World Alzheimer’s Day

21 September is World Alzheimer’s Day. On a so-called ‘normal’ year, people around the world would mark the occasion with a ‘Memory Walk’. Every year, the walk brings together people with dementia, their family members, friends, and those who work to improve their quality of life. This year, however, most activities across the world will adapt to the new reality of COVID-19.

 

 

Despite the adjustments, the online ‘gathering’s’ aims remain the same: to help raise awareness and funds for research, public health policy advocates, and the organisations that support patients and their families. Not to mention that it is more important than ever to share the message that they are not alone!

TeNDER seeks to extend the independence of people with chronic illnesses such as Alzheimer’s and improve the quality of life of patients and those who surround them. As a newly formed consortium of experienced partners, we join global efforts to raise awareness and promote research year-round.

We have also compiled resources in English about:

If you want to receive updates about TeNDER’s progress, sign up to our bi-annual newsletter by scrolling down to bottom on our website and entering your e-mail address.

Follow us on Twitter!

Supporting patients’ quality of life with assistive technology

The European Union’s Framework for Research and Innovation (Horizon 2020) funds projects that not only meet rigorous research standards, but also strive to address societal challenges. Each of these projects include partners from diverse sectors and hail from different disciplines. For example, they range from the social sciences and humanities to the medical sciences.

TeNDER and FAITH both fall under the latter category. For the next three years, they will pilot assistive technologies supporting the quality of life of different types of patients.

TeNDER: an integrated care model to manage multi-morbidity

TeNDER will pilot an integrated care approach for people affected by Parkinson’s disease, Alzheimer’s (and other forms of dementia), and cardiovascular disease. Using familiar and accessible tools and applications, TeNDER will help patients stay connected and feel safe in their environments. For example, health bands that monitor vitals and affective recognition software will alert a patient’s health and social care system to potential or ongoing health crises.

Other services will assist patients in their day-to-day lives. This may mean, for example, helping them connect to local pharmacies, to cleaning and food delivery services, and so on. TeNDER does not replace patients’ contact with those who surround them. Rather, it helps link their environment to support their independence.

FAITH: intelligent post-cancer support with Artificial Intelligence

Harnessing the potential of Artificial Intelligence, FAITH will develop and pilot an application that identifies and analyses depression markers in people that have undergone cancer treatment. The project’s primary goal is to help patients be more aware of their mental health situation. This allows them the possibility to improve their quality of life.

FAITH will collect and monitor a range of health indicators. By analysing them, FAITH can infer information about the mental status of a person in a non-intrusive way. However, it does not aim to replace clinicians at all. Rather, it works in support of clinicians, providing them an additional tool for their practice.

Supporting quality of life

Over the course of three years, TeNDER and FAITH will work to support the quality of life of different types of patients in diverse settings. Both consortia also aim to make their approaches fit for widespread implementation. This way, they can benefit patients beyond the scope of the projects. We look forward to collaborating throughout this undertaking to amplify our voices and support each other’s aims for the benefit and health of patients throughout the EU.

Learn more about the EU's Framework for Research and Innovation (Horizon 2020)

Adapting to a new reality: The experience of Asociación Parkinson Madrid

Photo credit: Jessica Jiménez Cruz

There is no doubt that the global pandemic caused by COVID-19 has impacted all sectors of society and the population as a whole. In this article, we will focus on the impact that it has had (and continues to have) on people affected by Parkinson’s disease and share the strategies Asociación Parkinson Madrid developed during the lockdown in order to alleviate this situation.

Parkinson’s disease is neurodegenerative and chronic. Today, there is no cure, therefore, treatment seeks to counteract symptoms with both medication and therapies with the aim of keeping the person autonomous for as long as possible and improving their quality of life. Both treatments, pharmacological and therapeutic, are essential for people with Parkinson’s.

The general lockdown that countries in Europe experienced led entities, such as Asociación Parkinson Madrid (APM), to implement telework solutions and teletherapies so that people affected by the disease could continue their treatment.

On 11 March, APM had to close its doors due to the deteriorating situation. At that time there were more than 600 patients following their rehabilitation at our centres and with home assistance. All APM professionals were teleworking by the end of March. We called patients to learn more about their needs and concerns, and to evaluate the impact COVID-19 and the lockdown measures were having on them.

Asociación Parkinson Madrid therapist Jessica Jiménez Cruz

Professionals were concerned about their patients’ therapies because it is known that long periods of inactivity can worsen symptoms. So, it was important that, given the impossibility of providing therapies at home and in APM centres, those affected by Parkinson’s disease could continue their therapies at home.

In this context, APM started providing physiotherapy, speech therapy, and psychological care, using new technologies, allowing us to maintain contact with patients. Although everything changed very quickly, APM’s response unfolded in stages.

At first, APM used social networks such as Twitter, LinkedIn, and Facebook to share exercise infographics. This enabled patients to follow therapeutic instructions.  However, the lack of personal contact sometimes made it difficult to follow the steps laid out in the infographics. Sometimes patients phoned the association to request further explanations, sharing their difficulties in carrying out some of the exercises. Dealing with this aspect over the phone was very difficult for APM therapists.

The next step involved streaming the therapy sessions. The videos with the exercises performed by the therapist were previously recorded. Space and the home conditions were taken into account. The interaction in the YouTube chat was very positive, both between the patients and with the therapists, an aspect that was useful in improving the sessions.

The last step was to develop one-on-one tele-rehabilitation, which allowed patients to choose different rehabilitation sessions and have direct contact with their therapists.

APM therapists Jessica Jiménez Cruz and Rocío Martín Picazo, who were involved in this entire process, shared their experiences, pointing out the most positive aspects and the aspects that need to be improved.

Among the aspects that need to be improved, they both point out that there is still a technological gap in regard to older people’s digital skills. Older patients often turned to their relatives, grandchildren, and caregivers to overcome this difficulty and many learned from them. The gap remains, however.

From the technical point of view there was also an internal learning process, the first videos are of less quality compared to later ones where lighting or positioning were considered. Another issue that arose concerned the lack of interoperability between some of the devices, software, and video formats.

One of the positive aspects of tele-rehabilitation that Jessica Jiménez pointed out, has been that it allows therapists to personalise the sessions; that is, it allows people affected by Parkinson’s disease and their families to use this tele-space with their therapist to fit their specific needs. In addition, this experience has provided a new working model for professionals who until now were not usually considered for telework.

For Asociación Parkinson Madrid, there is no doubt that new technologies are the future and that more and more will be introduced in the field of health. Our next steps will include improving tele-rehabilitation and making it more accessible for a greater number of older people by helping them bridge the technological gap and adapt to a new reality.