Outcome INTERDEM Academy Publication award 23/24

This year, in total, ten articles were received as part of the INTERDEM Academy Publication Award. We want to thank and compliment everyone for the effort they put into their submission. The top 3 (winner and 2 runners-up) will receive a monetary prize to be used to stimulate career development, and the winner is invited to present the article during our next Annual INTERDEM meeting at Alzheimer Europe in Geneva!

Congratulations to the winners! We would like to thank Georgina Charlesworth, René Thyrian, Charless Dupont and Joost Wammes for contibuting to this year’s jury and providing us with their careful considerations and final ranking.

The winner of this year’s award:

Jacoba Huizenga: What matters most: Exploring the everyday lives of people with dementia

This publication is part of my PhD research in which I collaborate with an international team. At the heart of my PhD research lies a novel exploration of the concept of “everyday life” from an interdisciplinary and sociological perspective. By using ‘the everyday’ as an overarching lens, my  current and previous research shows that it is possible to conceptualise the lived experience of dementia beyond conventional care paradigms. From a methods perspective, I prioritized being  informed throughout the research process by the voice, values and experiences of people living with dementia. I used creative and participatory social research methods with people with dementia, such as home tour interviews and walking or cycling interviews, to gain insight into the person’s everyday life. By following this approach, six dimensions of what matters most in everyday life with dementia were identified, namely: 1) Engaging in meaningful activities, 2) Keeping a sense of connection, 3) Having a sense of belonging, 4) Connecting to self, 5) Adjusting to ongoing changes, and 6) Being open to help and support.

One of the innovations in my study is in starting a co-researcher group of seven individuals with dementia in the Netherlands, who named themselves ‘Brain Power’.  ‘Brain Power’ is the first co-researcher group in the Netherlands. The group collaborated with myself and the research team to enrich the data analysis and also contributes towards knowledge dissemination. Together with a second facilitator in ‘Brain Power’, I co-led the process of creating a magazine that not only showcases the findings of the published ‘what matters most in everyday life’ paper but also amplifies the voices of ‘Brain Power’ through their personal stories, tips, and poetry. This article embodies the spirit of INTERDEM’s mission on social inclusion by placing people with dementia at the centre of European research and practice.

To read the full article: https://pubmed.ncbi.nlm.nih.gov/37565538/

The runners-up (in alphabetical order)

Jem Bhatt: The development and validation of the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia)

My name is Dr Jem Bhatt, I am an INTERDEM Academy member and I conduct research in the field of dementia-related stigma. I am based at the University College London Unit for Stigma Research (UCLUS), where I am the Lead for Postgraduate Research, I am also a clinical psychologist in training and I work clinically with older people in a mental health setting.

What is the article about?

This article is about how the experiences of unfair treatment of people living with dementia can be quantified through the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia) instrument, in a global sample. Psychometric analyses, including factor analysis, and reliability and validity analyses, suggest that the DICUS-Dementia performs well with a global sample. In addition, qualitative responses collected as part of the study suggest excellent face validity.

Why did this study fit so well within the INTERDEM mission?

INTERDEM through position papers, manifestos and the Intersectionality Taskforce have been instrumental in uncovering the impact of stigma on the lives of people living with dementia and their carers. I believe this article adds to that body of literature encouraging further global study. In line with the INTERDEM Mission, a robust measure such as the DICUS-Dementia can be used to enhance practice, policy and the quality of life of those affected by dementia and their families.

To read the full article: https://pubmed.ncbi.nlm.nih.gov/37650126/

Naomi Thompson: Investigating the impact of music therapy on two in-patient psychiatric wards for people living with dementia: retrospective observational study

I am a 2nd year PhD scholar at the Cambridge Institute for Music Therapy Research (CIMTR), Anglia Ruskin University (ARU). I qualified from ARU with a distinction in MA Music Therapy in 2020 and began to work clinically in a variety of settings. Alongside maintaining my clinical practice, I was always curious about the potential for research to develop and embed music therapy practices in clinical settings. I was pleased to be offered a research assistant position at CIMTR in 2021 to evaluate the impact of music therapy groups on two inpatient mental health dementia wards.

The findings from this study are presented in this article, for which we are honoured to have received the INTERDEM publication award. Encouragingly, we show the potential for music therapy to lead to significant reductions in routinely reported distress behaviours on inpatient mental health dementia wards on the days it is delivered. Qualitative data supported this, with staff saying that music therapy was calming, accessible, and provided an opportunity for positive and meaningful interactions.

While this study was small, it highlights the potential for music therapy, a psychosocial intervention delivered by trained practitioners, to provide meaningful reductions in distress on these wards. This could have meaningful clinical and cost implications, including reduction of antipsychotic medication and inpatient length of stay, and improving staff and family wellbeing. This aligns with the INTERDEM mission of providing timely and quality psychosocial interventions to improve the quality of life for people with dementia and their carers.

We are currently building on these findings in the MELODIC project (Music therapy Embedded in the Life Of Dementia Inpatient Care, NIHR204928). Here we are co-designing and piloting a standardised music therapy intervention for mental health dementia wards which can be tested for clinical and cost effectiveness in future trials.

To read the full article: https://pubmed.ncbi.nlm.nih.gov/36815454/

On behalf of the jury

On behalf of Georgina Charlesworth, PhD, chair of the jury committee

What a year for this award! For the past several years only six papers have made it to the shortlist for the INTERDEM Academy Publication Award. This year, readers of the ‘long-list’ were unable to cut down to fewer than ten papers. It was a very strong field with wonderful variety from prevention to inpatient care and from case studies to exceedingly ‘big’ data. The short-list jury often has long debates about how to choose one winner. Even with refined criteria and a clear scoring system for the paper and accompanying motivation letter, we can find ourselves in deadlock with the scores. This time, however, we had a run-away winner – a qualitative paper which captured the hearts and minds of all; even those jury members with a strong preference for quantitative research. Many congratulations to Jacoba Huizenga for a ‘stand out’ example of collaborative research. By engaging directly with people with dementia, and focusing on everyday needs, we hear perspectives that invite us to reconsider prevailing theories, models and funder preferences. Congratulations to Jacoba and the Brain Power research group, and thank you to the Dementia Enquirers for their inspiring training in participatory research.

Did the ease with which we identified a winner mean that our job was easy this year? Not at all. We had four papers all vying for second place. After considerable deliberation, the jury settled on runner-up positions for Naomi Thompson for her evaluation of music therapy during the pandemic, and Jem Bhatt for her work developing a tool for measuring stigma in dementia using data from around the globe. Hot on their heels were two further papers which we want to ensure receive honorable mentions – the ‘find my apps’ evaluation by David Neal, and Stevie Hendriks analysis of risk factors for young onset dementia.

Thank you to all entrants, well done to all our research leaders of the future, and if you are an early stage researcher with a paper being published this year, please do consider entering the next competition! We’re interested in any paper that takes forward one or more tenets of the INTERDEM mission: to develop pan-European research on Early, Timely and Quality Psychosocial Interventions in Dementia; to enhance practice, policy and the quality of life of people with dementia and their supporters, across Europe; to place people with dementia and their supporters at the centre of European research and practice, by actively involving them in developing these activities. We look forward to distributing awards for this year at Alzheimer’s Europe, and to reading next year’s entries.