By Guest Blogger Kathleen Kelly, MPA, Executive Director, Family Caregiver Alliance, National Center on Caregiving
As the demographics shift to reflect an aging population, innovation abounds in the area of developing new assistive technologies to make life tasks easier for an individual with disabilities or for a family caregiver. How can you find out about existing or new technologies? One answer is finding information on the Internet, and a recent online survey of caregivers provides some insight into this question.
Recently, the Assistant Secretary for Planning and Evaluation in the Department of Health and Human Services embarked on a project entitled, “Accelerating Adoption of Assistive Technology to Reduce Physical Strain among Family Caregivers of the Chronically Disabled Elderly Living at Home.” A large title – and charge – to figure out the best ways to match assistive technologies to specific needs and then, get those technologies into the hands of family caregivers to use.
Some gaps in information remained after the literature search, particularly around how do family caregivers learn about and use assistive technologies. Some of the key questions for families were, “How do family caregivers learn about assistive technologies?” and when they do, “Who determines the need, how available is training on the use of assistive technologies and who pays for the technologies used?”
To this end, a brief survey was prepared by The Lewin Group to determine trend information on what types of assistive technologies are used to maintain independence and make life easier for the family caregiver, who paid for these technologies and some basic information about the caregiver filling out the survey. The survey was fielded online through the Aging and Disability Resource Centers, some Area Agencies on Aging and Family Caregiver Alliance, National Center on Caregiving. It was marketed for four months throughout the summer, and 421 surveys were started, with 319 completed.
The survey responses yielded some interesting findings. 60 percent responded that they had used assistive technologies: mobility aids (93 percent); bathing aids (89 percent); technology for emergency calls for help (84 percent); medication management (75 percent); and toileting aids (73 percent). 31 percent had also used an online communication tool to facilitate the caregiving process. While a majority indicated that these technologies helped a lot, almost two-thirds of family members paid for them out-of-pocket. For those who said that they had never used technologies, the majority stated that they were not aware of assistive technology options.
Almost 60 percent of caregivers said that they have never had any training in device use, simplifying self-care tasks or techniques to minimize the risk of physical injury from caregiving tasks, while more than half reported moderate to heavy physical strain from such tasks. More than two-thirds indicated a need for more help or information about assistive technologies and half needed training in use of technologies. The Internet was the main source of information about technologies, home modifications or training for family caregivers.
The survey respondents were overwhelmingly female, in their mid-fifties and providing assistance to a relative or friend with an average age of 73. One caregiver’s comment summed it up, “I practically turned into an occupational therapist trying to find ways to accomplish all the various activities of daily living which changed, and changed, and changed again throughout my mother’s decline. I did a great deal of research online to educate myself and come up with practical solutions.”
What were the “take-away” messages from this survey? While assistive technologies and home modification to make daily care routines easier were the major activities, “smart technologies” are increasingly being investigated and used by family caregivers. And the cost for all technologies is largely borne by family caregivers followed by the person with disabilities. Large numbers of caregivers are not aware of useful technologies and even fewer caregivers get any training about their use. And those who are seeking information and training are turning to the Internet.
What is needed to provide family caregivers with access about assistive technologies? While databases of assistive technologies exist online, there needs to be better linkage between a problem identified and the possible technology solution. Just a database alone is not enough and is often overwhelming. Next, there needs to be training on the use of technologies online using quality production values and available in multiple languages. Training needs to include how to identify the problem, match the technology (or modify the home) and finally instructions on use of the device, program or modification made to the home.
In addition, there needs to be training of professionals and paraprofessionals in the community about assistive technologies and most importantly, where to refer family caregivers and adults with disabilities for additional assistance. The use of assistive technologies has proven to be successful in preventing injuries and alleviating stress in family caregivers. Now the task at hand is making sure families have access and support in using these technologies, so they may provide better care at a lower risk for themselves and for their loved ones.
Kathleen Kelly is the executive director of Family Caregiver Alliance and the National Center on Caregiving. Ms. Kelly has more than 30 years of experience in program and state system development regarding the integration of family caregivers within health and social service systems. She has advocated for family caregivers in public policy, service development, professional staff development and the media.