December 6, 2011
By Kathleen Kelly, Executive Director, Family Caregiver Alliance
Editor’s Note: This post was originally featured on the Disability.gov Blog.
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 does one 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, make life easier for the family caregiver, determine what technologies have been used, 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. The survey was marketed for four months over the summer and 421 surveys were started with 319 completed.
The survey responses yielded some interesting findings. Sixty percent responded that they had used assistive technologies: mobility aids (93%); bathing aids (89%); technology for emergency calls for help (84%); medication management (75%); and toileting aids (73%). Thirty-one 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 these technologies 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 sixty 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 over half reported moderate to heavy physical strain from such tasks. Over 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 activity, “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 for this information.
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 proved 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.