DISTINCT - Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology

In Europe, nearly 10 million people are affected by Dementia and this is expected to double by 2050. Most people affected by dementia want to live in their own homes and maintain their independence and autonomy as long as possible with support of family and/ or care givers. For that aim, people with dementia are either supported by their relatives or by health care professionals. Though, this often constitutes high caregiver burden. The health care, industry and social sectors are urgently struggling with how to support people with dementia and carers (cost-) effectively and how and what kind of technology can help with this. The position paper of the INTERDEM Social Health Taskforce showed that, besides personal and disease related factors, carer functioning is one of the most important social factors influencing the ability of the person to manage life with some independence. This means there is an immediate need for research specialists working to improve dementia care and supporting people at home and so limiting the economic and societal costs.

The DISTINCT program will develop 15 Early Stage Researchers (ESRs), who become experts in the health and social needs of people with dementia and the effective application of technological solutions to support them. The unique academic and non-academic collaborative partnership of DISTINCT comprises 13 world leading research organizations across 8 European countries, 9 partners who include Alzheimer Europe, Alzheimer Disease International, the World Federation of Occupational Therapists and 2 SMEs for technology and dementia care. Many members of the DISTINCT team are established researchers in the INTERDEM, an interdisciplinary European collaborative research network of 180 leading academics working to improve early detection and timely and qualitative psychosocial interventions in dementia. DZNE Witten and Witten/Herdecke University contribute with their key competences in implementation and dissemination, quality measures/indicators, research methods, complex trial designs and dementia care strategies.

The main aim of DISTINCT is to develop a premier quality multi-disciplinary, multi-professional and intersectorial education and training research framework for Europe. In detail, the project aims to improve technology and care for people with dementia and their carers and to use coherent themes and interrelated ESRs within DISTINCT to provide the evidence to show how technology can improve the lives and social health of people with dementia. Within this framework, the ESRs will be embedded in a comprehensive training program and practical, cognitive as well as social factors will be determined to make technology more useable for dementia. Eventually, the effectiveness of specific contemporary technology to improve social health will be evaluated.

Not only conditions for the successful implementation of technology in dementia care, but also the knowledge and evidence on how technology can be best applied and implemented in dementia care is to be disseminated.

Simone Anna Felding - focusses on Acceptance and adoption of social robots into everyday life for people with dementia living in nursing homes within the work package “Technology to fulfil potential and obligations at a societal level”. This qualitative longitudinal, ethnographic study will characterize the implementation processes from the perspective of the users. The expected results should give insights into the understanding of the use and utilization of social robots and their impact on social interaction, participation and the role of the family (caregiver) and a better understanding of requirements of social robots to fit well into habitual practices, routines and cultures. ESR 4 is supervised by Prof. Martina Roes, from DZNE, and co-supervised by Dr. Sonja Teupen, from DZNE, and Dr. Nete Schwennesen, from University of Copenhagen.

“As an Early Stage Researcher in DISTINCT I will observe how a social robot interacts with people with dementia living in nursing homes, which is linked to how social robots are implemented in long-term care. I come from a background in cultural anthropology from the Department of Anthropology, University of Copenhagen (BSc, MSc) including a semester at the University of Iceland in Reykjavík.  Throughout my studies, I have been interested in the anthropology of health. While being a Master of Science student I developed a research interest in dementia. In my previous employments as a Research Assistant at the University of Copenhagen, I have looked at life with dementia at nursing homes, the complicated relations between people with dementia, their relatives and care staff, and the implementation of technologies aimed at improving life with dementia. I look forward to expanding my knowledge and learning more about these topics.”

Beliz Budak - investigates the implementation of AAL technology addressing communication-related issues of dementia such as loneliness in nursing homes. This project is within the work package “Technology enabling participation in social activities”. A review will shed light on suitable psychosocial interventions and AAL technologies that can be delivered by the technology. A pilot study will identify facilitators and barriers across care settings. Final reports will characterize relationships among implementation strategies and assess feasibility and importance. The expected results should give insights into the understanding about the link between technology and the psychosocial effect of dementia on communication, and how it can contribute to empowering approaches of communication. Finally, an implementation framework suggestion will be provided that allows a tailored implementation strategy for long-term care facilities between different providers (home care, adult day care, nursing homes etc.) who actively use AAL technology. ESR 15 is supervised by Prof. Martina Roes, from DZNE, and co-supervised by Franziska Laporte Uribe, PhD, from DZNE, and Dr. Franka Meiland, from Amsterdam UMC.

“My name is Kübra Beliz Budak and I’m a Psychologist by training. I am interested in bridging the gap between using technology and improving the lives of People with Dementia. As an ESR, I’ll be researching possible solutions for the communicative issues People with Dementia have, with the help of social robotics. Social robotics despite new, appears to be a well-received helping tool when it comes to people with Dementia.  My degree work was mainly concerned with terminal stage cancer patients with depression and whether psychosocial interventions would benefit them. Throughout my degree, I have worked with patients with chronic illnesses and their psychological treatments. I’ve also worked in user experience field, striving to make websites easier to use by different populations. Providing proper care for People with Dementia is a growing problem throughout the world. Now with the DISTINCT project, I will be able to combine my experience and training to solve the communication aspects of this problem.”

Both ESRs have to complete two secondments for 3 month each and will be enrolled for a doctoral degree at UWH.

The first secondment for ESR 4 in year one will be with Alzheimer Europe to develop a longitudinal case study and to gain a better understanding of dementia activities for people with dementia and lay persons. The second secondment is currently being negotiated with project partners such as Karolinska Institute and SilverFit.

The first planned secondment for ESR 15 is with Alzheimer Europe, as well, to develop an international survey and to gain a better understanding of dementia activities for lay persons and professional care facilities. The second secondment with a Silverfit partner is meant to investigate AAL technology, addressing communication as a resource of expert knowledge for the person with dementia, family caregivers and professionals or an expert system that suggests interventions.

DISTINCT Schools in cooperation with INTERDEM Academy

Within the project, five DISTINCT Schools of five days each will take place. At these events, the ESRs will present their own work to their peers and senior colleagues. The first DISTINCT School was hosted by DZNE site Witten in September 2020.

Further information concerning DISTINCT is offered on the DISTINCT website: https://www.dementiadistinct.com/