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There are lots of assumptions in the healthcare world. Some of the assumptions derived from the individual healthcare providers and/or their professional and accrediting agencies. Other assumptions arise from biases long-held by elected officials who must approve the use of public funds for selected services and deny them for others. Additional assumptions arise from major stakeholders in individual and corporate income and profits. Amo g the stakeholders are the pharmaceutical and healthcare supplies manufacturers (often, by the way, subsidiaries of Big Pharma companies), doctors of different specialties, insurance companies that manage healthcare facilities, and research universities that expect public sources to pay their overhead for operating the entire institution and not just the parts that cover healthcare research and medical treatment.

To develop a better healthcare system for everyone,j and in the area of dementia services where I focus my concerns, various kinds of cost-benefit studies are necessary. For instance, should dementia patients add a new, but generally unproven expensive drug to their treatment plans or instead receive a package of social services including care management, reimbursement of costs for services currently provided for free by their family members, respite services for caregivers, and patient and caregiver education. Should dementia patients get training on how to better make decisions, solve problems, and understand others better rather than some more medications purported to improve (but only slightly and only for some) their cognitive functioning.

For dementia patients, I strongly believe that cost-benefit studies need to be conducted to determine whether more cost-effective improved outcomes can be achieved with cognitive-social interventions, increased use of pharmaceuticals not fully proven to produce effects at this time, or combinations of the two.

It is very unlikely that at least within the foreseeable future there will be enough final resources to provide “perfect” treatment for each patient. Hence, it important to know the best combination of imperfect treatments that can be made available for different types of patients.

The following figure discusses some of the issues. Click on the image to expand its size.

When people look at and try to interact with people living with dementia, they often misunderstand what is being expressed. People with dementia cannot control facial muscles and may appear to be angry or disinterested even when very happy. They may talk slowly and then come out with something brilliant which you will miss if you stop them mid-sentence. They tire easily and may expression or irritation, not because of the behavior of others but just because dementia can make one very “mentally tired” in a way that I never experienced prior to dementia.

I’m there much of the time, I just don’t look the same way I used to. Be patient.

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Your inner clock is extremely important. It helps you go to bed and wake up at a time that matches the rest of the world. It signals you when 15 or 60 0r 90 minutes passes. It helps you get to appointments on time or to the grocery store before it closes.

My internal clock has been broken for the past six months. It’s more of a problem than it might seem it should be.

Click on the image to follow the journey through the warped time-space continuum.

While having dementia, I realized that I could not always depend on myself to be able to remember what had happened to me over time. Symptoms? Mood? Problems? Successes?

One of the most effective ways to improve medical treatment is for the healthcare provider(s) and the patient to work as a team. Notice that one of the first things your doctor asks is “how are you?”

How you answer that question will greatly determine how much you and healthcare providers can accomplish during the appointment.

When friends ask you how are the automatic response is “fine” for most people. Same thing for when doctors ask that at the beginning of an appointment.

Let’s be real here. When you have dementia, things are not going to be fine ever again. By just replying “fine” your friend or healthcare provider might infer that you are avoiding answering honestly or even worse, they will believe that you are “fine.”.

About a year after my diagnosis 10 years ago, I stopped just answering “fine” and adopted the following response.

“For someone who has dementia, II am doing as well as anyone can realistically expect, and many times even better than that. I am eternally grateful to my doctors, family, and friends.” Or something more informal but expressing the same thoughts

Now, if you want to get the most out of your doctor’s appointment, you need to quickly, fully, and accurately tell your doctor what “fine” or “terrible” means to you..

Doctors are scientists trying to use all of their skills to determine what they can do to make your life better and more comfortable.

They need DATA. Not just data that comes back from a blood test or your blood pressure or weight but data on how your medications are working, how you get through your day with dementia, events that may have happened like a fall, and side effects you get from your medications.

I know how to deal with the need of the doctor for DATA to fine-tune your treatment. You figure out what she needs to know and you start to document what is going on.

So I started to prepare for the appointments by spending a few minutes developing a mind map that would help me remember what to say in my appointment using the mind mapping techniques I talk about in this blog. This helps me capture in more detail how the 3 or 6 months between appointments had been going. And it helped me understand how the things I did and the environments I faced determined the outcomes of my treatment.

II started collecting some data about myself and I brought some mind maps to my doctor appointments regularly. It got much easier for me to explain how I had been doing since my last appointment. How well did my medications work? Did they have side effects? How did I structure my day and how did I get along.

Several doctors saw me consulting a bright and clear mind map on my lap. In several cases, they (my neurologist and my internist) almost grabbed the display from my hands. I now have dozens of mind maps scanned into my medical chart.

The mind map below shows some of the data I collect and how I present it to my doctors.

Expand the image by clicking on it.

I’ll be creating many more blog posts on how to work with your healthcare provider and provide her with data that helps her understand what works well for you. Watch this space.