Diagnosing Dementia—a Personal Story
It’s still not possible to say definitively that an older person’s progressive dementia is caused by Alzheimer’s disease—until they’re dead and an autopsy is performed on the brain. However, specialists are becoming more confident that behavioral symptoms, neurological testing and the results of brain scans (MRI) can be narrowed down enough to diagnose the disease on a living person, even in its early stages. Because of this progress, on March 3, 2016, my 77-year-old husband and I sat with a neuropsychiatrist who felt he could tell us with a high degree of surety that Dennis’s cognitive and neurological issues were characteristic of both early-stage Alzheimer’s and Vascular dementia.
Arriving at this diagnosis had taken more than a year. Because there can be value in knowing early that one has Alzheimer’s and also vascular reasons for cognitive decline, I asked Beverly if I could share a summary of the process with our readers. The hope is that both families and caregivers will learn something that could help put a name to disturbing symptoms and provide some guidance on how to proceed with the highest degree of hope and understanding. At first Dennis didn’t want to know, but now that he does, we’re both glad that he went through the whole process. Every case is different, so please do not take this account as medical advice.
We first started paying close attention to physical and mental changes in February of 2015, when Dennis had 3-4 unexplained falls, after which he had difficulty getting back up. It seemed like for a few minutes the signal to move couldn’t get from his brain to his legs and feet. Other symptoms noticed mostly by me included (not in any particular order):
- A progressively slower, shuffling, short-stepped gait (observed even before the falls)
- Slower speech and less participation in conversations
- More difficulty thinking of specific words and concepts
- Sometimes talking “around in a circle” while trying to arrive at the meat of a story
- 2-3 incidents of getting lost when driving by himself in what should have been a familiar area
- A decrease in driving skills in general
- Lessened ability to follow instructions, especially those with more than 1 step
- Decreased ability to perform some household tasks, such as cooking
- Sleep deprivation
Process of Elimination
Dennis first saw his PCP about the falls. The Dr. recommended that he see a neurologist, which he did in March 2015. He was given a variety of short tests, some related to walking and balance and others to mental acuity. I accompanied Dennis on this visit and was able to report on behaviors that Dennis was not fully aware of. Because several serious diseases begin with falls, i.e., Alzheimer’s, MS, Parkinson’s, ALS, etc., it was determined that additional testing and a process of elimination of possible reversible causes of both physical and mental issues were needed. Over the course of several months, the following took place:
- An MRI
- Multiple consultations and short testing with a neurologist
- Withdrawal from a medication known to affect memory
- Two rounds of rehab/physical therapy (PT) for balance and walking issues
- An oral and on-road driving test
- An overnight sleep test in a sleep lab
- A 3-hr. neurological/psychological test; results were compared to others his age and education level; my input was sought during the first 30 minutes; test included a variety of combined mental and physical skills
During the course of a year of tests and therapy, MS, Parkinson’s and ALS were eliminated as possible causes. The MRI results were typical of a mild cognitive decline: Dennis’s brain was smaller than other men his age and also showed micro-vascular changes, possibly due to mini strokes. The PT greatly improved balance and walking issues and has prevented recent falls. The driving test was passed by a small margin. The sleep test revealed moderate to severe sleep apnea, currently being treated with C-PAP and on-going evaluation. All of the tests and their results were analyzed by the University of Utah Neurological team and the neuropsychiatrist we met with on March 3, 2016. He showed us slides of Dennis’s brain, and he explained the results of the MRI, as well as the scores on the neuro/psych test. The overall test performance was judged to be poor (worse in some areas than others). The combined MRI and test results determined the diagnosis of early-stage Alzheimer’s and vascular dementia. He was prescribed the drug Aricept to increase the brain chemicals involved in storing memories, and he was told that because of the early-stage diagnosis he could also participate in clinical drug trials.
Because Dennis’s symptoms seem to have progressed minimally over the past year, and because of his improvement in some areas, we were told that with regular physical and mental exercise and social interaction, his mental abilities could possibly stay close to the same for several years. A repeat of the neuro/psych test is recommended in a year to judge degree of decline, if any. We were told to watch for changes in the following common symptoms:
- cognitive ability (both memory and reasoning)
- ability to initiate/plan activities
- inability to recognize abnormal behavior (not the same thing as denial)
I was also given some good advice to help me cope with the above-noted changes in behavior (some easier said than done!):
- Give him time to form and verbalize his thoughts; don’t speak for him.
- Don’t say “I already told you that.” Just repeat without comment.
- Only repeat things that are important for him to understand and to stay safe.
- Give help with everyday tasks only as needed.
- Initiate and plan activities, especially those that may slow the progression of the disease.
- Do most of the driving and encourage him to only drive to familiar destinations—not at night or on the freeway.
- Take over the finances.
- Take advantage of available written information and counseling/support group opportunities.
No one wants to hear the words Alzheimer’s or dementia as part of a personal diagnosis. It is a lifestyle change that affects the whole family. We were told to tell our children so that they can plan for who will care for Dennis if I should pass on first, and so that they will be able to react to his changing behavior in the most positive ways. You may think YOU don’t want to know, but remember that an early diagnosis can be a very good thing that helps the whole family to cope and prepare for the future. New discoveries are being made about Alzheimer’s every day. Taking part in trials can not only help you and your loved ones, but also the many others who have or will have the disease.
by Marti Lythgoe, NL Editor