It’s important that health professionals are aware when someone has dementia, as this can affect how health conditions are managed. However, some professionals may have limited experience or understanding of dementia, particularly young-onset dementia. You may need to be assertive and help them understand how best to support you.
Be assertive and involved in decisions about your health
Sometimes professionals assume that a person with dementia is not able to make decisions about their care or everyday life. They may direct conversation only to the carer or support person, make assumptions about what’s best, or rush through information without giving enough time to process it.
If this happens, it may be necessary for you – whether you are the person living with dementia or their support person – to speak up, ask for clarification, and make sure everyone understands the options and their implications before agreeing to any decisions.
Being assertive doesn’t mean being confrontational. It means making sure your views, needs, and preferences are heard and respected. Advocacy simply means ensuring that information is provided in an understandable way, that rights are protected, and that everyone is treated fairly and with respect.
You may find this recorded Dementia Alliance Webinar
This short webpage is about cancer care, not dementia, but it is a clear guide on how to be assertive with health professionals.
Be assertive in asking for dementia treatments
Some doctors may not be familiar with the latest approaches to dementia care, particularly the rehabilitative and strengths-based models often used in young-onset dementia. It’s not true that “nothing can be done” beyond medication–there are many supports and therapies that can make a difference.
If you are not offered services or treatments mentioned on this website (see Section 3 of this website on Managing changes
You can also access government-subsidised allied health sessions through a Chronic Condition Management Plan, prepared by your GP. While these plans are common for conditions like diabetes or arthritis, they are not always offered for dementia unless specifically requested, even though dementia is a chronic condition. Don’t hesitate to ask your GP to create one.
If your doctor would like more information about the evidence behind your requests, you can refer them to the Australian Clinical Practice Guidelines for Dementia and the accompanying Consumer Companion Guide. These outline evidence-based recommendations for post-diagnostic care. Clinical Practice Guidelines are a ‘guidebook’ for best quality assessment, management and treatment people living with dementia and carers. These guidelines are currently being updated by Monash University in Victoria. You can get updates and be involved with updating the Guidelines from your lived experience by registering here. This website is open until December 2026.
If you or the person you support receives a National Disability Insurance Scheme package, you can also use this funding for allied health treatments. While it’s not always suggested by providers, you can ask for these services to be included. See 5.5 Types of Services for more information about accessing these supports.
It’s also important to remember that dementia is progressive and rarely follows a neat or predictable path. Plans, routines, supports, and treatments will need to be reviewed and adjusted overtime—sometimes quickly. Being assertive isn’t a one-off task; it’s an ongoing process of checking in, reassessing needs, and asking for changes as the situation evolves.
Being assertive ensures everyone is heard and respected
Being assertive with health professionals will ensure open and effective communication to get you better services and treatments.
