CP-AGEING project - Abstract Cerebral Palsy (CP) is a motor disorder accompanied by sensory, communication, behavioural, cognitive and perceptual disturbances, affecting movement and posture in 2,5 per 1.000 births in EU (≈1.000.000 persons). Medical advances have increased the life expectancy for Adults with CP (ACP), raising questions about how to best manage the effects of their ageing. Between 20 and 40 years old, most ACP experience some form of premature ageing ( https://urldefense.com/v3/__http://www.cerebralpalsyguide.com/community/cerebral-palsy-in-adults__;!!D9dNQwwGXtA!SqO4fnfaFwU9VHzocV-pJ60_eeW-uTZdtWkOtsrAOJfLoLnMH_hGeAx113vLvnDPBo4V7NPAaAgPQGvlzUeTrl1-86XhGQ$). They manifest a higher rate of chronic health conditions and decline in strength and functional reserve, deterioration in physical activity, increased risk of falls and musculoskeletal complications, changes in swallowing ability, dental health problems, side effects due to medications or surgeries and difficulty walking or muscle stiffness (25% of ACP will lose their walking ability). There are several strategies for enhancing the well-ageing of ACP, which can be divided as follows: • Preventing and dealing with physical decline, including appropriate seating and postures, keeping and adapting physical activity, stretching exercises, physiotherapy, specialized nutrition, dental care, avoiding excessive weight gain, medicine management, etc. • Preventing and dealing with cognitive decline, through cognitive stimulation and specialized activities focusing on the dimensions affected by dementia (calculus, language, orientation, etc…). For instance, therapies based on "serious games" are showing good results when they are applied to persons with mild and moderate symptoms of cognitive decline (Robert, P., et al. 2014). • Keeping and/or strengthening autonomy and social inclusion, including the adaptation to the ageing of the supports (relatives, friends, others…). • Use of Assistive Technologies (ATs) for dealing with physical, intellectual and social barriers, according to the WHO World Report on Disability (2011). CP-AGEING was launched for increasing the competences (attitudes, knowledge, skills) of ACP and their supports on how to enhance their well-ageing. The following specific objectives were achieved within CP-AGEING: • To raise awareness/motivation about the relevance of preventing and dealing with the ageing effects while keeping the QoL. • To create and transfer guidelines and tools on how to prevent and deal with physical and cognitive decline and for keeping and/or strengthening autonomy and social inclusion, including the selection and exploitation of ATs. • To promote the implementation of the innovative strategies in institutions but also at home, promoting self-care and autonomy. • To focus in the ageing of supports and its impact in the support itself, grieving process or legal and economic issues among others. • To strengthen the cooperation between institutions, ACP and supports. The next main results have been produced: • CO-DESIGNED SYLLABUS (I.O.1). A syllabus for improving the well-ageing of ACP was co-designed with the direct participation of 80 end users (ACP and supports) coming from Spain, Slovenia, Greece and Portugal. • TRAINING PACKAGE FOR PREVENTING AND DEALING WITH PHYSICAL AGEING OF ACP (I.O.2), including training materials and experiential training activities, covering the next 4 main Topic 1. Physiotherapy. Postures and sitting 2. Nutrition and swallowing disorders 3. Medicines management 4. Adapted sports and physical activities • TRAINING PACKAGE FOR PREVENTING AND DEALING WITH THE COGNITIVE DECLINE OF ACP (I.O.3), including training materials and experiential training activities, covering the next 4 main topics: 1. Memory and disorientation 2. Language/communication and perception/gnosis 3. Attention and calculus 4. Coordination and fine motor skills. • TRAINING PACKAGE FOR KEEPING THE AUTONOMY AND SOCIAL INCLUSION OF ACP ALONG THEIR AGEING PROCESS (I.O.4), including training materials and experiential training activities, covering the next 3 main topics: 1. Autonomy and independence 2. Social relationships 3. Participation and engagement All training packages include a section devoted to the presentation of existing Assistive Technologies (ATs). • ACCESIBLE E-TRAINING PLATFORM (I.O.5) in five different languages (English, Spanish, Slovenian, Greek and Portuguese) was designed including training materials, training activities, serious games, tools for enhancing the e-learning experience, etc. This platform provides several features that makes it adaptable for ACP (and people with other disabilities) to navigate in. • VALIDATION PILOT ACTIONS was implemented with a total of 127 ACP and supports from Spain (N=30), Portugal (N=32), Slovenia (N=34) and Greece (N=31), where all the training packages and the accessible e-training platform was put into practice and tested. • 4 NATIONAL MULTIPLIER EVENTS were organized with 165 stakeholders per country (Spain: 28, Greece: 60, Portugal: 36 & Slovenia: 41), where all project results were presented and disseminated.
CP-AGEING was launched to increase the competences (attitudes, knowledge, skills) of Adults with CP and their supports and caregivers on how to enhance their Well-Ageing. To do so, the project also wanted to achieve the following specific objectives: • To aware/motivate about the relevance of preventing and dealing with the ageing effects. • To create and transfer guidelines and tools on how to prevent and deal with the physical and cognitive decline and for keeping and/or strengthening autonomy and social inclusion. • To promote the implementation of the innovative strategies in institutions but also at home, promoting self-care and autonomy. • To focus on the ageing of supports and its impact in the support itself, grieving process or legal and economic issues among others • To strengthen the cooperation between institutions, ACP and Supports
This project was applied because Cerebral Palsy (CP) is a motor disorder accompanied by sensory, communication, behavioral, cognitive and perceptual disturbances which affects movement and posture in 2,5 per 1.000 births in EU (≈1.000.000 persons). Moreover, most Adults with Cerebral Palsy (ACP) experience premature ageing. The premature ageing process is shown as a higher rate of chronic health conditions and decline in strength and functional reserve, deterioration in physical activity, increased risk of falls and musculoskeletal complications, changes in swallowing ability, dental health problems, side effects due to medications or surgeries and difficulty walking or stiff muscles. Given this fact, the CP-Ageing project pretended to provide a solution by training both ACP and their caregivers and professionals in strategies to prevent the aforementioned issues associated to their ageing process in three key areas: • Preventing and dealing with the physical decline • Preventing and dealing with the cognitive decline • Keeping and/or strengthening autonomy and social inclusion