02- May2017

Chasing a Diagnosis

I sat in my driveway, hanging on to every word Jason spoke while the rain beat down on the roof of my car.  He had called 10 minutes earlier to get advice on a recent diagnosis of dementia his father had received.

“We just don’t know where to go from here.” his voice cracking as he choked up over the words.

As we talked he shared with me the symptoms he had noticed over the past 6 months and the increasing care his mother had needed to provide.”

She is exhausted”, he continued,  “…I am pulling double shifts and spending the weekends over there to relieve her, but we are at our wits end.  He just shuffles around, gets lost, sits in the bathroom for hours at a time during the middle of the night.  What could possibly be wrong with him?”

I asked what type of doctor his father had seen and if there were future appointments or tests scheduled to identify his dad’s sudden onset of symptoms.

“They just said it was dementia, maybe Parkinson’s, but no, there are no future plans to find out more. Why? Should there be?”

I stopped in my tracks and assured that Jason had my full attention, “It is not only important, it is critical that your dad gets followed up with a specialist.  I suggest a neruorogist and whatever testing they feel is necessary to get the proper diagnosis.  Your dad’s quality of life and treatment options depend on it.”

With that, Jason scheduled more appointments. We stayed in touch as more testing was conducted.

One afternoon, a few weeks after our initial call, he texted me with an update.  His dad’s symptoms had worsened and required first responders to rush him to the emergency room.  While his dad was in the radiology lab in the E.R.  for an MRI, the doctors told the family they were pretty sure it was just “plague build up” and “…nothing that could be diagnosed until postmortem.”

Two hours later Jason texted again. A 6 cm brain tumor had been identified on the left side of the brain, potentially inoperative.  Chemo and radiation were options, but most likely his father had less than 6 months left to live.

Our conversation quickly turned to the importance of quality of life, precious time his dad had left to share in connection and love.  We talked hospice and palliative care.  Jason took on the job of ensuring his father was comfortable and out of pain.

It was wonderful to see social media pictures of his dad, cared for by round the clock nursing and surrounded by family, smiles, laughter and hugging.

6 weeks after our initial call, the day it rained so hard I stayed in the driveway to finish our conversation, Jason’s dad died.  Jason reported that he was comfortable in his own home, surrounded by those who loved him and grateful that the past weeks were spent in celebration of a life well lived and not chasing a diagnosis.

Also Read: Five Reasons To Get A Diagnosis Beyond Dementia

26- Apr2017

Five Reasons To Get A Diagnosis Beyond Dementia

If you or a loved one is given the diagnosis of dementia from a general practitioner, the very next question you need to ask is:  What kind?

This is critically important in determining which chronic brain condition is causing issues with memory, judgment skills, communication changes and potential behavior transformations.  

It is important to think of the term “dementia” as a grouping of symptoms that is evident in a variety of disease processes.  Like the term “cancer”, the past, present and future is dependant on the type of cancer.  If you or a loved one were given the diagnosis of cancer from a general practitioner, your very next question would be:  What kind? The same holds true for dementia.

The following are 5 main reasons why it is important to distinguish the “type of dementia” you or a loved one is living with:


Based on the type of dementia diagnosis received, specific medications may be recommended to alleviate some symptoms or slow the progression.  For example, not all medications effective for Alzheimer’s type dementia are advantageous with other forms of dementia, such as Frontotemporal Degeneration, where an exacerbation of troublesome symptoms may be apparent.  

Additionally specific medications that have proven effective in alleviating symptoms in such types of dementias such as Lewy Body Dementia (LBD) or Frontotemporal Degeneration (FTD) can create serious side effects if taken with other common medications that treat depression, cold/ allergy symptoms and anticoagulants.

According to the Lewy Body Dementia Association, “While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects” –  source Lewy Body Dementia Association

A Diagnosis of Exclusion

A diagnosis of such chronic brain conditions as Alzheimer’s disease, LBD, FTD, and Vascular dementia should be provided only when all other options have been exhausted.  There are many chemical changes, hormonal imbalances and harmful medication interactions which mimic a type of dementia, but are potentially reversible.  An example of this is Hydrocephalus where surgical treatments can restore and maintain normal cerebrospinal fluid levels in the brain, alleviating symptomatology and progression of the disease.  

Symptoms of depression often mirror those of early stage Alzheimer’s disease.  If the proper information is provided at medical appointments and a thorough exam is performed, including necessary tests, it is possible to rule out a chronic and fatal disease processes.

Non- Medical Treatment Options

Various therapies and interventions are recommended to stave off progression of troublesome symptoms and maintain quality of life for anyone living with a chronic brain condition.  Some therapies target specific symptoms, while others are utilized to stimulate remaining brain health and mood.  Proper diagnosis allows for important early treatment options that may extend quality of life and independence.  

Those living with LBD often suffer from low voice volume and poor enunciation. Speech therapy may improve muscular strength and swallowing difficulties.  Music, dance and aroma therapies have been shown to reduce anxiety and improve the mood of those living with Alzheimer’s disease.

Support Systems

Depending on the type of dementia diagnosis received, families find themselves wrought with guilt, grief and fear of the unknown.  Support groups specific to the disease and one on one therapies can be helpful to make caregivers functional and effective in a time of crisis.  Groups sponsored by local hospitals, spiritual organizations and local municipalities can provide great options for empathy, understanding and service options.  

General groups that support those living with a chronic brain disease should be considered as a “jumping off point”, but if a specialized group is offered, it may be helpful to engage and seek the support from others who know exactly what you are living with.

Future Plans 

Depending on the diagnosis, planning for the future progression of the disease as well as the social well-being, comfort measures and financial needs of the patient and family can very greatly.  A progressive, inoperative brain tumor many indicate that palliative and hospice care may be the best intervention to ensure the patient’s comfort during their final months.

A diagnosis of Alzheimer’s disease many indicate that families need to rally together, assisting the patient to determine what their end of life choices are.  The implementation of financial and legal documents such as power of attorney, guardianship, and living wills will depend on the cognitive and judgment capabilities at time of diagnosis and application.

We all know the importance of receiving a proper diagnosis from our doctors when it comes to chronic illnesses, persistent ailments and even temporary infections.  When we are misdiagnosed, it takes us longer to heal, regain our strength and resume life as normal.  Diseases that plague the aging population are no different.  With the proper diagnosis, treatment and prognosis can enable anyone, at any age, to remain active and independent for as long as possible, enhancing quality of life.