Video System Connects Dementia Patients & Caregivers

April 30, 2010

University of Miami's Center on Aging provides personal, real-time support for care givers in their own homes via collaborative videophone technology.

According to Dr. Sara Czaja, co-director of the University of Miami's (UM's) Center on Aging, and professor of psychiatry and behavioral sciences, an estimated 22 million family members provide at-home care for disabled and ill relatives. Twenty percent of these caregivers provide care for family members who have dementia. Many of the caregivers also suffer from ill health, self-neglect, a sense of isolation and depression, she says.

To help such people, the UM Center on Aging embarked on a pilot program aimed at learning how best to support those who care for family members with dementia in Miami's African-American, Haitian-American and Hispanic communities. This program — called A Computer Integrated Telephone System for Family Caregivers of Dementia Patients — is assessing the feasibility and effectiveness of providing personal, real-time support for caregivers in their own homes via collaborative videophone technology.

According to the Alzheimer's Association, as many as 5.3-million people suffer from Alzheimer's disease nationwide. Family members provide care at home for about 70 percent of people with Alzheimer's disease, meaning that family caregivers for Alzheimer's patients number in the millions — and the number will grow as America's baby boomers age.

“There's a trend in our healthcare structure away from institutional care to care in home environments,” observes Czaja, who is also the pilot program's principle investigator.

Many caregivers, however, lack the skills required to deal with behavioral problems, such as wandering and agitation, or to perform tasks, such as bathing and feeding their loved ones. As a result, caregivers can become overwhelmed. According to Czaja, other unintended consequences include caregivers' inability to leave their loved ones, which can prevent them from accessing the resources, training and support they need — and from participating in community programs, such as support groups.

The caregiver role ultimately affects caregivers' opportunities for employment, socialization and recreation. As a result, says Czaja, “There's a higher incidence of depression among family caregivers, and they start to neglect their own health.” This affects not only the caregivers' well being, but also their ability to care for their loved ones.

Focus on technology and seniors

The Center on Aging has a tradition of embracing technology solutions to enhance the lives of older people. “Aside from our caregiver project, we have a center that's actually funded by the National Institute on Aging called CREATE (Center for Research and Education on Aging and Technology Enhancement). And the whole focus of CREATE is technology and aging,” explains Czaja.

“We see technology as holding a very promising role in terms of intervention delivery — delivering services and programs to people who have limited access to services and programs, and enhancing the independence and well-being of older adults,” Czaja adds.

Although programs that use technology interventions to care specifically for caregivers are fairly unique in the world of medical research, A Computer Integrated Telephone System for Family Caregivers of Dementia Patients is the fourth such study the Center on Aging has tackled in the past 10 years. It is the first, however, to employ videophone technology.

The initial caregiver-focused study was the first phase of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) project. The Center on Aging collaborated with several institutions on this program, which involved providing caregivers with phones that displayed menu-driven, text-based instructional materials. Caregivers also used the phones to participate in support groups.

Of the current study, Czaja says, “We thought the next logical iteration would be to have video capacity so the caregiver and the clinician could actually see one another, and so caregivers could have some form of face-to-face contact during support groups.”

Center researchers initially considered using computers in conjunction with phones, but rejected the idea. “It was too complicated,” Czaja recounts, “and at the time this program was actually conceptualized, it would have been much more cumbersome.”

In addition, the caregivers in the study were from lower socioeconomic groups; Czaja felt most of them would be more familiar with telephones than they would be with computers. The study's focus on minority caregivers reflects the center's “particular interest in trying to remediate healthcare disparities by making sure that all populations have access to programs and services,” explains Czaja.

Programmable phone selected

With a videophone solution and a laundry list of requisite capabilities in mind, Czaja's colleague, Sankaran Nair, tracked down Cisco's Unified IP Phone 7985G. The phone was programmable, had a large display area, and had buttons for delivering menu-driven services. The 7985G was determined the optimal solution at the time Czaja's group conceived the program.

Cisco's IBSG healthcare practice helped the center's IT personnel develop the program's technology solution. The research team also located a group within AT&T to help supply bandwidth to caregivers' homes. The Jacob and Valeria Langeloth Foundation provided primary support for the program.

The Center on Aging's technology solution includes Cisco Unified IP phones and Cisco 871 integrated services routers. A phone and router are installed in each caregiver's home, along with an AT&T DSL connection to deliver high-quality video over the Internet. The solution also includes a call center within the Center on Aging.

The center's staff directly manages the phones, which are connected to a secure Cisco unified communications server cluster on the university's network. This enables significant videophone features and statistical tracking of system use. The solution's VPN concentrator uses Cisco Catalyst 6500 Series switches and 3700 Series switches, Cisco 7600 Series routers, and Cisco 3845 integrated-services routers (gateways).

The study's commitment to help Miami's large, severely underserved minority communities presented its own set of difficulties. “This was an extremely challenging endeavor for us,” says Czaja. “We stretched our resources.”

“We see technology as holding a very promising role in terms of intervention delivery — delivering services and programs to people who have limited access.”

Czaja's group used the Center on Aging's in-house systems engineers and programmers to develop custom interfaces and applications for the videophones, calling on the Cisco IBSG team to help with phone-specific elements, as necessary.

After coding researchers' intervention ideas for the videophones, the program had to translate the interfaces and interventions from English to Creole and Spanish. Resources that are now available at the push of a button — in all three of the participants' preferred languages — include quick solutions for common problems (such as dealing with agitated or aggressive behavior); informational and instructional materials (in video and text formats); guides for accessing national and local resources; self- and clinician-generated reminders; and speed-dial phone lists. The phones also enable caregivers to participate in individual skill-building sessions with certified clinicians, and in video support groups with other caregivers.

Czaja's research group recruited caregivers in waves according to ethnicity. “Our caregiver support groups have to be in the participants' preferred languages,” she explains. In each wave, some caregivers received videophones, while two control groups did not. In all, the study has served a total of 120 caregivers, approximately 70 of whom received videophone interventions.

Greater implementation challenges followed each recruitment wave. “We had this assumption that people have Internet access, and that's a naïve assumption when you're dealing with poorer populations,” Czaja explains.

Providing adequate DSL services in underserved areas of Miami was a major hurdle. To receive sufficient bandwidth for DSL services, subscribers' homes had to be within a certain distance of a digital subscriber line-access multiplex (DSLAM) device. These devices connect multiple DSL lines to the high-speed Internet backbone. The closer a home is to a DSLAM, the higher the bandwidth it receives. Some participants' homes were not as close to a DSLAM as they needed to be for high-quality video delivery, a condition that necessitated some creative solutions.

With the videophones, clinicians now are able to see caregivers without having to visit them in their homes. Using the videophone intervention, clinicians can see three or four caregivers an hour.

Despite these challenges, the study is operating and is serving the final group of caregivers — participants from Miami's large and growing Haitian-American community.

“We were particularly interested in including Haitian-Americans,” Czaja relates. “They've been largely understudied in caregiver research, and they're a fairly significant population in Miami.”

Czaja and her researchers have not yet analyzed study data because the pilot study is still in progress. “Our caregivers are really enjoying the program and really finding it beneficial,” Czaja says. “They especially like the fact they can access resources and support, and participate in the program without having to leave their homes.”

With the videophones, clinicians now are able to see caregivers without having to visit them in their homes. Getting a nurse or someone out to determine if the caregiver is okay is not an easy task, explains Czaja. Commuting takes a significant amount of time and costs money, there are safety concerns when visiting certain locations, and some people do not have the means to pay for home-care services.

With travel time and paperwork, she estimates seeing three to five patients is all a clinician can accomplish in one day. Using the videophone intervention, clinicians can see three or four caregivers an hour.

Ultimately, Czaja says, if the videophone intervention helps caregivers find more free time because they have learned skills that have made them better able to provide care, if they become less depressed, and “if they are in better health themselves, you're going to decrease the likelihood that the patient will be placed, which is going to be a tremendous savings.”

Czaja says she would like to expand the videophone intervention program to include other groups — such as long-distance family caregivers, family members who care for stroke patients, or victims of chronic illnesses — and perhaps even patients themselves.

“We would really like to have continued support for the program, as we've put a lot into its development up to this point,” she summarizes.

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Published May, 2010

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