Really tough question for sure. I am regularly in the position of being asked whether the things we can offer will help someone's parent, spouse, sibling, lover, partner recover their memory and other cognitive and physical functioning. I understand that I'm going to be asked these questions and each time my internal experience is that I have to answer this for the first time. Each situation is different and yet there are some aspects that are unchanging, mainly the profound pain and fear coming from the questioner. I take in their feelings and it resonates with my own sense of urgency, frustration and fundamental impotence.
What we know is that in principle the combining of functional medicine, neurofeedback and light therapy can have a profound effect on the progression of dementing illnesses. The root cause analysis is crucial to being able to address each person's condition effectively. This is not difficult to understand and yet it is a challenge to explain this to people struggling with loss of cognition and their family members who are seeking answers and solutions. Explaining the 3-legged stool that comprises our thinking is sometimes hard to grasp and yet is necessary to elicit compliance especially when we are not talking about a shot or a pill taken once or twice a day. Especially when we are talking about spending sometimes thousands of dollars on therapies that are not acknowledged to be effective by the FDA or Medicare or the AMA. We are asking people to trust us with their lives and resources at an extremely vulnerable point in their lives and this must be dealt with directly and with complete transparency and integrity.
We have evidence that what we're suggesting works, studies have been published but they are few and the sample sizes are often less than 50 subjects. Our recently completed trial on transcranial and intraocular infrared photobiomodulation had 100 subjects in two sites which makes it larger than the typical study in this field. Our collaborators being a large academic medical institution is also a helpful addition to bolstering our credibility. The point is that there is evidence to support the use of these methods of treatment and they are not what is being promoted on television or currently being funded by the NIH. We are hopeful that this will change soon and that combined photobiomodulation and neurofeedback training will find support within the Alzheimer's Clinical Trials Division.
The hard part of knowing when to stop compulsively trying the next thing that 'might help' is how to cope with the thought that you didn't do everything you could. We don't want to be blamed by others but moreso not by ourselves for having stopped trying to 'help'. How to live with the guilt and recrimination? Admit that you were doing things more to reduce your distress than to help them recover. If we listen to the traditional doctors these days, there's 'nothing to be done' other than palliative and hospice care for people with moderate to severe dementia. I think this has led folks to terrible conflict wherein they want to accept the relief of 'there's nothing I can do' while feeling the need to 'do something'. The hard conversations that must be had with family to admit what they are feeling and then be guided as to what can be done to support their loved one while also supporting the family as a whole's survival and well being. The questions about 'how long do we want this to go on? What is realistic for us to do to help them recover, i.e., how much time, energy and resources can we put toward this endeavor? How do we support each other in managing our guilt when it comes up and how to do we manage our impulses to reduce our own difficult feelings by putting them on someone else?
Don't skip over these conversations not matter how much you'd like to as they will serve the family and you in the years ahead.
Our team regularly publishes articles and blog posts on the latest research and news coming out of our group and the field in general.