Guest Author: Jane Mullins of Finding the Light in Dementia

Finding the Light in Dementia: A Guide for Families, Friends and Caregivers

By Dr. Jane M. Mullins, Ph.D.

My Background

My background begins with connection. I trained as a nurse in the 1980s and spent much of that time caring for people who had difficulty communicating because of stroke, dementia or other brain related conditions. I was really drawn to these people as I felt they were neglected and really needed to have their voice heard.

I sensed their frustration when other staff didn’t have the time to spend with them. They didn’t try to understand what they were going through and what they were trying to say. In fact, I was often told that I was too close to these patients. I was advised not to spend so much time trying to listen to them by the senior nurses I worked with.

But deep down, I felt their pain and frustration and knew they had a voice that needed to be heard. Looking back, I think I always communicated on an empathic and intuitive level.

Grandfather: My Hero in Many Ways

My story begins earlier, as a very young child who remembers her grandfather, a veteran of the First World War, who served at Gallipoli. On return from the war (and many did not return) and during his adult life, he sang as a bass baritone with the Carl Rosa Opera Company. According to my parents, he had the most sublime voice that would charm his audience.

Sadly, later on, my memories of him were of a paralysed man. He was bed bound and unable to speak following a number of strokes he had suffered. I remember feeling his frustration when trying to get his voice heard: his face would grimace and body would stiffen and shake. He managed to shout out sounds but they were incomprehensible and he would often cry.

But in contrast, sometimes he would settle and his whole being would relax when he sang songs and nursery rhymes to myself and my sisters. Every lyric was audible, every word came out perfectly. And so, I am sure that my memories of him have left me knowing that, despite the condition, there is always a way to connect with a person who struggles with their communication caused by disease and illness.

I feel that this is the case for people living with dementia.

Despite the condition, there is always a way to connect with a person who struggles with their communication caused by disease and illness

Later on, and for the past 30 years, I found myself working with people who have dementia in memory clinics, care homes and hospitals. Throughout my nursing career, I saw that when I was listening to people who had dementia and supporting their caregivers, the same issues cropped up.

I realised that they often didn’t know what their loved ones were experiencing and so it was so difficult for them to know what to do. They often felt scared, frustrated and out of their depth. This made me realise that there must be many caregivers feeling the same and so I started writing a monthly newspaper column.

The Book’s Beginning

Each month I wrote on a theme that would crop up in clinic and I soon found that I had written enough that could be put together into a book. These were all based on my practice experience, the stories of other caregivers of what worked for them, and up to date research.

I later went on to complete my Ph.D. which explores sensory ways in which we can communicate with people who have dementia and how their partners can reconnect with them. My studies have confirmed to me what I have suspected all along; that the person is still there, and we need to find ways to reach them.

This experience has confirmed my intuition that we can still connect and care by listening to the emotions of a person who may struggle to speak or understand what we say to them. This was my motivation for writing Finding the Light in Dementia.

Main Themes

The major theme of Finding the Light is to help caregivers stay connected or re-connect with loved ones who may appear to be slipping away from them or who start becoming stressed and agitated.

The main themes I cover are:

• Communication. Realising that people who have dementia take a long time to process information and may not actually understand what is being said to them. But they feel the emotions around this, also how to help them when they struggle to find words and express themselves.
• Creating a Calm, Safe Home. People can be frightened and insecure and may not be seeing things as they used to. For example, caregivers may not know that their loved ones may see the rug in the middle of a room as a black hole and this would explain why they don’t want to walk over it.
• Changes in Memory. What is short term memory and how we can help people in their day to day lives with practical tips, alongside using life stories, the senses and reminiscence. It is also important to note that some people who have dementia may not experience memory difficulties at first.
• Tips for Sleep, Eating, Drinking, Continence, and Personal Care. How to help the person maintain as much independence and motivation as possible.
• Mood and Behaviour. Understanding changes in mood and behaviour and what to do, including in the event of a person experiencing hallucinations and delusions.

I also explore how you can care for yourself as a caregiver, as we know that the changes in roles can deeply affect emotions. The book also gives some advice about considering involving other caregivers, provides checklists for searching for residential care, and what to take into hospital should the need arise.

Features of Finding the Light in Dementia

• Each chapter is very clearly written and includes an explanation of what your loved one may be experiencing.
• Practical tips and approaches to help
• Caregiver stories
• A summary at the end of each chapter that can act as a quick pick up resource
• Notes pages where you can tailor the information to your needs and to write your loved one’s likes and dislikes and routines that help, as well as noting what approaches work. These can be dated as care needs may change over time and can be shared with family, paid caregivers, doctors and other professionals.
• I provide suggestions of what to say in certain situations.
• Portable; can fit in purse, on hand to refer to quickly, with clear print and summaries at the end of each chapter.

Over time, I am sure that we can, in most cases slow down the deterioration of the dementia when we know what is happening and we adopt a number of these approaches. By following these stories, it may be possible to keep that connection going to help loved ones express themselves through their emotions and be understood more.

Learn More About Finding the Light in Dementia

Feedback from Caregivers

One caregiver told me that caring for Mom who has Alzheimer’s disease has been made much easier after reading this book. Practical suggestions (see below) that family and paid caregivers worked on together helped their Mom feel happier and less anxious. This had a huge impact on all members of the family. She is now still living in her own home.

• Sit in a chair by the window (early morning light is important to help with natural rhythms.)
• Keep the room light to help with poor eyesight.
• Listen to how she is feeling when she cannot get the words out and take more time with her.
• Use visual props to help communicate and cut down background noise and distraction.
• They also created a reminiscence office space with an old typewriter for her when she says she needs to go to work (when she was younger she worked as a secretary.)

Caregivers have fed back to me that Finding the Light in Dementia is unique in that it is the first clearly set out self-help dementia care book. They have found that their partners are more responsive towards them, less stressed, and it helps them find ways and know that they can keep their connection alive.

Course for Families, Friends and Caregivers

Building on the information in the book, I have created the essential online self help course for families, friends and caregivers with contributions from over 50 caregivers, people living with dementia and leading professionals and researchers in the field.

This includes films, audios and presentations on understanding how dementia can affect a person in more detail, how to communicate and using creative ways to connect.

The course explores what we can do to our surroundings to help the person and helps us understand how their emotions and experiences can trigger responses and behaviours and offers many tips and approaches to help reduce stress and distress.

This course is unique in that it draws from so many experiences (professional and personal) and knowing how busy caregivers are, can be played while getting on with household chores to help you learn to care with confidence.

It is my mission to educate health and social care professionals, public sector workers, families, and members of the public about how dementia affects people and how we can support them in our communities and care settings to live well and meaningful lives through my training, courses and consultancy. 

Finding the Light in Dementia Training

I have brought together over 50 contributors to my training courses for individuals, these include people living with dementia, caregivers and leading professionals and researchers in the field. These courses are up to date, evidence based, enjoyable to undertake and accredited for Continuing Professional Development/Education at Foundation, Intermediate and Advanced levels. I also provide the training face to face, where required.

They include:

• Understanding dementia
• Communicating and Connecting
• Using Memories to Keep in Touch
• Creating a Calm, Safe Place
• Understanding Moods, Emotions and Responses
• I am Still Me!

Features and Benefits

Full Accessibility Online

Levels 1, 2, and 3 Dementia Care Training available via online platform for access any time. It is available to all staff for one affordable annual subscription fee.

Coordinated Academic Alignment

Mapped to Skills for Care, Good Work, NHS Training Standards, and National Occupational Standards. Evaluation with Swansea University. All staff can access the training, wellbeing hub, and additional resources anytime and anywhere to suit their busy lives. It is also mobile-friendly.

Strengthens Staff Development Efforts

A strong self development ethos underpins the whole of the training, including reflective practice and access to a wellbeing hub with self care. It also includes anxiety management and grief and bereavement resources. The program helps to develop a resilient, knowledgeable, confident, and well  adjusted workforce that will contribute to staff retention.

Perspectives: Living with Dementia

Created with people living with dementia, loved ones and carers and delivered through engaging films, podcasts, presentations, animations, soundscapes and activity books. – Accessible, enjoyable, sustainable, real life learning for all learning styles and levels.

Perspectives: Dementia Professional and Academic

Created by a dementia nurse specialist with:

• Over 30 yrs experience in memory clinics, community, hospitals, and care homes.
• PhD research exploring multi-sensory communication with people living with moderate dementia and their care partners.
• Author of Finding the Light in Dementia, a Guide for Families, Friends & Caregivers and former Lecturer and Personal Tutor in Health & Social Care.
• Masterclass experience and interviews with leading professionals and researchers in the field, people living with dementia, and carers. All used to share current, evidence-based, ongoing knowledge to positively impact practice.
• Program created in collaboration with Meri Yadaain, to ensure training is culturally inclusive, accessible, and relevant for all.

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About the Author

Dr. Jane M. Mullins, Ph.D.

Jane Mullins is a Dementia Nurse Consultant who has worked with people living with dementia and their families for twenty-five years.

This has included listening to and supporting people during their diagnosis in the memory teams of Bath and Cardiff, UK. She also worked as a Care assistant in a care home during her nurse training, through to managing the home when qualifying as a nurse.

Her hospital work has included caring for people living with dementia on medical wards, intensive care and coronary care.

Her practice experience is backed up by expert knowledge from her Ph.D. studies: A Suitcase of Memories: A Sensory Ethnography of Tourism and Dementia with Older People.

A “Suitcase Full of Memories” explores sensory and intuitive ways of communicating and connecting with people living with dementia and has helped inform her book,“Finding the Light in Dementia: A Guide for Families, Friends, and Caregivers.“ It is available on Amazon.

Connect with Jane

• Website: www.FindingTheLightInDementia.com
• Facebook: @DrJaneMMullins
• Twitter: @DUETcare

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