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P29. Care approaches: Assistive technologies

Detailed programme, abstracts and presentations

P29.1. Online for support of family caregivers based on evidence based applications

GROOT ZWAAFTINK Rob, POST Herman

Alzheimer Nederland, Amersfoort, Netherlands

In 2016 Alzheimer Nederland launched an online platform (called dementia.nl) to support family caregivers of people with dementia. Caregivers can gather information, ask questions to experts, do online tests, take an online training, share ideas and questions on a forum and organize a support network. Developments on the platform are based on the wishes and needs of family caregivers. With (so far) over 300 pages of information and tips, over 60 stories from caregivers and a growing number of blogs, every caregiver can focus on what is important for them at that particular moment during the disease. Furthermore; there are 12 experts to ask questions (for example a notary, GP, dementia-expert or psychologist), there are tests (memory-test and a caregiver-wellbeing test) and an e-learning to cope with challenging behavior. In 2017, dementie.nl had over 700.000 unique visitors. Also, 89% of visitors rates us ‘good’ or ‘very good’ (scale: bad, poor, neutral, good, very good, n=2.300). We collaborate with scientific researchers in developing new support-tools. In this way we can use evidence based applications/technologies on our platform to better support family caregivers. In 2017, we incorporated an e-health intervention on dealing with challenging behavior, in combination with scientific research. In 2018, we incorporated a network support tool (MyInlife), an application developed and researched by Alzheimer Centre Limburg (University Maastricht). With this application caregiver can arrange support from their informal network and ask and plan for support of the person with dementia. We continue to work together with strategic partners in order to scale up the support for caregivers and the development of new applications.

P29.2. “Oh, I’d love one of these {MARIO companion robot} – so if you buy me one I’ll give you the money” (Person with dementia). The impact of a companion robot in combating loneliness in people with dementia. The MARIO project

CASEY Dympna1, MURPHY Kathy1, CORTIS Keith1, KOVACIC Tanja1, WHELAN Sally1, SANTORELLI Adam1, BARRETT Eva1, KOUROUPETROGLOU Christos2, RACITI Massimiliano3, RUSSO Alessandro4, PEGMAN Geoff5, SANCARLO Daniele6, D’ONOFIRO Grazia6, BURKE Megan1

1National University of Ireland Galway, Galway, Ireland, 2CARETTA-NET, Greece, Greece, 3R2M Solutions, Italy, Italy, 4CNR STLab, ISTC-CNR, Rome, Italy, 5RURobots, Manchester, United Kingdom, 6IRCCS Istituto di Ricovero e Cura a Carattere Scientifico, San Giovanni, Italy,

MARIO is a European Horizon 2020 funded project which aimed to develop a companion robot for people with dementia to enhance social connectedness and reduce loneliness. An iterative process was employed and people with dementia were involved at each phase of development across three pilot sites – hospital (Italy), community (UK) and residential care (Ireland).  This paper presents the qualitative finding from these care settings.

The development and testing in residential care took place between September 2016 and August 2017 after this a two-month evaluation phase took place where no new functionalities were added. Participants with dementia helped to guide the appearance of MARIO and the creation of a number of different apps including- My Music, My Games, My Memories.  Participants with dementia could interact with MARIO to access these apps via touchscreen and or voice commands.

A descriptive qualitative approach based on the work of Thorne et al., (2004) was used to capture the impact of MARIO on loneliness. Semi-structured interviews were used to collect data from relatives (n =28); Formal Carers (n=28) Managers (n=13) and people with dementia (n=10 using interview guides developed from the literature and expertise of the researchers. Directed qualitative content analysis based on the work of Hsieh and Shannon (2005), was used to analyse the data. Ethical approval was obtained from the research ethics committee in each respective pilot site.

Five preliminary themes were identified -perceptions/attitudes towards MARIO; challenges when using of social robots; impact of MARIO; utilisation of the MARIO applications; and making MARIO better. The findings provide evidence related to the potential role of companion robots in combatting loneliness in people with dementia.

P29.3. Inlife, an online social support intervention for caregivers of people with dementia: An evaluation in a randomised controlled trial

DAM Alieske, DE VUGT Marjolein, VAN BOXTEL Martin, VERHEY Frans

Maastricht University, Maastricht, Netherlands

Background: Informal caring for persons with dementia (PwD) does affect the well-being of the primary caregiver and changes their roles and social interactions. New online interventions might facilitate social support. Recently, an online social support platform, 'Inlife', was developed in the Netherlands aiming to enhance social support and positive interactions in informal support networks.

Objective: Evaluating the process characteristics and effectiveness of ‘Inlife’. Methods: A randomised controlled trial was performed. 96 participants were randomised into the Inlife intervention or the waiting-list control group. After 16-weeks of Inlife usage, the waiting-list control group could start with Inlife. Effects were evaluated at baseline (T0), at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The primary self-reported outcome measures included feelings of caregiver competence and perceived social support. The secondary outcomes included received support, loneliness, and psychological complaints. Qualitative semi-structured interviews with Inlife users were performed.

Results: No significant improvements were demonstrated for the intervention group on primary and secondary outcomes. This is in contrast with the qualitative findings, showing that Inlife facilitated care coordination, openness, involvement and positive interaction. Adherence was not optimal for all Inlife users. Additional per protocol and sensitivity analysis also did not yield significant effects. Inlife users were more active when they had a larger circle size.

Conclusions:An important lesson learned is that researchers should be modest regarding the effectiveness of online caregiver interventions in terms of quantitative measures of well-being. Nevertheless, online tools have the potential to facilitate the caregiver process. Future studies should develop research methods that can identify benefits for caregivers that are ecological valid in daily life and may apply extensive qualitative process evaluations. To improve optimal Inlife usage, additional offline guidance may be needed to extend access to available social capital, and to overcome the existing threshold to seek support.      

P29.4. The future of dementia care: How Alzheimer Scotland is leading on person centred assistive technologies

ANDERSON Gillian, COOPER Nicola, SWARBRICK Charlotte

Alzheimer Scotland, Edinburgh, United Kingdom

 This presentation aims to give an overview of Dementia Circle’s person centred protocols and methodologies. These have coalesced over the course of the past six years to become a system that we apply to environments and products, and now to assistive technology and digital services.

We will demonstrate Dementia Circle’s pioneering approach to evidencing the potential of assistive technologies to be a person centred and cost effective solution for people living with dementia (PLWD).

Dementiacircle.org provides an online platform for the exchange of ideas and feedback on products and services tried and tested by PLWD. This forum gives unbiased, peer authored reviews and an insight into what PLWD and their carers are using and finding useful in the real world.

Health and Social Care leadership in Scotland and the publication of a new Digital Health and Social Care Strategy 2017-22 point to technology being integrated into all aspects of health and social care, resulting in significant challenges and also opportunities for PLWD.

We are seeing a growth in the use of everyday consumer technology e.g. Alexa Voice Assistant and an interest in Virtual Reality experiences.

To support the workforce with this cultural shift we facilitated learning days with over 500 practitioners from health and social care, housing, voluntary sector and partner organizations across Scotland. Our 2017 cohort are now helping families to consider assistive technology as part of their care bundle.

Alzheimer Scotland is investing in service users and rethinking what it means to be a smart patient when everyone is a consumer of digital health and care. Through Dementia Circle we are amplifying the voices of those living with dementia to design what the dementia care of today and tomorrow will look like.

P29.5. IN-LIFE: A European digital platform for older adults living with dementia

ASTELL Arlene1, CABRERA-UMPIERREZ Maria Fernanda2, PANOU Mary3, TABAK Monique4, GAMS Matjaž5, LAAKSO Katja6, GOLJUF Karmen7, SMITH Sarah8, BLACK Belinda9, SAMUELSSON Christina10, KARAVIDOPOULOU Youla3, COSSU-ERGECER Fatma11, GRADIŠEK Anton5, BIZJAK Jani5, GJORESKI Hristijan5, MONTALVA Juan Bautista2, TOULIOU Katerina3, KAKLANIS Nikolaos3, STAVROTHEODOROS Stefanos3, TZOVARAS Dimitrios3, TZOVARAS Dimitrios3, KAIMAKAMIS Evangelos12, BUCHHOLZ Margret6, BUCHHOLZ Margret6, DERBRING Sandra6, DERBRING Sandra6, EKSTRÖM Anna13, GARCIA Alvaro14, CHAMORRO MATA Javier15, POTTER Stephen8, DEKKER Marit16

1Ontario Shores & Univerity of Toronto, Toronto, Canada, 2Universidad Politécnica de Madrid, Madrid, Spain, 3Centre for Research and Technology Hellas, Thessaloniki, Greece, 4Roessingh Research and Development, Roessingh, Enschede, Netherlands, 5Jožef Stefan Institute, Lubljana, Slovenia, 6DART - Centre for AT and AAC, Gothenberg, Sweden, 7Doktor24, Lubljana, Slovenia, 8University of Sheffield, Sheffield, United Kingdom, 9Sheffcare, Sheffield, United Kingdom, 10Centrum för demensforskning, Linköping, Sweden, 11TMZ, Almelo, Netherlands, 12General Hospital G. Papanikolaou, Thessaloniki, Greece, 13Centrum för demensforskning, Linköping, Sweden, 14INGEMA , San Sebastian, Spain, 15Consorcio Regional de Transportes de Madrid, Madrid, Spain, 16Roessingh Research and Development, Roessingh, Enschede, Netherlands

We present the European H2020 project IN-LIFE (INdependent LIving support Functions for the Elderly), a collaboration of 20 partners from seven countries to create and evaluate a digital platform for people living with dementia. The main goal was to integrate several existing technologies with a number of new applications to provide a comprehensive set of services. The IN-LIFE services were organised into four areas: Independent Living Support, Travel Support, Socialization and Communication Support and Caregiver Support. These included services to support local transport navigation, deliver web-based physical exercises, facilitate interactions with formal and informal caregivers, and fall detection. The IN-LIFE evaluation took place across six pilot sites (Greece, Netherlands, Slovenia, Span, Sweden, UK) and involved over 1950 people including older adults with cognitive impairment (N=1163), informal caregivers (N=362), healthcare professionals (N=407) and stakeholders (N=26). The evaluation examined the impact of the IN-LIFE platform on cognitive, emotional and physical functioning of the older adults with cognitive impairment, with well-being and quality of life as secondary measures. Additionally, we looked at user acceptance of the platform and individual services and the participant’s attitudes towards future provision of and payment for the IN-LIFE platform. The results confirm there is a huge interest and appetite among older adults themselves, informal caregivers, health professionals and stakeholders for technological services to support older adults living with cognitive impairment in the community. There was variability in the amount of usage different services attracted with some proving extremely popular while others were less so. The findings provide a range of valuable insights into the ways in which older adults and their families, health and social care services and other stakeholders wish to access technological services, what sort of services they are seeking, what sort of support they need to access services, and how these services might be funded.

P29.6. Living safer and longer at home: The TIHM story

CHRYSANTHAKI Theopisti1, REAM Emma1, PARSONS Catherine1, EGAN Kieren2, JONES Bridget1, KLEPACZ Naomi1, JOY Mark1, GAGE Heather1, JORDAN Jake1, MAGUIRE Roma2, NILFOROOSHAN Ramin3, KENNY Mark3, BARNAGHI Payam1, DIXON Julian4, ROSTILL Helen3

1University of Surrey, Guildford, Surrey, United Kingdom, 2University of Strathclyde, Glascow, United Kingdom, 3Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, United Kingdom, 4Strategic Health Connections, Surrey, United Kingdom

This paper will present findings and key lessons learnt from a UK randomised controlled trial that tested clinical (e.g. hospital admissions, quality of life, wellbeing of people with dementia and their carers) and cost effectiveness of a complex combinatorial domiciliary Internet of Things (IoT) intervention developed with, and for, people with mild to moderate dementia.  Its goal was to support people remaining at home, out of hospital and residential care. Technology Integrated Health Management (TIHM) for Dementia is one of seven NHS Test Bed innovations developed and funded by NHS England and Innovate UK to evaluate how cutting edge IoT technology can be used to improve the lives of those living with dementia.

People with dementia and their carers were recruited to provide a sample of 204 dyads (intervention: 101 dyads; and control: 103 dyads). Real-time clinical and environmental data were collected over a 6-month period using technology devices and sensors installed in participants’ homes.  Information was relayed daily to a dashboard-alert system (the ‘integrated view’), which was monitored 24 hours a day by the trained TIHM team. Alzheimer’s Society Dementia Navigators also provided support at home for non-emergency episodes. Machine-learning algorithms provided actionable information and alerts (e.g. related to wandering, UTIs, hypertensive/hypotensive episodes; dehydration) that were managed in a collaboration between the monitoring team and participant dyad.

The paper will present a synthesis of evaluation findings (including clinical and cost effectiveness, user acceptance, clinical decision making and disease management practices). It will discuss the potential for developing a refined TIHM system supported by assistive technologies and machine-learning algorithms for early detection of personalised symptom change; declining health status; and for the deployment of preventative, rather than responsive, interventions to improve quality of dementia care.

 

 
 

Last Updated: Wednesday 14 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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