Information about dementia and being a carer
What is Dementia?
Dementia impacts close to half a million Australians and almost 1.6 million Australians are involved in their care. The number of people living with dementia is set to double in the next 25 years.
Only a doctor can diagnose dementia. Dementia is a general term to describe problems with progressive changes in memory, thinking and behaviour. Dementia can happen to anybody, but it becomes more common over the age of 65, and especially over the age of 75 but is not a normal part of the ageing process. It remains the number one cause of disability in Australians aged over 65 years and the second biggest cause of death overall. People living with dementia can live active and fulfilling lives many years after diagnosis but the quality of life can be impacted by the physical effects of the disease and the way society responds.
Understanding dementia and its causes, consequences and care options can help promote appropriate support to enhance quality of life.
- Dementia Australia has on line educational resources for people living with dementia, family friends and carers.
- Dementia Australia help sheets are available to read, download and print as PDF files here
- To receive a free dementia information toolkit via email click here and provide your details.
- To access education programs on offer you can review here.
- In 2023 Dementia Australia launched a series of videos about Dementia including personal experiences, diagnosis and support. To view the campaign click here
Dementia Action Week
Dementia Australia research shows 81 per cent of those with a loved one living with dementia felt that people in shops, cafes and restaurants treated people with dementia differently. That’s why this Dementia Action Week we're encouraging everyone to take a few simple actions to create a dementia-friendly future for all Australians. A dementia-friendly future is a future that is better for everyone in the community. You can sign a pledge and learn more about how to create a dementia friendly future that is better for everyone. The theme for 2024 is 'Act Now for a Dementia-Friendly Future'.
The Forward with Dementia website provides up-to-date information from clinicians and researchers, practical suggestions and stories from people with dementia and carers, and tools to help people manage living with dementia. The website is the result of a collaboration between the University of NSW and the Centre for Healthy Brain Ageing. Within the website there are downloadable resources, stories from carers or people living with dementia, and latest news.
Events
Healthy Brain Ageing talks 2023/2024
Presentations by The University of Sydney delivered by Prof Naismith's team, Healthy Brain Ageing Talk :
- Tues 17 September 2024, 10am-12:30pm at Newtown Neighbourhood Centre
- Wed 20 September 2023 10am-11am at Newtown Neighbourhood Centre
- Fri 22 September 2023 1pm-2pm at Hannaford Community Centre, Rozelle
Dementia Australia
A range of events throughout the year across Australia both online and in-person. Click here to find out what's on
Brain and Mind Center - NeuroMusic Collaborative Study
Can we slow the rate of cognitive decline to avoid dementia? The Spencer-Bennett NeuroMusic Collaborative aims to find out. This philanthropic gift from Barbara Spencer has enabled psychologists, bioengineers, musicians, imaging experts and neurologists to collaborate on a ground-breaking research program. This study will test whether music training is a successful intervention for people experiencing memory difficulties. Click here to find out more. If you would like to participate in this ground-breaking study, please visit ‘Are you eligible to participate?‘ or contact us at neuromusic.info@sydney.edu.au or 9351 0755.
Seniors programs
Regular programs in the community all year round.
Where to go for help
It is always recommended you speak to a GP if you have concerns and they may refer you to a specialist Geriatrician. If you have a diagnosis other key phone numbers include:
Baptist Care
Dementia advisors (PDF 1.4MB) provide free support to people living with dementia and their carers. For new clients, please contact us on 1300 275 227 or email ask@baptistcare.org.au This service is funded by the Commonwealth Home Support Program.
Carer Gateway
To get the support you need contact the Carer Gateway on 1800 422 737. Support includes free phone counselling, connecting with others via support groups or joining on line , coaching, education and referrals. Click here (PDF 1.4MB) for information about the Carer Gateway Community Forum, a safe and anonymous online space that allows Carers over 18 years to share experiences, gain support and learn new strategies to help them in their caring role. This Australian Government initiative is proudly managed by CatholicCare Sydney. Other resources provided by Carer Gateway include:
The Carer Gateway Counselling Service is a free service for carers. Each weekday, from 8am to 6pm, their professional counsellors are waiting to talk through the concerns you have and how you feel about your carer role. To learn more about how counselling helps carers, watch our video “Introducing the Carer Gateway Counselling Service” on this page. To use the service, simply select ‘Request a Callback’, fill in your details and staff will call you back within one business day. You can also call 1800 422 737 and Select Option 2 to speak to their team.
Carer Skills: These courses provide information, insights and practical tips to help carers develop new understanding and skills important in their caring role. Each free online self-paced learning modules takes approximately 20–40 minutes to complete and you can download your responses to questions in the module to use as a resource and reminder.
Dementia Australia
The National Dementia Helpline free call on 1800 100 500 and operates 24 hours a day, seven days a week, 365 days a year. Webchat: dementia.org.au/helpline/webchat
Email: helpline@dementia.org.au
If you require the assistance of an interpreter, please call the Translating and Interpreting Service on 131 450.If you are deaf or have a hearing or speech impairment, please call the National Relay Service on 133 677.
Face Dementia
The Face Dementia website is a resource to help you learn about the signs, recognise them in yourself or others, and start a conversation about visiting a GP to get help. Click here.
LGBTQ+ People and Dementia
This guide was prepared by Dementia Australia for LGBTQ+ people living with dementia, their families, friends and care partners. This guide is based on discussions, consultations and input from LGBTI people. Click here for more information.
Sydney Local Health District
Aged Health Medical Specialist, 8am - 8pm, Monday to Sunday. Phone: 1800 722 276
My Aged Care
A gateway to help at home and to live independently in the community. For assessment and referrals -Phone: 1800 200 422
Day Centres
Mindful Dementia Care (MDC) - 3Bridges - Ashfield
A person-centred, comprehensive and integrated dementia care program offering practical, emotional and social support to people living with mild to moderate dementia (over65years of age) and their family carers. Family carers can participate in the program in the form of information sessions, discussion groups or seek assistance in managing practical, emotional and social aspects of dementia care. Various social activities/ events are available for both, the person living with dementia and their family carers. To find out more contact 3 Bridges on 1300 327 434 or download a flyer here (PDF 3.9MB)
The centre is open from Monday – Friday
Attendance: 10am – 2pm
Morning tea and lunch will be provided.
Kalparrin Dementia Day Centre
Respite care 7 days per week for people who have moderate to severe dementia and carer support. Phone(02)9743 6549
Web: www.yourcare.org/supplier/profile/kalparrin-day-care-centre-inner-west
Lucan Care Community Centre Day centre
Services for frail older people and people with dementia. Multicultural groups (Italian, Greek and Russian) and carer supports including transport. Phone: (02)9564 2022 Web: www.unitingcare.org.au
Address: 158 Lilyfield Road Lilyfield
Group Homes Australia
Group Homes Australia do dementia differently. Fuelled by a deep sense of purpose, their philosophy revolves around creating small, intimate environments that feel just like home and are integrated within local communities. The GHA team work tirelessly to ensure that each and every person can cherish life’s moments and live well with dementia. GHA provides 24/7 dementia care in their Sydney-based homes with personalised R&R short stays (respite), long-term stays and end of life care. With a mission to change the conversation around dementia, GHA also hold regular in-house and community education sessions, that are aimed at supporting people living with dementia and their families and friends, sharing innovative strategies and tools to improve quality of life beyond a diagnosis. Their 5-day live in Rementia Together Retreats are funded by the Australian Government, providing people in the early stages of dementia and their support partners hope beyond their diagnosis, with education, tool and strategies, along with the opportunity to connect with others in a supportive and caring environment, both at the retreat and into the future.
Click here for more information
Learn more by phoning 1300 015 406.
Programs
Inner West Neighbour Aid - Living Well with Dementia Program (LWWD)
A series of workshops presented by Inner West Neighbour Aid (IWNA) held at the 5 Senses Garden on the first and third Thursday of the month 11am-1pm. For people living with Dementia and their carers. Download a copy of the current LWWD timetable here (PDF 299KB). For more information contact IWNA on (02) 9799 5099 or email: emel@iwna.com.au
Decafé at Adri's Cocina DeCafe Leichhardt
3/23 Norton Street Leichhardt
Tuesdays, 10.30am-12pm - view 2024 timetable here (PDF 922.9KB)
Uniting’s DeCafé Dementia support group offers a safe space at local cafés for a few hours each month, so people living with dementia, and their carers and friends, can meet up, chat with professionals and each other. A gold coin donation for the coffee and cake.
DeCaf Community Social - Deniston
First Wednesday of each month at Deniston Sports Club at 11am. A regular social for people living with dementia and their family carers. Join us for an opportunity to enjoy company, relax, and discover ways to live well with dementia. Gold Coin entry. Address: 59 Chatham Rd, Deniston. For more information phone Debbie on: 0449 546 771 or email: rydecaf@gmail.com
Male Carers of People with Dementia - Five Dock
Are you aware that there is a support group specifically for male carers of people with dementia? The group meets each month on a Friday afternoon at the Canada Bay club at Five Dock to discuss the issues involved in caring for a partner, parent, relative or friend with dementia and how to cope with the stresses involved. Sometimes it does help to get the support of other men who may be grappling with similar issues. The group is facilitated by the wonderful Anne Tunks (Psychologist - Dementia Counselling and Support). If you would like to come along and "try out" the group (or know someone who might benefit) and perhaps get some very helpful information relevant to your role as a family carer, you are welcome to attend. Refer this this flyer (PDF 555KB) with the details of the group but please don't hesitate to contact Anne Tunks if you have any questions or would like to join ph: 9767 5953 - Anne.Tunks@health.nsw.gov.au
Inner West Region Dementia Alliance
Do you have dementia and interested in making the inner west more dementia friendly? Inner West Council has collaborated with other organisations and community members to form a Dementia Alliance Working Group, supported by Dementia Australia. Our action plan has a series of goals with specific actions based on a community forum held in 2021 and includes: awareness raising, the built environment, carer support and so much more. Our Alliance is interested to speak to you so please contact Mark Jones on (02) 9392 5844 or email mak.jones@innerwest.nsw.gov.au
You can see our promotional flyer here (PNG 296.8KB).
Inner West Region Dementia Friendly Community Alliance Action Plan 2022 (PDF 119.2KB)
Inner West Region Dementia Friendly Community Alliance Terms of Reference (PDF 244KB)
More about Carers
To get the support you need contact the Carer Gateway on 1800 422 737. In Sydney the Benevolent Society is the provider of the Gateway on behalf of the Government and support includes counselling, connecting with others via support groups or joining on line , coaching, education and referrals. Grandparent advisers provide extra support for non-parent carers, including grandparents, foster carers and kinship carers who have taken on parental responsibilities for children. They can help you by:
- providing tailored information about payments and support services based on your family circumstances
- arranging appointments for grandparent carers and non-parent carers with specialist staff, including social workers
- arranging referrals to federal, state and community service providers, and
- helping with any other Medicare, Centrelink or Child Support enquiries.
For more information about assistance available for grandparents, and non-parent carers, go to:
To speak to a Grandparent Adviser, call Free call 1800 245 965
Stay tuned for 2023 Carers NSW week of online activities for carers and stakeholders
Other resources
Creating Dementia-friendly Communities - Community Toolkit. Developed in 2014 utilising a range of international resources on dementia-friendly communities and age-friendly communities. This toolkit has been updated and reflects the 2018 Dementia-friendly Communities program. Click here (PDF 823.4KB) to download PDF
Alzheimer's Disease International - The global voice on dementia. Supports and works with Alzheimer and dementia associations in 120 countries, as well as people living with dementia, carers and all relevant organisations to help raise awareness, challenge stigma and to call for dementia to be the global health priority it needs to be: Home | Alzheimer's Disease International (ADI) (alzint.org)
Wicking Dementia Centre, University of Tasmania - The Wicking Dementia Research and Education Centre is at the forefront of translational research and support for issues confronting people with dementia and their carers. Projects are being carried out in Tasmania and nationally, across research fields such as neuroscience, medicine, nursing, psychology and sociology, health, economics and policy: Wicking Dementia Research and Education Centre | Study Now | UTAS
The Understanding Dementia MOOC (massive open online course) brings together the experience, knowledge and understandings of experts in the field of dementia, including neuroscientists, clinicians, carers and people with dementia, providing a multi-faceted approach to this complex and often challenging condition. Importantly, this course aims to provide you with the crucial links between the biology of the diseases that cause dementia, the symptoms that arise as a result, and the ways that we can use these understandings to provide better support and care for people with dementia, their families and carers. Click here to find out more about The Understanding Dementia MOOC
Books
Before Dementia: 20 Questions You Need to Ask by Dr Kate Gregorevic - ISBN: 9781460714546
The Alzheimer's Solution: A Breakthrough Program to Prevent and Reverse the Symptoms of Cognitive Decline at Every Age by Dean Sherzai, Ayesha Sherzai - ISBN: 9780062666482