I've had a lot of experience being a patient advocate. It is a great big, hairy, scary responsibility. It’s also one of the most important roles we can take on.
Canada has just shy of 40 million people living between our borders and only so many health care professionals to go around. Like all businesses, our health care system is limited by resources (human and financial), information, and the environments where care is provided and received.
When we walk into an emergency room, therapist’s practice, or doctor's office for the first time, we are all strangers. We quickly develop an intimate relationship where lives literally hang in the balance. It is important for health care professionals to remember that your person is not just a patient but someone who is loved and has a rich and unique past.
Patients with dementia lose their histories.
Unable to advocate for themselves, they rely on us to build a complete story for health care providers. Being an advocate requires us to become historians, witnesses, students, and trusted health experts. No one knows your loved one better than you. You are the expert on this person. Let that sink in... it’s really important.
As a dementia advocate, you will be the keeper and voice of memories. You know personal history, personality, strengths, weaknesses, fears... You also know about past illnesses, injuries, surgeries, medications (how they worked -- or didn’t), allergies…. All of these experiences combine to create a complete profile of the person. Without the facts dementia advocates provide, health care professionals will not, and in fact cannot, be successful in providing the best, personalized care.
Creating a personal profile and health history can go a long way to providing critical insights.
You will be asked a ridiculous number of times to provide a health history. It amazes and frustrates me how much time and energy are wasted on the repetitive collection of health data as we cycle through the doors of a myriad of specialists. Providing an accurate and complete health history, especially when you are tired, scared, and frustrated (permanent states for most of us caring for those with dementia), can be difficult and stressful.
In order to cope, I created a document that summarized Mom's health history and I continue to update it. I suggest everyone do the same. It will save you oodles of time and quite possibly your sanity.
Getting the summary set up is the hardest part, but once you gather the facts and decide where to record the information, the rest is easy. The health history you build can be an ongoing note on your phone or a Word or Excel document. It can even be a notebook if you don’t have or are uncomfortable using a computer. Anything format can work as long as the information is in one place where it is easy for you to enter and retrieve.
Below are some suggestions of what to record:
Full name, birthdate, address, health card number, insurance info, phone number and family contact
Existing or previous conditions and experiences (diabetes, cancer, stroke, high (or low) blood pressure, blood disorders, joint replacements, pace maker, dentures….)
Every time there's a new test, procedure, surgery, incident or diagnosis, record it. If you can, include who was involved (doctor, surgeon, specialist), when (day/month/year), where (hospital, clinic)
Keep a list of up-to-date medications. If possible, hang on to what’s been added or deleted over time along with when and why changes were made.
Note allergies to medications or foods
If you have time and energy (and those of us who are caregivers realize that’s a really big “if”), try to include behavioral changes such as sadness, aggression, delusions, hallucinations, weakness
Create a section for questions you want to ask and another to record important information you’ve learned. I also have a list of definitions and what each medication does on my Mom’s health history.
Add anything else you think is important to record
I believe that a living health history is one of my most important advocacy resources.
Whenever I go to an appointment with Mom, I print and bring an up-to-date version with me. If I need to complete a form that asks me to fill in what’s recorded in the health history, I write, “see attached” and provide them with a copy of the document. I also refer to it at regular appointments. This way, I know that what I provide is complete and correct.
This comprehensive document has been equally useful for me and Mom's health teams. As the list of medications change and unpredictable behaviours and health challenges occur, the history of appointments, medications, and procedures are sometimes hard to recall. Having the living health history handy helps me remember when I need to quickly summarize important details in a new setting and feel more confident answering questions. At the same time, doctors have noted how much they appreciate having the facts at their fingertips so the proper care, which is based on a full understanding, can be provided.
Lessons Learned:
Health histories provide health care professionals with essential information they need to provide the best care
You are the expert with an intimate knowledge about the person being cared for
Health histories save you, the health care team, and the patient time and effort
Health histories allow you to share the facts objectively even during times of duress
Dementia takes so much away from our relationships so, the less time you spend filling out forms, the more time you can spend with your loved one.
Note: there are apps out there that allow you to record your information and share it through your phone but my experience is that a printed version is best. Most physicians I have worked with do not want to look at an app and appreciate the printed copy. I've created health histories for myself as well as both parents. I firmly believe every person should have one and be ready to share it with family members.