We’ve mentioned that it is a good idea that health professionals know that your person has dementia, as dementia can impact on management of other aspects of health (see the section Managing changes). However, some health professionals may not have much experience or knowledge about dementia, and you or your person might need to be assertive and educate them about how to best support you.
Be assertive and involved in management decisions
Professionals sometimes assume that people with a diagnosis of dementia are not competent, nor do they know how to support people with dementia to make decisions about their own care and life.
They may expect the carer to make all decision on the person’s behalf. They may also make assumptions about what is best for the person. They might talk too fast, or not give enough time to take in information so the person can make decisions about the sort of care they want.
If you feel that this is happening, you may need to be an advocate for the person you support. Advocacy simply means that the person gets the information or resources they need, in a manner that is understandable for them, their rights are protected, they are not discriminated against, and they are treated with respect.
You may need to be assertive in asking questions and not agree to something until your person (and you) fully understand the choices you have and the possible repercussions of various choices.
This recorded Dementia Alliance Webinar gives suggestions on how a person with dementia can talk with their doctor about dementia.
Although this article is not about dementia, it has helpful tips on how to be assertive in talking to health professionals.
Be assertive in asking for dementia treatments
Some doctors who make diagnoses of dementia may not be up-to-date on management of dementia, particularly around newer approaches of using a rehabilitative approach. Some doctors still believe that beyond medication, there is little that can be done to manage dementia. This is untrue.
If your person is not offered treatments which you’ve read about on this website (see the section Managing changes), ask the doctor to refer your person to those services.
A hospital specialist may be able to refer you to allied health services such as an occupational therapist, physiotherapist, speech therapist or psychologist employed by the health service who can provide you with free services. If these health services are not available in your area, you may need to pay privately (private health insurance might cover some of these services).
Another way of getting government funded allied health services is through a Chronic Disease Management Plan. In Australia, General Practitioners write Chronic Disease Management Plans. These plans mean that you can get five, subsidised allied health treatments which can help you move forward with dementia.
While it’s common for GPs to write Chronic Disease Management Plans for conditions such as diabetes or arthritis, it’s unusual for GPs to offer a Chronic Disease Management Plan for dementia, even though dementia is a chronic disease. You or your person will need to ask your GP for a Chronic Disease Management Plan, as they are unlikely to offer this to you without a request.
If your doctor wants more information about the evidence behind your requests, you can direct them to the Australian Clinical Practice Guidelines for Dementia. This website provides suggestions for treatment which are consistent with the recommendations from those guidelines. You can read the ‘Consumer Campanion Guide’ to the Australian Clinical Practice Guidelines to ensure you are aware of current evidence based recommendations for post-diagnostic care
If your person receives an Aged Care Home Care Package, you can use your funding for allied health treatments. It’s not that common for home care package providers to suggest allied health treatments for dementia symptoms. Once again, you will need to be assertive in asking that your package funds be spent on allied health. See the page 5.5 Types of Services for more information about getting services.