When I posted the wonderful blog written by the SLT, Georgia Bowker-Brady, I was overwhelmed by the response. The twitter discussion on the topic of speech and language therapy for dementia was really valuable. In response a wonderful colleague, a Neuro-psychologist and researcher here at UCL; Dr Aida Suárez-González got in touch with a really inspiring blog she wanted me to share here. A call to arms to all speech and language therapists. Aida is a massive advocate for speech and language therapy and an all round wonderful human being. Thank you for the support Aida- we really appreciate it!
The first SLTs in my life were my friends from the School of Speech and Language at the Universidad Pontificia of Salamanca. I met them in 2003 while studying my masters after completing my undergraduate degree. I spent a lot of time surrounded by SLTs over the next couple of years. I learned about their role in managing voice conditions, dysphagia, dysarthria, administering orofacial myofunctional therapy, supporting kids with learning disabilities and deafness etcetera. Clinical discussions over dinner, the challenges in teaching and training, the lack of appreciation of SLT in the health care system and related topics filled many conversations over drinks, dinners and Sunday afternoon gatherings. I remember reflecting on how practical their discipline was. I found it very varied and hands-on and was intrigued to see that even recently graduated SLTs were already able to use many techniques, solve many problems and be very useful.
Then I qualified and moved to pretty Seville to join the Cognitive Disorders Unit of the Neurology Department at Virgen del Rocio University Hospital as a junior neuropsychologist. I must say that my 9 years there have never been exceeded by any other experience in any other place in which I have worked since. Apart from the exceptionally high clinical services delivered and my overwhelmingly experienced colleagues in the department, I had the opportunity to be completely immersed in a clinical culture that celebrated excellence, mentorship, integrity, knowledge and most importantly: collaboration. For instance in the 90s the team on the Stroke Unit had pioneered the carotid artery stenting in Spain. They did this through a bold collaboration between neurologists, radiologists and nurses. The neurologists in the Cognitive Disorders Unit (my Unit!) really appreciated the role of the neuropsychologist, in spite of being highly knowledgeable and well versed in cognition and neuropsychology themselves (or maybe because of that!). Other allied professionals were also very respected and everybody knew everybody in the hospital, after years of inter-professional collegiality.
I was however very surprised when I learned that the SLTs in the hospital refused to see our patients with PPA, either because they did not accept referrals for people with dementia (they were prioritizing people with chronic conditions such as stroke related aphasia) or because those who did accept referrals, did not know how to handle PPA. The neurologists had been trying to refer patients with PPA for years and referrals always bounced back to us. I then learned that in other places the problem was the other way around: there were SLTs eager to help people living with dementia but referrals never arrived, or they arrived only when the person was in the severe stages of the disease, or presenting with swallowing difficulties. Five years ago, I moved to the UK and found that the situation was similar here. The problem in both countries is not only that the role of SLT is not properly understood by many people. The crucial problem is the historically nihilistic and reductionist approach to dementia across our society, which considers that people with degenerative cognitive conditions do not have the same rights as others, and do not deserve the same level of rehabilitation and positive support and investment as people with chronic conditions such as stroke related aphasia. In my mind this is discrimination. it is unfair, unethical and it is a violation of human rights.
50 million people are currently living with dementia worldwide. This figure will increase to 82 million in 2030 (11 years from now). And to 115 in 2050 (31 years from now). Some pharmaceutical companies have now simply discontinued the fight to find a cure. Altogether this depicts one of the most challenging global health crises of our time. It is estimated that by 2050 there will be no person in the developed world untouched by dementia, either because they have dementia themselves or have a close relative or friend living with dementia. This is why we need as many hands on deck to join in the work we are doing in the area of dementia care. SLTs have a crucial role to play here. In my 14 years of experience working with people with dementia, I have seen many families shattered by two of the main consequences of the disease: the neuropsychiatric symptoms and the communication breakdown. And SLTs can actually help with the second issue. So, this is a call for action. For SLTs to take a prominent role at the front-line in this challenge, to join forces with the rest of the professionals up here and help to create a world where we can live together with the symptoms of dementia and still be the owners of our own lives.
A life working in dementia is a life well spent, a huge legacy for future generations. And you will probably meet very inspiring colleagues, friends, families and patients on your way. I hope more of you will join us on this journey.