The fight for a long and healthy life can start with the DS-AGEING training program. Many studies, starting in recent years try to solve the arithmetic of well ageing in individuals with Down syndrome especially that some of them reach age over 70. Physical health skills training and healthy ageing strategy should ideally start in childhood and take a lifelong perspective. Babies born today with Down syndrome and their families can expect a life with many possibilities and opportunities that have been developed through such initiatives and knowledge transfer projects and completed by joint teams of beneficiaries, family, therapists and future therapists. Their fight for long and healthy life can start with a training program like DS-AGEING project proposes. This project aims to exceed the lack of an integrated and inclusive approach that takes into account the support that people with Down syndrome (family and community members) need.
Ageing is the subject of concern for many families of adolescents and young people with Down syndrome (DS). The families and therapists that work with them know their needs and changes that appear after the age of 30-35 years (when the signs of getting old start to emerge), also the new problems that they struggle to exceed as they get older. The fight of a person with Down syndrome is also a fight of family and therapists. The scientific articles discuss about the changes and problems that emerge with aging. With the improvements of care and health treatments, today people with Down syndrome live until the age of 60-70, even 80 years old, a reality that was not possible decades ago.
Care of adults with Down syndrome is a relatively new territory with little evidence (Jensen K.M. et al. 2014) due to fact that studies undergo on small trials size population. Other particularity mentioned by van Allen et al. (1999) being the fact that early disease are frequently missed because of limited communicative skills. For this matter, regarding to Jensen K.M. et al. (2014), the care is recommended to be based mostly on prophylactic measures. And by actions that come under the terminology of physical health many of diseases can be delayed, especially for the adults with Down syndrome.
Ageing process in people with Down syndrome respects to normal human ageing pattern being similar but is an accelerated ageing process. It means that they experience certain conditions and physical features that are common to typically aging adults at an earlier age than the general population. Premature aging in DS produces patterns of comorbidities similar to those found in the elderly patient. (Carfi A. et al. 2014) Also, in order to prevent condition in adults and elderly, Smith D.S. (2001) consider that persons with Down syndrome have the same basic health care needs as typically developed people, including health screening and prevention. The concept of "well-aging" in adults with Down syndrome is not yet fully understood, has multiple aspects and variables (sometimes difficult to manage) and therefore prognosis, prophylactic intervention and preparation for this process can be difficult for both the family and the therapists. All those problems should have answers for the families and therapists. People with Down syndrome need approaches that value all their resources and maintain their functionality, to help them to be active and well-ageing.
Partners from 7 entities in Europe: POLIBIENESTAR (University of Valencia-Spain); ASINDOWN (Spain); APPT21 (Portugal); ALDO-CET (Romania); SPOMINCICA ALZHIMER (Slovenia); DOWNOV SINDROM (Slovenia); AUTH (Greece) collaborate in the DS-AGEING Project - Training Program for promoting Active Ageing of people with Down Syndrome (Ref.: 2018-1-ES01-KA204-050733). DS-AGEING defines and applies a model of approach or training to slow down and prevent the effects of aging. The project work team consists of psychologists, doctors, therapists, volunteer, families and especially adults with Down syndrome.
The principle of the project is that by providing to the child and young person with Down syndrome an early adapted training to the known needs and also for the preparation for the predictable needs that emerge with ageing, in a context of equal opportunities, with emphasis on personal autonomy and an active life, the results can be the base of an optimal health in adults with Down syndrome. The idea of this DS-AGEING project was to create materials adapted to overcome: lack of adapted methodologies and tools adapted to the abilities of people with Down syndrome, including digital technological tools and resources (e-learning and e-training), for the implementation of recommended actions, including cognitive stimulation.
The transfer of knowledge and methods towards people with Down syndrome and specialists working with them is delivered in an accessible way through the e-learning and e-training platform that can be also considered a data base or documents library. This project was based on an adaptation and a holistic approach to the process of "aging in optimal health" (as a combination of the Active Aging Model and the Quality of Life Model for People with Disabilities) in adults with Down syndrome. Adults with Down syndrome, along with their families and caregivers, need information and education that can counteract the classic effects of aging so that they can enjoy as many years of life and as few health problems as possible.
The training program proposed within the DS-AGEING project is developed and organized as an important database for trainers, families and persons with Down syndrome. The goal for the materials (organized in sessions, at least 6 for one proposed dimension) for maintaining activities with prophylactic effects to improve the status and life style to embrace the well-aging process and maintain the health in adults and elderly with Down syndrome. An active aging model for people with Down syndrome should consider at least the following aspects: prevention and slowing of premature cognitive and physical decline, maintaining permanent activity, at the level achieved during childhood and as a young person, while they are adapted to the age. It is also important to maintain and/or promote the social inclusion into the local community, to encourage interpersonal relationships and connections with related groups. For the adult living in the family, legal and economic protection and preparation for the lack of lifelong support from parents or guardians are important topics that are covered by this project.
The e-training and e-learning activities proposed in the project, with a very wide addressability are grouped in three parts: improving/maintaining cognitive functions, overcoming difficult events that may exist in adult life and physical health. The activities supposed to be develop in three ways: face-to-face, practical and e-training. Regarding the cognitive dimension, separate training activities are proposed for the development of attention, memory, executive functions, senses, orientation, praxis, psychomotor skills, computational skills, language and communication competences. In the next dimension, which aims to overcome difficult events, the proposed activities aim to help people with Down syndrome to understand and react appropriately to situations of daily life and overcome transitions such as grief, emotions or moving in a new house for well-being and socialization and social participation. Regarding the final dimension it includes training activities that increase: healthy habits (diet, exercise and sports, good sleep and rest) and postural control aiming to a better physical health. Within the project, a training manual was developed for trainers and people interested in working with adults with Down syndrome, as well as a specific description of each training activity within each dimension (including the general objective, specific objectives, participants, duration, tools and materials needed, justification and nature of the activity. All the materials developed in this project are available in the e-training and e-learning platform, with materials for therapists and parents and people with Down syndrome, which can be accessed on the project page www.dsageing.eu.
DS-AGEING is a project funded by the European Commission within the Erasmus+2018 Programme, Key Action 2 – Strategic Partnerships for Adult Education.
PHD Mihaela Zavaleanu
• Carfì, A., Antocicco, M., Brandi, V., et al. (2014). Characteristics of adults with Down syndrome: prevalence of age-related conditions. Frontiers in medicine, 1, 51. https://doi.org/10.3389/fmed.2014.00051
• Jensen K.M., Bulova P.D, (2014) Managing the care of adults with Down’s syndrome, BMJ; 349:g5596 doi: 10.1136/bmj.g5596
• Smith D.S. Health Care Management of Adults with Down Syndrome, Am Fam Physician. 2001 Sep 15;64(6):1031-1039. Retrieved from https://www.aafp.org/afp/2001/0915/p1031.html
• Van Allen, M.I., Fung, J. and Jurenka, S.B. (1999), Health care concerns and guidelines for adults with Down syndrome. Am. J. Med. Genet., 89: 100-110. doi:10.1002/(SICI)1096-8628(19990625)89:23.0.CO;