Resources For People With Alzheimer's Disease And Carers
Listed below are helpful resources for a person with Alzheimer's disease and their carer, which aim to provide a wealth of information and advice for living with the disease and for caring for someone with the disease. Some of the resources listed below also help people with the disease and their carers to better understand Alzheimer's disease and how to live a meaningful life with the disease.
Alzheimer's Australia have nearly 100 Help Sheets available free of charge to people with dementia, their families and carers. These can be accessed through the website www.alzheimers.org.au or by contacting the National Dementia Helpline on 1800 100 500.
Alzheimer's Australia: the main organisation providing support and advocacy for Australians living with dementia, and their families and carers. State-by-state links are available on this website for contacts across Australia.
Dementia Advocacy and Support Network is a worldwide organisation by and for those diagnosed with dementia. It is an internet based network established to provide support, and a forum for the exchange of information for persons with dementia.
The Fisher Center for Alzheimer's Research Foundation supports research focused on the cause, care and cure for Alzheimer's disease as well as supporting the public with education. The website provides information about current Alzheimer's research, as well as information about dementia and caring.
Carers Australia and the network of carers associations in each state and territory provide important services like counselling, advice, advocacy, education and training to people caring for a family member or friend. The website provides links to the state and territory organisations.
A website dedicated to sharing and celebrating all the small, yet powerful things you can do to stay healthy.
For more useful information on dementia and Alzheimer's disease, visit the following websites:
Alzheimer's New Zealandwww.alzheimers.org.nz
Alzheimer's Society UKwww.alzheimers.org.uk
Alzheimer's Association USAwww.alz.org
Alzheimer's Society Canadawww.alzheimer.ca
Many books are now available that portray Alzheimer's disease with empathy and insights, for the person with the disease, and their families and carers, instead of mere clinical facts on the disease. Check your local bookshop and library.
To browse book titles and purchase online, visit:
- alz.seekbooks.com.au (Alzheimer's Australia Online Bookshop)
Guides to caring
The 36-hour day: a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life. Fourth edition by Nancy L. Mace and Peter V. Rabins, Johns Hopkins University Press, USA, 2006. A family guide to caring for people with dementia. It covers all aspects of dementia including assessment, coping strategies, legal issues, residential options, carer health, children and teenagers, and research.
Alzheimer's early stages: first steps for family, friends and caregivers. Second edition by Daniel Kuhn, Hunter House, USA, 2003. Medical facts and everyday issues presented in a thorough, well-organised style help make this an excellent reference book. Practical suggestions to give good care and take good care of yourself as a carer or family member.
Learning to speak Alzheimer's: a groundbreaking approach for everyone dealing with the disease by Joanne Koenig Coste, Mariner Books, USA, 2004. Unveiling the 'habilitation' approach, this book is designed to enable the person with Alzheimer's disease to maintain dignity and encourage use of remaining skills to support a sense of self-worth and independence. A practical, positive and compassionate read.
The complete guide to Alzheimer's-proofing your home by Mark Warner, Purdue University Press, USA, 2000. This book provides information on how to ensure that the person with Alzheimer's will be safe and secure inside and outside the home. It also gives a detailed list of potential problems related to Alzheimer's and practical information on how to cope with those problems in the home setting.
In search of the Alzheimer's wanderer: a workbook to protect your loved one by Mark Warner, Purdue University Press, USA, 2005. Each year, there are many people with Alzheimer's disease or a related dementia who leave the safety of their homes and families, unable to find their way back. This workbook outlines steps that families can take to find their loved ones if they are one day discovered missing.
Personal accounts of dementia written by carers
Hazel's journey: a personal experience of Alzheimer's disease by Sue Pieters-Hawke and Hazel Flynn, Pan Macmillan, Australia, 2004. Hazel's daughter tells the full story of her mother's life since being diagnosed with Alzheimer's disease, including her fear and anger, her decision to go public and the gentle happiness in her life now.
Losing Clive to younger onset dementia: one family's story by Helen Beaumont, Jessica Kingsley Publishers, UK, 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 the next six years living with Clive and his illness.
Remember me Mrs V? by Tom Valenta, Michelle Anderson Publishing, Australia, 2007. This is a powerful story describing the author's daily agony of seeing his wife deteriorate after she was diagnosed with Alzheimer's disease at the age of 54. He tells not only his very personal story but the deeply moving experiences of thirteen other carers who have travelled similar journeys.
Books written by people with dementia
Alzheimer's from the inside out by Richard Taylor, Health Professions Press, USA, 2007. Receiving a diagnosis of Alzheimer's disease profoundly alters lives and creates uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Diagnosed with Alzheimer's disease at age 61, the author shares his journey in this collection of essays.
Dancing with dementia: my story of living positively with dementia by Christine Bryden, Jessica Kingsley Publishers, UK, 2005. The author was diagnosed with Alzheimer's disease at 46 and re-diagnosed with frontal lobe dementia when she was 49. This book is a thoughtful exploration of how dementia challenges our ideas of personal identity. It provides 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.
Losing my mind: an intimate look at life with Alzheimer's by Tom DeBaggio, Free Press, USA, 2003. A moving, unusual memoir by a man facing his own daily struggle with the onset of Alzheimer's disease (diagnosed in 1999 at age 57) and how he shares his experience with it before it becomes too late. Remarkable, intimate writing from a patient's point of view, this book combines personal experiences with sobering facts about Alzheimer's disease.
Dementia risk reduction
Maintain your brain: the latest medical thinking on what you can do to avoid dementia by Michael J. Valenzuela, ABC Books, Australia, 2009. Using the latest research, this book explains just what dementia is and what causes it, and most importantly, what you can do to avoid it. It explains the importance of having a healthy heart and the link between vascular health and dementia.
Understanding dementia, Alzheimer's Australia Vic, 2005. An introductory video for those who would like to know more about dementia. 19 minutes in length, available in DVD and VHS format. Available in English, Arabic, Cantonese, Croatian, Greek, Italian, Khmer, Macedonian, Mandarin, Polish, Serbian, Spanish and Vietnamese.
Effective communication with people with dementia, Alzheimer's Australia, 2006. This is a useful video which demonstrates a number of communication techniques and strategies to use with people with dementia. 21 minutes in length.
Understanding the brain and behaviour, Alzheimer's Australia, 2004. Dr Helen Creasey, Geriatrician, Neurologist and Medical Advisor to Alzheimer's Australia presents a clear and easily understood explanation of the changes that occur in the brain and the impact this may have on behaviour. 37 minutes in length, available in DVD and VHS format.
These resources are provided for your convenience. Inclusion of any reference to any third party product or services does not constitute or imply an endorsement by Pfizer.