Dementia: Moving FORWARD TOGETHER

Logo CEAFA completoToday’s guest blog is by Jesus Rodrigo, Executive Director of CEAFA (Spanish Confederation of Associations of Relatives of People with Alzheimer’s and other Dementias).

CEAFA, the Spanish Confederation of Associations of Relatives of People with Alzheimer's and other Dementias,  was created 25 years ago as a result of a merger of several associations of people who were dealing with a completely unknown disease. A condition that neither the families, doctors nor the Government was prepared to name.

From that time until today, the families of people with Alzheimer's Disease have come a long way in looking for the answers that no one gave them.  Gradually, CEAFA approached other key players in the Alzheimer’s arena (physicians, researchers, industry, psychologists, social workers, etc.) to secure support for a multidisciplinary approach to the disease. This approach would seek to address the therapeutic gaps and comprehensive care that the management of this disease requires. 

During the past 25 years, more than 300 Associations of Families have come together under the CEAFA umbrella. CEAFA is a movement that works not only to improve the quality of life of all those living with Alzheimer’s, but also to make it a top social and healthcare priority at an institutional level.

With this goal in mind, CEAFA is committed to establishing positive synergies with stakeholders who share this vision. Despite all the knowledge that CEAFA holds, we can’t act alone. Instead, it is essential to combine our efforts and work collaboratively to move towards a comprehensive approach to Alzheimer's Disease

As a result of this philosophy, alongside CEAFA’s own determination, the State Dementia Group was created in 2013, promoted by the Ministry of Health, Social Services and Equality. The aim of the Group is to promote the exchange of knowledge, experiences and best practices among Alzheimer’s professionals.

CEAFA and Lilly began working together in 2014 to provide this State Dementia Group with meaningful input. We collected information and conducted a deep assessment of the needs of Alzheimer’s patients, and create a set of recommendations and proposals to make progress towards the creation of a State Policy on Alzheimer’s Disease. This input has become one of the focus areas of the so called State Dementia Group.

This collaboration with Lilly has enabled us to establish a state of the art analysis on the impact of Alzheimer's Disease in Spain. The results demonstrate both the incidence and burden of illness (we estimate 4.5 million affected people including patients and family caregivers, and an annual cost of 36,000 million Euros). More importantly, it has encouraged the development of key proposals (summarized as an infographic) necessary to improve the quality of life of those living with the condition, such as working towards a timely diagnosis, improving training of medical specialists and supporting clinical and social research. But undoubtedly, the basic need is to assess the real extent of the problem of Alzheimer's Disease, which is ultimately the number of people affected. This will be determined through the development of the first census of dementia patients ever performed in Spain. 

This unique, collaborative framework built by CEAFA and Lilly must be regarded as a successful milestone, not only for the fulfillment of the goals, but also because it perfectly illustrates the value of establishing partnerships across all stakeholders concerned to meet the common objective of a comprehensive approach to Alzheimer's Disease. Moreover, it is a clear manifestation of the slogan CEAFA has chosen to commemorate its 25th Anniversary: FORWARD TOGETHER.  

 

Pamplona, July 2015

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