The Alzheimer Europe lunch debate of 21 March 2023, focusing on “Dealing with behavioural and psychological symptoms (BPSD) in dementia care”, was a hybrid event attended by MEPs and other representatives of the European Parliament, the European Commission, Health Ministries and other national policymakers, industry partners, researchers, members of the European Dementia Carers Working Group (EDCWG) and Alzheimer Europe member organisations, Board and staff. There were 111 participants in total, with 78 of these attending in person and the remaining 33 joining online. The event was hosted by Sirpa Pietikäinen MEP (Finland), Chairperson of the European Alzheimer’s Alliance (EAA) and Deirdre Clune MEP (Ireland), Vice-Chairperson of the EAA.
Ms Pietikäinen opened the session with a warm welcome to all delegates both in Brussels and online. She began by highlighting that over 90% of people with dementia experience BPSD, making this a vast issue and one which can be hugely stressful for carers and others close to the person, as well as for medical professionals and of course for the person experiencing the symptoms. She drew attention to the importance of first understanding the root cause of a problem, before responding accordingly, “as we would do for a blind person, we should do the same for a person with a brain illness”. She also stated that she was proud and delighted to host this lunch debate and introduced the first speaker, Sube Banerjee, Professor of dementia and Executive Dean of the Faculty of Health: Medicine, Dentistry and Human Sciences, University of Plymouth, United Kingdom.
Sube Banerjee discussed the impact of agitation and aggression on the well-being of people with dementia and their carers. His talk aimed to put in context some of the issues of BPSD and of quality-of-life for people with dementia. He echoed what Ms Pietikäinen said about how common BPSD are, with 90% of people with dementia experiencing them at some point during their illness. Focusing particularly on agitation, he stated that it was important that dementia should not be the first explanation that we attribute this to. First, we should consider unmet needs, response to a stimulus in the environment, psychosocial needs, responses to the approach of carers, nurses, or other residents. From Prof. Banerjee’s perspective, pharmacological solutions are not the answer, in most situations, as they can make things much worse and rarely solve matters. He shared results from studies which backed up this assertion and said that we should reduce the use of antipsychotics (which can work to an extent, but lead to increased mortality rates in people with dementia) and of other drugs. Careful assessment, imaginative care planning, information, support, problem solving and working with families is the way forward, he stated. Funding needs to be in place and policymakers and healthcare providers need to be informed and convinced that change is needed. We cannot solve the existing problem overnight, but “there is no rationale for doing nothing”, he concluded.
Jacqueline Hoogendam, Co-ordinator for international affairs on dementia, long-term care and ageing, Ministry of Health, Welfare and Sport, Netherlands gave a talk revolving around improving crisis and care co-ordination, drawing on the recommendations of “Act on Dementia”, the EU Joint Action on Dementia. She agreed with the previous speaker that the situation is not easy to resolve quickly and noted that a multidisciplinary approach is needed. Medication may be needed in some cases, she said, but should not be the first or only choice. There are many differences in BPSD and its causes, she said, listing meaningful activity, feeling respected, informed and listened to, as the main contributing factors to helping prevent these crises.
Øyvind Kirkevold, Assistant Research Director, Norwegian National Advisory Unit on Ageing and Health, Norway, shared some recommendations about BPSD in residential care, from Act on Dementia Work Package 6, “Quality in Residential Care – Evidence and Recommendations”. He discussed non-pharmacological interventions, highlighting the need for person-centred care. Using a set of activities, including sensory interventions and structured was the first recommendation. All residential care units should implement routines for a systematic approach to challenging behaviour, he said, noting that these should be based on the principles of the TIME (Targeted Interdisciplinary Model for Evaluation) or DICE (Describe-Investigate-Create-Evaluate) models, or other similar models. He also stressed the importance of training, so that staff can understand the behaviour, improve their communication skills particularly in difficult situations and find alternative approaches. We have good evidence for how to systematically approach BPSD, but some of the main challenges that stand in the way lie in how to translate evidence-based frameworks into practical tools and to implement these tools into practice, he stated. Resources are not sufficient but non-pharmacological interventions have clearly been shown to reduce BPSD (especially agitation) with the approaches they used in this Joint Action, he concluded.
Sara Fascendini, Director, Alzheimer Medical Centre, Fondazione Europea Ricerca Biomedica, Italy and co-lead of the REspectful Caring for AGitated Elderly (RECage) project, was the fourth and final speaker. She noted that the RECage project was funded by the European Union Horizon 2020 programme. Her presentation shared the methodology and results of RECage, which created Special Care Units for BPSD (SCU-Bs). These are residential medical structures lying outside of a nursing home, in a general hospital or elsewhere, for example in a private hospital. Patients with BPSD are temporarily admitted to such units, when their “behavioural disturbances” are not manageable at home and the mission of the SCU-B is to improve patients’ behaviour so as to allow, where possible, their return home. The therapeutic approach is a mixture of cautious pharmacological treatments, rehabilitative and non-pharmacological therapies, creating an appropriate environment and ensuring a trained staff of experts. “The staff training is the core of our work”, she said. They try to go deeply into the personal history of patients in the SCU-B and try to understand the reasons for their behaviour, so as to manage it accordingly. Focus groups and interviews were used and the data from these and from a scoping literature review was analysed and presented at the RECage Consensus Conference in Brussels, on 21-22 February 2023. Despite the fact that, unfortunately, the study did not achieve its primary endpoints, the evidence showed that SCU-Bs can nonetheless successfully tackle acute challenging clinical situations that are not easily manageable at home. She highlighted the importance of using SCU-Bs as a component of a comprehensive network of dementia care, rather than a standalone solution.
Following the presentations, there was a lively question and answer session with the audience, after which Deirdre Clune MEP closed the lunch debate, thanking everyone for their participation and giving a special thanks to Alzheimer Europe for bringing everyone together. She was pleased to see that there was a great deal of interesting work happening and said that it was vital that these best practices were implemented.
The videos of the presentations from the lunch debate can be watched here:
https://www.youtube.com/playlist?list=PLO-PgQHI1WQUu-hx-h02FBuBltNSy7syw