An Interview with Dr. Jane M. Mullins

by Gordon Nary

Gordon:   Where were you born and what are your favorite childhood memories?

I was born in Swansea, Wales, UK and had the good fortune to grow up in Mumbles, a Victorian fishing village on the Gower Peninsular. My favourite childhood memories included exploring the coastline of Gower with my dog, Jock, and swimming in the sea.

Gordon: You have attended several schools and universities. Please list them and the degrees earned.

Jane: I qualified as a nurse in Morriston Hospital, Swansea in 1990, and after nursing in ITU for 2 years went on to study for a Degree in Nursing Studies at Cardiff University. While studying I looked after residents in a Care Home. My later academic achievements included my PhD: A Suitcase of Memories: a sensory ethnography of Tourism and Dementia with Older People at Cardiff Metropolitan University achieved in 2018.

It was a serendipitous moment that led me to study for my PhD.

Gordon: Tell us about the incident with your son Ollie at that tome

My son, Ollie (then 4) had left his cuddly cow; Udder in the hospital after his appointment with the Doctor and was distraught. No amount of reassurance could placate him. So, after picking up my other son, Ben (aged 5) from school we all drove back to the hospital to pick up Udder. Fuel in the car was running on empty and I had little money, but I had faith that we would get there. There was no way Ollie would cope without Udder! I('m sure most parents have been in a similar situation!).

Once Ollie and Udder were reacquainted, I took the boys to the park near the hospital. I was going through a tough time as both our boys had been very ill and hospitalised many times when young, my husband had lost his job due to the market crash of the early 2000s, we lost our house and my research post was coming to an end. So, we had no idea where our next income was coming from and we were once again on the verge of homelessness. As the boys played in the park, I sat on the bench contemplating about our situation and was feeling very low in mood. Both my husband and I had been very hard workers, but despite this we had our struggles which was impacting on both our mental health.

The only other person in the park at the time (it was a very stormy day), was another Mum, with her daughter. She came over to talk to me as her daughter played on the swings with the boys. We chatted, and she asked me what my job was. I told her that I was a nurse who was passionate about working and researching with patients who had dementia, but also needed a flexible role as I wanted to dedicate my time to bringing up our boys. Just as a bolt of lightning shot across the sky, (the weather was that bad!) she went on to say "Oh that's interesting, I am a Professor of Tourism at Cardiff Metropolitan University and we have just won the Vice Chancellor's Bursary Award to explore aspects of Aging and Tourism. We are looking for someone who has experience of Aging Studies". I had never considered undertaking a PhD but she was insistent that I apply, the bursary would help us financially and I would have the flexibility I needed. I thought I had nothing to lose by applying - they interviewed people from all over the world, it was a tough process, and to my amazement I was successful!! the rest is history, thanks to that moment in time. I managed to maneuver the research towards exploring multisensory tourism memories with seniors living with moderate dementia to help them communicate and become reconnected. My ongoing passion has always been to help patients who struggle with language and communication and this informed my work. This went on to inform my book dementia training.

Gordon: What are some of you favorite memories when you were a Nurse at West Glamorgan Health Authority?

Jane: I loved my nurse training, because as trainees, we were all "in it together" and despite being a challenging job, the hospital that I trained in was like an extended family. We had wonderful nursing sisters who were strict, but fair and great role models. I was always drawn to patients who struggled to communicate due to stroke and other neurological conditions. Some of my most profound memories include being at the bedside and caring for a person at the end of their lives, it really is quite a privilege, we were always taught that when the time came, we were to open the window to let the person's spirit leave.

Gordon: What did you find most rewarding when you served as Acting Manager at the Care Home?

Jane: I loved the fact that I had total freedom to support the residents and staff with all of their needs. When a person became a resident of the Home, I encouraged the staff to find out as much about the person as possible. What they loved, what they didn't like, their beliefs, life stories, and much more so that we could help them continue to live a meaningful life of purpose and to support their loved ones who had struggled to give up their caring responsibilities and hand over to us. We would often dress up in fancy dress and take the residents and their families into the park by the Home where we would entertain them by playing rounders and serving them cream teas. Seeing our residents laugh and enjoy their days was the best part and sharing that with our staff made the role really rewarding.

Gordon: When did you serve as Staff Nurse at the Medical Department, Cheltenham, General Hospital, and describe one of the most challenging cases that you helped care for?

Jane: My most challenging time was as a nurse in charge on nights on an acute medical ward in 1996, and we were very understaffed. Three of our patients had a cardiac arrest within hours of each other throughout the night and sadly all attempts to resuscitate all three failed. I was in my early 20s and had to break the news to each of their wives that night. I had no support from senior staff while doing this and we had to support all of the patients on the ward who were traumatised by what was happening around them. The stress of working under such conditions, with no support led to my own health being affected and was later diagnosed with chronic fatigue syndrome. This experience shaped me in terms of only being able to work in certain roles due to my health, and in my developing a wellbeing hub for our trainees, to support them through challenging times.

Gordon: When did you serve as Memory Team Nurse and Research Nurse at the Research Institute for Care of the Elderly and what were your primary responsibilities?

Jane: Fortunately, a research nurse post came up at the Research Institute for Care of Older Adults, Bath. I worked there from May 1997 to August 2000 where my husband and I relocated back to Wales and I continued my dementia research work at the Memory clinic in Cardiff supporting people through their diagnosis of dementia for a further 4 years. This involved undertaking cognitive assessments with the person and interviewing their loved ones and providing emotional and practical support for both. I also managed the clinical trials for the drugs that are now licensed for Alzheimer's disease.

Gordon: What did you learn about dementia when you served as Research Nurse Specialist, Memory Clinic, Dementia Care at Cardiff University?

Jane: I learnt so much about the experience of dementia from the patients who came to the memory clinic and when I went out on home visits. I listened and observed and realised that whilst each person was different, there were certain similarities in the issues that people were experiencing due to the dementia. I also learnt much about how dementia is diagnosed and about rarer forms of the condition through the journal clubs held.

Gordon: Please provide an overview of your work as a Researcher and Guest Lecturer at Swansea University.

Jane: As a researcher, jobs are never permanent, so are always based on what funding is available. So over time I worked on various projects including co researching with people living with dementia and staff at creative industries to troubleshoot and come up with solutions to support our aging population.

Gordon: What is one of your favorite memories as a Lecturer, Health and Social Care Cardiff Metropolitan University?

Jane: As you can see I have been around a long time, working in nursing practice, research and education! I taught Health and Social Care to students from all over the world, I loved bringing together students from Iran, Kenya, Poland and more locally in Cardiff to explore each others' worlds and share best practices in care. It was truly inspirational and I introduced storytelling and creative methods into my teaching to make it memorable. I was also module leader on Personal and Professional Development, where I coached the students in exploring what areas of care work they wanted to explore and help them on their career path.

Gordon: What prompted you to write Finding the Light in Dementia,  A Guide for Families, Friends and Caregivers? Please provide an overview of your book

Jane: Once again, there's a bit of a story here, I was taking my boys to an acting class to help build up their confidence and hone their natural creativity. As I was waiting in the foyer, I noticed a newspaper for seniors, and as I flicked through it, an idea came to me. I wondered if the editors would be interested in me sharing my knowledge in a guest posting. I contacted the paper and they were very happy for me to write for them. This turned into a blog, and then friends of mine suggested I turn the blog into a book! As a researcher I am used to extracting themes from my work, and from the hours and hours of listening to and observing people living with dementia and their loved ones, I turned those themes into chapters: A diagnosis of dementia, what now?; Communicating from the heart; Using memories to keep in touch; Staying connected through lifestories; Creating a calm, safe place; Sleep is the best medicine; Tips for eating and drinking; I am still me!; Understanding changes in mood and behavior; Altered states, hallucinations, delusions and misperceptions; Caring for the caregiver and Considering care.

Gordon: Tell us about your current work.

Jane: My current work is through my company; DUETcare Ltd (Dignity, Understanding Empathy Training) and includes Finding the Light in Dementia Training https://www.findingthelightindementia.com/. Here I train people from all walks of life and staff working in health and social care and other public services. I have developed training resources with contributions from people living with dementia, caregivers and leading professionals and researchers, which are available via an e learning dementia training platform. Trainees can have access to all of the films, audios, presentations and animations for a certain length of time and undertake activities and reflective journals to develop skills.

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This gives them time to go over the resources and refer back to them as and when needed. Swansea University School of Business and Management have undertaken an independent review of the training and found that over 90% of trainees "strongly agreed" that since completing the training they provide a better quality of care that is safer and that the staff feel more confident and enjoy their work more. Data is also emerging to show a reduction in the need for 1-2-1 care and a reduction in residents being admitted to hospital from care homes. All because the staff are more knowledgeable and skilled in understanding the world of the person who has dementia and know how to communicate and support them. I also provide a course for family caregivers and loved ones.

Gordon:  What are the initial signs of dementia and Alzheimer's disease?

Dementia is an overarching term for many progressive conditions that affect brain nerve function. Alzheimer's is the most common type of dementia. Early signs depend on a number of factors; the type of dementia, the age and health of a person, their personality and life history. Most commonly people who are diagnosed with Alzheimer's disease will seek help when they struggle with their short-term memory, attention and may become disorientated to time and place. They may also show difficulties with finding words, and communicating. However, a person who has Lewy Body dementia may initially show signs that are characteristic of Parkinsons disease, such as a tremor, rigidity, and falls. They may also experience hallucinations which can include seeing, hearing, tasting and smelling things that aren't there. People who are diagnosed with vascular dementia tend to exhibit a deterioration in a stepwise way that is associated with experiencing mini strokes, whereas frontotemporal dementia (which often affects younger people) can manifest as profound speech and language problems (aphasia) and/or behavioural and personality changes. So, you see dementia isn't just one condition.

Gordon: Thank yolk for an exceptional and informative interview .I have added some contact information and some of your interviews

Contact details:

contact@duetcare.co.uk

jane@ftlid.co.uk

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