New challenge for caregivers: The internet

In the age of online living, caregivers lack support, resources and guidelines to help the vulnerable people who rely on them, according to an initial study, to be presented May 12, at the Association for Computing Machinery Human Computer Interaction (ACM-CHI) conference in San Jose, California.

The study is one of the first to examine the role of caregivers in the online lives of adults with cognitive impairments from Alzheimer's disease and other conditions. In a world where many everyday activities have moved online, caregivers face a new challenge: finding a balance between autonomy and protection of care recipients.

"We want people to stay independent and engaged online, but current online systems make it difficult to help people in a way that empowers them without reducing their access," said lead researcher Anne Marie Piper, assistant professor in the department of communication studies at Northwestern's School of Communication.

"E-mail and social media sites aren't designed to have a caregiver come alongside someone with cognitive impairments and help them stay active online."

The researchers used focus groups consisting of 20 people informally caring for loved ones with Alzheimer's, dementia and other brain-related conditions. They detailed four main ways caregivers currently help people with cognitive impairments use the Internet -- "guiding, stimulating, connecting, and protecting," with guidelines about how to improve those dynamics.

Caregivers could set up family accounts to support home computer use among family members. They also should learn how to recognize when vulnerability may be transitional, such as a gradual recovery after a stroke or a progression from early to late stage dementia.

Finally, the researchers recommended implementing a system that would allow caregivers to detect risky online situations. For example, if a password or credit card were disclosed, a transaction would be held for review by the primary caregiver. These ideas, however, raise new ethical questions about who has control over a person's online life, Piper said.

"Technological caregiving is a new form of work," Piper said. "We hear about the physical, financial and social stress of caregiving, but no one ever talks about the burden caregivers feel to keep people active online, which we feel is a fundamental part of participating in society."

According to the study, caregivers support online activity in the following ways:

Guiding: Caregivers may help someone type words into a search engine or operate a mouse. Even previously tech-savvy care recipients may need to re-learn how to use a specific technology. "What's challenging is that cognitive impairment is dynamic, and an individual's needs may shift day-to-day or even moment-to-moment," Piper said.

Stimulating: Social media can be a form of entertainment or stimulation. Caregivers play "brain games," read news sites or view online photos of family members. "This interaction can help alleviate some of the burden of caregiving and provide a mutual source of enjoyment," the researchers found. It also means caregivers have to spend time searching for content, identifying meaningful photos or videos and working it into a conversation.

Connecting: Facebook is a particularly important site for social support, caregivers said. In the study, they mentioned posting weekly updates on Facebook, Instagram, Blogger.com and Caregiver.com. The ways caregivers post online information "introduces tensions around surrogacy, privacy and information sharing for vulnerable populations," the researchers wrote.

Protecting: Caregivers use spam filters and set restrictive privacy settings to help avoid phishing and to block harmful websites, friend requests or potentially upsetting information. They vigilantly watch for online financial threats. "The challenge is deciding when and under what circumstances a care recipient should not have access to credit card information required for online purchases," the researchers wrote. "Sometimes it's not until an adverse event like identity theft or overspending that the caregiver realizes they need to protect their care recipient online."