Madrid Pilot: 
 Association Parkinson Madrid (APM)

Description of the Pilot site

Association Parkinson Madrid (APM) is a non-profit organization whose main mission is to provide attention and care to those individuals who are diagnosed with Parkinson's disease and their families.

Association Parkinson Madrid (APM) is a non-profit organization whose main mission is to provide attention and care to those individuals who are diagnosed with Parkinson's disease and their families.

The Parkinson Association of Madrid currently has 2,000 members, 130 volunteers and 58 workers. The association, at present, is the main representor of those who are affected by Parkinson in Madrid and is the largest association that provides major services at the national level.

One of the objectives of the Association is to work in collaboration with the government and political groups to promote political policies that improves peoples’ quality of life.

Another objective of the Association is to raise awareness and educate the general population about Parkinson’s disease, as well as the affected people and their families. For this reason, dissemination campaigns, courses and training conferences are being held.

Collaboration and active participation in the area of research is also very important. The Association puts the research community available at all the means at its disposal: Expert and experienced technical knowledge, its facilities, and the promotion of its members to voluntarily participate in the different research projects of investigations. This has created alliances and collaboration with technological businesses, institutions of investigations, universities, etc.

It’s most extensive activity is related to the direct attention to the diagnosed people and their families as it provides health and social services to its members. Its services covers not only the social assessment thanks to its team of social workers (e.g. social and family aspects; technical aids, disability, dependence benefits, incapacity for work..) but it covers the healthcare field with a wide variety of therapies (like physiotherapy, speech therapy, cognitive stimulation, music therapy, occupational therapy and psychology) and activities (training, tutoring, volunteering, leisure, sports, solidarity fund for people affected with insufficient resources..). The therapies can be carried out at the two rehabilitation centres of the association or at the home of the affected person. The large team of therapists is displaced anywhere in the Autonomous Community of Madrid, where the people who require it can attend from 9 in the morning until the afternoon to receive all the attentions that demand the disease. In 2020 year we also started with tele-rehabilitation sessions through our Website and App.

More than 35,000 therapeutic sessions are held annually.

The Association follows a personalized and person-centred attention model, where each user conducts an initial interview; social workers orients him/her on the resources at their disposal and design a personalized attention plan best adapted to their needs.

Target group - Parkinsons

  • According to EPDA, there are 1.2 million people affected by Parkinson Disease in Europe. The estimated annual European cost of Parkinson’s disease is €13.9billion, representing 11.600€ per patient. Studies show disparity in the final calculation of direct, indirect and intangible costs1.
  • The incidence and prevalence rates of Parkinson's disease in Spain are similar to those in the rest of Europe2. According to current population estimations, there are at least 300.000 people with Parkinson's disease and one new case per 10.000 habitants per year in Spain3.
  • This has a major impact on the person’s quality of life and nearly doubles patient mortality.
  • In addition, the disease generates sizeable costs for Spain that may exceed 17.000 € per year per person; costs will rise due to the ageing of the population and the new therapies employed.

PD patients have greatest needs as their motor complications develop slowly during disease progression and symptoms may vary from day to day causing patient discomfort and disability4.

Needs

  • Quality of life to be as good as possible during the evolution of the disease.
  • Accessibility. Accessibility problems can be physical or communication problems. For example, a person cannot optimally access the neurologist's office either because the hospital is not architecturally adapted or the person is not wheelchair accessible, or because it is extremely complicated to move around the facility (even if not in a wheelchair). But the consultation may also be inaccessible if you have communication problems, as you will not be able to express yourself and your symptoms.
  • Empowerment of people. Co-responsibility, making their own decisions about their own health with the necessary advice and information from professionals. This implies a change in public-private organisational models and a cultural change in which people take responsibility for their health and care (illness). There has been a tendency to think and act in such a way that the only person responsible for health is the doctor.
  • Information and training: numerous studies indicate that having adequate information, knowledge and training are essential to better cope with and manage the disease.
  • Knowledge of and access to available social resources. Information on administrative and legal procedures in the last stages of the disease.

Challenges

  • To minimise the effect of the symptoms (physical, language, psychological) and to achieve a favourable family and social support situation.
  • To search for alternatives and support techniques (for communicating or moving around, for example) in order to minimise the effects of the symptoms and carry out treatment of the different symptoms to maintain functionality (being autonomous) for a longer period of time.
  • Tools or methods that encourage adherence to treatment, both therapeutic and pharmacological.
  • Objective methods of establishing evolution of symptoms so that health care professionals can treat them better.
  • Personalised therapies, adapted to the tastes, preferences and conditions of the person.
  • Special attention to serious symptoms, especially in the area of prevention or to solve the problems that arise (e.g. Falls)
  • Tools that facilitate communication with professionals from a distance. Tools that allow remote therapies (always with supervision of the professional). Tools that allow the person to communicate with their environment, not only with their family, but also with the rest of society, businesses, public administrations (communication assistants).

[1] Peñas Domingo, Eshter. 2015. El Libro Blanco del Párkinson en España. Aproximación, análisis y propuesta de futuro. NIPO: 689-15-010-0. https://www.esparkinson.es/wp-content/uploads/2017/10/libro_blanco.pdf

[2] https://ec.europa.eu/research/index.cfm?pg=events&eventcode=70814C79-B44D-8FC7-CBC94FD9083A9F41

[3] According to "The Brain Foundation Report on the Social Impact of Parkinson's Disease in Spain" (2016) https://doi.org/10.1016/j.nrleng.2013.04.008

[4] Ferreira, Joaquim; Lopo Vitorino, Marli. 2019 The Parkinson’s disease Caregiver’s Handbook. CNS – Campus Neurológico. ISBN: 978-989-20-9910-1

Target group - Caregivers
  • In 2016, the burden of providing these services was most often assumed by women aged 55-64 years, as more than one tenth (12.8 %) of women in this age group provided informal homecare services to both someone in the same household and to someone in a different household. It is interesting to note that the share of men who uniquely provided homecare services to someone in the same household rose as a function of age, with a peak of 6.1 % for men aged 75 years or more.
  • Spain has the highest percentage of people providing at least 20 hours of informal homecare services (for each of the age groups); the highest proportion was recorded for people aged 75 years of more (9.8 %).
  • In Spain there are 28 million full-time unpaid care jobs in the broadest sense, which is 30% more than the entire labour market. As in other EU countries, the State alone cannot bear the cost of care; affordable private services are needed and volunteerism, especially for older people, should be encouraged as for the public sector, to meet all the demand for care, Spanish people would have to be pay 70 percent income tax5.
  • In public health emergencies, like Covid-19, we are seeing that informal home care providers are a key human resource in improving community health care capacity, especially in regions with an aging population and areas with suboptimal health care systems.

Needs

Caring for people with Parkinson's disease requires a lot of effort and dedication. The main caregivers at some point in the evolution of the disease (more or less prolonged), will suffer in greater or lesser intensity the following symptoms:

  • Health problems and physical pains (help in carrying out the basic tasks of daily life).
  • Psychological problems: depression, sadness...
  • Social isolation (due to their time and effort to care)

Generally speaking the Mediterranean culture often develops a series of erroneous thoughts about care: high degree of guilt (for thinking that they do not do everything right, for thinking that they do not dedicate enough time or effort to it...), care as the sole responsibility of the caregiver (not shared), with great difficulty in asking for help.

Challenges

  • Training and learning about more efficient forms of care.
  • Training on the disease and its care.
  • Sense of security, that your family member is in a safe environment.
  • Knowledge of available social resources.
  • Social and psychological support, spaces in which to feel accompanied and understood.
  • To be able to consult doubts with professionals.
  • Support for the final outcome in the case of family members of people in advanced stages and a legal and administrative management of this stage.
  • Spaces away from the illness where they can enjoy a break and sometime of their own. Organisational structures that promote these spaces.

[5] https://www.fbbva.es/noticias/maria-angeles-duran-estado-solo-no-puede-cubrir-coste-del-cuidado-necesarios-servicios-privados-asequibles-alentar-voluntariado/

Target group - Health and care professionals

  • In the Beveridge models, the family physician plays a central role in the diagnosis and treatment of people.

Needs

  • Health care professionals (e.g. neurologists, physiotherapists, psychologists, speech therapists, social workers) are concerned about having the persons motoric stabilized to reduce fluctuations, at all times or as long as possible, but lack of information on the person’s actual motor condition means they cannot adjust treatments quickly6.
  • Many of the decisions made by health professionals depend on what is reported, not just what is observed during the appointment. This information concerns what happens during the day, physical and psychological status and can be communicated by the person themselves, family members or caregivers. To facilitate and improve the collection of this information by physician or other health professionals (e.g. nurse, physiotherapist), one possible solution is to take written notes, or a diary to the clinical office. But this strategy doesn’t ensure that everything considered important is communicated to the doctor or done in a precise manner. Consultations usually take place every 4-6 months and last about 20 minutes. There are also other difficulties: people may not fill out the diary as often as necessary, the information provided can be subjective, and may not have enough time to explain everything they have experienced. For all these reasons, the real information that social and health professionals’ reaches may not be representative of the person’s disease evolution.

Challenges

  • Methods, modes or tools that aim to motivate the person and promote observance to treatment as Parkinson's disease is a long condition.
  • Development of new therapies to rehabilitate different aspects of the disease.
  • Development of new methodologies and techniques to improve or vary existing therapies.
  • Communication and monitoring tools for those affected who have been displaced or who, due to the evolution of the disease, are unable to attend the centres.
  • Easy-to-use management and work tools that allow them to save management time.
  • Methods and tools for objective measurement in the assessment of those affected, which allow the subjectivity of the human eye to be eliminated to a certain extent.
  • Methods and places of communication with other professionals in the sector that allow them to learn and contrast work methodology.
  • Continuous training and information selection tools that allow them to keep up to date with the latest research and therapies being tested in realities other than their own with very little effort.
  • Secure, fast and effective communication channels that allow professionals to communicate with each other and have a more global knowledge of the person.
  • Tools that allow therapies remotely. While they are remote - they are under the supervision of a therapist.
  • Tools to adjust therapies to the person’s conditions, tastes and preferences.
  • Measurements, studies and results of the effects of therapies.
  • Implementation of management models and organisational culture that allows for the empowerment of the person to make decisions
  • Training and emotional support to help professionals working with people with neurodegenerative diseases.
  • Develop research in the field of rehabilitation or psychology .

[6] Wensing, M., van der Eijk, M., Koetsenruijter, J., Bloem, B. R., Munneke, M., & Faber, M. (2011). Connectedness of healthcare professionals involved in the treatment of patients with Parkinson's disease: a social networks study. Implementation science : IS, 6, 67. https://doi.org/10.1186/1748-5908-6-67

Participants
  • User requirements study: 16 citizens with Parkinson’s; 18 carers; 5 health and care professionals; 1 decision maker; 1 media actor.
  • Pilot 1: 60 citizens with Parkinsons’; 9 health and care professionals; 6 carers.
  • Pilot 2: 75 citizens with Parkinsons’; 11 health and care professionals; 8 carers.
  • Pilot 3: 226 citizens with Parkinsons’, cardiovascular disease, arthrosis or diabetes; 34 health and care professionals; 22 carers.
Results already achieved

WP2
Task 2.2: User needs and requirements / Task 2.5: Identification of cultural and societal implications in the care environment

  • Online surveys: 14 Parkinsons’ disease patients + 17 Parkinsons’ disease carers
    Interviews: 2 Parkinsons’ disease patients + 1 Parkinsons’ disease carer + 1 decision maker +
  • 1 media actor
  • Workshops: 5 health and care professionals
    Total = 41 participants

Understanding each person’s health limitations, living conditions, family structure, income, ability to use technology and the different cultural expectations regarding health care as this relates to the concept of integrated care that it’s shaped by the perspectives and expectations of various users in the health system.

WP6
Pilot 1 – phase 1 (focused on feasibility of the technology, including installation procedures and enrolment phase)

  • 10 health and care professionals: First user feedback on Fitbit usage
  • 5 people with Parkinsons’ disease: First real data collection with Fitbit + smartphones + cameras while people performing their regular therapeutic sessions in the rehabilitation scenario
  • 1 health and care professional: First simulated data collection (freezing + festination + loss of balance + falls + bradykinesia + wandering symptoms)
  • Not home implementation yet due to COVID-19 restrictions
    Total = 16 participants

Next steps:

WP6 – Pilot 1 – phase 2 (focused on usability, as evaluated by the user groups, including user’s preferences of different components of the PROCare4Life solution). We will involve 60 services users; 9 professionals and 6 carers in rehabilitation and home care scenarios.