Family Caregivers Need Access & Training on Assistive Technologies
Family Caregivers Need Access & Training on Assistive Technologies

Categories: Caregiving, Community Life, Technology

Family Caregiver Alliance, National Center on Caregiving Logo
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.

15 Responses to Family Caregivers Need Access & Training on Assistive Technologies

  1. Donmonique J. says:

    I have been disabled for 12 years and I am only 40. I have RSD, a disease without a cure. It started in my left lower extremity, now it’s taken both legs and right side. There is no cure that won’t kill me. The only thing I have to look forward to is eventually this horrific pain will consume my whole body. I have tried for 10 years to get any kind of technology, failing. I stay home all the time because of the pain. I have started wondering if being so alone can kill a person. If anyone has any ideas – ANY – please let me know. Thanks.

  2. Janet G. says:

    I applied for disability on Dec. 29, 2011, was accepted Feb. 6. Large lump in bank, plus will get loads every month for 5-7 yrs. I called and asked for caseworker as I need help, ramps, walkways, shower bars, said need to get on Medicare or the other. They said I have been disabled since April 2009. Can I apply for Medicare now? Will they help me with stuff like that? I have an INDOOR POOL I CANNOT AFFORD TO HEAT, PLUS NEED RAILS, PLUS WANT TO OFFER IT TO OTHERS IN FERNDAE TO USE – PEOPLE ON DISABILITY. THANKS FOR LISTENING. HOPE SOMEONE CAN HELP ME???

  3. Ellen B. says:

    Caregiving is a feminist issue. The people called on first to be caregivers are daughters, daughters-in-law and granddaughters (the last one is unbelievable to me!). We’re geared for caregiving as women, through nature and nurture, but more often than not we forget to look after ourselves while we’re in the midst of our roles. It’s a tough one, the struggle with guilt was the biggest for me and the women I work with. But we won’t be good for anything if we burned out. Best, Ellen B., MidLife Coach and Author of Surviving Eldercare: Where Their Needs End and Yours Begins

    • Simran says:

      Couldn’t be written any better. Reading this post reminds me of my old roommate! He always kept talking about this. I will forward this article to him. Pretty sure he will have a good read. Thanks for sharing!

  4. phlebotomytraining4u says:

    Thank you so much for giving everyone an extraordinarily remarkable opportunity to read articles and blog posts from this site. It really is very helpful and stuffed with information for me and my office co-workers – we search your web site at least 3 times a week to learn the new things you have. And of course, I’m certainly impressed with your information. Certain facts in this posting are honestly the most beneficial we have ever had.

    • Birindar says:

      I’m loving the application of these technology tools. If the Industrial Revolution served to marginalize people experiencing disability, then the Technological Revolution puts us right back in the game! For the last couple of years, I have used iPods for read aloud of texts and tests with my middle school students. This delivery system allows students to listen independently, at their own pace, repeating or skipping ahead as needed, just the way their peers do. Now, I’m recording video of myself working math problems and sending those home with students via iPod. Our high school recently bought a set of iPod touches to be used for read aloud, video tutorials, and organizational assistance. Great stuff!

  5. Wanda M. says:

    What resources are available besides SSI to help someone who has had a stroke pay their rent and living assistance? They only receive $698 monthly and their rent is $600. They only receive $100 in food stamps and they have lights to also pay every month.

  6. Susan T. says:

    Another important aspect of acquiring assistive technology (AT) is figuring out how to afford it. Most states have home and community-based waivers that may provide a wide array of AT to people who are low-income; and we all know that some devices (durable medical equipment) may be paid for by public/private insurance plans. There are thirty-three states and territories that have an alternative financing program (AFP)– programs that help provide low-interest (or no interest) loans to people with disabilities so they can purchase the AT they need. For a complete list (including contact information), contact RESNA — see comment above. Our program in Pennsylvania, Pennsylvania Assistive Technology Foundation, can help people learn about possible funding resources in addition to providing loans. Eligibility requirements vary from state to state, but in PA the basic qualifications are that either the person benefiting from the device is a PA resident or the loan is taken out by a PA resident AND the person taking out the loan has the ability and willingness to repay it. For more information about PA (and there’s a link to the other states), check out http://www.patf.us.

  7. Kassie says:

    Dear Glenda B.,
    I saw your comment after I posted and felt compelled to reach out to you. I am 27 and have been legally blind for years, and my fiance, who is 36, was diagnosed with terminal lung cancer about a yr ago. The doctors gave him 6 months to 2 years to live. He has been in treatment (radiation, chemo, clincial trials) for about a yr and a half. He is doing much better than we expected. I know what it’s like to hear your mate is dying and the medical costs are overwhelming.
    We created this disability blog that I encourage you to visit us and email me at contactus@labelosophy.com for questions or support.
    I know that there are trust funds set aside for lung cancer victims. Certain construction workers qualify for suits under these trust funds.
    Doctors offices do work out payments. My fiance joined a clincial trial where the hospital pays 75 to 100% for patients.
    Don’t give up hope.

  8. Kassie says:

    As a disabled person, I know I sometimes need to rely on others to help with specific tasksk. Since I am blind, I use a lot of the great assistive technologies for the disabled to help educate and inform other disabled people. I know the task of educating the older population, who may not use technology as often as younger individuals, is especially challenging.
    It’s great to see the issue of assitive technology and caregivers brought to light.

  9. Emily A. says:

    “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 (AT) and who pays for the technologies used?”
    Questions like these can be answered by a RESNA Certified Assistive Technology Professional.
    The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) provides training and certification to professionals who can help an individual with a disability or a family caregiver.
    The purpose of RESNA is to contribute to the public welfare through scientific, literary, professional and educational activities by supporting the development,dissemination, and utilization of knowledge and practice of rehabilitation and assistive technology in order to achieve the highest quality of life for all citizens.
    RESNA is a non-profit professional organization whose members serve people with disabilities seeking technology applications to maximize their ability to function in their environment. RESNA’s membership consists of researchers, clinicians, suppliers, manufacturers, consumers and educators who work in nonprofit and for-profit companies. All members are dedicated to promoting the exchange of ideas and information for the advancement of assistive technology.
    There are almost 4,000 rehabilitation engineers, occupational therapists, physical therapists, speech and language pathologists, suppliers, educators and other professionals who have successfully received their certification.
    To find an Assistive Technology Professional in your area visit: http://web.resna.org/member_directory/individual/index.dot
    In addition, there are a handful of gerontechnologist (gerontologist with AT certification) throughout the United States and other countries who focus their efforts and experience on assisting the aging adult and their caregivers. If anyone is interested in learning more about Gerontechnology and Gerontechnologist, feel free to contact me at Emily@Techforlifetransitions.com.

  10. Cindy says:

    I have also found out that people caring for loved ones are unaware of foster care homes in their community that would help with day care, respite care, or when and if the need comes, will take in their loved ones and give them loving homes, and their loved ones piece of mind.
    Cindy J.

  11. Glenda B B. says:

    We are a couple. He is 63 and I am 66. We both were in excellent health until June 2011. He was working, of course, when he found out he had lung cancer. He lost his job and that took the insurance away. It put our life in a spin. We were in MO because of his job in the construction field. We had always lived life as if there was not tomorrow. In other words, we enjoyed our life. Nothing like this could ever happen to us. Our children were adults and on their own, so we enjoyed it. Now we have nothing and here we are in SC so we could be near our children and our journey is about to end and we have no clue what to do – get COBRA (costs a fortune when you don’t have much)? Got a few thousand in the bank, so we can’t get medicaid or welfare. Our bills so far are over $100,000 and he has had only one treatment. What are people like us to do? We sold the only thing we had of value, a boat. When that $7,000 is gone, we are broke. He had been laid off one year, then back to work one year, when this happen. Seems there’s no end of our misery. He is thinking of quitting the treatments because this means having to buy more prescriptions, certain foods, special needs. WE are scared I am the caregiver and he is the sick person. I am not doing a good job because I feel brain dead. NO one has offered a solution or a how to. He was in the army in 1968 to 1970, but they will not help. We tried that. We only have 6 mo if no treatment and one to two years with treatment.