A recent diagnosis of dementia?
Navigating the unexpected
Understanding your first steps, together
We say together, because when a diagnosis of dementia is received, there is rarely just one person receiving the diagnosis. It’s usually two people. The person with the diagnosis, and the person who is there to support them. Often then it is shared with family and friends. This is the start of a new normal for your ‘circle’.
Whether you’ve just received a diagnosis yourself, or someone you love has, we know there’s a lot for you all to take in right now, both emotionally and practically. That’s why we’ve included some Useful Resources below and our 6 First Steps to help guide you through these early days. The 6 First Steps have been created by us – they are not recommendations or advice, just carefully considered suggestions with helpful links and insights gathered from families who have walked this path before you.
6 first steps
Created for you, by us. We hope this helps with navigating these first few days and months.
Post Diagnosis Information
Reach out to Dementia Australia who offer six free sessions of post-diagnostic support by phone or video for you and a friend or family member. Being armed with the right knowledge can make a huge difference, and the team at Dementia Australia will help you to understand more about your condition and what to expect. They can also link you up with support groups.
Rementia Together With Us
Often referred to as the start of a sensational Plan B, our free 5-day live-in education retreat is a great first step following a recent dementia diagnosis, for you and your support person. The retreat will connect you with other people at a similar stage, as well as with sought-after dementia care experts, including geriatricians, neuropsychologists, financial planners and more.
Talk, Talk and Talk
Your first instinct might be to withdraw from friends, but we suggest the opposite. Pull as many friends and trusted advisors into your circle as you can. It’s important for everyone. Meeting up for coffee or having a chat on the phone with a friend lowers situational anxiety, maintains speech and confidence. And practically, your circle is your network of support down the track.
Move Your Body
Short walks, yoga, pilates, running, housework – whatever you do now, just keep doing it (and do more of it if you can). There are many proven benefits of exercise for brain health and for the reduction of symptoms of dementia. Not to mention the physical benefits gained from improved circulation, strength, and balance.
Trusted Advisors
It is never too early to find the right expert advisors to guide you along the way. From a medical perspective, a geriatrician and a neuro-psychologist are important relationships. For practicalities we recommend a Life Planner, Estate Planner, Aged Care Navigator or Support Coordinator (NDIS).
Remember the Fun
What brings you joy? Share it with others – dancing, bridge, golf, surfing, ribbon dancing – sharing a meal with friends? Whatever it is, keep doing it. Joy is great for brain health and creating more moments of joy helps you to create more memories, for you and the people who love you.
Useful Resources
Dementia Australia
We are lucky to have such a high-quality organisation as Dementia Australia supporting Australian families living with dementia. Most importantly, they have the National Dementia Helpline on 1800 100 500 available 7 days a week, 24hrs a day, 365 days a year. Conversations with The National Dementia Helpline are free. They also offer a range of practical education sessions online and in-person, depending on the topic. Following a recent diagnosis, they offer six sessions over the phone or online, with a skilled Dementia Australia staff member who will be your single point of contact over the six sessions. They will work with you to understand your specific situation and provide information and support based on what is most important to you.
Life Planning
You can live independently and well with dementia for a long period of time, so it will be important to consider your long-term plan once you’ve navigated through the early stages. Engaging with a life planner is something many of our families have done with great outcomes. We suggest reaching out to DR Solutions who have over 30yrs of experience in supporting people searching for the right care, support and accommodation. They will provide a free initial consultation and take you through each step when it comes time for Life and Financial Planning. Please note: We receive no commission or financial benefit from this recommendation. Our referral is based purely on professional trust and positive outcomes.
Good Reads and Listens
If you like to read, we recommend these books as a start. What I wish people knew about dementia by Wendy Mitchell, Loving Someone Who Has Dementia by Pauline Boss and Being Mortal by Atul Gawande. We also recommend Dementia Australia’s Hold the Moment Podcast hosted by Jim Rogers who has Younger Onset Dementia and his co-host friend and journalist Hamish McDonald whose father has Lewy Body Dementia with Parkinsons. Together they cover a range of topics so you can hear how people living with dementia handled their diagnosis experience, and how they found a positive way forward with the help of friends and family.
Links to articles for people with a recent diagnosis
Dementia is a condition most commonly associated with older Australians
Not many people are prepared for a loved one’s dementia diagnosis
A dementia diagnosis can be a life-changing moment
We know that routine is important for those living with dementia
“I am writing to express my sincere appreciation and acknowledgement of the fine team Videri Australia has at their Irrubel home. From the preliminary assessments to our arrival at the home, we were immediately put at ease, quickly appreciating the amenities of the home, its warmth and charm obvious to all.
In what is a challenging and constantly demanding environment we saw only smiles, constant positivism, continual engagement and genuine empathy coming from the team. The daily WA photos were a tremendous help and my family still looks at them to show other family and friends how happy our loved one was at Irrubel.
We will have no hesitation in requesting respite/care for her in the future with Videri Australia and would happily recommend you and your team to anyone.”
– Irrubel, November 2023
Helpful reading, when you're ready
Take a moment. When you feel ready, we’ve gathered thoughtful notes and real answers to questions we’re often asked, designed to support you through each step.
How do I apply for ACAT funding?
Government assistance in the form of financial subsidies to offset cost of care, can be explored directly with My Aged Care on 1800 200 422. When you call, have your Medicare card on hand. The process will entail an ACAT Assessor visiting you to do an assessment of your care needs, which may then lead to a level of government funding to subsidise in-home support. Financial assistance can’t be claimed directly by you, it needs to come via your selected Home Care Provider. Our team have a good understanding of funding pathways and can give you some basic information to get you started.
How do I apply for NDIS funding?
- Call the NDIS on 1800 800 110 to make the request.
- Complete an Access Request Form (ARF), which can be posted or emailed upon request.
- Visit a Local Area Coordinator (LAC) or NDIS partner for support.
Who do you support at Videri Australia?
- Younger onset dementia
- Alzheimer’s disease
- Vascular dementia
- Lewy body disease
- Frontotemporal dementia
- Parkinson’s-related dementia
- Motor neurone disease (MND) / amyotrophic lateral sclerosis (ALS)
- Wernicke-Korsakoff syndrome
- Traumatic brain injury (TBI)
- Chronic traumatic encephalopathy (CTE)
- Stroke
Do you support people living with Younger Onset Dementia?
We welcome people under 65 who are living with dementia, including those diagnosed with younger onset dementia. Many of our residents have been diagnosed in their 40s, 50s or early 60s, and our care team has deep experience supporting this younger cohort.
We understand that younger onset dementia can affect families at a stage of life that’s already full – careers, children, and the everyday demands of home. For many, it means seeing changes in a parent far earlier than expected or navigating the shift in a partner’s role within the family. The emotional and practical impact is significant and different from later-onset dementia.
That’s why our Social Workers work closely with families living with younger onset, offering support that goes beyond clinical care. Whether it’s helping to adjust to a new diagnosis, navigating NDIS, or simply being there to talk through how to adjust with the changes.
If you are registered with the NDIS, we recommend exploring an application for SIL Funding. This should cover most if not all your Videri Care Fees, leaving a smaller portion of out-of-pocket (accommodation and board) to be covered by you. Our Family Enquiry Team can work with you on how to fund your stay with us and can recommend a good Support Coordinator and Plan Manager, should you need one.
Let's talk
Wherever you are in your journey, we are here for you.
Call us on 1300 015 406 or share your details via our form and we will be in touch.