A personal journey with Alzheimer's Date: 12/12/14
By Pieter Droppert
Putting personal issues on public view can be tricky and even downright awkward for journalists. It is often difficult to maintain a level of objectivity when the focus of your effort concerns a loved one – particularly if that person has a condition like Alzheimer’s. But it can be done. Pieter Droppert, a UK journalist now based in Miami, explains how he went about reporting and producing his radio documentary, "Living Well with Dementia – a personal journey."
Q: Why did you decide to make your mother’s story so public?
I started out wanting to make a story about innovation and dementia care because of the huge impact caring for dementia will have on society in the future. What was happening in the local area in Liverpool that was exciting and interesting in dementia care? Fortunately there was a lot!
It was only when I was writing the script for the narration and thinking about how to link all the interviews and topics together that I realized it was in essence a personal journey I had taken. Making it a first person narrative with commentary around what I saw happen to my mother made it a more powerful and compelling story.
I think many families face challenges about how best to care for a loved one with Alzheimer’s, which is one form of dementia.
My mother Audrey died a few weeks before I started the documentary project, so I also felt that it was a fitting memory to include the only audio I have of her. We should all record more of our families!
Including tape of Audrey at the beginning and end reminds everyone who listens that dementia touches the lives of real people. Audrey could be anyone’s Grandma, Mother, Sister, Aunt or Friend.
I’m sure she would be happy to be remembered and for her voice to still be heard even though she has now passed on.
Q: How did you separate Pieter the journalist from Pieter the son?
I think it was impossible to separate the two – in essence when I did an interview I was a journalist whose mother had Alzheimer’s and that influenced my frame of reference and how I approached the story.
Q: How did you find and approach others with the disease and persuade them to speak with you on the record?
There is a lot going on in Liverpool to reduce the stigma associated with dementia and educate the public, businesses and the community on how best to support people living with dementia.
A number of local people with an early diagnosis are publicly advocating for greater awareness and have done interviews and even produced videos about their life. I was fortunate to find one of them, Tommy Dunne on Twitter (@TommyTommytee18).
I sent Tommy a tweet, he sent me a [private message] with his email address and we arranged to do an interview at the Everton Football Club Pass on the Memories program that I had already received permission to attend from the club.
What I was concerned about was making sure that anyone with dementia who I interviewed had the capacity to consent. In addition to obtaining verbal consent at time of interview, I also discussed with a mental health professional who knew them whether they had the requisite capacity. I don’t think I would have interviewed or broadcast anyone who was at the advanced stage of the disease, where consent was not possible, even if they said they were ok with it. Thinking about how to obtain consent, and the capacity to consent, is an important consideration when working with vulnerable people.
Also, when conducting the interview I had a clear view of what topics I thought were appropriate and how to sensitively cover them. I never wanted to put anyone in a position where they felt uncomfortable.
Tommy Dunne turned out to be a really great character and is one of the stars of my documentary.
Q: How did you find out about the “Pass on the Memories” program?
I first found it through a Google search, and immediately thought “wow” a Premier League Football Club working with people in the community with dementia, that’s a great story!
When I subsequently talked to people involved with dementia care in Liverpool, it also came up in the conversation a few times.
Everton FC was also the venue for a meeting I attended about a European project called ‘Innovate Dementia”, so within a short period of time I had multiple data points suggesting that what they were doing in partnership with MerseyCare NHS trust was something I wanted to report.
Q: You lived in Miami but traveled back to the England to be with your mom. What differences/similarities in dementia care between the US and UK did you observe?
I don’t have any experience of dementia care in the United States, I can only talk about what I observed in England through the lens of my mother’s experiences.
However, I expect there would be similar challenges – how to support people in their own home for as long as possible.
In the United States I could see there would be more issues around driving and how to maintain independence if people live in rural areas or where there is not much public transport.
Dementia care is a topic I hope we will hear more about in the United States. The US seems to be lagging in raising awareness of the challenges we face in the future. As society gets older, dementia care will become a greater burden to families.
Q: What challenges or obstacles (if any) were there in reporting this story? How easy/difficult was it to get people to start talking?
I think the biggest challenge for anyone approaching a big topic like dementia is picking a focus or angle. It’s all too easy to be overwhelmed by the shear breadth of reporting possibilities. You have to have a focus and mine was on what innovations in dementia care were going on in the Liverpool area where I was based at the time.
Good radio journalism and documentary storytelling requires character driven stories told in a way that makes us go “wow” or “I didn’t know that.” For example, most people who listen to my radio documentary feel differently about the color “red” afterwards.
For me, one challenge in this story was gaining access, and I think that’s an issue that journalists routinely face, whatever the story. Some organizations were brilliant e.g. Everton FC in the Community. Other leading organizations unfortunately just point blank refused any support.
In the end, access shaped the story as I only had one week to do most of the recordings and interviews – some story strands that I might have followed e.g. the role of music therapy or dance in dementia care, I simply couldn’t gain access to where these were taking place.
In terms of talking to people, I found that they were a lot more open to me when I told them that I had personal experience of dementia through my mother. I think that made people more relaxed and confident that I would not only report what they said fairly and objectively, but in a way that was sensitive to the topic generally.
Q: Tell us a little about the program you were in that prompted you to pursue this idea.
Since 2011, I have written about science, innovation and new product development on Biotech Strategy Blog. In recent years it’s taken more of a focus around cancer drug development.
Given my mother was deteriorating and in a nursing home, I saw the 13 week diploma in radio journalism at the National Broadcasting School based at Radio City in Liverpool as an opportunity to spend quality time with her, while at the same time doing an accredited journalism course and gaining skills in audio storytelling.
I’m a great fan of the power of radio to create intimacy and personal connection – I listen to podcasts all the time, so the idea of spending 13 weeks based at one of the UK’s leading commercial radio stations was appealing. It’s at the top of a Tower that has commanding views of Liverpool and the Mersey Estuary – something I never tired of!
Sadly, my mother died a few weeks into the course. However, one of the course requirements was the production of a broadcast quality radio documentary, so after considering a few other topics, the idea of doing a story around dementia was the one that resonated most with me.
Q: How many hours did you spend conducting interviews, editing, and scripting/narrating?
The radio journalism course I was on gave a week free of classes and assignments for research and interviews, and I certainly used all of that.
I did conduct a couple of additional interviews outside of this week. The majority of editing and script writing was done over several weekends and some early mornings/evenings.
All in all, I think the documentary reflects about 2–3 weeks of solid work.
Q: You usually write about cancer and biotech so this was quite a change in topic for you — do you anticipate more reporting on dementia or other issues of aging?
I spent a year at medical school, have two degrees in physiology, and in a previous job was Global Project Director for an Alzheimer’s drug development program, so I’m pretty comfortable tackling any health-related area.
If I can find outlets and organizations that are willing to financially support freelance work, I’d certainly be interested in reporting more about dementia, mental health and the challenges associated with caring and treating it. Why don’t we have an effective drug for the treatment or prevention of Alzheimer’s? It’s a huge story given the impact dementia will have on society in forthcoming years.
As we not only live longer, but also work for longer, I think “living better as we age” is a topic that all health journalists should be thinking about.
Q: What advice do you have for journalists who would like to produce compelling radio stories?
First of all, you have to have good production skills – radio is unforgiving. In fact, when I did a week long video course at the Columbia Graduate School of Journalism a few years ago, one of the key things I learned was that people will forgive poor quality pictures, but will not forgive poor quality sound.
You have to learn how to use a microphone, set levels on a recorder and know how to use audio editing software. The majority of audio you gather for a story won’t be used and you’ll probably spend more time editing than you do interviewing, so becoming proficient as an editor is key especially if you’re on deadline.
In terms of radio storytelling, find characters that bring a story to life, and look for scenes that make you sit up and pay attention. We want to hear about what surprises, not what is mundane.
Radio storytelling is all about emotion and capturing the human experience. As one of my mentors, John Biewen (Duke Center for Documentary Studies), wrote in “Reality Radio,” (quoting Bill McKibben) documentary radio, “it takes as its beat, well, life.” I couldn’t agree more.
Q: What’s next on your reporting agenda?
I continue to write for Biotech Strategy Blog on cancer drug development. It’s an exciting time in the field particularly with regards to the promise of harnessing our immune system to fight cancer.
Just over a year ago we put up a paywall and it’s been phenomenally successful. The funding we’ve obtained has allowed us to attend medical/scientific meetings we otherwise would not have gone to, and generate more conference coverage for our subscribers in return.
Armed with my new radio skills, and the accolade of winning best radio news documentary for my dementia story at the 2014 UK Broadcast Journalism Training Council (BJTC) student journalism awards, I’d certainly like to do more radio reporting.
My first freelance radio piece on cancer immunotherapy aired on NPR Sound Medicine on Dec. 7.
Looking to the future, if I can find sponsorship I’d love to produce a podcast around medical innovation or new targets in drug development. The interface between science and medicine is one that fascinates me. I also think that on-demand audio podcasting is the future.
However, if I could find a permanent position in radio that matches my skills I’d certainly consider it, but traditional media is facing many challenges, and I see my future more as a digital media entrepreneur.