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2024 Update of Lancet Commission on dementia strengthens case for addressing hearing loss

The 2024 update of the Lancet Commission on dementia, published on the 31st of July, has provided further support that addressing hearing loss in midlife can decrease the risk of dementia. This provides important additional support of the importance of addressing hearing loss early to improve cognitive health.

The report has completed “a new meta-analyses of the risk of hearing loss and depression for future dementia and reviewed and used the most recent literature on worldwide risk and prevalences of all risk factors to calculate new population attributable fractions for all risks.”

Reworking International data and adding two new modifiable risks they produced a new analysis of the potentially modifiable risks for dementia in mid life in which hearing loss is now 7%.

The also concluded on the basis of the new data and analysis that “The evidence that treating hearing loss decreases the risk of dementia is now stronger than when our previous Commission report was published. Use of hearing aids appears to be particularly effective in people with hearing loss and additional risk factors for dementia.”

Based on significant additional evidence the authors concluded that “The observational evidence of the benefits of hearing aids for dementia risk is increasing. Even if only the studies with long follow-up are considered, to reduce the chance of reverse causality, the evidence on hearing aids reducing dementia risk is consistent and supportive. Implementing the use of hearing aids, if effective in preventing dementia, would likely be cost saving.”

The full report can be accessed at https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)01296-0/fulltext

CIICA briefing on Why Hearing Matters for Health Ageing can be accessed here https://ciicanet.org/resources/ciica-and-eurociu-launch-new-resource-why-hearing-well-matters-for-healthy-ageing/

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Launch of Living Guidelines Version 3

Many of you were involved in the development of the Living Guidelines for CI for adults, ensuring that the user perspective was included. Now Version 3 of the Living Guidelines,  has now been published and can be found in detail at https://app.magicapp.org/#/guideline/7872

The summary of version 3 can be found here: https://files.magicapp.org/guideline/083090ad-f3c8-4be7-99a9-893087356ed3/files/Summary_of_the_Living_Guidelines_Version_3_0_r695768.pdf

The Chair of CIICA, Leo De Raeve, was Co Chair of the Task Force, and CIICA was closely involved in their development, with CI users commenting and influencing the content.

The aim of the project was to develop guidelines on good standards in the field of cochlear implantation for adults, so that each country can adapt these guidelines to its own needs in order to optimize cochlear implant care for adults. The Living Guidelines will be regularly updated according to new scientific knowledge and experiences and the new version is Version 3. 

CIICA’s summary guide to the Living Guidelines can be found at: https://ciicanet.org/resources/ciicas-summary-of-the-living-guidelines-for-adult-ci/

This provides a resource and information about its use for advocacy in your country. 

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CIICA AT HEAL: HEARING ACROSS THE LIFESPAN

CIICA, represented by Sue Archbold, Brian Lamb and Darja Pajk, shared their advocacy activities at the 2024 HEAL conference hosted by Professor Grandori. CIICA had a stand where their resources were shared and presented on Global Health Networks, their report, CI Services Matter, and Young Adults with CI Matter – and met lots of colleagues and friends.

Professor Grandori at the CIICA stand and Darja and Sue inspect the poster!

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WORLD HEARING DAY 2024: CHANGING MINDSETS

World Hearing Day 2024, had as its theme Changing Mindsets – so many global activities!

Eddie Mukaaya (Uganda) of CIICA led a CIICA Parents Group Conversation – Changing Mindsets,

How do you do it? with Ekaterine Tortladze, LIubov Wolowik and Leona Pejcharova. Participants from 16 countries joins the inspiring conversation – how to change mindsets about deafness in children and about CI? What tools do you use? There were amazing examples of inspiring and innovative changes that had been made.

Groups had changed society views, government policies, educational practice, audiology and CI services – and shared their examples.

Its a big goal and it would be nothing without the energy of parent organisations. See the summary in CIICA Conversations.

FEDERATION AICE, SPAIN, IN ACTION FOR WORLD HEARING DAY

Introducing the HEAR·T Initiative: Hearing Empowerment, Advancement, and Robotics in Technology

March 2, 2024, for our first Virtual Congress: “HEAR·T Initiative: Pioneering the Future of Hearing Healthcare” World Hearing Day 2024.

Our mission is to pioneer a person-centered approach that integrates cutting-edge technology, innovation, and optimized audiological care to empower individuals to achieve their best hearing and fullest communication potential. For the past six months, Regina Presley, Au.D., FAAA, CCC/A; Michal Luntz, MD; Gil Kaminski, MBA; Eliana Cristofari, M.D. PdD, and I, Jodi Michelle Cutler have examined global hearing health care needs. Across our disciplines, we are excited to see how research and technology can provide innovative approaches to care.

THE FIRST VIRTUAL CONGRESS ON WORLD HEARING DAY WAS TRULY GLOBAL… THANK YOU ALL!

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Young Adults with CI Matter: CIICA’s New Report to Share!

ON INTERNATIONAL COCHLEAR IMPLANT DAY AND CIICA’S THIRD BIRTHDAY

YOUNG ADULTS IMPLANTED AS CHILDREN AND NOW ADULTS SPEAK OUT

We are pleased to share our new report, Young Adults with CI Matter, looks at the data from our global survey from those implanted as children and now young adults. It adds the issues arising from their CIICA Conversations and the Global Advisory Group of Young People with CI to produce a unique comprehensive report from this pioneering group.  

Download the Full Report – Young Adults with CI Matter Full Report

Download the Briefing here – Young Adults with CI Matter Briefing

I am so used to it I can’t do anything without my CI.

These young adults are the first to grow up who are deaf, hearing with their implants. They are highly satisfied, but concerned about ongoing support and costs. When you are implanted at a young age, there is a long lifetime of funded CI services needed.  A responsibility for all!

Young Adults with CI – Hear their voices…

“I’ve always heard through a cochlear – so it’s all I know”

They report that 97% of these young people expressed overall satisfaction with their implants.

“I am super satisfied!“

Now I am 29 years old and had the same processor 20 years taking really good care of it. To replace is very expensive! 

However, they are concerned about the high cost of devices, accessories and repairs and ongoing costs for technology support throughout their lifetime. 10% have no spares. 

“Now I am 29 years old and had the same processor 20 years taking really good care of it. To replace is very expensive!” 

They want to broaden the current concepts of deafness including those with CI.
A young person from Uganda…

CI has surely modernised the concept of deafness. 

They propose the development of a new stakeholder group of young people to promote the benefits CI has brought and ensure the changes which could ensure lifelong hearing from CI, and full participation in society through their Agenda for Change. 

The Global Advisory Group of Young Adults with CI: Jana Beneito, Spain, Jehan Daboo, India, Jessica Hissam, USA, Qais Khan, UK, Holly Loach, UK, John Lui, Australia, Manuela Malheirossilva, Brazil, Elaine Mukaaya, Uganda, Ava Pearson, UK, Bowen Tang, Canada, Theo Valles, USA.

DO SHARE THE REPORT WITH YOUR MEMBERS AND COLLEAGUES AND FRIENDS. THANKS TO EVERYBODY WHO HELPED WITH DESIGN OF THE PROJECT AND WHO RESPONDED.
SPECIAL THANKS SO THE GLOBAL ADVISORY GROUP OF YOUNG PEOPLE WHO WILL LAUNCH THEIR AGENDA FOR CHANGE AT OUR CONFERENCE: CI ADVOCACY IN ACTION, BRUSSELS , MAY 2024. 

Please share the invitation with your members, colleagues and friends!

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CELEBRATING INTERNATIONAL CI DAY AND CIICA’S THIRD BIRTHDAY

United by a passion to hear…. this year’s message.

EURO-CIU began International CI Day in 2009 to commemorate the first CI on February 25, 1957 in France. Since 2009, this day has been celebrated all over the world, sponsored by EURO-CIU.

Throughout Europe there are more than 500,000 people who have received cochlear implants, 60% are adults and 40% are minors, at the time of implantation. Globally about one million people have received cochlear implants.

Young Adults with CI Matter – Hear their voices…

CIICA celebrated at the CI2024 Conference in Gran Canaria, Spain

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Cochlear Implants and Deafness: A Global Case Study to increase policy awareness and action on an under-resourced health issue.

We are delighted to share with you that a study of the development of CIICA (Cochlear Implant International Community of Action) as an international health network has been published by the International Journal of Audiology (IJA) at https://www.tandfonline.com/doi/full/10.1080/14992027.2023.2231634(Paywall). The paper places the development of CIICA in the context of other health networks and provides some lessons to be learned in how to establish health networks. It also reviews the research with users of CI and other stakeholders which led to CIICA’s establishment, develops some general learning about best practices in advocacy and provides evidence of the early impact of CIICA as a health network.

Many of you have taken part in either the research or our activities and we at CIICA are really grateful for your support, without which the establishment of this growing network in over 60 countries would not have taken place.

The IJA is an internationally respected journal and this will help spread the news of CIICA’s work and impact even more widely. 

We would of course like you to promote the paper via the public (paywall) link. With many thanks again for all your support for CIICA, and we look forward to our future developments

Patient advocates in this field are the best conveyors of messages around the impact and severity of not addressing hearing loss and the benefits of taking action. From a public health perspective messaging about access to communication and the right to be able to hear resonates well within a human rights framework and offers an important basis for network development and building coalitions between groups with different circumstances.

Lamb, B, Visiting Professor, University of Derby, UK (Corresponding Author).  brian.publicaffairs@gmail.com

Archbold S, CIICA, UK. sue.archbold@outlook.com

Zheng Yen Ng, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. zhengyen.ng@uq.net.au

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Quality standards for Rehabilitation in Children with CI

Leo De Raeve was one of the leading authors of a recent published article on “Quality Standard for Rehabilitation of Young Deaf Children Receiving Cochlear Implants”.

It is one of the outcomes of the European KA202 Erasmus+ project ‘VOICE’, Ref. No.: 2020-1-RO01-KA202-080059.
The article has been published recently in ‘Medicina’ as part of a Special Issue on ‘Current Trends in Otorhinolaryngology and Head and Neck Pathology’ and is available online:
Website: https://lnkd.in/djBSDVe4
PDF Version: https://lnkd.in/dVyJcxbD

You can also download the Quality Standards for rehabilitation of young deaf children receiving CI’s from the project website:https://lnkd.in/dBuri3qA . At this website you can also download a handbook for therapists, you can follow an e-training course on rehab and there is a lot of information available for parents.

It is essential that we think about the rehabilitation needs of young deaf children with CI.  You can also download the CIICA resource about Deaf Children with CI. 01027_CIICA CHILDRENS BRIEFING_4PP

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CIICA AT ESPCI 2023

CIICA was delighted to be mentioned in the opening speech by Prof Emmanuel Mylanus at the European Symposium on Paediatric Cochlear Implantation in Rotterdam, where he thanked Sue Archbold for her inspiration and support. The conference had a great atmosphere- exchanging inspiration after so long!

We met many friends and members at our stand – and attracted more!  Many visitors came to learn about our advocacy services -and take our resources…

Stuart McNaughton, Rihab Alikalil, Brian Lamb and Sue  led a stimulating session on Sustainable CI Services – why and how do we deliver them? Manu from Brazil shared her challenges in everyday life, and Qais shared what he would like from his CI service – accessibility. Interacting with the delegates was easy with the Chatbox…

Qais talks about what he wants from his CI services
Manu talks about the biggest challenges as a deaf person

Five young people with CI shared their experiences in an inspiring session, led by Rob Beenders, himself a CI user. A young doctor could hear a mother’s heartbeat with a special stethoscope with blue tooth. These young people had a great time socialising too – at the network event! 

Brian Lamb shared CIICA’s Spend2Save work in looking at sustainability for CI services –

managing hearing loss well actually saves society money as well as changing lives.

Our adult survey includes responses from young adults, implanted as a child, and Sue shared these too – including the comment:  

I’ve always heard through a cochlear, it’s all I know.

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Young deaf people with CI meet up in London to share advocacy stories

The Malala Foundation and Cochlear Foundation brought together five young people with CI from across the globe to London to  share their advocacy stories and inspire each other to further action. These young people represented 163 others who had responded to Achieve Anything programme and are examples of the first group of young deaf people growing up with CI. They were inspired by meeting Malala herself and Shelly Chadha of WHO who dialled in from Geneva provided further inspiration. 

Leo De Raeve, Chair of CIICA: This group of inspiring young deaf people demonstrates what can be achieved with early intervention, education, and the right, cost-effective, support.

Mahrukh Zaidi, a young doctor from India:  This early detection and subsequent support I received helped me thrive at school, providing the opportunity to study medicine.

Qais Khan then led discussion to begin a CIICA consultation about what these young people need to secure their future to be independent and succeed. More to come!

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