Friday, May 28, 2021

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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Sunday, May 16, 2021

Short fiction review: "Coffin Liquer" by John Lanchester

 


I recently read the short story collection "Reality and Other Stories" by John Lanchester. One story that particularly appealed to me was "Coffin Liquer" (which was previously published in a slightly different form in the London Review of Books - there's an audio version by the mighty Toby Jones on their website).

(Some slight spoilers ahead).

The story concerns a Professor who attends a conference on economics, only to discover to his dismay that it is a multidisciplinary conference featuring an array of speakers from the humanities. His inner monologue is awash with derision for the speakers at the different sessions. However, on an outing during some down time on the conference, he does express an interest in art (just not when it deals with myths).Our protagonist is conceited (e.g. from the point of view of a properly trained mind-i.e. mine; elsewhere he makes the bold claim my recollection is never inaccurate) and yet lacking in self-awareness (I was polite but firm. "You sir, are an imposter"). 

Alienated from the conference sessions, the academic starts to listen to some of his favourite audiobooks. Here, the story goes in a quite creepy direction. As he attempts to listen to his books, he instead hears a sinister tale of someone being pursued by a ghoulish figure that seems to missing the lower half of its body, imploring the audiobook's hero to listen. The academic's refusal to entertain this story will eventually prove too much for him. As a comeuppance, being tormented by half a person when the academic himself is dismissing half of human knowledge is perhaps a little on the nose, but it's still fun. It's interesting that the ghoul is missing the lower half of its body, and the head (mind) is preserved, although maybe I'm reading a little too much into this.

In one of his asides, the protagonist cites psychology as a "pseudoscience", perhaps betraying a certain insecurity that his own chosen discipline (economics) is perhaps not as "hard" as physics or mathematics. (This tickled me, as I studied economics as well as psychology for my own Bachelor's degree, and there's a whole field of behavioural economics that has broken from academia into the mainstream with books like Nudge etc.) Lanchester does give the main character some depth in terms of, for example, the academic trying to maintain social norms at the conference by feigning interest in the talks, even though he betrays a certain ambivalence in tone when asserting that such norms are valid.  

"Reality and Other Stories" is worth checking out if you get a chance. The collection has a nice mixture of the satirical and the speculative, and the stories are entertaining throughout.  

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Tuesday, April 27, 2021

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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Monday, April 12, 2021

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 Disabilities34(1), 164-177.

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Tuesday, March 30, 2021

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. 

√Čilish 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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Sunday, February 28, 2021

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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