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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