Our memories and experiences mold each of us into who we are — from our favorite childhood moments and big life events to recalling the important people in our life. These shape the person we are and how we live.
But what happens when a person develops dementia and starts forgetting?
Though most often associated with Alzheimer’s disease, dementia is actually a symptom of a condition or disease, rather than a disease itself. It affects the brain’s ability to think and remember, as well as gradually causes a loss of motor, emotional and social function.
Dementia begins with forgetfulness, progresses to confusion and eventually causes problems with:
- Decision making
- Orienting to space and time
- Personality and mood, such as irritation, sadness or depression and manic episodes
- Problem solving
- Seeing or hearing things that aren’t there
“The scope of conditions and diseases that fall under dementia extend far beyond Alzheimer’s disease,” said Lior Borovik, M.S., C.G.C., a genetic counselor at Sanford Health.
Dementia is connected with many different conditions including vascular dementia, Huntington’s disease, Parkinson’s dementia and frontotemporal dementia. Understanding there are many different causes provides a clearer picture of the complexity of discovering a person’s risk.
“You may have heard that dementia runs in your family,” Borovik said. “But you need to know what kind, as that can help determine your potential risk and if genetic testing would even benefit you.”
Other than Huntington’s disease, no specific genetic test can provide a concrete answer about a person’s risk of developing dementia later in life.
There are several indicators for early-onset Alzheimer’s disease. Positive genetic testing results can indicate an individual is at a much higher risk of developing Alzheimer earlier in life (before age 65).
But genetic testing results are not the sole factors to consider. Most cases of dementia are not genetic or inherited.
People who smoke or have diabetes, high blood pressure or high cholesterol are at higher risk of developing dementia. Other risk factors are traumatic head injuries or exposure to toxins. However, beyond this knowledge, our understanding of dementia is still developing.
“Right now, there are still a lot of unanswered questions around dementia, and speaking with a genetic counselor can be very helpful,” Borovik said.
Meeting with a genetic counselor
Genetic counselors can provide some insights about your dementia risk.
Genetic counselors will piece together your family medical history, uncovering if family members had symptoms of dementia and at what age these symptoms began. From there, both you and the genetic counselor can determine if genetic testing is a good option.
Diagnostic tests are helpful for early-onset cases; however, a negative test does not eliminate a potential inherited cause.
Before getting tested, a genetic counselor will discuss predictive testing considerations, including:
- Determining the decision is informed, not coerced
- Effects on a family
- Implications if diagnosed
- Potential for discrimination
- Reasons for knowing versus not knowing
- Options for prenatal testing
“Genetic testing is only one part of the bigger picture,” Borovik adds. “You need to think about the implications of taking these tests and what it means for your future and your family’s future.”