Periodic Reporting for period 2 - DISTINCT (Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology (DISTINCT))
Reporting period: 2021-05-01 to 2023-07-31
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 was to 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 focused 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 main aim of DISTINCT was to 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 focused 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.
Summary of work performed by each work packages (May 2021-July 2023):
WP1 (Management)
1. Three-monthly DISTINCT Management meetings with beneficiaries were held to: a) discuss the project progression & related challenges, b) plan training activities e.g. DISTINCT school, c) develop collaborations between beneficiaries/ ESRs. Agenda for each meeting was drafted and circulated to members at least one week in advance.
2. In collaboration with the EC Project Officer, WP1 team played the key role in preparing for and executing the 3-months project extension request, to support the parental leave of ESR 14. The new Project End date of 31st July 2023 was agreed with the funder in April 2023.
3. Project Manager continued close liaison with all ESRs to ensure all required information for scientific deliverables was obtained. All deliverables were submitted before the project end-date.
4. Project Manager continued to offer informal 'checking-in' sessions to ESRs.
WP2 (Training)
1. The 3rd DISTINCT School (17-21 May 2021): due to ongoing travel restrictions, this was held online. Attended by 15 DISTINCT ESRs, 10 INTERDEM Academy researchers and 8 PhD students from the Czech Technical University (co-host of this school).
2. The 4th DISTINCT School (14-18 October 2021): the hybrid model School was held in Nottingham, UK. Attended by 15 DISTINCT ESRs (13 in person, 2 online – one due to travel restrictions, another due to sickness) and 7 INTERDEM Academy researchers. D
3. The 5th and final DISTINCT School (16-20 May 2022): the hybrid model School was held in Zamora, Spain. Attended by 15 DISTINCT ESRs (in person) and 5 INTERDEM Academy researchers.
WP3-WP5 (Research)
All 15 ESRs, in collaboration with their supervisors, have submitted their scientific deliverable report on time. Prof Rose-Marie Dröes, DISTINCT Research Coordinator, has continued to lead and co-ordinate development of the Best Practice Guidance.Based on the results of the research projects the DISTINCT ESRs together with their supervisors formulated 57 recommendations which were integrated in the INDUCT-DISTINCT Best Practice Guidance for Human Interaction with Technology in Dementia of which the last update was published and made available online (Introduction - INDUCT Best Practice Guidance (dementiainduct.eu)) in June 2023. This Best Practice Guidance now contains 113 recommendations in total (56 from INDUCT and 57 from DISTINCT), more specifically 39 recommendations on Practical, cognitive & social factors to improve the usability of technology for people with dementia, 25 recommendations on Evaluating the effectiveness of specific contemporary technology, and 49 recommendations on Facilitators and barriers in the implementation of technology in dementia care. The full Guidance is available here: https://www.dementiainduct.eu/guidance/
WP6 (Dissemination)
As of August 2023, 41 peer-reviewed original research and review articles that are directly related to the DISTINCT projects, have been published. We are expecting more publications in late 2023 and early 2024 as ESRs work towards completing their PhDs.
WP1 (Management)
1. Three-monthly DISTINCT Management meetings with beneficiaries were held to: a) discuss the project progression & related challenges, b) plan training activities e.g. DISTINCT school, c) develop collaborations between beneficiaries/ ESRs. Agenda for each meeting was drafted and circulated to members at least one week in advance.
2. In collaboration with the EC Project Officer, WP1 team played the key role in preparing for and executing the 3-months project extension request, to support the parental leave of ESR 14. The new Project End date of 31st July 2023 was agreed with the funder in April 2023.
3. Project Manager continued close liaison with all ESRs to ensure all required information for scientific deliverables was obtained. All deliverables were submitted before the project end-date.
4. Project Manager continued to offer informal 'checking-in' sessions to ESRs.
WP2 (Training)
1. The 3rd DISTINCT School (17-21 May 2021): due to ongoing travel restrictions, this was held online. Attended by 15 DISTINCT ESRs, 10 INTERDEM Academy researchers and 8 PhD students from the Czech Technical University (co-host of this school).
2. The 4th DISTINCT School (14-18 October 2021): the hybrid model School was held in Nottingham, UK. Attended by 15 DISTINCT ESRs (13 in person, 2 online – one due to travel restrictions, another due to sickness) and 7 INTERDEM Academy researchers. D
3. The 5th and final DISTINCT School (16-20 May 2022): the hybrid model School was held in Zamora, Spain. Attended by 15 DISTINCT ESRs (in person) and 5 INTERDEM Academy researchers.
WP3-WP5 (Research)
All 15 ESRs, in collaboration with their supervisors, have submitted their scientific deliverable report on time. Prof Rose-Marie Dröes, DISTINCT Research Coordinator, has continued to lead and co-ordinate development of the Best Practice Guidance.Based on the results of the research projects the DISTINCT ESRs together with their supervisors formulated 57 recommendations which were integrated in the INDUCT-DISTINCT Best Practice Guidance for Human Interaction with Technology in Dementia of which the last update was published and made available online (Introduction - INDUCT Best Practice Guidance (dementiainduct.eu)) in June 2023. This Best Practice Guidance now contains 113 recommendations in total (56 from INDUCT and 57 from DISTINCT), more specifically 39 recommendations on Practical, cognitive & social factors to improve the usability of technology for people with dementia, 25 recommendations on Evaluating the effectiveness of specific contemporary technology, and 49 recommendations on Facilitators and barriers in the implementation of technology in dementia care. The full Guidance is available here: https://www.dementiainduct.eu/guidance/
WP6 (Dissemination)
As of August 2023, 41 peer-reviewed original research and review articles that are directly related to the DISTINCT projects, have been published. We are expecting more publications in late 2023 and early 2024 as ESRs work towards completing their PhDs.
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.
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.