Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - SMART4MD (Support, Monitoring and Reminder Technology for Mild Dementia)

Teaser

Population ageing within Europe has major social and economic consequences. Although many older people are able to support themselves and continue to make important contributions to society, the burden of non-communicable disease and disability increases with age, exerting...

Summary

Population ageing within Europe has major social and economic consequences. Although many older people are able to support themselves and continue to make important contributions to society, the burden of non-communicable disease and disability increases with age, exerting pressures on health services and support systems for older people. One of the most devastating conditions that predominantly affects older people is dementia . Dementia is not exclusively a condition of older people, but its prevalence increases sharply with age. It is an umbrella term describing a set of symptoms that occurs when various diseases or conditions affect the brain, the most common cause of dementia being Alzheimer’s disease (AD). Alzheimer’s disease was found to be the second most feared condition (after cancer) in a representative sample of 2678 adults in France, Germany, Spain and the US . The symptoms that comprise dementia can vary greatly, with people often experiencing memory loss but also problems in communication and attention as well as anxiety and depression . Treatment options currently remain centred on symptomatic treatment, the main class of drugs prescribed to people with mild to moderate AD dementia being cholinesterase inhibitors.
There are currently about 10.5 million people in Europe with dementia, costing around €275 billion annually. Given that the number of people with dementia in Europe is expected to rise to 13.4 million by 2030, the challenge of dementia is likely to remain formidable . Healthcare policies are therefore focused on extending the ability of older people to continue to live independently, as one way of meeting these challenges. This entails maintaining the quality of life of people with dementia, as well working to reduce the costs of their care.

SMART4MD project is an EU-scale research project focusing on experimental treatment of mild dementia. There are 11 international partners of this project including Alzheimer Europe.
This project builds on an innovative patient support tool to develop an application that is specifically targeted to patients with mild dementia. The content and layout of SMART4MD application, which will be accessible via tablets given to patients during the experimental pilot treatment, will be based on findings from the first stage of the project focused on user-centric design (focus groups, interviews, tests), but generally will be based on simplicity, memory helpers, reminders, photos, information sharing with carers and doctors and easiness of use for the patients.
The SMART4MD tool will help patients to adhere to their treatment, reduce the progression of their illness and share data with their carers and doctors. This will slow the patients’ cognitive and functional decline, avoid carers getting exhausted and reduce costs of emergency care.

Work performed

In the first 18 months of the reporting time period, the operational aspects of the SMART4MD project were drafted and reviewed along with a substantial amount of the preoperational work accomplished. This included setting up the clinical infrastructure for the pilot study:
• Over 100 people, mild dementia patients, carers and healthcare professionals were engaged, in focus groups, at 5 EU countries to collect and understand their daily activities, familiarity with current technology, ethics/privacy/information sharing aspects and platform usage requirements and motivation.
• Utilising the information gathered, accessibility experts and current technology abilities, consortium members have adopted and designed an existing innovative patient support application that is specifically tailored to people with mild dementia.
• Clinical partners have beta-tested the platform with dementia patients and their carers’ to validate the study concept before finalising the programming and design.
• A study Standard Operation Protocol (SOP) was produced constituting the basic requirements for ethical approvals and patient recruitment along with best practice for study and data management.
• Of the six clinical partners, three ethical requests have been approved by the relevant participating EU countries.
• Programming and software adaptation of the platform and integration with clinical partner systems has commenced.
• A visually aesthetic and informative project website promoting the projects targets and goals has been launched, allowing the public and stakeholders to remain updated about the project as it moves forward.

The project has made significant progress, in spite of the regrettable departure of the original technology provider (Handle my Health) which resulted in a 12 month delay to the overall project timeline. Once POW was approved as the new technology provider (6th of April 2016) WP2 and WP3 progressed very quickly. POW have designed and circulated a clickable prototype of the SMART4MD software and the workable app prototype is imminent and will enable the clinical trials to commence within six months.

As this reporting period relates to the first 18 months of the project, and the clinical trials have not yet commenced, most of the project primary goals have yet to be achieved. Nevertheless, WP2 tasks including the first round of focus group reports of MD patient technological, clinical and welfare requests and needs (deliverables 2.3), and the platform user interface development and adaptation that follows (Tasks 2.3 and 2.4) can form the basis of a standard of best practice for other technology providers across Europe.

POW, as the owner of the technological platform, intends to use these results in all future developments for old age applications. The SMART4MD platform is adopted as REST-compliant web service that allows requesting systems to access and manipulate textual representations of web resources using a uniform and predefined set of operations. This uniform approach will allow easy integration with future healthcare provider’s computer systems with a minimum amount of IT investment.

Final results

The contributions of this project and the expected impacts of the study that were mentioned in the original bid are all still relevant.
In short:
We believe that the SMART4MD platform will reduce the rate of cognitive decline in the first two years of MD, and that dementia sufferers will participate in society longer, driven by the reduced rate of cognitive decline, while improving both their’ s and their carer’s quality of life.
Also, by including case studies of the SMART4MD platform in each of our pilot countries this will show how the local healthcare systems could benefit from the use of the platform, and case studies would be combined with market analyses to design targeted business models, optimised for each country’s healthcare system.

Aditionaly, As much of our work is intended to be integrated and harmonised with the work of the WCAG accessibility task force for people with cognitive disabilities, and will likely become techniques for WCAG 2.1 (WCAG is the standard accepted across Europe for accessibility) it may enable other providers that are designing accessible touch software and technological instruments for patients with mild dementia, Alzheimer’s and old age, to use our results to better engage and help users all around the world.