Indiana Researchers to Explore How Dementia Screening Affects Family Members

A study at the Indiana University Center for Aging Research, exploring how screening seemingly healthy older people for dementia impacts family members, has been awarded a $126,000 grant by the National Institute on Aging.

The study, called “Effects on Families of older adults Experiencing Cognitive Testing (EFECT),“ is an outgrowth of the CHOICE trial at Indiana University — where potential benefits and disadvantages for people being screened are under investigation in a similar manner. CHOICE (NCT01699503), which is currently enrolling participants at its three study sites in the state, aims to recruit 4,000 people, age 65 and older, from primary care practices.

“EFECT is the first study to investigate if the benefits for family members — who may likely evolve into caregivers — of early dementia screening of seemingly cognitively healthy older adults outweigh the harms,” said the study’s leader, Nicole Fowler, in a press release. “Our results will directly inform optimal care for older adults at risk of dementia as well as impacting the lives of the spouses, daughters, sons, and other family members who face the daunting task of caring for a loved one with dementia.”

The EFECT study, which has not yet started, will measure how much family members know about the screening process, and if they are prepared for a potential caregiving role, including the ability to plan for future care needs. “We will also be able to assess if early identification of dementia by screening harms family members by inducing anxiety or depression,” said Dr. Fowler, who in two earlier studies reported finding that more than half of the people at risk for age-related dementia are prepared to be screened at care centers.

In addition, the study will explore how such screenings impact the health-related quality of life and well-being of the family’s other members.

Both studies are a result of the emphasis placed by the United States Preventive Services Task Force on research into the impact of screening on both patients and caregivers within a family. Recent estimates find that about half of the people affected by dementia in the U.S. are not diagnosed, a number screening would undoubtedly change.

“Delaying a diagnosis of dementia has the potential to impact the family member’s behaviors toward the patient and their perceived role,” said Dr. Fowler, explaining that people often believe that cognitive decline is part of a person’s normal aging process. Research shows that such beliefs worsen feelings of stress, burden and isolation among family caregivers — a situation that, in turn, might lead to less-than-adequate care.

The National Institute on Aging also awarded $2.65 million to support the CHOICE study through 2017.