Finding information & support when living with dementia

After receiving a dementia diagnosis, many people are left to navigate their dementia journey by themselves, with little to no information or guidance provided. This can make an already stressful time even more overwhelming. The first steps to take after a dementia diagnosis will be slightly different for everyone, depending on their individual preferences, situation and support needs. However, most people will benefit by considering the following initial steps: 

Get information

There are many forms of dementia; it’s not a single disease but an overall term to describe a collection of symptoms one may experience if they are living with diseases such as Alzheimer’s disease, Vascular dementia, Lewy Body Disease and more. 

Below are some good sources of information to find out more about dementia:

💠Dementia Australia can be a good starting point as they clearly outline the signs, symptoms and progression of the most common forms of dementia. They also offer specialised video content on a wide variety of topics, delivered by dementia specialists. 

💠Forward with Dementia provides up-to-date information from clinicians and researchers, plus practical suggestions and stories from people living with dementia and carers. They also share tools to come to terms and live positively with dementia. Their intention is to help guide the first year after diagnosis.

💠Some people may be interested in the free courses offered by the Dementia Research and Education Centre as a way to learn more. 

💠Your GP can also assist with any questions relating to your individual diagnosis and situation.

Get personal support

There is no right or wrong way to get support. You may find that friends and family are a valuable support network at this time, but you may also like to seek support beyond your existing social circle. Some suggestions include: 

💠Dementia Australia offers free individualised support over six sessions to people of all ages diagnosed with dementia, and this service is also available to family members and carers. They can help increase your understanding of dementia, plan support services and networks, develop personal and lifestyle strategies to help you live well and prepare and plan for any changes. To access the program call Dementia Australia on 1800 500 100. The sessions are offered via phone or video conference.

💠Dementia Alliance International offers online support groups for members all over the world, and membership is free. 

💠People living with dementia, and carers of people living with dementia (whether current or former carers) in the Orange area are welcome to join the local Dementia Alliance. It’s held on the third Tuesday of the month at 10am. The venue has recently changed, for venue details contact Amanda Rodwell, Ageing and Development Officer, on 6393 8053.

💠You may also like to join the local peer support group in Orange for a cuppa and a face-to-face chat. The Dementia Peer Support Group is for people living with dementia, and meets at 10am on the first Friday of the month (except January) at the Seniors Village Hub, Nguluway Ngurang, 77 Kite Street. Bookings are not necessary, but if you’d like more information contact Orange City Council on 6393 8600. 

💠Orange’s Dementia Carers Support Group meets every second Tuesday of each month at the Community Services Centre, Giyalang Ganya "Belonging House", 286 Lords Place Orange, from 10am to 12pm. The group is a safe and supportive place to meet with others caring for someone with a diagnosis of dementia. Contact Kerrie Ferguson on 0409 315 456 for enquiries.

💠Carers may wish to contact Dementia Support Australia, who have a dedicated helpline 24 hours a day, 7 days a week. Specialised dementia consultants will help you to develop personalised strategies, advice and practical ways to support the person in your care. 

💠The Carer Gateway is a national network of providers who help carers access in-person, phone and online support services. 

💠Forward with Dementia aims to motivate people with dementia to live as well as possible, and can provide some suggestions on how you can support your well-being.

💠Your GP should also be able to help with support options.

Get practical support

💠My Aged care is an important starting point to access a wide range of government-funded services based on your specific needs that will help you live independently at home for as long as possible. This looks different for different people. It may mean getting help with shopping, cooking or cleaning. For others it may mean getting modifications to improve your safety and movement around the house (and much more). They can also help with short term care or with moving into an aged care home when the time is right. You can call them on 1800 200 422.

💠 Short term respite care is available through LiveBetter, Uniting, Orange Grove and Gosling Creek Aged Care. Generally speaking, residential respite care is available for older persons who have carers assisting with their day to day activities and care needs. An initial face-to-face assessment is conducted by Age Care Assessment Teams (contact My Aged Care to arrange this) to ensure you meet the criteria for respite care.

This information is collated by volunteers. If any of this information has changed, please help us stay up-to-date by getting in touch.

Have you found support, services or resources that were particularly valuable for a loved one who is living with dementia, or for you as a carer? Please let us know.