A Dementia Diagnosis: to Know or Not to Know
According to the World Health Organization, there are 55 million people currently living with dementia worldwide with another 11 million new cases occurring per year. The Alzheimer’s Association projects that in 2022, the nationwide cost of Alzheimer’s and other dementias will reach $321 billion; these are staggering statistics, folks.
To clarify, many think that the terms “Alzheimer’s” and “dementia” are synonymous, but they’re not. Dementia is an umbrella term to describe the symptoms that individuals experience such as challenges with their memory and/or diminished executive functioning abilities. Alzheimer’s, on the other hand, is a form of dementia, among several others.
The most common forms of dementia are:
- Mixed dementia (diagnosed with more than one type)
- Lewy body
- Mild Cognitive Impairment
Alzheimer’s is far and away is the most common form of dementia, accounting for between 60%-80% of all dementia cases. While your medical provider may not always be able to tell you conclusively what type(s) of dementia the patient has, there are traits and patterns within each form that will guide them in providing you with a diagnosis.
For example, a patient in their 40s-60s presenting with behavioral irregularities and/or problems with speech may lead the physician to a Frontotemporal Dementia (FTD) diagnosis. Someone who has experienced a stroke, where blood flow to the brain has been impacted, could easily lead the MD to a vascular dementia or vascular cognitive impairment (VCI) diagnosis.
There is currently no cure for any form of dementia.
If there is no cure, however, and all roads pretty much lead to the same place, is it even important to have a diagnosis?
I think it IS important and for the following reasons:
- Knowledge is power and is its own form of advocacy
- You will know what to expect
- Planning for the future will become timely and essential
- Making wishes and preferences known
- Seeking out support
- Spending quality time together
Learning as much as you can from medical and other professionals is key. Baseline cogntivie testing will allow you and your family to monitor the progress of the disease. Additionally, read all you can about the disease so you know what to expect.
Once someone is no longer “competent” they cannot execute legal documents such as a power of attorney, a Will, or healthcare directives. An early diagnosis will provide you with plenty of time to thoughtfully make decisions about your wishes and who you would like to appoint to carry them out.
When it comes to caring for someone with dementia, it really does “take a village.” Support will be necessary and in many forms. Who will provide care as the disease progresses? The spouse, adult children, paid care providers, a memory care center? Do you know what each of these options entails or costs? An early diagnosis gives you time to research your options and plan for the future.
There is no substitute for time together. Many people have said that they have learned new things about their family member as the disease progresssed. Somethimes a previously hidden sense of humor or sense of authenticity emerges that wasn’t present before. My experience has shown me that many individuals with dementia have “dropped the filters” that used to exist and now they are simply “telling it like it is.” Depending on the situation, this can be a pro or a con, but often it is quite revealing.
It’s their journey ~ a journey unique to themselves.
A dementia diagnosis guarantees that things will change, but the pace is unknown and some individuals present with more challenges than others.
I say it daily, “If you have met one person with dementia, you have met one person with dementia.” Every person is different and the trajectory of their (yes, it is theirs and theirs alone) journey is unique. An activity that interests your family member on Tuesday morning, may not interest them on Tuesday afternoon. Oatmeal may taste great on Monday, but not Wednesday. The volatility of the disease requires inordinate flexibiily on the part of the caregiver, along with a heavy dose of patience and understanding.
In the end, a diagnosis can lead to more support, better planning, greater empathy, and, hopefully, an enhanced experience as a result.