As I shared in my last blog, recently my Mom was diagnosed with Lewy body dementia (LBD). This news didn’t come as a big surprise since my Mom was having symptoms that included as hallucinations, mental confusion, vivid nightmares, and disorientation, along with several other problems.
However, it would have been helpful to have this diagnosis earlier.
In fact, three-quarters of the estimated 36 million people with dementia worldwide do not have a formal diagnosis, according to a report by the Alzheimer’s Society. I wanted to share my own experience so you’ll understand the importance of getting an early diagnosis and can avoid some of the mistakes we made.
A few years ago, my mother, now 77, began having problems typical of growing older. She couldn’t keep appointments straight, was easily confused, and often got words got mixed up.
After her hip replacement surgery two years ago, however, it became much, much worse. For six weeks, my Mom didn’t know where she was and often thought I was a nurse and not her daughter. Her surgeon acted like this was fairly normal after an older person is anesthetized. Although her mind improved, mentally she was never the same as before the operation.
When we brought this up with her primary physician, he gave her a mental test which she was unable to pass. “You knew something wasn’t right, didn’t you?” he asked. Then he ordered some blood work and a MRI of my Mom’s brain, which I thought would surely lead to a diagnosis. However, as I soon discovered, the test only eliminated other possible causes of my mother’s mental decline such as stroke.
Here’s what I learned: There is no single test that can show whether a person has Alzheimer’s or LBD. These diseases can only be diagnosed with complete accuracy after death with a brain autopsy. Nonetheless, experts estimate a skilled physician can diagnose Alzheimer’s and other types of dementia with more than 90 percent accuracy with a thorough medical history, mental testing, a physical and neurological exam, blood tests, and brain imaging to rule out other causes of dementia-like symptoms.
Unfortunately, after the MRI did not show any conclusive results, my Mom’s doctor did not encourage us to see a neurologist, strongly hinting that there wasn’t a whole lot the medical field could do to help someone with dementia. On top of that, my Mom stubbornly insisted she did not want to visit a specialist. She was afraid of more testing, which she absolutely hated, and preferred not to know if she had Alzheimer’s.
After some research, it was clear that several of Mom’s symptoms matched LBD. However, I allowed my Mom’s feelings and her doctor’s advice to prevent me from getting a formal diagnosis – that is, until the hallucinations began. At first, they were the result of medications she was taking such as antihistamine and pain pills. If we avoided these drugs, she seemed okay. Then, the doctor prescribed water pills to help lower my Mom’s blood pressure and the hallucinations were so scary, we landed in Urgent Care.
That doctor pulled me into a room and told me that hallucinations were not a typical side effect of water pills and warned me that my Mom’s dementia would only get worse. She stressed the importance of seeing a neurologist who had the experience and expertise to determine which specific type of dementia was causing my mother’s symptoms. Although many types of dementia cannot be cured, she said, there are ways to manage symptoms and having an accurate diagnosis would help us plan for the future.
How right she was!
What I Learned About Dementia
Before all this happened, my knowledge of dementia was limited. In fact, I had never even heard of Lewy body dementia.
Here is what I learned: Dementia is actually not a single disease. It is a blanket term that describes a category of symptoms that can impact memory, judgment, language, and motor skills. These symptoms are triggered by brain diseases and disorders like Alzheimer’s and other types of dementia.
Collectively, dementia is quite prevalent among aging people. Overall, about one-third of individuals aged 65 years and older develop at least one form of dementia by the time they die.
Three of the most common types of dementia include:
- Alzheimer’s disease, which accounts for 60 to 80 percent of dementia cases. Early signs include difficulty remembering recent conversations, names or events, as well as apathy and depression. Later symptoms include impaired communication, poor judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking.
- Lewy body dementia is the second most common type of dementia after Alzheimer’s. LBD is associated with abnormal deposits of a protein called alpha-synuclein called Lewy bodies which affect chemicals in the brain. This brings on symptoms that include memory loss and thinking problems mimicking Alzheimer’s disease. However, people with LBD are more likely to have early symptoms such as sleep disturbances that can include night terrors, acting out dreams, and talking in their sleeps as well as vivid, well-formed visual hallucinations. LBD also includes Parkinson disease-like symptoms including muscle rigidity, difficulty walking, and tremors.
- Vascular dementia is less common accounting for about 10 percent of dementia cases and is a result of brain injuries such as microscopic bleeding and blood vessel blockage. Impaired judgment or the ability to make decisions, plan, or organize is typical of onset symptoms instead of the memory loss associated with the initial symptoms of Alzheimer’s.
Other dementia diseases include Parkinson’s disease, frontotemporal dementia, Creutzfeldt-Jakob disease, normal pressure hydrocephalus, Huntington’s disease, and Wernicke-Korsakoff syndrome.
Something else I’ve learned is that a patient can have “mixed dementia” which the neurologist said could be the case with my Mom. That means more than one type of dementia can occur simultaneously in the brain. Recent studies suggest that mixed dementia is more common than previously thought. In the most common form of mixed dementia, the abnormal protein deposits associated with Alzheimer’s disease coexist with blood vessel problems linked to vascular dementia. Alzheimer’s brain changes also often coexist with Lewy bodies. In some cases, a person may have brain changes linked to all three conditions — Alzheimer’s disease, vascular dementia, and LBD.
Why an Early Diagnosis is Important
While it is true that there is no cure for Alzheimer’s or LBD, an early diagnosis is beneficial in several ways.
A specialist can help you find the right treatment plan for your parent that can include medications and lifestyle changes to help with symptoms. In my Mom’s case, her doctor prescribed drugs to help her with anxiety and depression as well as medication for her hallucinations.
In addition, health advisers can answer your questions as well as help you understand the different progressive stages of the disease and anticipate your parent’s needs. They can direct you to the support services that can help lessen the impact of dementia on you, your parent, and your family.
The unknown is scary and it was, in a strange way, comforting for me and my family – and even for my Mom – to know exactly what was causing her strange symptoms and what we could expect in the future.
Since dementia will progressively get worse, it’s important to develop a relationship with doctors, health care professionals, and support services. An early diagnosis will give you time to do so. You’ll also have more time to make plans for the future and allow your parent to express his or her wishes regarding care and living options.
One more thing, having a diagnosis can help caregivers make better informed medical decisions. For example, we learned that people with LBD “often respond to certain anesthetics and surgery with acute confusional states (delirium) and/or may have a precipitous drop in functional abilities which may or may not be permanent,” according to the Lewy Body Dementia Association (LBDA). Although I doubt a specialist could have given my Mom an accurate diagnosis prior to her hip surgery, we now have information that will help us make wise decisions regarding any possible future surgeries.
So if you are noticing some of the symptoms I’ve mentioned, by all means, see a specialist which may include a neurologist, neuropsychologist, and gerontologist so your parent is accurately diagnosed and can reap all the benefits of an early diagnosis.
In my next blog, Part Three of this series, I’ll be sharing some specific tips for caregivers.