What does advocacy mean when it comes to navigating the increasingly complex healthcare space?
Let’s face it, our healthcare system is complicated! Understanding and navigating the vast array of health care providers, services, treatments and medications is bamboozling and even more so if you have a cognitive impairment. Most older people need a good health care advocate to help them move around the system and get the care they need.
Accompany your loved one to doctor’s visits and serve as their voice to the doctor. You will need to voice your loved one’s needs as well as provide your own observations. Being an advocate means being able to convey your loved ones wishes and health needs to your loved one’s healthcare team. That might be their doctors and other medical professionals involved in their care as well as any professional caregivers or home health aides.
Depending on the stage of dementia your loved one may no longer have the ability to express their own needs. Or as some of the physical or behavioral symptoms associated with dementia worsen your loved one may have difficulty communicating. As their caregiver you’ll need to share the thoughts and feelings of your loved one to the best of your understanding with the healthcare professionals as well as reinforcing what you hear from the professionals back to your loved one.
Take the time you need to fully understand your loved one’s diagnosis and other medical conditions they have. The Lizzy app has information on the different types of dementia and the symptoms or behaviors that can present in each one (see the course on Learning about different types of dementia). As dementia progresses new things will happen and your role as a caregiver will change. Dementia can present particular challenges when it comes to attitude and behavior so make sure you are aware of the warning signs or challenging behaviors and how to avoid them.
The decision making can be daunting and even become overwhelming at times, particularly if you are worried for your loved one but remember your role in making clear your loved one’s wishes will help to make sure that doctors and nurses give your loved one better care.
Never be afraid to ask questions. Don’t be intimidated by doctors or other healthcare professionals. Just like you they want to keep your loved one as safe and comfortable as possible.