On 2/2/18, I had the pleasure of talking with Tammy Flynn, host of The On-Air Advocate Podcast. We discussed my journey while caring for my dad, who suffered from vascular dementia in addition to diabetes, high blood pressure, kidney disease, heart disease, and depression. Caring for an ill loved one is a privilege, but it can also be very difficult. Caring for a parent with dementia is especially challenging and quite painful at times, as it requires a mindset shift. You are forced to modify your lifelong image of your parent as your protector to realizing they are now the one who needs protecting. This role-reversal causes a full range of emotions, including denial, fear, anger, and sadness. It’s like watching the downfall of a superhero.
So, what is dementia anyway?
Dementia is a very broad term used to describe changes in the brain that lead to problems with thinking, memory, and reasoning. It also causes changes in behavior and personality. There are numerous causes of dementia, most of which are irreversible. Alzheimer’s disease is the most common cause of dementia and is responsible for approximately sixty percent of cases. Vascular dementia, the form of dementia my father had, is the second most common cause of dementia. It is caused by a partial or complete blockage of blood vessels in the brain and is associated with diabetes, high blood pressure, high cholesterol, and heart disease.
When caring for someone with dementia, you will inevitably find yourself in the role of advocate. As is true for children, we must be the voice for our family members with dementia. This is especially important when interacting with healthcare professionals to ensure that your loved one’s medical needs are met.
When advocating for your loved one with dementia in a healthcare setting, consider the following special considerations:
The symptoms can be subtle.
The cognitive changes associated with dementia tend to occur gradually and can sometimes be very subtle, particularly in the beginning. Concerns expressed by family members may initially be minimized by health care providers or attributed to the normal aging process. Be specific when describing new or worsening symptoms. Saying, “he just isn’t himself” is unlikely to get the doctor’s attention. It will be helpful to keep a journal of your loved one’s symptoms and present this information to the doctor. Not only will this provide objective data, but it can show the progression of symptoms over time. One of the things I noticed about my dad was a significant deterioration in his handwriting. During one of his appointments, I shared his bedside notepad which clearly illustrated my concerns. Trust your gut. If your instinct says something is wrong, be persistent until your concerns are addressed.
If your instinct says something is wrong, be persistent until your concerns are addressed. Click To Tweet
The symptoms can wax and wane.
The symptoms of dementia can fluctuate significantly. It is not uncommon for individuals to have several good days or even weeks, followed by an abrupt decline in functioning. This can make it difficult to get a timely and accurate diagnosis. When you call to make the doctor’s appointment, your family member may be significantly impaired. By the time you get an appointment several weeks later, she may have bounced back and may seem relatively normal during the doctor’s evaluation. It’s also important to note that individuals with dementia can sometimes pull themselves together enough to appear relatively normal in public, particularly at the doctor’s office. This can be particularly frustrating for the family member trying to get help and may cause others to feel you are exaggerating symptoms. This is where your smartphone can come in handy. Take a short video of your loved one’s concerning behaviors and show this to the doctor during the appointment. Having a visual representation is invaluable.
Take a short video of your loved one's concerning behaviors and show this to the doctor during the appointment. Having a visual representation is invaluable. Click To Tweet
Getting a definitive diagnosis may take months or even years.
It took several years for my dad to be given the diagnosis of vascular dementia. The early signs were subtle and even I, a physician, wasn’t sure what was going on. In retrospect, one of the earliest signs was difficulty managing his finances. When my sisters and I first began caring for our dad, we noticed numerous unpaid bills on the kitchen table, which was very atypical for him. He also wasn’t eating properly. He seemed to have a normal appetite, but either wasn’t interested in preparing food for himself or perhaps had forgotten how to do so. Sometimes his judgment would be impaired, or he would make statements that didn’t make sense, like sincerely questioning why a patty made of beef was called a hamburger. (That’s a real story.) Because none of these symptoms are considered “medical emergencies”, his doctors didn’t seem to have much interest in investigating the cause. Over the course of 2-3 years he had several CT scans of the brain, none of which showed signs of a stroke. Finally, after several neurology appointments and an MRI scan of the brain, it was determined that he had chronic changes indicative of impaired blood flow, consistent with vascular dementia.
There is no single diagnostic test for dementia. The diagnosis requires a thorough medical history and physical examination, mental status and psychological testing, blood tests, and brain imaging. Since the symptoms develop gradually over time, it may take a while before they are considered significant, even to close contacts.
As an advocate for a family member with dementia, please understand that this is a marathon, not a sprint. Do not allow yourself to be discouraged by numerous doctor visits and having to tell the story over and over again. Speak up and be persistent. Provide concrete examples of your concerns. (Don’t forget video!) Be sure to ask directly, “Could this be dementia?” Often, the mere suggestion of a specific diagnosis can move things along. You can do it!
As an advocate for a family member with dementia, please understand that this is a marathon, not a sprint. Click To Tweet
If you have questions about caregiving and dementia or tips to offer the Your GPS Doc community, please be sure to leave a comment.
Click below to watch the video of my discussion with Tammy Flynn of The On-Air Advocate Podcast.
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