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

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My book, training and courses have been developed over many years, to help all people living with dementia, their families, staff and caregivers understand how dementia can affect a person, how they experience the world around them and how we can care WITH them. I have built on the work of Tom Kitwood, Abraham Maslowand Martha Rogers in developing the Finding the Light in Dementia Model of Care.

The Book is filled with quotes from people who actually experience what it is like to live with Dementia and provides really useful emotional and practical advice to those who are Caring. Issues like creating a calm and safe environment, understanding sudden changes in behaviour and communication are so important and these are covered so well, along with many others. Finding the Light In Dementia has been invaluable and has helped us know what to do and how. We are currently caring for my 90-year-old Mum together in her home and with all the challenges that Stage 6 Alzheimer’s bring, this book has been a great source of wisdom on how to tailor our approach. We have used the book to provide a consistent approach to her care. All professional home caregivers would also benefit from reading this to enable them to provide the best care possible in their role. It’s also a book that reminds us to look after ourselves!”--Angharad and Anthony Brown, Daughter and Son-in-Law, Family Carers The first thing I want you to realise is, that this may not be a normal part of the condition, as other physical conditions and medication may also affect a person’s ability to stay continent. I know caregivers often don’t tend to seek help as they feel embarrassed and conscious of keeping their loved one’s dignity. But it is important to speak to your doctor and ask for a continence assessment for them. This is usually done by a specialist continence nurse who will be able to explore the cause in more detail, offer support and advice that may help and thereby reduce the embarrassment and stigma associated with it.Accredited training available at Foundation, Intermediate and Advanced Levels via an online platform 24/7, 365 days a year for all staff for one affordable price. Mapped to occupational standards, Good Work, nurse training standards – All staff can access the training, wellbeing hub and additional resources anytime and anywhere to suit their busy lives. It’s absolutely amazing, I think it should be compulsory reading for everybody at the start of dementia. I wish it had been around when my husband started developing it.” -- Elizabeth Cox, Wife and Caregiver There is much we can do in stages to get this platform up and running thanks to the selfless help from creative souls such as Tom Tremayne, Jim Rich Film, Julia Powell and Kathryn Davies. So any pledges now are welcome to help build the videos and podcasts. It concludes by discussing the possibility of the person needing admission to a care home and advises how to face this and choose the best home.’ Just like in real life we are all different and there is no one way to describe the effect of the illness or how best to treat those who suffer from it. That makes Dementia Care difficult but getting it right is essential and ‘Finding the Light in Dementia’ goes a long way in doing just that. I cannot stress highly enough just how important a contribution this book will make. Dr Andy Woodhead

Through listening to & supporting people & their families during & following their diagnosis in memory clinics, caring for people who have dementia in hospital & in care homes, she has helped people throughout all of the stages of their condition. Mullins, J.M., Tales, A., Musselwhite, C., Rich, N., 2022, “Rekindling couplehood” using a multisensory suitcase of memories: A pilot study of people living with moderate dementia and their partners, Ageing & Society.The author is a dementia nurse consultant and has worked for the past 25 years in Memory Clinics in Bath and Cardiff, and in care homes and hospital settings. Dr Mullins says, 'I have written a book – based on my practice and my PhD. My research explored multi-sensory ways for families to communicate and reconnect with their loved ones living with moderate dementia.' I have felt personally and professionally supported by Jane when we were colleagues at Cardiff University. Jane is a very dynamic individual, who was keen to ensure students were supported to understand how best to provide empathetic care for people who are living with dementia and their families. It was a pleasure working alongside Jane in this role and I hope to collaborate with her further to promote empathy, care and compassion in dementia care.

A strong self-development ethos underpins the whole of the training including reflective practice, enjoyable activities and access to a wellbeing hub with self-care and grief and bereavement resources – Helps develop a resilient, knowledgeable workforce that will contribute to staff retention. If or when care is no longer possible at home, there's advice, too, on choosing the right residential care. Jane Mullins' book is not published by a large, well-known publisher, so she says she has to work tirelessly to get this into the public domain. Use the box(es) to help stimulate and engage your care partner and leave them in key places on your home. If you have a young family you are undoubtedly going to be concerned about how the diagnosis will impact on them. Whilst the news is distressing, children and teens may actually be relieved to know that their loved one’s behaviour is caused by a disease and that they are not the cause. It is better to be open and honest with them so they can continue to feel trust towards you and they may very likely learn how to manage their emotions more effectively when you all pull together. Make sure that you explain to them about the diagnosis in a calm way and give some simple examples of how the dementia may affect your partner, such as forgetting names and losing words. Remember it is important to remind them of all that your partner is still able to do, so that you do not all focus too much on their difficulties. Give them plenty of hugs and reassurance and give them the opportunity to ask questions at all times and to express their feelings. Getting them involved in activities will help them stay connected to your partner and help them feel a sense of usefulness. Focus on what they can do.Janet agrees, ‘It is very easy to read, with lots of advice about everyday practicalities such as eating, washing, dressing and safety. Additionally. the author describes ways to keep the person stimulated and still able to enjoy life via music, art, memory books and boxes, and nature. She adds, ‘It would give a sense of hope and optimism by describing how some creative thinking and changing our reactions to a different response can make a huge difference to the carer and cared-for.’

Dr. Jane M. Mullins is a Dementia Nurse Specialist who has devoted over 30 years to the practice & study of dementia care. Chapter 11, Caring for the caregiver, stresses not ignoring the emotional, physical and social upheaval that you are experiencing. The tips about not coping alone and for looking after yourself are clearly described and valuable. Gather props – you will probably find most things around your home, involve your care partner in collecting interesting objects. Think about sensory props such as an oily rag for a car enthusiast or the smell of sun cream lotion. There are quotes from people with dementia and others, which provide relevancy and break up the chapters. I found it easy to read and absorb.’ ‘It is very easy to read, with lots of advice about everyday practicalities,’ says Janet. As a dementia nurse consultant with many years’ experience, Jane Mullins has a lot to share about good care. This book is her attempt to share it in a way that is helpful to anyone supporting a partner, relative or friend who has dementia.This will benefit all staff, patients and residents involved in social and health care, care homes, hospitals and home care. I am Jane M. Mullins and I have cared for people living with dementia for 30 years, in memory clinics, care homes, hospital and at home. I have supported care staff in all my roles and created and delivered Personal and Professional Development training for Health and Social Care students. My PhD research- A Suitcase of Memories explored multi sensory ways to help people living with dementia communicate with their loved ones and stay connected. I also work as a Researcher at the Awen Institute, Swansea University. When managing a Care Home, she has supported their transition from home to residential care using life stories as a guide to planning their life & care throughout their remaining years. The book is written mainly for the person caring for or sharing their life with a person living with dementia, from diagnosis to considering a care home,’ she says. Trainees will be able to understand how dementia may affect people and learn how to communicate and connect with them, how to help bring them joy while undertaking personal care, and so much more.