Critical Dementia Skill #13 Advocating

This is the 13th installment in the Critical Dementia Skills (CDS) series. For more information on the series, start HERE. You can also click on the CDS tags in the blog for more.

It is essential that you be able to stick up for yourself and your loved ones, which brings us to the topic of advocating. Advocating can mean different things to different people in the area of dementia. It could mean advocating for rights for persons living with dementia, it could mean campaigning against physician-assisted death, it could be rallying for more research, and it could also mean promoting awareness to reduce the stigma of dementia.

This article will introduce the advocating for proper medical care around dementia. While I believe that the majority of medical professionals and administrators are noble and honest, we can all make mistakes and be inattentive. As someone living with dementia (when able) and a care partner, it’s important to make sure that you help the medical team help you.

Here are five ideas on being an advocate for you and your loved one with your medical team:

Be prepared. When getting ready for an appointment, bring your notes of behavioral patterns, common issues, all medications (prescription and over-the-counter), and the questions you have.  The time with the physician may be limited, so I encourage you to prioritize the top 2-3 things that you ‘need’ to discuss. Sometimes you just need more time and you should let them know. Typically, a nurse or medical assistant will take you and your loved one to the exam room to settle in, measure vitals signs, ask about medications, and ask about what you would like to cover with the doctor. Here, you can offer a copy of a prioritized list. You can send this ahead of time, especially if as a care partner you want to be discrete about an issue, but I still recommend a physical copy. 

Be a Scholar. Physicians receive many articles from patients about cures, supplements, and diets for reversal of dementia and prevention. When bringing in an article that you found on the internet, it may be more persuasive if you search your topic on the Google Scholar search engine. This search engine scours the peer-reviewed scientific journals written by and vetted by researchers in the field. It does not mean that the article is perfect, but it tends to be more credible and will carry more weight. Of course, there are very good articles that are not peer-reviewed. You should consider sharing the many resources at this very blog! 

Be Professional and Civil. The chances are high that you are and your loved one may be stressed, as dementia is a physically, emotionally, and mentally draining condition. This can have us on edge and perhaps make it difficult to keep our composure. Always assume positive intent from the medical team and collaborate with them around your goals of care. Let them know what matters most to you and your loved one. Lastly, show your gratitude if you appreciate their time and diligence. 

Be honest. It’s important to be truthful about what is going on, even if it is embarrassing. The medical teams are expected to keep everything confidential and only discussed with those who need to know. I understand that sometimes a care partner requires a more private setting away from their loved one to be truly candid with the doctor. The alternative is upsetting the person living with dementia. Some may see this as lying, but that is a prudential judgment on the part of care partner. As a general rule, as long as private communication with the medical team is for the good of the person living with dementia rather than to deceive, care partners should feel free to hand a letter for the doctor at check-in or to the nurse. These days, a message through the electronic medical record may work well also. 

Be tough. When you’ve been persistent, honest, and professional and you still think that something is not right, stick to your position. Rather than become unprofessional, this means seeking a manager or another medical opinion. While you may not be a medical professional (perhaps you are), you know your loved one very well and when something is off.  A wife recounted to me that she saved her husband’s life in the hospital once by advocating for her husband. While I do not recall what she was persistent about (though I remember the person), it was her persistence and that the medical team listened.

It goes without saying, but I’ll write here…PRAY. Pray for courage, pray for patience, pray for grace.

Questions for you to think, write down, and share in the comments section (any or all):

• What other advice would you give?
• Do you have a story to share about when you were an effective advocate or a time when you wish that you were?

Thank you for reading this far and for commenting. Let’s tell hundreds more care partners about this concept by sharing the article. God bless you.

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