, i.e. the fear of falling remains constant. The variable here is the other terror, the fire's flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors.  

David Foster Wallace, Infinite Jest

Of course, suicide is often approached from a mental health/psychological disorder perspective. At the same time, suicide can be studied at an epidemiological level, in terms of, for example, national rates over time (questions include whether economic recessions are associated with increases in suicide rates). A provocative paper from a couple of years back took the approach of proposing an interdisciplinary paradigm for suicide research. Although it caught my eye, it doesn't seem to have had much uptake in the scholarly literature; as far as I can see, the review hasn't been cited as yet on Google Scholar (which tends to catch citations from a wide variety of academic sources).    

The authors cite epidemiological research suggesting the association between suicidal ideation, suicide attempts and completed suicide is weaker than one might intuitively expect. They highlight that reasoning often begins with completed suicide and tries to work backwards to explain what caused this outcome, rather than starting with risk factors and working from ideation to attempt to death. This latter approach is important for identifying preventative measures, and also for not underestimating or under-emphasising the greater prevalence of ideation and attempts compared to deaths by suicide (there is evidence of a high lifetime prevalence of suicidal ideation in the general population). 

The authors acknowledge there can be different temporal dynamics to suicide, where some individuals with previous good mental health may die quite suddenly following a severe stressor, whereas others may die following a long struggle with severe distress and previous uncompleted attempts. In the latter circumstances, the authors recognise their paradigm is less applicable. They also recognise a cognitive component to suicidal ideation, relating to appraisals of factors such as whether one has hope for the future. This weakens the idea of a paradigm where suicide is understood as a "mental accident".

At an epidemiological level, the authors draw an analogy with fatal road traffic accidents, where although there are many traffic accidents, very few will be fatal. However, notwithstanding that some fatal road "accidents" may actually represent death by suicide, traffic accidents are generally unintentional. 

Although suicidal ideation may be deliberative, a lack of resistance to such ideation may be much less deliberative. They highlight the importance of broader situational factors such as economic recession and austerity in precipitating suicidal ideation, along with an increase in help-seeking behaviour over the last few decades. However, and perhaps more importantly for the "accident" hypothesis, they also cite immediate situational factors relating to the availability of lethal methods, suggesting that the high impact of easy availability of lethal methods, such as having a firearm in one's household, suggest that completion may be prevented by relatively small hurdles. However, I think the authors would admit that this is more to do with suicidal impulses (of sufficient strength to drive an attempt) sometimes being relatively transient, rather than death by suicide being understood as a "mental accident". 

I'll admit the title of this article caught my attention. Framing suicide as an accident seems highly counter-intuitive. However, this review ultimately left me unconvinced that even a subset of deaths by suicide should be thought of as mental accidents. In my mind, an accident doesn't involve genuine intent, and for a death to be classified as suicide it must surely involve some level of intent. In my opinion, what this article does indicate is that death by suicide involves deliberative suicidal thoughts combined with a loss of control of competing motivations. Although research in suicidology and efforts in suicide prevention may have much to learn from work in the area of fatal accidents that actually are accidental, I fear the authors may have prioritised a provocative title/statement of their thesis over a more nuanced summary of what they are really saying. I hope I'm not just attacking a straw argument here, but I do regret the possible tabloidisation of scholarly publishing, particularly with a subject as serious as this.

Ajdacic-Gross, V., Hepp, U., Seifritz, E. & Bopp, M. (2019). Rethinking suicides as mental accidents: Towards a new paradigm. Journal of affective disorders, 252, 141-151.

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IASSIDD Webinar: People with intellectual disability and family carers during the lockdown

On 2nd February 2021, I attended an interesting webinar from the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). Three different talks treated of the situation of people with intellectual disabilities and the COVID-19 pandemic and associated lockdown. 

   Faridah Ali Chang: Support for families and their high needs children during the COVID19 pandemic

Faridah Ali Chang (Rainbow center), works with clients caring for children aged 3-35. At the Rainbow center, there's an emphasis on carers recognising their own stress triggers or risks to their mental health. They identify high-risk families or people with greatest needs. Singapore went into full circuit breaker mode with the pandemic-all schools were shut down, and parents had to move to home-based learning. There was a significant rise in domestic violence and a large increase in calls to mental health hotlines.  Many families had lack of space. The Rainbow Centre continued coaching with caregivers online. They still accepted new referrals as well. Faridah Ali Chang gave an example of a mother with an autistic son who was having a lot of "meltdowns" and a poor sleep pattern. She was becoming depressed herself. She engaged in WhatsApp support with keyworker at Rainbow and found the coaching helpful, even if it was provided entirely online. Help included visual support system to organise her child's daily routine, as well as community supports-the parent in question went on to help/advise other parents as part of the community support.

Paul Willner & Biz Stenfert Kroese:  Effects of the pandemic on informal caters of adults and children with intellectual disabilities in the UK

Paul Willner, Swansea University, has been involved in a clinical trial for PTSD for people with ID. However, this project was paused in March. His team designed a survey at speed to find mental health effects of lockdown on family carers of people with ID. They surveyed carers of adults with disabilities, children with disabilities and children without disabilities (Willner noted the sample was relatively affluent). They also interviewed a small subset of those surveyed, and assessed feeling of being "defeated/trapped" as well as anxiety and depression. People with children (including adult children with ID) reported worse outcomes compared to a comparison group of people with children without ID. Depending on cut-off points for clinical depression estimated with the Patient Health Questionnaire, carers for children with ID had 4-10 times higher levels of depression. Notwithstanding the sample size was limited, the effect size for this effect was substantially higher than suggested by pre-pandemic meta-analytic results, suggesting the pandemic had rendered this differential more severe. Interestingly, although family carers received more social support from professional helpers, they received less social support from family, friends and neighbours. 

Biza Stenfert Kroese described more in-depth interviews with these participants, who spoke of feelings of abandonment, as well as being stigmatised by people around them-there was suspicion that they were breaking rules around lockdown, although they had permission based on their sons'/daughters' needs for exercise etc., with bystanders in some cases claiming that the person didn't "look disabled". There was also fear of challenging behaviour, powerlessness or uncertainty of when things would change. Policy implications discussed include providing more key workers (for adults and for children with less complex needs), improving mental health awareness for nurses/care workers working with clients with ID, and creating more community/peer supports, as well as the utility of encouraging neighbour support (similar to what is done for older adults in the community). 

Regi Alexander: Guidance for the treatment and management of COVID-19 among people with intellectual disabilities

Regi Alexander pointed out excess mortality from preventable causes in people with ID even pre-COVID, but the situation is more stark under the pandemic. He underlined that distress is a normal response to disruption to normal routine, particularly where one is dependent on routine. Many people with ID also dealing with loss, either from the someone's death or someone is no longer available or close. He also emphasised the risk of diagnostic overshadowing (i.e. all problems being attributed to a diagnosis ID/mental health issues), meaning other problems and underlying causes might be missed. Diagnostic overshadowing is concerning when you see the statistics about excess mortality. In this vein, he also highlighted a high degree of physical health problems in people with ID.  He also indicated that there a number of relevant resources available on the NHS radiant website, and the resources from Beyond Words are useful for explaining issues around COVID-19 and the lockdown etc. to people with ID.       

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Webinar: "Research for Public Policy: Opportunities for Ireland"

The research for Public Policy seminar series is a joint initiative of the RIA and IRC, aiming to bring diverse expertise together on the subject of evidence-based policy. The webinar on research for public policy on January 27th was one of three webinars in a series, with a discussion paper by Mary Doyle setting the scene for the meeting

Professor Jane Ohlmeyer described this webinar as part of a broader conversation. Professor Ohlmeyer introduced Minister for Further and Higher Education, Research, Innovation, and Science Simon Harris, pointing out the impact of the creation of the new Department in this area. Minister Harris pushed back against the (by now) old saw about people "having heard enough from experts", saying that policymakers are more likely to make mistakes when they don't listen to experts. He suggested that something good can come of the pandemic if research and innovation can take a more active role in society at large, and also mentioned the importance of multiple disciplines and their collaboration. He emphasised the importance of investment in research and innovation. Notwithstanding the pandemic crisis, he recognised we shouldn't just call on research just during times of crisis, but need to engage in long-term planning. He noted that innovation is not just about business, but also about policy; to this end, he mentioned ideas and programs about secondments for researchers into government agencies to allow researchers to be more cognisant of policy and how it gets made and implemented. He mentioned planning a drive for greater engagement between the general public and the research sector, on a greater scale than had previously been seen in Ireland. 

Panel conversation

Professor Jane Grimson (Trinity College Dublin) talked about how policymakers may identify a need but can't find researchers who are willing/able to conduct the required work. However, she suggested that a positive counter-example in health research in Ireland is the Health Research Board, which does a lot of policy-centric work. The bench-to-bedside journey is usually very slowly, but this was accelerated with unprecedented speed due to the pandemic crisis. Funding suddenly became available, policymakers and researchers started communicating more closely, more rapidly and openly, with knowledge being pooled internationally (on this note, she championed the importance of open research, and systematic reviews). But the rapid successes achieved during the pandemic were built on the back of years of slower research, from work on mRNA to methodological advances in epidemiology and data analytics.   

Professor Peter Clinch (University College Dublin) noted that the phrase "we've had enough of experts" often based on a politically-motivated decision that goes against evidence. Professor Clinch said that there is a desire for research findings in Ireland in the UK, but civil servants and researchers are coming with very different approaches, and there needs to be better communication about what different jobs involved. Currently researchers and politicians often don't understand the rather different pressures they face in their careers. He highlighted the importance of investment, both for National Economic Plan and for National Development Plan, and that researchers should present a united front in their requests for greater funding at a broader level. 

A video of the webinar is available on the Royal Irish Academy's youtube channel. 

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Have women been missing out on chances to maintain cognitive reserve?

 

At present, the majority of people with late-onset Alzheimer's disease are women. While there are a variety of reasons why this may be the case, one possible factor is reduced opportunity to maintain cognitive reserve. (Although it has been defined in subtly different ways, cognitive reserve is essentially the maintenance of cognitive performance in the presence of brain pathology due to a "bank" of greater cognitive resources over the lifespan, such as formal education or an intellectually stimulating job). For example, some women may have (or have had) less cognitive reserve if they have left formal education earlier. 

A recent review paper has looked at this in depth. The authors highlight that much of the evidence that has been used to propose models of cognitive reserve has not looked at whether these models hold to the same extent for men and women, and so there may be underappreciated sex differences. Nonetheless, the authors did identify a number of studies that did grapple empirically with sex differences and cognitive reserve. (Although sex and gender are not the same thing, the authors noted that some studies referred to sex and others to gender, and sex differences may be conflated with gender roles; overall, it was unclear whether existing data would allow anyone to tease apart sex differences and gender differences).    

Focusing on education in particular, the authors found two longitudinal studies that indicated that more years of education led to reduced incidence/prevalence of Alzheimer's disease, and this effect did not differ between the sexes, although two other studies found that years of education were correlated with reduced Alzheimer's risk, but only for women. So it would seem the studies did agree that education reduced Alzheimer's risk for women, although the evidence was more equivocal for men (one might speculate that perhaps young males are more likely to enter more cognitively stimulating work if they leave school early, compared to young females, or at least this has been the case in the recent past). 

However, a cross-sectional study found that men with Alzheimer's disease had better performance on the MMSE than women of the same age with the same level of education, suggesting reserve was more beneficial for men (the authors of the review point out that this study did not assess neural pathology, so it may be the case that the women in this study had more advanced neural pathology than the men).   

Although I've briefly focused on education and women in particular above, it is likely that people from various disadvantaged groups have less opportunity to develop cognitive reserve over their lives. Internationally, there are substantial differences in the average number of years people spend in formal education, and although great progress has been made globally in closing the gender gap over the last century, the female:male ratio for years of schooling is still around 85% for Asia, Africa and the Pacifics. The full paper below looks in more detail at other factors that can help to maintain cognitive reserve:

Subramaniapillai, S., Almey, A., Rajah, M. N., & Einstein, G. (2020). Sex and gender differences in cognitive and brain reserve: Implications for Alzheimer’s disease in women. Frontiers in Neuroendocrinology, 100879.

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