There is an abundance of literature available on the subject of Alzheimer’s disease and dementia generally. Considerably less which focuses specifically on Frontotemporal dementia.
Whilst it is impossible to recommend one particular book or DVD that will suit all readers equally, the following have been endorsed by members of the support group as helpful and worthy of a read.
1] ‘The Selfish Pigs Guide to Caring – A practical guide for carers’
by Hugh Marriott, 2003 Edition, (1st ed)
Published by Piatkus
2] ‘The Selfish Pig’s Guide To Caring: How to cope with the emotional and practical aspects of caring for someone’
by Hugh Marriott , 2009 (revised edition)
Published by the Little Brown Book Company
Six million people in the UK, often unnoticed by the rest of us, provide unpaid care for disabled or elderly relatives, friends or neighbours. 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.
Hugh Marriott has written these books for them – and also for the rest of us who don’t know what being a carer is all about. His aim is bring into the open everything he wishes he’d been told when he first became a carer. And he does. The book airs such topics as sex, thoughts of murder, and dealing with the responses of friends and officials who fail to understand.
3] ‘Losing Clive to Younger Onset Dementia – one family’s story’
By Helen Beaumont
Published by Jessica Kingsley Publishers, 2009
Clive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before. Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with Younger Onset Dementia. Younger Onset Dementia is comparatively rare, but not that rare. This story is for the family and friends of people with the condition, for the people themselves, and for the professionals working with them.
4] ‘The Banana Lady’
By Andrew Keresz
Published by Trafford Publishing, 2006
Andrew Kertesz uses 19 case studies to describe the variations within a disease that he prefers to refer to as Pick Complex. Though many of the symptoms described in the case studies overlap with those highlighted in other chapters, each chapter is intended to specifically highlight one characterization of the disease, how it might be manifested, and how it will differ from other diseases that have a few similar symptoms. Symptoms that are highlighted include: food fads (craving sweets and bananas, for example), gluttony (eating whatever is in front of them just because it’s there… even if it’s on a nearby stranger’s plate), compulsive behaviors, aphasia (loss of language), semantic memory loss (forgetting what a familiar word means), roaming and restlessness, having an “alien hand”, supranuclear palsy (motor difficulties), hypersexuality, senile squalor (failing to bathe, change clothes, wash dishes), social problems (like being in trouble with the law), inappropriate jocularity, punning and singing, constantly repeating words or phrases, stereotypic routines, inability to organize or finish tasks, lack of concern and insight, childishness, and change in personality.
This book also covers the history of the disease, its physiology and prevalence as well as providing tips for caregivers to help them navigate all that the diagnosis typically entails.
5] What if its not Alzheimer’s? A caregivers guide to dementia’
Edited by Lisa Radin and Gary Radin
Published by Prometheus Books [First published 2009, Revised edition , 2014]
Lisa Radin and her son Gary provided complete in home care for husband and father Neil Radin over a 4 year period. This book provides a comprehensive guide to dealing with FTD. The contributors are either specialists in their field or have exceptional hands-on experience of FTD.
The book covers medical facts, clinical care issues, daily care routine and caregiver resources, research developments and future treatment possibilities.
5] ‘The Dance: Our Journey Through Frontotemporal Degeneration’
By Deborah G Thelwell
Published by CreateSpace Independent Publishing Platform, 2014
The Dance is a lively memoir of a couple’s five-year journey FTD. Deborah and Alan’s story is told with honesty, humour and love. The Dance illustrates of how the ‘normality’ of Deborah and Alan’s life was stolen away by FTD. They danced together for almost thirty-eight years until Alan’s death in 2012. How they handled this challenge together and with the help of their family and friends shines some light on this uncommonly diagnosed disease.
6] ‘Assessment and Therapy for Language and Cognitive Communication Difficulties in Dementia and other Progressive Diseases’
By Anna Volkmer
Published by J and R Press Ltd, 2013
This text includes speech therpaists within its likely audience, and addresses language and cognitive communication, describing assessment and intervention, across impairment-based and functional approaches. The book – provides an update on some of the current evidence around assessing and managing dementia – shows how this applies in a clinical setting – guides investigation into which approaches are available and where to look for ideas.
7] The American Association of FTD [ www.theaftd.org ] is an American frontotemporal dementia site which hosts a wealth of resources including down loadable versions of the following booklets:
The Doctor Thinks It’s FTD: What Now?’ (opens pdf)
‘What About the Kids?’ (opens pdf). A booklet which is relevant in many ways for children experiencing any type of dementia in a parent or family member
Understanding the Genetics of FTD (opens pdf)
‘Planning for Hope – Living with Frontotemporal Disease‘ is a DVD which is also available with a running time of 53 minutes. For more information visit www.ftdplanningforhope.com