I’ve had a couple of conversations which went along the lines of “Have you read the REMCARE report? It shows that reminiscence work has negative effects on participants.” It seemed as though these colleagues felt that this was the end of the conversation. It’s taken a while to getting round to reading the report (and it’s taken even longer to writing this post) but I wanted to summarise some of what it said but also challenge the idea that the REMCARE report is the definitive statement that some people seem to want it to be.
The Executive Summary of the REMCARE study is readily available on-line (Woods et al., 2012a). The full-report (Woods et al., 2012b) is worth reading – there’s a lot of information in the details.
It’s probably worth stating, up front, that I am not committed to the idea that reminiscing is necessarily good for you. The evidence up to this point has generally been ambivalent, at best, and based on small studies. It doesn’t help that there isn’t a single or definitive way of doing reminiscence. Nor am I persuaded by the view that reminiscence is intrinsically bad and we should all just go and do creative work. Even if this conversation did decide against reminiscence, it would still be a fascinating process and it’s the process that interests me.
Secondly, the REMCARE study is an unquestionably impressive piece of work. Bob Woods, one of the lead researchers, had previous published a protocol for how you might go about doing a randomly controlled trial for cultural interventions (Woods et al., 2009) and REMCARE is a fine example of what this looks like: control groups, quantitative measures, careful statistics. The study involved a large number of participants (N = 488) with a mean age of 77.5 years, whose dementia was assessed as part of the research, although they were not able to control for the type of dementia and research has indicated that this is significant (Woods et al., 2012b). The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer. Secondary outcome measures for the person with dementia included autobiographical memory, depression, anxiety and activities of daily living. The carer reported their stress related to care-giving and their levels of anxiety and depression. Both the carer and the person with dementia rated the quality of the relationship between them. (Woods et al., 2012a)
The study is grounded in an earlier qualitative piece of work evaluating the ‘Remember Yesterday, Caring Today’ (RYCT) reminiscence protocol. (If you want to find an example of a good piece of international, multi-partner work – this is it.) The study found positive impacts for that approach to reminiscence and the leader of that project (Pam Schweitzer) was persuaded to become involved in this quantitative assessment of the approach (Schweitzer, 2013). The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. Each session lasted 2 hours and focused on a different theme, including: childhood, schooldays, working life, marriage, and holidays and journeys. Participants were encouraged to contribute with materials brought from home. Each session blended work in large and small groups, and a range of activities including art, cooking, physical re-enactment of memories, singing and oral reminiscence. The inclusion of the person with dementia is considered paramount. In the joint reminiscence groups facilitators and volunteers guided carers to allow the person with dementia to respond and to value their contribution (Woods et al, 2012a).
The headline findings: The intention-to-treat analysis indicated there were no differences in outcome between the intervention and control conditions on primary or secondary outcomes at the 10-month end point or at the assessment carried out at 3 months. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety at the 10-month end point. People with dementia in the intervention group made more use of local authority and NHS day care than those in the treatment as usual group. Economic analyses from a public sector, multiagency perspective indicated that joint reminiscence groups are unlikely to be cost-effective.
In short – not good. As Schweitzer (2013) acknowledges, she and many of her colleagues were hopeful that this study would support the qualitative findings of the earlier study and were deeply disappointed when they did not.
You could end the conversation there but it hasn’t and it probably shouldn’t.
It is worth considering what is included in the reminiscence sessions – “art, cooking, physical re-enactment of memories, singing and oral reminiscence”. This isn’t just sitting around with an object asking people what they remember – this is a broad engagement of the person through the use of personally meaningful objects. I would argue that if the study undermines the value of reminiscence, it also undermines the value of creative work. I don’t think that the people who want to use it to promote creativity, at the expense of reminiscence, can use the REMCARE findings in quite that way.
One of the important negative findings is that the carers reported significantly increased anxiety as a result of participating. I understand (second-hand from a colleague who listened to a talk by Paul Camic) that the increased anxiety was linked to the burden of having to get their partners to the sessions and the tension between the positive behaviours expressed during the session and their ‘normal’ behaviour. (I need to chase this up to be more certain.) There are procedural issues here, the carers actively take part in the sessions and not all reminiscence work is structured that way. So there is a question about the impact on carers where transport is provided and they don’t attend. Based on my own work, I’d argue that this leads to very different carer responses. There is also tension with earlier work, involving sessions with professional carers, which implied that the experience of sharing reminiscence with a person with dementia re-instantiated their personhood, in the eyes of the carer, and positively changes the way that the carer cares for the person with dementia (Zeisel, 2009). The tensions need exploring. The REMCARE study also looked at long-term benefits, rather than proximal and short-term benefits (which many studies focus on). In the full REMCARE report, the authors point to both of these areas in their recommendations for future work (Woods et al, 2012b).
One of the points of the discussion in the full-report is that the data was analysed by allocation only (i.e. was someone in the intervention group or the control) rather than by how many times the person actually attended. Re-analysing the data according to whether people actually attended indicated that there were more positive outcomes for those that attended more weekly sessions (in terms of autobiographical memory, quality of life and quality of relationship with carer). All this suggests that the sessions had some real benefit. However, the carers who accompanied their partners to more sessions reported higher levels of stress, which is consistent with the headline findings.
Schweitzer has written about the findings of the REMCARE study (2013) in which she was open about her responses to the findings. Schweitzer noted how she struggled to reconcile the negative quantitative results with the positive qualitative findings and on-going feedback that she receives from participants (both participants with dementia and carers). She ultimately questioned whether quantitative measures are appropriate to this type of work – which is a huge and on-going debate.
I honestly don’t think that the REMCARE study can be used the way that some of my colleagues appear to want to use it. It clearly problematises any simplistic attempt to laud the therapeutic value of reminiscence (and, I think, creative interventions) but, at the same time, it isn’t a definitive end point to the conversation. Indeed, Schweitzer (amongst other) seem determined to keep the conversation going.
Schwietzer, P. (2013). ‘Reminiscence in Dementia Care’. The International Journal of Reminiscence and Life Review, 1 (1), pp. 42-47. http://www.ijrlr.org/ojs/index.php/IJRLR
Woods, R. T., et al. (2009) Reminiscence groups for people with dementia and their family carers: pragmatic eight-centre randomised trial of joint reminiscence and maintenance versus usual treatment: a protocol. Trials, 10:64. Available at http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-10-64
Woods, R. T., et al. (2012a). REMCARE: reminiscence groups for people with dementia and their family caregivers – effectiveness and cost-effectiveness pragmatic multicentre randomised trial (Executive Summary). Health Technology Assessment, 16 (48). Available at http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0008/63953/ExecutiveSummary-hta16480.pdf
Woods, R. T., et al. (2012a). REMCARE: reminiscence groups for people with dementia and their family caregivers – effectiveness and cost-effectiveness pragmatic multicentre randomised trial (Full report). Health Technology Assessment, 16 (48). Available at http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0006/64716/FullReport-hta16480.pdf
Zeisel, J. (2009) I’m Still Here: A New Philosophy of Alzheimer’s Care Avery: New York