Print This PostJanuary at ISTAART is marked by a series of ‘Year in Review’ webinars held by the Professional Interest Areas (PIAs). The concept of the webinars is explained in Dr Sogorb-Estve’s blog. The Nonpharmacological interventions PIA focuses on driving the shift from a solely biomedical understanding of dementia and its effects to a more holistic approach to understanding dementia. This includes an understanding of the modifiable risk factors and the psychological, environmental, and social determinants of living with dementia and the development of nonpharmacological interventions which allow people affected by dementia to cope and live better. The PIA was established in 2012 and currently has 10 executive members.
In the middle of the series, our PIA held the Year in Review focusing on digital tools for dementia caregivers presented by Dr Alyssa Weakley, Assistant Professor of Neurology at UC David Medical Centre. It was followed by a discussion from our panellists Dr Arlene Astell, Dr Sarah Tomaszewski Farias and Dr Stephanie Aghamoosa and I, Marija Taneska moderated the session. We chose the topic of digital tools, as it sits in the middle of the issues of increasing prevalence of dementia and informal caregiving, increasing digital skills and the need for accessible and affordable interventions to help caregivers cope with caregiving and provide better care.
Technology has the potential to address several challenges of caregivers including accessing information on dementia and caregiving; managing their health and managing their finances and day-to-day tasks. Dr Weakley reviewed the literature on digital tools for caregivers in the broad sense and summarised the evidence in four areas: assistive technology, stress and wellbeing, sleep and behaviour changes. We discussed the results of 10 studies in the field.
While exciting, the research world of digital tools is still very exploratory and marked by small pilot studies and a grand variety of interventions used. Nonetheless, it also shows the enormous potential of technology to address various aspects of caregiving. The studies we reviewed ranged from remote assistive monitoring (Levenson et al., Obayashi et al. ); virtual befriending with college students (Morgan et al ) activity groups (Fanning et al), remote well-being check-ups (Oostra et al) and CBT for caregivers (McCrae et al), to educational programs on addressing insomnia (Brewster et al) and applications to support managing behavioural symptoms (Mechanic-Hamilton et al) or simply to help caregivers navigate their technology tools better (Beentjes et al).
The studies reflect the reality of living in the post-pandemic world in which people are more used to creating meaningful connections remotely. Besides the variability in the interventions and the outcomes achieved by them, a commonality was that the caregivers found the technologies usable, which can be attributed to the iterative co-development or participatory design utilised by most of the studies. This confirms that coproduction is the future in nonpharmacological interventions as their usability predicts their acceptability.
Digital tools can also address health inequalities in dementia related to access to support and providing high-quality care across the trajectory. The studies we reviewed showed that the interventions are acceptable for people who have barriers to access (for example because of rural living) and can support people with dementia to stay in their homes for as long as possible, safely, and independently. However, in the world of nonpharmacological interventions, variety is a benefit and a drawback, as it’s challenging to make uniform conclusions about the drivers of their effectiveness. We also agreed that we need a better understanding of the acceptability of digital tools for ethnic and minority groups and more rigorous research designs. As with all quick-developing areas, there is the issue of research being unable to ‘catch up’ and evaluate all the new tools that come out almost daily, which makes this area even more intriguing and exciting.
In the latter part of the session, we discussed what’s ahead on the horizon for 2024. In the UK, Alzheimer’s Society-funded Centres of Excellence, NIDUS, PriDem and IDEAL are coming to an end in 2024. Results and dissemination activity are expected throughout the year. NIDUS contributes to the evidence base of personalising outcomes for people affected by dementia by using the Goal Attainment Scale (GAS) and PriDem explores an innovative model of primary-led post-diagnostic dementia care. The recently published RCT results showed that NIDUS is the first intervention delivered by non-clinical facilitators that helps people with dementia and caregivers achieve personalised goals. While IDEAL is not an interventional study, the project co-developed a framework to explore and evaluate living with dementia across multiple domains including physical and psychosocial health, social resources, social situation and managing everyday life.
The outputs from the project centred around co-production and co-design. In sleep interventions, we are expecting the results of UCLs DREAMS START: a large, multi-centre RCT of over 370 dyads of caregivers and people with dementia investigating the effect of a multicomponent intervention for improving sleep in people with dementia. In the exciting world of neuromodulation, which witnessed an expansion of both invasive and non-invasive methods, pivotal questions are being raised about the right target and dosage to attain the biggest effectiveness of the intervention and the underlying neurological mechanisms of Alzheimer’s disease. The upcoming focus of the field is also bringing some of the interventions, such as Transcranial direct current stimulation (TDCS) or photo biomodulation to the patients’ home and pairing them with other interventions such as physical activity to maximise their effects.
In line with the growing focus on dementia prevention, we’ve announced the upcoming developments in lifestyle interventions. After the promising results of the 2 year-follow up of the multimodal lifestyle intervention FINGERS in improving or maintaining cognition in elderly adults at risk, the researchers continued the follow-up of participants in the upcoming years and created the World Wide FINGERS association aiming to culturally adapt the intervention. Currently, over 17 international trials are run, including the US Pointer study, so exciting developments are to be expected in this field.
Our panellists also discussed upcoming opportunities for the development of interventions to support people with dementia at home such as the Jane Challenge and the Longitudinal Price on Dementia.
The area of nonpharmacological interventions is much bigger than a webinar or a blog can cover. Some of our attendees raised questions about interventions in nutrition, occupational and physical therapy which are extremely important. In the next year, we are also hoping to see more interventions aimed at people with more advanced dementia and end-of-life, and for the area of digital technologies, we hope to see the development of tools for people diagnosed with dementia.
The recording of the webinar can be found here: https://training.alz.org/products/4658/nonpharmacological-interventions-pia-year-in-review
Don’t forget, you can get involved in the Nonpharmacological interventions PIA by joining ISTAART and get access to previous webinars!
Marija Taneska
Author
Marija Taneska is Research Evidence Officer for the Alzheimer’s Society and Student Representative at the ISTAART Nonpharmacological Interventions PIA. Marija reviews and synthesizes dementia evidence from different sources to inform Alzheimer’s Society work. She is particulary close to the IDEAL, PriDem and NIDUS Projects and collaborates with researchers in dementia care to ensure mutual exchange and support. Marija is also a visiting Research Assistant at UCL, co-leading a project aimed to adapt the START (STrategies for RelaTives) intervention for family caregivers in Macedonia.
Rebecca Williams
Alzheimer's Association
Amelia Robson
Alz Forum
Alzheimer's Society
Dr Sam Moxon