Content - Dementia - Living with a recent diagnosis - Topic guides at Dementia Australia Library Service

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Dementia Australia resources

The Dementia Guide by Dementia Australia
Publication Date: 2024
For people living with dementia, their families and carers. The Dementia Guide is an important resource for any person impacted by any form of dementia, of any age. The Guide contains information about the impact dementia may have on a person, the treatment, support and services they may need.
The 4th edition of this guide is now available to read online, download a pdf, listen to an audio version or request a print copy.

Recently diagnosed with dementia
In this video we are joined by Dementia Australia dementia advocate Nell Hawe speaking about her experience being recently diagnosed with younger onset Alzheimer's disease. Nell shares information to understand more about dementia and what help and supports are available. She shares her insight and some helpful strategies to support living positively and well with dementia. Nell is also joined by Scientia Professor Henry Brodaty speaking about the brain and the more commonly diagnosed types of dementia, offering further helpful strategies to live well.
Understanding Capacity and Decision Making
In this video Margaret Crothers, Manager of Advocacy and Regional Services at Seniors Rights Service, discusses what capacity and supported decision making means, what advocates do, and how they may assist you. Margaret is joined by Halil Ozbeyazli, Aged Care Advocate at Seniors Rights Service, sharing some different case scenarios which illustrate the work of an aged advocate in helping older peoples' voices be heard.
Driving and dementia presented by Doctor Theresa Scott
In this video we are joined by Doctor Theresa Scott, discussing some of the challenges of driving cessation for people living with dementia. Theresa provides strategies to help prepare for changes in driving status, information about balancing safety and independence, and provides valuable advice from research with people living with dementia and their families. You will gain knowledge in: how early planning for eventual driving retirement can be empowering, how talking about the meaning of driving and the loss of driving is an important part of adjustment and what a medical assessment of driving may look like and your legal responsibilities.
The Benefits of Dementia Counselling : Webinar
In this video we are joined by Dementia Australia Counsellor Robert Eddie, who provides information and insights into counselling. He talks about the potential benefits for people seeking support, to cope with the impact of dementia on their mental health and wellbeing.

If you have been diagnosed with dementia you may find the following information helpful:

Books

What I wish people knew about dementia by Wendy Mitchell
Publication Date: 2022
When Wendy Mitchell was diagnosed with young-onset dementia at the age of fifty-eight, her brain was overwhelmed with images of the last stages of the disease - those familiar tropes, shortcuts and clichés that we are fed by the media, or even our own health professionals. But her diagnosis far from represented the end of her life. Instead, it was the start of a very different one. Wise, practical and life affirming, What I Wish People Knew About Dementia combines anecdotes, research and Wendy Mitchell's own brilliant wit and wisdom to tell readers exactly what she wishes they knew about dementia.
Living Your Best with Early-Stage Alzheimer's by Lisa Snyder
Publication Date: 2011
Provides a thorough, practical guide on coping with the diagnosis, managing symptoms, finding meaningful activity, planning for the future, maintaining important relationships, participating in research, and much more. This book is a working guide to help the person with Alzheimer's feel empowered to move forward in life in light of this challenging diagnosis.
Talking Sense
In each chapter, we briefly describe the senses, the impact of ageing and the impact of dementia. Then we address the sensory problems that can occur. We cover the implications of environmental design and interior finishes with some tips on self-management for the person with dementia and advice for families and care partners. Throughout the book we include the experiences of people living with dementia. Later in the book we provide details of support and advice organisations and there is a ‘Further reading’ section featuring references (endnotes) from throughout the book.

Lived experience of dementia in the eCollection

Websites

Forward With Dementia website
This website gives people living with dementia and carers answers and practical actions to take after a dementia diagnosis.
This website was developed by people living with dementia, carers, clinicians and researchers. It will help you to better understand the diagnosis, come to terms with your feelings, and manage symptoms and changes. You can find practical information on driving, (or giving up driving), improving your physical and emotional health, how to get support and make plans for the future. Topics are tailored for people with dementia and carers, and pages and tools are downloadable and printable. There are a range of resources, links to other reputable websites, news items, and stories from other people and carers who have lived through the challenges of a dementia diagnosis but continue to live full and meaningful lives. A diagnosis is not the end, it is the first step in moving forward with dementia.
Diagnosis, treatment and care for people with dementia
A consumer companion guide to the Clinical Practice Guidelines and principles of care for people with dementia.
Dementia Alliance International
Dementia Alliance International is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . We seek to represent, support, and educate others living with the disease, and the wider dementia community. We are an organization that strives to provide a unified voice of strength, advocacy and support for our rights, individual autonomy and improved quality of life.
Dementia Tip-Share
If you want to learn from and share with others ‘in the same boat’ the Tip-Share website is worth visiting. It offers Tips, work-arounds and short cuts all contributed by people with dementia themselves. The website aims to be clear, easy to use, searchable and informative.
Dementia Enabling Environments / Alzheimer’s Western Australia
The Dementia Enabling Environment Virtual Information Centre provides practical tips, guides and resources to help make the places where we live more dementia enabling.
It can help you develop an enabling environment for a person living with dementia, making a significant difference to their independence, quality of life and wellbeing.
Tips for Living Alone With Early-Stage Dementia - National Institute on Aging (USA)
Have you, or has someone you love, recently been diagnosed with mild cognitive impairment, early-stage Alzheimer’s disease, vascular dementia, Lewy body dementia, or a frontotemporal disorder? Do you worry about how to manage if you live alone? If so, these tips offer ways to help cope with changes in memory and thinking, prepare for the future, and stay active and engaged.

Videos and Podcasts

Hold the Moment Podcast by Dementia Australia
Hold the Moment is a podcast by people living with dementia. Episode 1 focuses on living with a recent diagnosis: Where to from here – What to do after being diagnosed with dementia.
Talking Dementia with Heckle & Jeckle - Podcast
Heckle and Jeckle are two Mental Health professionals diagnosed with Younger Onset Dementia. They are funny, serious and smart as they explore all facets of daily life living with this baffling and challenging disease.
Let's Talk About: Brain health and living well with dementia - Podcast
Dr. Helena Dolphin Specialist Registrar in Geriatric Medicine and Graham Knight, Clinical Nurse Manager talk about the risk factors associated with dementia and the important things that you can do to bolster the brains ability to protect a person who has dementia. The contributors also talk about the anxiety that can come with a diagnosis of dementia for a person and their loved ones, practical things you can do to help protect the brain and changes you can make to keep a loved one safe.
Discovering Dementia Podcast by Penny Bell
Penny Bell’s podcast provides a relatable and educational source of information about dementia. Following Penny's mother's diagnosis of mixed dementia this is a story of how one person's dementia story led to a journey of discovery.
Dementia and Me BBC Radio Podcasts
Titles include:
• "It wasn't funny at the time" Reactions to a dementia diagnosis, and what it's like to tell people you have it.
• "Who's looking after you?" Does your cultural background affect your understanding of dementia?
• "Dementia isn't a mental health condition" Is there anything you can do to reduce your risk of getting dementia?
• "What's my reality? What's your reality?" How technology can help your life if you have dementia
and many more...