Portrait of Prof Olivier Piguet

Carers, Patients and Volunteers

CLINIC INFORMATION

Welcome to our FRONTIER Carer Support Page.

RECENT NEWS:

  • Presentations from 2016 FTD Family and Support Person Information Day:
  • NeuRA Frontier now have a Facebook page, where you can keep up to date with relevant information and find out about resources, supports and research developments. The address is: www.facebook.com/neurafrontier
  • ‘The Many Faces of Dementia’, is a free online course created by an Alzheimer’s Research UK Research Fellow at UCL (University College London), Dr. Tim Shakespeare. The course commences on March 14 and aims to increase awareness and understanding of some of the less common forms of dementia, including Frontotemporal Dementia. This course will be valuable for anyone with an interest in dementia. Learn more about the course and sign up here: www.futurelearn.com/courses/faces-of-dementia
  • Care UK have developed a new resource, Listen, Talk, Connect, to assist families and carers to communicate with their loved ones who are living with dementia. Communicating with a family member who has dementia can be challenging, and at times heart-breaking. This resource has some valuable information to help support this aspect of relationships.
  • Alzheimer’s Australia have launched a new website “Start2Talk” aiming to assist and encourage people to plan ahead regarding their wishes and choices for their future, should they be unable to express these wishes in later life. It is a practical and comprehensive resource that will hopefully prompt many Australians to start talking and acting.

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Click on the links below to read more on your chosen topic:

Challenging Behaviours: Tips for the Carer
Practical Advice For Everyday Activities
Community Resources and Support
Planning for the future
The caring role and the family
Carer Support Groups
Reading and DVD list for carers
Websites for carers
Relevant Newsletters

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The Australian Frontotemporal Dementia Association

A diagnosis of frontotemporal dementia (FTD) may initiate a number of questions and concerns for people with the diagnosis and their family and friends. There are many people available to assist you to find information (regarding the disease and practical issues) and adjust to the diagnosis.

FTD presents in two ways (a behavioural variant and a language variant). Therefore symptoms vary for different people. We have provided some practical hints regarding some of these symptoms on these links: behavioural symptoms and practical problems in everyday life. Remember that we are all individuals and these suggestions are general. If you need more assistance please contact one of the associations close to you.

We think that meeting with other carers can also be very helpful. There is a specific FTD carer’s group in Sydney, coordinated by carers, which holds regular meetings. The date of the next meeting can be found here.

It is important for you to look after yourself if you are a carer and to have the support you need to do this. This will help you to provide the best care for the person with FTD as well as maintaining your physical and psychological health.

Frontier, in association with Alzheimer’s Australia has produced a booklet on Younger Onset Dementia , which you can download from the link below. The Alzheimer’s Australia website also has a subsection on Younger Onset Dementia with helpful information.

The Eastern Cognitive Disorders Clinic in Melbourne has also developed a valuable resource for carers and patients, The FTD Toolkit (link below), which provides detailed information on FTD, diagnosis, management and resources.

Younger Onset Dementia: A practical guide (PDF)

The FTD Toolkit

Alzheimer Australia – Younger Onset Dementia

Related Downloads
NSW Safely Home Program (PDF)

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Children… honest and insightful. Their innocence warms the heart. But what words do you use to explain to a child that daddy has an incurable brain disease? What words tell them that in time he may not be able to play football in the park, let alone feed himself? What words help them understand that in the later stages, dementia may also strike? Aged just 36, this was the reality that faced Steve Hartley. Parkinson's disease didn't care he was a fit, healthy, a young dad and devoted husband. It also didn't seem to care his family had no history of it. The key to defeating Parkinson's disease is early intervention, and thanks to a global research team, led by NeuRA, we're pleased to announce that early intervention may be possible. Your support, alongside national and international foundations Shake it Up Australia and the Michael J Fox Foundation, researchers have discovered that a special protein, found in people with a family history of the disease increases prior to Parkinson’s symptoms developing. This is an incredible step forward, because it means that drug therapies, aimed at blocking the increase in the protein, can be administered much earlier – even before symptoms strike. The next step is to understand when to give the drug therapies and which people will most benefit from it. But we need your help. A gift today will support vital research and in time help medical professionals around the world treat Parkinson’s disease sooner, with much better health outcomes. Thank you, in advance, for your support.  
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