The Down Syndrome Association of Castellón addresses the aging of people with Down syndrome through NeuronUP..
1.1 Who are we?
This year marks 25 years since, in 1995, a group of parents decided to unite their desire to respond to the needs of people with Down syndrome and / or intellectual disabilities that, at that time, were not covered. From that moment on and throughout its 25-year history, the entity has pursued the following objectives:
- To promote cognitive, social and affective development that allows people with Down’s syndrome and/or intellectual disability to achieve their full personal fulfillment.
- To make the rest of society aware of their reality, thus achieving their full inclusion.
- Defend educational inclusion, because not only do people with Down syndrome and/or intellectual disability benefit from it, but so do all their companions.
- Activate their inclusion in the workplace in order to achieve a positive and useful image of oneself and knowledge and respect for other people.
To promote medical care, claiming their rights as a person.
1.2 Services and Program
The Association has services and programs that contribute to the improvement of the quality of life of the people we serve, such as: attention to families, psycho-pedagogical office, workshop of adaptive skills and effective communication, school for siblings, psychological attention, summer school, volunteer program, leisure and free time, aging program, health program and cognitive stimulation.
2. We address the aging of people with Down syndrome
In recent decades we have seen that, thanks to improvements in various fields, the life expectancy of people with Down syndrome and/or intellectual disability has increased. This longevity is accompanied by an improvement in their quality of life. We know that getting older implies a series of changes.
- Biological: the brain atrophies and neurons begin to be lost, changes occur at the level of the frontal lobe, etc.
- Psychological: benign forgetfulness, obsessive behaviour, irritability, mental rigidity, etc.
- Social: friendships are reduced, family support is lost, the level of autonomy is reduced, the need for support in carrying out daily life activities increases, etc. This stage appears at a later age in the general population, however, in people with Down syndrome and/or intellectual disability this process occurs earlier and more quickly. We must point out that, due to the very specific genetic connection that Down syndrome and Alzheimer’s disease share, there is a high prevalence of the latter developing.
The cognitive deterioration and the progression of the disease will depend on the personal characteristics of each person. For this reason, it is vitally important to establish and maintain comprehensive care programs at this stage based on two fundamental aspects: aging with dignity and preparation for the development, in an appropriate manner, of the aging processes (physical, psychological and social process) both in people with Down syndrome and/or intellectual disability as well as their families and caregivers, who need a support network to turn to at important times.
2.1 What is the Aging Project
The aging project has been developed in our entity since 2016 when it was detected the need to respond to people with Down syndrome and / or intellectual disability in adulthood. Since then, two people have been in charge of implementing the project: a social worker and a psychologist.
From the program, we cover those people who are already within the age range from which the first signs and symptoms of aging may appear, as well as those people who, despite not being within that range, want to prevent and retain the appearance of these signs and symptoms.
Objectives of the project
It follows that the objectives underpinning the ageing program for people with Down’s syndrome are:
- To promote active aging by addressing areas related to: health status and medical needs, sports activity, affective-sexual needs, leisure and free time, and stimulation of cognitive abilities.
- To increase the independence and autonomy of people with Down’s syndrome and/or intellectual disability that will result in quality aging.
- To detect any sign and/or symptom that could be considered the cause of a possible cognitive impairment based on the evaluation with screening tests for subsequent referral to the corresponding service.
- To carry out a follow-up of all the beneficiaries of the program.
- Prepare the families and caregivers of adults with Down syndrome and/or intellectual disability for this stage.
- To offer orientation, attention and specific support to people with Down syndrome and/or intellectual disability at all stages of the aging process, as well as to their families and caregivers.
2.2 Agents involved
Close and joint collaboration is needed between those involved in improving the individual needs of people with Down syndrome and/or intellectual disability. We consider the family and support networks to be outstanding; professionals who work with them; and synergies of collaboration with other entities, universities and health services.
Last November, the Down Syndrome Association of Castellón received the first prize in the category “Professionals in the sector: Best practice in caring for people” awarded by DomusVi. This recognition does nothing but promote the work of professionals to ensure that people with Down syndrome and/or intellectual disability, as well as their environment, have a program that ensures good practices of an entity that fights for quality aging in all dimensions.
3. NeuronUP: a support tool
One of the fundamental pillars within the Aging Program is that people with Down’s syndrome and/or intellectual disability are active in all senses, and one of them being cognitive. Feeling active slows down cognitive decline and allows us to be more autonomous and independent in our daily lives. To favor these premises is what we advocate for the professional team that works in Down Syndrome in Castellón.
Several years ago we decided to incorporate NeuronUP as a support tool for the person who gives the sessions that stimulate cognitive abilities. These sessions are carried out in groups and are adapted to individual capacities. Through games, dynamics, paper cards, use of daily life material, use of the NeuronUP platform, etc., among others, we aim to maintain and/or improve the cognitive functioning of the people who attend the sessions.
One of the advantages offered by NeuronUP, is the personalization of the sessions according to the needs of the particular person and the feedback on their execution. The constant updating of the activities and the training offered were other advantages that made the use of this platform the ideal support tool for the professional in charge of planning the sessions.
At the Down’s Syndrome Association of Castellón, we work to make our motto: “I age with quality of life: what about you?” a reality for all the people who come to our organization every day. If you want to know a little more about our program, about us and how we work, do not hesitate to visit www.downcastellon.com. We will be delighted to receive proposals that affect the well-being of people with Down’s syndrome and/or intellectual disability and their environment.
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