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, affecting the brain’s ability to think and remember as well as gradually causing 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,” says Lior Borovik, MS, CGC, 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 explains. “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 is only one factor indicating an individual is at a much higher risk of developing Alzheimer’s disease earlier in life (before age 65). But genetic testing results are not the sole factors to consider. Most cases of dementia are not due to genetic changes inherited from a parent. We know that people with diabetes, high blood pressure, high cholesterol and who smoke are at higher risk of developing dementia. Other risk factors are exposure to toxins or traumatic head injury. 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 explains.
Genetic counselors can provide some insights. If dementia appears to run in a family, genetic testing may provide some, though not all, answers. Diagnostic tests are helpful for early-onset cases; however, a negative test does not eliminate a potential inherited cause. Genetic counselors will piece together a patient’s family history, uncovering if family members had symptoms of dementia and at what age these symptoms began. From there, the genetic counselor will help the patient determine if genetic testing is a good option. Before getting tested, a genetic counselor will discuss testing considerations including the:
- Importance of making a deliberate and informed decision to have predictive testing
- Broader implications if the test results show an increased risk for disease
- Potential effects the results may have on a family
- Potential for discrimination as a result of disclosed test results
- Reasons for seeking this knowledge or choosing not to know
- 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.”
Call (605) 312-GENE to learn more.