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Launch IF Report on Ageing with Spina Bifida and Hydrocephalus

1 October 2020

On October 1, the United Nations International Day of Older Persons, IF launches its Report “Ageing with Spina Bifida and Hydrocephalus – A descriptive analysis” to highlight the rights and needs of adults with spina bifida and hydrocephalus (SBH) in Europe. The report has been made possible through funding received through the European Commission. While there is a growing number of older people living with SBH, we know very little about ageing with SBH and its impact on people’s health and well-being.

Therefore, an IF Working Group on Ageing with SBH was established in 2019, consisting of representatives of European IF Member organisations, to explore ways to improve our understanding of the lived experience of older people with SBH.
The members of the Working Group developed a survey, which was made available in 12 different European languages and shared widely by IF and its Members through various communication channels.
The survey questions were answered by 650 respondents, coming from 26 countries across Europe. The wealth of information that they provided was analysed in-depth this year.

The data captured through the online survey enabled us to understand the way physical, emotional, social and environmental changes impact on people with SBH who are transitioning to or who are adjusting to being an older person.
Given the prominence of mental health issues in the data and the fact that the difficulties associated with ageing with SBH may increase the pressure on mental health, there may be a specific need for emotional support or counselling to be part of a holistic provision of care over a lifetime.

By sharing the experiences of people ageing with SBH in Europe with regard to health, housing, mobility, employment, government support, and participation in social life, IF aims to raise awareness at international level on the often neglected topic of ageing with these lifelong disabilities.

The report includes a set of recommendations to work towards preventing or minimising the ill effects of ageing and to help improve the quality of life of people ageing with SBH.
It expands on IF’s previous work aimed at highlighting the rights and needs of adults with spina bifida and hydrocephalus (SBH) in Europe, started in 2012. The publication also ties in with the start of the Decade of Healthy Ageing (2020-2030), endorsed by the 73rd World Health Assembly of the World Health Organization in August this year.

Download the IF Report “Ageing with Spina Bifida and Hydrocephalus – A descriptive analysis”