“‘Is genetic testing available for Alzheimer disease?’ is one of the most common questions I hear in the Clinic,” says Emily Dwosh, a genetic counsellor in the UBC Hospital Clinic for Alzheimer Disease and Related Disorders (UBCH-CARD) at the Djavad Mowafaghian Centre for Brain Health.
“Another common question is, ‘Are other members of my family at risk for dementia?’”
UBCH-CARD is a multi-disciplinary Vancouver Coastal Health clinic where patients can expect to meet with different health care professionals throughout the day of their appointment.
“Many people aren’t sure what to expect when they see ‘genetic counselling’ booked on their schedule,” says Colleen Guimond, a genetic counsellor who facilitates much of the interaction between patient care and research at the clinic.
Genetic counsellors are health professionals with specialized training and experience in the areas of medical genetics and counselling. Genetic counselling for patients with Alzheimer disease and other memory disorders is a unique feature of UBCH-CARD, and one that can ease a lot of the worry that comes from receiving a diagnosis of these conditions.
Emily Dwosh and Colleen Guimond offer clarity and reassurance to patients with dementia and their family members.
“Genetic counsellors at UBCH-CARD meet with patients who have recently been diagnosed with dementia or with people who are concerned because of their family history,” Colleen explains. “During our session, we document the family history and use our time together to ensure that patients leave with a good understanding of their own diagnosis and implications for their relatives.”
Typical sessions include a review of the patient’s diagnosis and the different types of dementia, the chances for this condition to affect other family members, and conversations about the availability and implications of genetic testing.
“Only rarely does dementia have a purely genetic cause,” says Emily.
Alzheimer Disease is most often caused by a complex interaction between genetic and environmental factors, with age being the greatest risk factor. This is reassuring to many families who assume that their relatives are at a high risk to develop the condition as well. “We spend a lot of time talking about healthy brain aging and protective actions family members can take to help preserve cognitive function,” says Emily.
UBCH-CARD: An interface between patient care and innovative research
Genetic counsellors can provide access to current information about clinical trials and facilitate other opportunities for interested patients to participate in research.
“There’s always been a link between research and clinical care,” says Colleen. Since 1985, genetic counsellors with UBCH-CARD have been collecting family histories to establish hereditary elements of disease, to match patients to research studies, and to serve as a liaison between patient care and research.
“It is especially satisfying to be able to take findings discovered through local research and use them to inform our clinical practice.”
“Working as a genetic counsellor in a specialized clinic offers many unique opportunities,” notes Emily, who has been with the Clinic since 2001. “By having a special focus on the genetics of dementia, and by following families over a long period of time, we are able to address common issues, provide ongoing support, and draw on our experiences with previous patients to tailor the care of new families.”
For more information on the research and care taking place at UBCH-CARD, attend the 2016 Alzheimer Update on January 30. Check out the event listing or email alzheimer.events@ubc.ca for futher details or to RSVP.
