Partners in FTD Care, Winter 2022
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For many people facing potential FTD caused by a genetic variant, either for themselves or a family member, deciding to undergo genetic testing can be complicated and challenging. The decision to know (or not know) one’s genetic FTD status can feel overwhelming, and invariably comes at an already vulnerable time in one’s life. Families should be encouraged and empowered to take advantage of genetic counseling and mental health services available during this time, to help process the complex emotions involved before, during, and after they make their decision. Regardless of how they proceed, families should not have to privately struggle with their decision – they should be given easy access to genetic counseling, psychological counseling, and other coping tools as needed.

It is strongly recommended that individuals and families who are considering testing first meet with a genetic counselor. However, if they indicate that they want to forgo this step, consider referring them to a mental health specialist who works with families living with dementia. Talking to a specialist about why they are hesitant to see a genetic counselor can reduce one’s anxiety around this first meeting. Also, make sure that families understand that having a first meeting with a genetic counselor to discuss their concerns and questions does not commit them to moving forward with a genetic test.

For some, knowing the results of a genetic test (even if positive for a genetic variant) is less distressing than living in uncertainty. Research indicates that the majority of those tested demonstrate effective coping skills and absence of negative psychological reactions after several months and found the testing beneficial (Steinbart et al., 2001). More study on this subject and the long-term effects of testing for young-onset dementia is needed.

In addition to helping inform the decision around genetic testing, genetic counselors can also help families learn about coping and adaptation skills. This might include the concept of “post-traumatic growth,” defined as a positive change or changes resulting from one’s struggle to deal with a trauma and its consequences. One type of therapy that supports these counseling goals is cognitive behavioral therapy (CBT), which is based upon the relationships between our thoughts, behaviors, and emotions. It focuses not only on what a person knows about their genetic condition or risk, but also on the things they think and believe, elements that inform their emotional response. CBT techniques can assist in coping with genetic-test results, as well as identifying the “distorted thoughts” and “irrational beliefs” that are often the source of emotional distress (Biesecker et al., 2017). Consider referring an individual or family to a CBT specialist or another therapist with experience in dementia to treat psychological distress.

Ongoing support is vital. The genetic testing process can cause anxiety, depression, fear, and guilt; a positive test can have significant impact on one’s lifestyle, insurance rates, and choices about family planning. It is therefore vital for families to know they are not alone in coping with the possible outcomes – there are skilled professionals who are available to provide help. Through information, knowledge, and psychological support, genetic counselors and mental health service providers can equip families to face the decisions ahead – and, regardless of a family’s decision, serve as an important resource to help them cope.

Sources:

Biesecker B, Austin J, Caleshu C. Theories for Psychotherapeutic Genetic Counseling: Fuzzy Trace Theory and Cognitive Behavior Theory. J Genet Couns. 2017; 26(2):322-330. doi:10.1007/s10897-016-0023-1.

Lerman C, Croyle RT, Tercyak KP, et al. Genetic Testing: Psychological Aspects and Implications. J Consult Clin Psychol 2002; 70:784–97.

Sexton, A, West K, Gill G, Wiseman A, Taylor J, Purvis R, Fahey M, Storey E, Walsh M, James P. Suicide in Frontotemporal Dementia and Huntington Disease: Analysis of Family-Reported Pedigree Data and Implications for Genetic Healthcare for Asymptomatic Relatives. Psychol Health. 2020 Nov.; 24:1-7. doi: 10.1080/08870446.2020.1849700. Epub ahead of print. PMID: 33232178.

Steinbart EJ, Smith CO, Poorkaj P, Bird TD. Impact of DNA Testing for Early- Onset Familial Alzheimer Disease and Frontotemporal Dementia. Arch Neurol. 2001 Nov; 58(11):1828-31.

Tibben A, Stevens M, de Wert GM, Niermeijer MF, van Duijn CM, van Swieten JC. Preparing for Presymptomatic DNA Testing for Early Onset Alzheimer’s Disease/Cerebral Haemorrhage and Hereditary Pick Disease. J Med Genet. 1997 Jan; 34(1):63-72.

See also:

• Does It Run in the Family?: The Genetics of FTD
• The Role of Genetics in FTD: An Overview
• From a Caregiver’s Perspective: Deciding to Learn One’s Genetic Status
• What to Know Before Ordering Genetic Testing
• What to Do About…The Decision to Learn One’s Genetic FTD Status
• Download the full issue (pdf)