DVD – DISORDERED
A three-part documentary on Frontotemporal Dementia (FTD). This documentary shows how the lives of three patients with Frontotemporal Dementia have changed dramatically and how this has affected the people around them.
1. Living with FTD (19 mins)
Henk (53 ) had a high-ranking position when he started to make the wrong decisions due to FTD. Dismissal was impending. He has turned into a passive, taciturn man, so his wife Cynthia tells the story of what happened. With a lot of dedication, the assistance of a homecare agency, and a day-treatment programme, she has managed to look after her husband in the home situation. Minor moments of contact give her the energy to cope.
2. The Rhythm of Rein (24 mins)
Rein (49) has lost his flexibility and has developed compulsions due to FTD. This is not easy for people around him. His wife Sonja quit her job to look after him and has made her own life secondary to his. As an adolescent, their daughter Jolien responded vehemently to her changing father, but, since she found a place of her own, she has been able to put things in perspective and to regard him with greater mildness.
3. Prima Donna (31 mins)
Agnes (57) suffers from semantic dementia, a type of FTD in which patients gradually lose their grip on the meaning of words and objects. She can no longer empathise with other people, has developed peculiar rituals, and displays compulsive and even childish behaviour. For her husband Piet, as for other members of her family, this has become a considerable burden. The nursing home she goes to has composed a special daycare programme for her that makes her feel good.
Klaas Jansma is a psychologist and involved in the Dutch National Steering Committee for Young People with Dementia. Pieter Wolswijk is a geriatric psychologist and freelance filmmaker. This documentary is an initiative of the Intercollegiate Group of Geriatric Psychologists in the Arnhem Region, the Netherlands.
This is a reading list for carers with books on dementia in general, and some specific on FTD. These books have been recommended to us by other carers. Although most focus on Alzheimer’s disease, some of the same issues arise when given a diagnosis of frontotemporal dementia.
We hope you will find this information helpful. Please get in touch with Sarah Homewood if you would like to recommend a book or a website
Younger Onset Dementia: A practical guide
We have written a free booklet on Younger Onset Dementia in association with Alzheimer Australia, which can be downloaded from the link below. This booklet is aimed to be a practical guide for carer’s of patients with younger onset dementia, including frontotemporal dementia. It provides background information on the diseases as well as practical information on caring and where to find support & more information. We hope you will find the information in the booklet useful. Please get in contact with us if you have any recommendations for future editions.
Green Vanilla Tea
Type: Paperback: 247 pages (2013)
Publisher: Finch Publishing Sydney
ISBN Number: 9781921462993
Winner of the 2013 Finch Memoir Prize, this book is written by the wife/carer of a man with Frontotemporal Dementia, who also develops Motor Neuron Disease, living in Brisbane, Australia. This is a moving and inspiring read about the experience of FTD-MND on a young family and community.
“This book sensitively brings to life the heartache, humour and love that is involved in living with dementia” (Ita Buttrose, OA, OBE, President of Alzheimer’s Australia).
What If it’s Not Alzheimer’s? A Caregivers Guide to Dementia
Lisa Radin, Gary Radin
Type: Paperback: 300 pages (October 1, 2003)
Publisher: Prometheus Books
ISBN Number: 1591020875
Frontotemporal dementia (FTD) is one of the largest groups of non- Alzheimer’s dementias. This guide for caregivers covers the medical aspects of FTD as well as practical issues relating to day-to-day care. Fifteen contributions from medical professionals and experienced caregivers address such topics as the stages of the disease; the benefits of speech, occupational, and physical therapies; and the ways in which FTD affects relationships with others. Several chapters are devoted to caregiver resources such as adult daycare centers and assisted living facilities.
The Banana Lady: and other stories of curious behavior and speech
Type: Paperback: 238 pages (2006)
Publisher: Trafford Publishing
ISBN Number: 1425101267
The subject of this book is a stranger than fiction change in personality, behaviors and relationships, including the gradual loss of language and the meaning of words occurring in middle age.
The book is aimed at the lay reader interested in brain and behaviour, professionals who diagnose and treat neurological disease, and the caregivers who sometimes suffer as much as the patients if not more. Technical jargon is avoided or explained when necessary. The stories are all factual, and each is chosen to represent one of the typical behaviors, but many of these are shared and recur throughout. The book can be read as a collection of neurological tales or as a case-based guide for the puzzling phenomenon of frontotemporal dementia, containing clinical and scientific information.
Nineteen lives are chronicled as told by caregivers, each selected for the drama and strangeness of behaviour, personality or cognition. In each chapter the biology of the underlying brain disorder and the social and cultural aspects of the behaviour change are explored. There is a special chapter: “Tips for caregivers” and three final chapters dealing with the biology, the genetics and the treatment of the disease in clear explanations. References, footnotes and a glossary provide additional, optional information.
No more apples for Tom
Type: Paperback: 101 pages (2007)
Publisher: Pawprint Publishing
ISBN Number: 978-0-9548298-4-1
This is a very moving personal story as the wife of a patient with FTD.
Dancing with Dementia: My Story of Living Positively with Dementia
Type: Paperback: 200 pages (January 28, 2005)
Publisher: Jessica Kingsley Publishers
ISBN Number: 184310332X
Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences. This book is a vivid account of the author’s experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life nevertheless, and explains how professionals and carers can help. Christine Bryden makes an outspoken attempt to change prevailing attitudes and misconceptions about the disease. Arguing for greater empowerment and respect for people with dementia as individuals, she also reflects on the importance of spirituality in her life and how it has helped her better understand who she is and who she is becoming.
Dementia: Alzheimer’s and Other Dementias at Your Fingertips
Harry Cayton, Nori Graham, James Warner
Type: Paperback: 234 pages (December 1, 2001)
Publisher: Class Publishing
ISBN Number: 1859590756
Dementia: Alzheimer’s and other Dementias at your fingertips is a practical guide giving comprehensive, medically accurate information on Alzheimer’s disease and other forms of dementia in an easy to understand format. This new fully revised and updated edition outlines the different care options that are available and suggests a variety of strategies for coping. It tells people where to go for help and guidance on legal, financial and other matters and gives advice on how to prepare for the future and make difficult decisions.
Keeping Busy: Handbook of Activities for Persons with Dementia
Nancy L. Mace (Foreward), James R. Dowling
Type: Paperback: 192 pages (July 1995)
Publisher: The Johns Hopkins University Press
ISBN Number: 0801850592
In Keeping Busy, James Dowling describes a variety of activities designed to bring meaning and enjoyment to the lives of persons with dementia. The activities are organised by general categories such as music, exercise, horticulture, pets, humour, and social events. The largest section deals with communication and includes word games that help people to make the most of their remaining verbal skills. The description of each activity includes step-by-step instructions, as well as tips on how to adapt it for small or large groups, for individuals at home or in an institution, or for people who are bedridden.
The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s Type Dementia
Type: Paperback: 392 pages (January 2002)
Publisher: Health Professions Press
ISBN Number: 1878812815
This extraordinary book shows caregivers how they can interact successfully with people with dementia by avoiding reality orientation and instead focuses on underlying emotional needs. Based on the principles of Erik Erikson and subsequent decades of work with disoriented older adults, the simple technique of Validation are easy to learn, take just minutes a day, and can be used by family and professional caregivers. Let the powerful techniques of internationally recognised expert Naomi Feil help you to reach confused older adults by establishing respectful, loving relationships that break the silent withdrawal.
Remind Me Who I am, Again
Type: Paperback: 320 pages (March 30, 1999)
Publisher: Granta Books
ISBN Number: 1862072442
In 1993 Linda Grant’s mother, Rose, was diagnosed with dementia. With Rose’s memory deteriorating, a whole world was in the process of being lost. In this work she looks at questions of identity, memory and autonomy.
The Vanishing Mind: A Practical Guide to Alzheimer’s Disease and Other Dementias (Psychology)
Leonard L. Heston, June A. White
Type: Hardcover: 191 pages
Publisher: W.H. Freeman & Company (April 1, 1991)
ISBN Number: 0716721317
Heston and White offer sympathetic and practical advice for both patient and family in the areas of health care insurance, treatment, and ethical decisions. The merits and drawbacks of hospitals, nursing homes and day care settings for those suffering from dementia are covered. Annotation copyright Book News, Inc. Portland, Or.
Caring for Maria: An Experience of Successfully Coping With Alzheimer’s Disease
Type: Paperback: 240 pages
Publisher: Element Books Ltd (September 1, 1994)
ISBN Number: 1852305029
A comprehensive and in-depth account of what it means to be in the front line of caring for someone with Alzheimer’s.
Living in the Labyrinth: A personal Journey through the Maze of Alzheimer’s
Type: Paperback: 176 pages
Publisher: Delta (October 1, 1994)
ISBN Number: 0385313187
Diana’s personal journey through days of darkness and light, fear and hopes gives us new insight into a devastating illness and the plight of its victims, complete with a list of early warning signs, medical background, and resources for further information. But Diana’s story goes far beyond a recounting of a terrifying disease. It portrays a marriage struggling to survive, a family hurt beyond words, and a woman whose humour and intelligence triumph over setbacks and loss to show us the best of what being human is.
36 Hour Day: Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses and Memory Loss in Late Life
Paul R. McHugh (Foreward), Nancy L. Mace, Peter V. Rabins
Type: Paperback: 352 pages (August 31, 1999)
Publisher: The Johns Hopkins University Press
ISBN Number: 0801861497
It’s called The Family Guide to caring for Persons with Alzheimer’s Disease, related Dementing Illness and Memory Loss in later life, and has become THE classic on Alzheimer’s Caregiving. This is the complete “Caregivers Survival Guide” manual. You should not be a caregiver for a dementia victim without this! Truly extensive in an easy to reference format, it covers all the day to day stuff, plus the background information and examples. One section hit home for me. What would we do if something happened to me? This is Chapter 9, short and direct. Are you prepared?
The Selfish Pig’s Guide to Caring
Hugh Marriott, David Lock (Illustrator)
Type: Paperback: 350 pages (October 24, 2003)
Publisher: Polperro Herritage Press
ISBN Number: 0954423313
Six million people in the UK provide unpaid care for disabled or elderly relatives or neighbours, often unnoticed. Their job is long, lonely and hard, yet there is limited support and no formal training. As a result, carers suffer frequent damage to physical and mental health and are liable to feelings of guilt bought on by fatigue and isolation. Hugh Marriott, a carer himself, has written this book for them – and also for the rest of us who hadn’t realised what went on behind closed those doors. The Selfish Pig’s Guide to Caring airs topics such as sex, thoughts of murder, coping with incontinence and dealing with friends and officials who fail to understand. It’s a must-read for anyone involved with caring.
Challenging Behaviour in Dementia: A Person-centred Approach (Winslow Editions)
Type: Paperback: 224 pages (April 2000)
Publisher: Speechmark Publishing Limited
ISBN Number: 0863883974
Understanding socially disruptive behaviour in dementia is never easy and treatment is often characterised by policies of control and containment. This volume disputes the traditional medical model of dementia and asserts that if we reach behind the barrier of cognitive devastation and decipher the cryptic messages, it can be shown that much behaviour is not meaningless but meaningful. It contrasts the medical interpretation that sees anti-social behaviour as mere symptoms of disease with a person-centred interpretation that resonates change and resolution, and offers a radical and innovative interpretation of challenging behaviour consistent with the new culture of dementia care, focusing on needs to be met rather than problems to be managed.
Introducing Dementia: The Essential Facts and Issues of Care
Type: Paperback: 144 pages (March 2001)
Publisher: Age Concern Books, Age Concern England
ISBN Number: 0862422833
David Sutcliffe takes a positive, realistic and holistic approach and he never loses sight of the person behind the disease. He introduces practical ideas and techniques to meet their physical, psychological and emotional needs, as well as coping with ‘problem behaviour’ and safety issues. The needs of carers too are acknowledged, and he includes many useful addresses and sources of further information, training and support available. This book would be an invaluable resource for lay and professional carers and anyone interested in dementia care.
Living With Lewy’s; Empowering Today’s Dementia Caregiver
Amy J. Throop and Gerald S. Throop
This book is targeted more towards caregivers of patients with Lewy body disease, but it has also a lot of general dementia caregiving information. The book can be ordered via the below internet link:
NeuRA is coordinating the Sydney site for the DIAN (Dominantly Inherited Alzheimer Network). This study sets out to look for biological changes that occur in people before they develop the Alzheimer’s symptoms such as memory loss. Over the last two years, NeuRA has been working on a clinical trial program aimed at preventing the symptoms of Alzheimer’s by removing amyloid […]