I would probably classify myself as a have a go at anything kind of person. This can have some rather awful but also rather fantastic results. So when I was lazily scrolling through twitter not that long ago and I saw that @dem_researcher were inviting people to do a podcast with them about their own research projects I signed myself up (quickly, before I could change my mind). I then had a great chat with Adam who runs the podcasts to find out how it works and realised I would need to recruit some people from the project team to do the recording with me. I started considering who would be best and most willing to ‘sacrifice’ themselves alongside me.
There are four student speech and language therapists working on the project at the moment; and Tiffany Cheng. These bright young things are all really tech (and social media) savvy and brilliant key members of the team. (The students are currently planning a twitter take over to rejuvenate the twitter handle and share their experiences of clinical academic student life) So some podcasting seemed right up their street and thus Ollie volunteered to participate.
In addition the day of the recording happened to fall on the day of our BCPPA steering group meeting (who meet three-four times annually to provide advice on the project and its progress). The BCPPA steering group comprises three couples where one person has PPA, and three professionals including , an extremely experienced brilliant SLT who is experienced in spreading the good word about our profession through her work with Dyscover- Rosemary has experience of being interviewed on the radio. And thus our team was set.
Now, we did have an idea of the questions and were able to make some plans in advance, but as I am of the verbose breed, it was great to have a wonderful host to keep us on track and to time (NB: it is generally understood that there are two types of SLTs a)verbose and over friendly b)shy and quiet but excellent at listening). We were able to briefly discuss who would say what, but equally podcasting is supposed to be somewhat informal too (the pressure was mounting). Recording the podcast was a little nerve racking initially, we were in a fancy room, with fancy equipment and it was a swelteringly hot day! But once we started it seem to flow. In fact by the end we were quite enjoying it.
Now listening back to the podcast 2 months after we recorded it I was expecting the worst. Did we even make sense? I do hate the sound of my voice. I can be rather overbearing and dominating at times (sorry for talking over you Ollie!). I listened to the podcast with my husband who was quick to tell me that I sounded different to “real life” (much posher apparently!?). Having gotten over the initial barrier of hearing my loud and piercing voice (yes someone once told me that is how I sounded to them) I realised that I did actually make some sense. And the best bit- at the end of the podcast my husband announced that he had learnt more about my research is this 30 minute recording than in any other discussion we had ever had.
Since Monday when it went ‘live’ I have had a few tweets and a number of emails about the project from people who had listened to my podcast. Often from people who I have not heard from before, from as far afield as Australia and the US. What a wonderful and different way of spreading the word about the work we are doing to support with PPA and their families to have better conversations. You can listen to our podcast via the link below. And get in touch- let me know what you think, I would love to hear from people.
UK wide survey shows that people with language led dementia often do not to get referred to SLT
Exciting news: The first journal article from my PhD work was published last week in Dementia. So I thought I would try a blog post to accompany it.
I regularly write a blog for the dementiaresearcher.nihr.ac.uk site as a guest blogger, and I wrote this for them. But I have been pondering on whether to post the same one on here and have decided that yes I will. Writing this blog about my journal article took a little longer than my usual blogging time, but was well worth it. I just wasn’t entirely sure how and where to begin.
I have been chatting to a few people about how valuable it can be to blog about the article to coincide with its publication. I have also found some advice on how to do this from a brief internet search. The advice I have collected so far recommends writing a fairly descriptive heading summarising some of the main findings (see above) and using relevant and tweetable or hashtag type phrases in no more than 140 characters and creating a trailer paragraph or set of points to pique interest before the article begins (see starting points below). Then more or less omitting the methods (other than to say it is a survey), aiming to cut it all down to less than 1000 words (ooooo let’s see how that goes), providing only a line or two of introduction and discussion start the article with something high impact- a quote or something topical (hmm not sure I can quite get that down), move into the main findings and unpack it a little, before finishing by summarising things in a slightly different fashion that perhaps directs the reader to the next step in the research you are doing. Lastly adding the full title of the article and the link to the open access version.
So, if you would like to cut straight to the article the link is at the end, but otherwise I have tried to summarise it in the way described above. Here goes-
- SLTs report a growth in the number of people with language led dementia referred to their services, yet identify ongoing barriers to accessing their services for many others.
- People with language led dementia are more likely to get referred to SLT for interventions if they are from high socio-economic background and from Scotland or the south of England
- SLTs and other health professionals need to build a clearer care pathway so that referrers know where to send people with language led dementia.
Language led dementia (or primary progressive aphasia; PPA) is associated with Alzheimer’s disease and frontotemporal dementia. People present with a gradual loss of language over time – for example word finding difficulties, difficulties sequencing sounds or sentences or difficulties understanding or in reading and writing. It seems logical that speech and language therapy could be useful for these people. This UK wide survey of speech and language therapists demonstrates that the number of people with PPA being seen by SLTs are slowly increasing with respondents reporting on average having two or three on their caseloads in the last 18 months, an increase from the previous period. Most people with PPA are being seen in outpatient or community settings across, referred by neurologists (who perhaps have some experience of the role of SLTs from their work with post stroke Aphasia) for word finding difficulties but not much else. The people with PPA being referred are generally English speaking, from higher socio-economic backgrounds and in their 60-70s and are being referred 1-2 years after diagnosis. SLTs reported that there remain many barriers to accessing SLT for this group of people; including a lack of knowledge about the role of SLT and restrictive service criteria that prevents them from being seen in rehabilitation services. Where people are being seen, they are often unaware of what their diagnosis means. Where SLT are able to offer therapy (many services are not able to offer anything) they are able to offer an average of four therapy sessions where they prioritise communication training above other intervention approaches. Yet the research evidence to date in this area of speech and language interventions for SLT is historically predominantly focused on impairment based tasks such as word relearning. This highlights the need for further research demonstrating the effectiveness of the communication training approaches. This demonstrate a gap in the clinically relevant research literature which our forthcoming work on developing and piloting a communication training intervention for people with PPA and their families entitled Better Conversations with PPA (BCPPA)- the protocol is due for publication in the very near future (Volkmer, Warren, Spector, Beeke, In press, Pilot and Feasibility Studies)
So, my current article is entitled:
“Speech and language therapy for primary progressive aphasia: Referral patterns and barriers to service provision across the UK” and can be found here: http://journals.sagepub.com/doi/abs/10.1177/1471301218797240?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed