I fired up the laptop to write a post about a report our friend John Sandblom shared with Vicki about higher mortality risks with antipsychotic drugs often used with older dementia patients (U.S. Food & Drug Administration’s Public Health Advisory: Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances; later confirmed in Europe). But my post took on a life of its own.
As I’ve watched Vicki’s doctors try different medicines and combinations of drugs to help alleviate the most extreme symptoms of her dementia, it’s pretty clear that her docs are doing a lot of “let’s try this and see what happens.” I’m sure a lot of our doctors do this to some extent. But most of the time we’re not in situations as significant as dementia and other neurological diseases.
The typical primary care physician or general practitioner rarely encounters Frontotemporal Dementia (FTD) or related types of dementia, so their ability to recognize, diagnose, and treat dementia’s symptoms may be limited. Alzheimer’s Disease is the most common type of dementia, but by many estimates other types of dementia account for about 40% of diagnosed dementia cases. And although research is starting to show promise, there isn’t a way to prevent or cure dementia, or in most cases even slow it’s progression.
Early diagnosis can help significantly in managing the quality of life for the patient through drug therapy, but most of the time early onset dementia is fairly advanced by the time it’s diagnosed.
As I’ve read about FTD, seen Vicki change over the past 4 years, and met and chatted with many other persons diagnosed with the disease, I’ve learned that this disease presents itself differently in different people. FTD is terminal, and there are identified stages almost every patient goes through. But unlike the stages of Alzheimer’s Disease which usually progress in a predictable sequence, the stages of FTD occur in different order in different patients.
With so many factors involved in FTD and other dementias, it’s a daunting task for health care providers, patients, and their families to recognize and live with these diseases – and everyone involved is affected. Vicki and I, along with others we know, try to learn as much as we can about the disease, pay attention to changes caused by the disease and changes caused by medications, and try to live each day as best we can.
I pray more. I hope for good days for Vicki, knowing that a “good” day for her now is a lot different than 2, 3 or 4 years ago. And I’m so grateful for our friendship as I walk with Vicki on her journey as best I can.
Thank you, Papa.