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

Periodic Reporting for period 1 - DISTINCT (Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology (DISTINCT))

Reporting period: 2019-05-01 to 2021-04-30

Dementia was identified by the European Commission as a ‘societal challenge’ which relates to its impact on ‘social health’ that is people’s ability to: fulfil their potential & engage with the moral, legal and communal rules & regulations that govern the societies in which they live; act appropriately in a variety of settings & manage their own daily life; participate in meaningful & social activities, forming satisfying interpersonal relationships with others. Dementia raises complex social health challenges for people with dementia, their families and society since it leads to progressive deterioration in cognitive functioning and activities of daily living, resulting in people becoming less able to function with the rights and obligations of a citizen in society with the risk of being socially excluded and stigmatised; less able to communicate resulting in unmet needs, feelings of insecurity and crises if not well cared for; and less able to participate in meaningful and social activities resulting in feeling of uselessness, social isolation and poor quality of life if not adequately supported. The recent 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 ‘Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology’ (DISTINCT) programme 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 main aim of DISTINCT will develop a premier quality multi-disciplinary, multi-professional and intersectorial education and training research framework for Europe aimed at improving 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 of people with dementia. DISTINCT will focus on the promotion of social health in people with dementia through technology that will enable them to 1) fulfil their potential on a societal level, 2) manage their own life and 3) participate in social and meaningful activities, while investigating the usability of enabling technology for the target group, evaluating its (cost-)effectiveness and identifying conditions for successful implementation. DISTINCT will contribute to a more inclusive society, better health and improved quality of life of people with dementia and family carers and decreased costs because of improved self-management and less crises and mental illness.

The objectives are:
To develop a multi-disciplinary, intersectorial educational research framework for Europe to improve technology and care for people with dementia and carers, and to provide the evidence to show how technology can improve the social health of people living with dementia with the following objectives:
1. to set up DISTINCT, the European multi-disciplinary, intersectorial educational research network;
2. to provide a comprehensive training programme for ESRs to acquire a deep understanding of the nature of dementia and needs in relation to social health and the use of technology and to equip them with the right skills needed for work in academia, industry or the health and social sector;
3. to determine the practical, cognitive and social factors needed to make technology more useable for dementia;
4. to evaluate the effectiveness of specific contemporary technology to improve social health;
5. to identify conditions for successful implementation of technology (facilitators and barriers for reach, adoption, implementation and maintenance) in dementia care; and
6. to disseminate the knowledge and evidence on how technology can be best applied and implemented in dementia care and can improve the lives of people with dementia and carers.
Summary of work performed by each work packages (May 2021):

WP1 (Management)
1. Lead for DISTINCT Kick-Off team meeting (May 2019)
2. Lead for DISTINCT Recruitment and Training Event (July 2019)
3. Webpage set-up and maintenance
4. Organise business meetings (all beneficiaries invited) every 2-3 months
5. Lead for Mid-term review (Sep 2020) & main contact point for liaison with Project Officer
6. Informal individual support sessions for ESRs offered by project manager


WP2 (Training)
1. POSADEM online course 'Living with dementia: personal perspectives' (Jan-Mar 2020)
2. First DISTINCT School (planned March 2020) was cancelled one week before the started date due to COVID. Alternative remote online sessions offered
3. Masterclass 'Social Cognition and Technology' (April 2020) in collaboration with DeepSPA study group, DISTINCt consortium & INTERDEM Academy
4. Masterclass 'Social health as a framework in dementia research: Introduction to the MRC framework and Best Practice Guidance (May 2020)
5. Second DISTINCT School (Sep 2020) in Witten. Hybrid model: 8 ESRs were unable to travel due to COVID travel restrictions & attended online, 7 ESRs attended in person
6. Third DISTINCT School (May 2021) Online school due to ongoing COVID restrictions, though originally planned to be held in Prague

WP3-WP5 (Research)
All 15 ESRs are making steady progress despite COVID-linked delays/ challenges and remote working. Most ESRs are finalising, submitted, or published their first scientific publication - mostly systematic reviews and protocol papers. The majority of ESRs have applied to obtain local/ national ethics approval to conduct their studies. Some started their field work and data collection, others still waiting for local/ national COVID restrictions to be lifted.

First secondment. Four ESRs have completed their first secondment remotely, six secondments are ongoing, and the remaining five ESRs have made plans but have not started their first secondment. Since all DISTINCT secondments to date had to be conducted remotely, many ESRs are hoping to travel for a short visit and face-to-face meetings/ training sessions with their secondment partners when travel restrictions are lifted.
DISTINCT will focus on the promotion of social health in people with dementia through technology that will enable them to 1) fulfil their potential on a societal level, 2) manage their own life and 3) participate in social and meaningful activities, while investigating the usability of enabling technology for the target group, evaluating its (cost-)effectiveness and identifying conditions for successful implementation.

DISTINCT will contribute to a more inclusive society, better health and improved quality of life of people with dementia and family carers and decreased costs because of improved self-management and less crises and mental illness (Figure 1 DISTINCT Logic Model). DISTINCT will enhance the European Commission’s Public Health Strategies (2008) and the European Parliament resolution of 2011 for the ‘European Initiative on Alzheimer’s disease and other dementias’ as an EU health priority and supports member countries’ national dementia strategies.
figure-1-distinct-logic-model.png