By Age in Spain Director, Helen Weir
From 20 to 25 September, Age in Spain is holding a Dementia Awareness Week. This coincides with World Alzheimer´s Day on Tuesday 21. Over the course of the week, on our website and social media, we will be sharing a wide range of content that starts to raise the question, “what is it like to live with dementia in Spain?” Of course, starting to raise the question is all that an organisation like Age in Spain can do. Dementia is an immensely complex subject and we do not pretend to be experts.
However, dementia does feature as a significant factor in our work, particularly in our Casework service, which sees us offer support to people in Spain who find themselves in particularly difficult situations. As we have taken on a more prominent role over the last year and a half (thanks to our work supporting UK nationals with the residency process) inevitably we have come across more cases of people living with dementia and that is only likely to increase in the coming years. As an aside, we are using the expression “people living
with dementia” to include people who have a form of dementia themselves, loved ones who provide care and also their families who may live in a different country and need to deal with systems and services from a distance while negotiating a language barrier.
Like so many people, I also have my own perspective on living with dementia. In my case, this came from the time when we brought my mother in law, who had vascular dementia, to live with us in our house in Catalonia. Ensuring she had the best possible package of care was a learning experience but I suspect it is for anyone in a similar situation, wherever in the world they live. I found myself having to learn about her condition and what to expect but also having to learn how to become a service user. For example, where we might have expected services like hospitals and community nursing to be joined up, it was our experience that we continually had to make those connections, usually through our GP. The one thing that was definitely apparent was that you need to get into the Spanish system to access the support that is out there and, of course, sorting your residency is the essential first step.
(My Mother in Law, Dot)
On the positive side, we found that the state services were excellent and the level of care offered by the two Honduran carers who we were fortunate enough to be able to employ privately was of the highest possible standard. But extrapolating universal advice from personal experience is always a risky thing to do and everyone who is living with dementia in Spain will have their own individual experience. That´s why I am so pleased that over the course of our Dementia Awareness Week we will be sharing so many different perspectives on dementia from people with valuable insight. Thank you to all the people who shared their professional and personal experiences and I do hope that you will find something useful on what we share online.
As I have said, this week is only the beginning of the process. In a way it´s us holding up our hands and saying we don´t yet know enough about this subject and a commitment to address that. We certainly plan to develop information resources that will help people navigate the systems in Spain and understand where they might go to look for support. To help us with that we would be immensely grateful if anyone with experience of living with dementia would complete our Dementia Awareness Survey, it will help us understand more about the challenges people are facing.
Age in Spain is a national organisation and we don´t aim to have the detailed local knowledge or targeted support that some of the fantastic, locally-based voluntary organisations can offer. What our Casework service can do is help people make the connections and understand what help is out there and support them in assembling the best package of support that they possibly can.
Living with dementia is one of the supreme challenges that any family faces and there are no “answers” but information and awareness can only help. We hope our Dementia Awareness Week makes a small contribution and that you find something of interest.