Why a Diagnosis is Important

Some of you may not know that one of my subspecialties is in supporting people who have a diagnosis of illnesses like Alzheimer’s and related diseases, as well as their families. One question people ask me is, “If there is no cure for some of these illnesses, what is the point in me getting a diagnosis?” Or a corollary to that from care partners is, “I already know my spouse/parent/neighbor has a degenerative illness, I’ve been seeing it – why do I need to confirm what I can see?”

These are very good questions, and some I’m sure the askers spent a fair amount of time thinking about.

There are many reasons why someone might not want to receive a diagnosis. In the first place, even thinking about such a possibility can be overwhelming. While there are many illnesses that one never wants to “get,” Alzheimer’s and related disorders are generally high on that list. And because there are no cures, prospectively having a diagnosis may create a fear, hopelessness, or powerlessness. And there are likely differing unconscious feelings for each person thinking through these prospects.

So why work with a medical team to potentially get a diagnosis? Yes, it can be life-altering for both the individual as well as family and friends. This is the truth, getting a timely diagnosis can improve access to care, planning, and having an active role in making decisions about future care. In addition, knowing what you are dealing with may make it easier to find and secure emotional/spiritual support and may also provide opportunities to participate in research.

Friends and family members may interpret cognitive or personality changes through a different lens, in fact, may have taken some things personally. A diagnosis helps bring clarity, understanding, or even empathy, which often improves relationships that had suffered. Clarity can help families name what has been happening and begin to learn.

Indeed, some family members may think of the sometimes-subtle symptoms as normal aging. That lack of understanding may also prevent the start of adequate planning.

A diagnosis may also present opportunities for research or medical interventions. Early treatment may slow progression and help manage symptoms. Making changes in sleep hygiene, diet or exercise routines may also be more effective when started at earlier stages. Getting early treatment may also facilitate a look at a type of precision medicine, which may ensure certain medical values are optimized for brain health, for instance vitamin values, thyroid and other metabolic values. It is quite possible that an accurate diagnosis may lead to better outcomes overall.  

And now I’ll get personal. I’m speaking to you. When you know what’s really going on it empowers you, your care partner, and other family members to make informed decisions.  You get to decide what your care looks like now and what you’d like your future care to be. You can answer questions like, “Do I want antibiotics if I am no longer able to speak for myself” or “Do I want a cardiac intervention like a defibrillator?” Getting the legal documents to affirm your up-front decisions helps reduce family stresses and ensures that your family and providers know your wishes.

There are other reasons as well and I’ll talk more about this next time. If you are interested in support in these processes, click here to schedule an appointment.