World Parkinson’s Day during COVID-19 outbreak

In 2016, The Lancet’s “Global Burden of Disease” report estimated that 6.1 million people were affected by Parkinson’s disease worldwide, with the number set to double by 2050.

Parkinson’s symptoms gradually develop as cells in a specific part of the brain are affected in ways that impact movement. Researchers across the world work on different dimensions of the disease: from seeking to understand the course of the disease and its possible triggers and predisposing factors, to developing treatments. In the realm of care, projects like TeNDER are working to extend the autonomy of patients with Parkinson’s disease, among others.

Every 11 April – on the anniversary of James Parkinson’s birthday, the physician who first identified the disease in 1817 – people worldwide coordinate to raise awareness of the condition and the social, economic and psychological impact it has on individuals and communities. However, efforts to rally support for patients, as well as for research and access to care, happen year-round. There are local, regional, national and global organisations anyone can reach out to for support.

This year, in the context of COVID-19, many awareness-raising campaigns will take place only online. And in addition to these, groups and organisations have mobilised to provide valuable information for patients with Parkinson’s disease and those who surround them. TeNDER consortium partner Asociación Parkinson Madrid (Madrid Parkinson Association), has adapted guidelines in Spanish for those affected; and the European Parkinson’s Disease Association has also gathered important resources in English.



Research contributes to the fight against COVID-19

In the context of COVID-19, TeNDER partners – particularly those who work directly with patients – are taking precautions to ensure the safety of patients, carers, health professionals, and the general population.

Spominčica – Alzheimer Slovenia, Servicio Madrileño de Salud, Asociación Parkinson Madrid, Schön Klinik and the University of Rome – Tor Vergata are currently implementing national and international COVID-19 health protocols (follow the links above to learn more).

While doctors, nurses, and other health professionals and staff are working tirelessly in the frontlines, researchers are working on developing curative and preventive care. Many are also studying behaviour, to help improve socio-economic policies and responses.

Advances in the fight against COVID-19 are aided by international research collaboration: research building on research – its successes and its failures. The European Commission has launched special actions to facilitate such efforts. Meanwhile, The Lancet has reported that research organisations across the world have formed a coalition to support resource-limited settings. This is by no means an exhaustive list.

To learn more about ongoing research worldwide, consult research university websites, the World Health Organization’s COVID-19 research database, etc. In addition several news sites and scholarly journals have opened access to COVID-19-related information.


For practical information on the impact of COVID-19 measures and on international guidelines, here are some additional external resources for specific groups; e.g., elderly people, patients with chronic diseases, etc.:


Disclaimer: the information provided in external links does not represent the views of TeNDER.

On dementia

Myosotis – colloquially known as forget-me-nots

"What day is it?" asked Pooh.
"It's today." squeaked Piglet.

"My favourite day." said Pooh.

- A. Milne

All of us who have cared for patients living with dementia, know this progressive neurodegenerative disease steals memories, identities, and livelihoods. It often starts with mild, barely perceptible symptoms, making it hard to recognise what is happening, and it usually takes years to get a diagnosis. The main factor contributing to its development is age. As ageing populations are a worldwide reality, dementia is having a large social and economic impact.

People with dementia have problems with short-term memory, such as keeping track of a purse or wallet, paying bills, planning and preparing meals, remembering appointments, traveling out of the neighbourhood, etc. This worsens with time and people become more and more dependent on family and friends. This can go on for ten, fifteen years, or more. Alzheimer Disease International [1] and WHO [2] report it is one of the most expensive diseases with estimated socioeconomic costs topping $820bn each year; a third of care costs are from informal care.

Families usually adapt their lifestyles to members with dementia. There is the added complexity that much of this family care is provided by ‘sandwich’ generations who work as well as care for elderly family members and children. This is why it is so important to help people with dementia to be as autonomous as possible. Greater autonomy helps families worry less and facilitates social and health care delivery.

As dementia progresses, there are on average three people caring for one patient. In such a context, the term ‘living with dementia’ extends beyond the patients themselves, it involves their families and (in)formal carers. Research in this field has produced evidence on how to slow down the progression and fortunately, we also have different interventions and drug testing underway [3].

Emerging technologies are allowing communities to provide support. With new technologies, patients can be empowered to stay confident and independent. When necessary, modules that measure health parameters give professionals from the social and health care sectors remote access to patient dataand enable them to approach to the patient at the personalised level. Early interventions are beneficial for patients and their families, as well as to relieve the work and save the time of care systems professionals [4].

“Something that’s really important is to help people understand the level at which we want to be engaged. We still want to have social activities.”

– Anonymous Alzheimer’s patient

TeNDER will contribute to this research field by engaging key actors in the sector and leverage innovation to provide a concrete set of services to empower senior citizens in their daily activities. Moreover, the project will provide care institutions, professionals and authorities dedicated tools that could help them strengthen the management processes, as well as promote a framework for implementation and adoption. Ethics, and the integrity and privacy of all participants are key priorities as well.

In the context of COVID-19, all TeNDER partners – particularly partners who work directly with patients – have taken the necessary precautions to ensure the safety of vulnerable populations, patients, carers and health professionals. Spominčica – Alzheimer Slovenia, Servicio Madrileño de Salud,Asociación Parkinson Madrid, Schön Klinik and the University of Rome – Tor Vergata are currently implementing national and international COVID-19 health protocols (follow the links above to learn more).

For more information on the impact of COVID-19 measures and on international guidelines, here are some additional external resources for vulnerable populations:



“Some days there won’t be a song in your heart. Sing anyway.” – Emory Austin


The field of dementia care has changed beyond recognition in the last 30 years. In 1987 dementia was supposed to be a rare condition. It was barely spoken about and was seen as an insignificant part of older people’s psychiatric care [7]. Today, more than 10 million Europeans are diagnosed and living with different forms of dementia. The time needed for informal care is estimated at 82 billion hours and 71% of these hours are supplied by women.

Women make up the largest proportion of the professional care workforce in dementia care[8]. Furthermore, the number of people with dementia is still probably underestimated. We can see different interpretations of cognitive impairment and dementia due to differences in health structures, that affect diagnoses and treatments.Patients with mild cognitive impairment or early-stage dementia remain outside clinical settings and most patients are not diagnosed in a timely manner, or not diagnosed at all [9].

Early diagnosis is a crucial step in accessing care and support for a person with dementia. With a proper diagnosis, family members and carers can have timely access to education, training and support programmes. Being aware of these facts, different support opportunities can drive the decision to seek a diagnosis and help prolong the autonomy of people.



„It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.“ – Terry Pratchett


I was invited to share my story about how my life has changed since my diagnosis of Alzheimer’s disease. I am pleased that my thoughts and positive attitude towards life were so well-received. I was told that I literally gave the attendees goosebumps! I try to always be open-minded and optimistic and to see the future in the brightest way possible. In my introduction, I told participants how I coped with the diagnosis and managed to re-organise my daily routine in order to live life to the fullest. I stressed that nothing has made me happier than realising what great friends I have.

Even though orientation is still the biggest challenge, on an everyday basis I continue with my leisure time activities, just as I always have done – playing tennis, ping pong, editing magazines, hiking, painting, and gardening. Currently, I am more worried, due to changes in my medical therapy, but I remain passionate about all the things I love. I gave the students a take-home message that I believe we all should take into account: “Even with dementia life is still beautiful” (Tomaž Gržinič) [10].

Don’t argue

Accept the situation

Nurture yourself

Creative problem-solving

Enjoy the moment!

As a person’s dementia develops, it is likely to have an impact on their ability to carry out certain activities. And here new technology can also help when managing the time, connections and planning. Meaningful activities such as taking a walk, cooking or painting can help preserve dignity and self-esteem. Some of the most beneficial activities can be simple, everyday tasks such as setting the table or folding clothes. They can help a person with dementia feel connected to normal life and can maximise choice and control. Some activities offer an emotional connection with others.

Throughout my caregiving journey, there were many moments of laughter, tears, frustration, sorrow and happiness, and I worked at incorporating them all into my repertoire. Some moments stand out as very special — like the time my husband who had not spoken for almost a year, replied, “You are the love of my life,” when I asked him if he knew who I was. It is these moments that kept me going.

Looking back, I think caregiving was one of the most difficult things I’d ever done. And as I watched the days turn into months, and then into years, I learned how to pace myself, how to reach out and ask and receive help. This did not occur overnight, but with lots of trial and error. Another thing I did that was invaluable was to join a support group. This in itself was a lifesaver and a source of comfort and socialisation. Fellow travellers make the best companion on the caregiving journey (Susan Miller) [11].



Dementia is not a single disease; it’s an umbrella term — like heart disease — that covers a wide range of specific health conditions. Diseases grouped under the umbrella term “dementia” are caused by abnormal brain changes. These changes trigger a decline in thinking skills, also known as cognitive abilities, severe enough to impair ones‘ daily life and independent living. They also affect behaviour, feelings and relationships [5].

Dementia is caused by damage to brain cells. The brain has many distinct regions, each of which is responsible for different functions (for example, memory, judgment and movement). When cells in a particular region are damaged, that region cannot carry out its functions normally. This damage interferes with the ability of brain cells to communicate with each other. When brain cells cannot communicate normally, thinking, behaviour and feelings can be affected. Behavioural and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage.

Alzheimer’s disease (AD) is the most common form of dementia (60% – 80% of the cases). Besides age being a major risk factor, other risk factors include unhealthy lifestyles and vascular, metabolic, and nutritional risk factors [6].


Figure: Understanding the phases of pre-dementia and dementia (MOPEAD project publication)


Older adults often have some decline in memory like difficulties with reasoning, memory, attention, language, but some have the perception that they experience changes that go beyond normal ageing. In this case, we speak about subjective decline that needs to be confirmed by a formal examination.

People with mild cognitive impairment (MCI) – have problems with their memory or cognitive function serious enough to be noticeable with neurological tests. At this stage, it is very important, to recognise the problems and to help the person to stay autonomous as long as possible, to manage lifestyles and seek the doctor advice.

Mild dementia due to AD People may experience memory loss of recent events, may have an especially hard time remembering newly learned information and ask the same question over and over. At this stage, people have increasing trouble finding their way around, even in familiar places.

Moderate dementia due to AD people grow more confused and forgetful and begin to need more help with daily activities and self-care. These difficulties make it unsafe to leave those in the moderate dementia stage on their own.

Severe dementia due to AD – at this stage, the disease has a growing impact on movement and physical capabilities. They require total daily assistance with personal care [12].

  1. Available at:
  2. Available at:
  3. Available at:
  4. OECD Policy Brief. Renewing priority for dementia: Where do we stand? Paris: OECD Publishing, 2018. Available at:
  5. Available at:
  6. Rodríguez-Gómez O, Rodrigo A, Iradier F, Santos-Santos MA, Hundemer H, Ciudin A, Sannemann L, Zwan M, Glaysher B, Wimo A, Bonn J, Johansson G, Rodriguez I, Alegret M, Gove D, Pinó S, Trigueros P, Kivipelto M, Mathews B, Ciudad A, Ferreira D, Bintener C, Gurruchaga M, Westman E, Belger M, Valero S, Maguire P, Krivec D, Kramberger M, Simó R, Garro IP, Visser PJ, Dumas A2 Georges J, Jessen F, Winblad B, Shering C, Stewart N, Campo L, Boada M; MOPEAD Consortium. “The MOPEAD project: Advancing patient engagement for the detection of ‘hidden’ undiagnosed cases of Alzheimer’s disease in the community.” Alzheimer’s & Dementia; 2019; 15 (6): pp. 828-839
  7. Dementia: Reflections 1987-2017, by Professor Dawn Brooker Available at:
  8. Available at:
  9. Barnett JH, Lewis L, Blackwell AD, Taylor M. Early intervention in Alzheimer’s disease: a health economic study of the effects of diagnostic timing. BMC Neurolology (2014; 14:101). doi: 10.1186/1471-2377-14- 101.
  10. Available at:
  11. Available at:
  12. Available at:

What is integrated care?

Integrated care is a broad term that describes how health and social care delivery can be linked and/or coordinated to address issues such as fragmentation and miscommunication, among others.

Though there are different approaches to integrated care, they all part from common concerns: from preserving the quality of life of patients to securing access to quality care in the face of rising healthcare costs.

These challenges are happening side-by-side positive developments, including technological advancements and a growing array of medical and nursing specialties.

In this landscape, an integrated care approach helps ease communication between different care providers (physicians, specialists, carers, etc.) and with patients, and it helps align policies and initiatives with day-to-day health and social care delivery. All this is especially important considering that an increasing life expectancy corresponds with a rise in chronic – and often co-occurring (multi-morbidity) – illnesses.

Applying integrated care models

The World Health Organization (2016), has identified different settings where such models are often applied:

  • across health interventions (preventive and curative);
  • between the health and social sectors;
  • in different clinical settings (hospitals, residential treatment centres, day care, urgent care, etc.), as well as non-clinical settings (administrative, etc.); and
  • at policy and management levels.

The TeNDER integrated care ecosystem will operate across a number of these areas, tailoring its approach to manage issues related to multi-morbidity in patients with neurodegenerative diseases, mainly Parkinson’s and Alzheimer’s.

Additional sources on integrated care

If you wish to learn more about the general concept of integrated care and its various applications in Europe, here are some external resources you can explore:

World Health Organization (2016). “Integrated Care Models: An overview,” Health Services Delivery Programme – Division of Health Systems and Public Health.

Mariana Dates, et al (2018), “Health system performance assessment – Integrated Care Assessment (2157303 HSPA),” European Commission.

Expert Group on Health Systems Performance Assessment (2017). “Tools and methodologies to assess integrated care in Europe,” European Commission.

Ellen Nolte and Martin McKee, et al (2008). Caring for people with chronic conditions: A health system perspective. New York, Berkshire: Open University Press/McGraw-Hill.

How can assistive technology respond to new healthcare demands in Europe?

Resolution 60.29 of the World Health Assembly (WHA) on Health Technologies recognises that medical devices are indispensable tools in the provision of medical care for prevention, diagnosis, treatment, and rehabilitation. It also recognises that they are essential to achieving internationally-agreed health-related development goals, including those set by the Millennium Declaration (1).

In addition, the WHA resolution 61.21 on the global strategy and action plan on public health, innovation and intellectual property acknowledges that current initiatives are not sufficient to overcome the challenges of guaranteeing access and facilitating the innovation of health products and medical devices (2).

Assistive technologies enable people to live healthy, productive, independent, and dignified lives, and to participate in education, the labour market and civic life. Furthermore, these technologies help reduce the need for formal health and support services and long-term assistance, as well as ease the burden of care placed on caregivers (3). 

Without assistive technology, people are often excluded, isolated, and locked into poverty, thereby increasing the impact of disease and disability (4).

With an ageing population in Europe, cognitive, neurological, cardiac disorders and other chronic illnesses are becoming more frequent, generating changes in social and health needs (5). This reality is associated with the incidence of multi-morbidities – where two or more chronic illnesses co-occur –  which makes it important to re-orient health systems towards better monitoring the population and promoting greater independence (5, 6). 

Improving the quality of life of patients and those around them is one of the priority objectives of the European Union (7). TeNDER adopts this priority as a guiding principle. In practice, the project tools integrate a modular, personalised system capable of recognising changes in habitual behaviour, movements and mood using a multisensory system. This information is then shared with all relevant actors involved in the patient’s care. 

Who can benefit from TeNDER?

– Patients with Alzheimer’s disease (AD), Parkinson’s disease (PD) and co-morbidity with other chronic illnesses, such as cardiovascular disease (CVD).

– Caregivers: formal and informal ones.

– Social and health care professionals: physicians, nurses, physiotherapists, social workers, etc.

– Patient associations.

Which health, well-being and socioeconomic benefits?

TeNDER‘s integrated care approach incorporates assistive technologies, and this can have a positive impact on the health and well-being of a person and their family, as well as broader socioeconomic benefits. For example:

– The doctor and the patient will be alerted when cardiovascular risk begins to present complications in her/his health condition, having the possibility of anticipating a cardiovascular event (8). 

– The caregiver of a person with dementia may know the location of the patient and whether she/he  is at home, in the neighbourhood, or has gone off their usual paths, having the possibility of finding the patient in case she/he gets lost (9). 

– A physiotherapist may have a record of a patient’s gait pattern to further individualise treatment (10). 

– A social worker can be alerted if the home of a dementia patient does not meet the conditions for decent housing in the event of inadequate temperature, electricity problems, gas leaks, etc. (3).

These examples illustrate how assistive technologies play an essential role in TeNDER’s integrated care framework, which also takes great care to ensure the privacy of patients and to protect the data they generate to keep them safe. 


1. Sixtieth World Health Assembly. Health Technologies. WHA60.29. 2007; May: 2-3. Available from: 

2. World Health Organization (WHO). Global Strategy and Plan of Action. 2011. 

3. Piau A, Wild K, Mattek N, Kaye J. Current state of digital biomarker technologies for real-life, home-based monitoring of cognitive function for mild cognitive impairment to mild Alzheimer disease and implications for clinical care: Systematic review. Vol. 21, Journal of Medical Internet Research. Journal of Medical Internet Research; 2019. 

4. Huckvale K, Venkatesh S, Christensen H. Toward clinical digital phenotyping: a timely opportunity to consider purpose, quality, and safety. NPJ Digital Medicine. 2019 Dec;  2(1). 

5. Sue T. Expert patients: Sue Thomas explains why the government’s Expert Patient initiative will enable nurses to help patients move away from a disease focus towards independence and a better quality of life. Primary Health Care. 2001; 11(9): 20-1. 

6. Haslbeck J, Zanoni S, Hartung U, Klein M, Gabriel E, Eicher M, et al. Introducing the chronic disease self-management program in Switzerland and other German-speaking countries: Findings of a cross-border adaptation using a multiple-methods approach. BMC Health Service Res [Internet]. 2015; 15(1). Available from:

7. World Health Organization (WHO) Patient safety: Global action on patient safety. 72nd World Health Assembly: provisional agenda item 125. 2019. 

8. Teo JX, Davila S, Yang C, Hii AA, Pua CJ, Yap J, et al. Digital phenotyping by consumer wearables identifies sleep-associated markers of cardiovascular disease risk and biological aging. Commun Biol. 2019 Dec 1; 2(1). 

9. Kourtis LC, Regele OB, Wright JM, Jones GB. Digital biomarkers for Alzheimer’s disease: the mobile/wearable devices opportunity. [cited 2020 Feb 10]; Available from:

10. Vaidyam, A., Halamka, J. and Torous, J. (2019). „Actionable digital phenotyping: a framework for the delivery of just-in-time and longitudinal interventions in clinical healthcare,“ mHealth. AME Pub. mHealth. 2019 Aug; 5: 25–25. 

TeNDER project kicks off in Madrid

On 3-4 December 2019, the Polytechnic University of Madrid – TeNDER’s coordinating partner – hosted the project’s first meeting. Partners discussed Work Packages, task allocations, timelines, and key deliverables.

TeNDER is a multi-sectoral project funded by Horizon 2020, the EU Framework Programme for Research and Innovation. For the next three years, it will develop an integrated care model to manage multi-morbidity in patients with neurodegenerative diseases.

The consortium partners are: Universidad Politécnica de Madrid (Spain), Servicio Madrileño de Salud (Spain), Asociación Parkinson Madrid (Spain), Università degli Studi di Roma – ‘Tor Vergata’ Hospital (Italy), Schön Klinic Bad Aibling (Germany), Spominčica – Alzheimer Slovenia (Slovenia), Centre for Research and Technology Hellas (Greece), Ubiwhere (Portugal), DataWizard (Italy), Vrije Universiteit Brussel (Belgium), Maggioli Group (Italy), Elgoline Doo (Slovenia), and the European Hospital and Healthcare Federation (Belgium).

TeNDER’s user partners will conduct 5 large-scale pilots that will target patients who suffer Alzheimer’s and/or Parkinson’s along with cardiovascular diseases, diabetes, and/or other chronic illnesses.

In each pilot setting (i.e., in-hospital acute care, at home, and in day- and full-time nursing homes), patients will be monitored using sensors, cameras that capture movement, affective recognition technology, and wristbands that record basic vitals, etc.

Meanwhile, TeNDER’s technical, legal and ethical experts will ensure that all personal data is protected according the General Data Protection Regulation (GDPR), and that rigorous ethical standards are met in order to minimize the risk of unwanted impact on the patient or their family and friends.

The project aims to improve the quality of life of patients and those that surround them. First, by facilitating communication between social and health care professionals, and extending the autonomy of patients that can live independently. Second, by making TeNDER’s model for integrated care fit for widespread implementation, to benefit patients beyond project years.