Accelerating Adoption of Assistive Technology to Reduce Physical Strain among Family Caregivers of the Chronically Disabled Elderly Living at Home. Appendix D. Family Caregiver SUPPORT Program Survey

01/12/2012

The FCA developed a brief survey that was disseminated to family caregivers of older adults and people with disabilities. Responses included both multiple choice options and open-ended fields.

The survey was fielded online for six months, through the ADRCs, some AAAs, and the FCA's National Center on Caregiving. Responses from the survey can help NFCSPs and other organizations to offer family caregivers with services that reduce physical strain through the use of AT/HM.

The Lewin Group examined the survey results. The survey results provide an overview of:

  • Kinds of AT/HM caregivers have used and reimbursement mechanisms;
  • Benefits of AT/HM to caregivers;
  • Training and information needs of caregivers; and
  • Additional information needs.

Respondents

A total of 423 individuals responded to the survey. A majority of the caregivers were women (87.4%). Their average age was 57, and the average age of the care recipient was 72. These demographics are in line with research which shows that caregivers are predominantly women and middle-age or older.17

Use of Assistive Technology

Almost 61% of respondents stated that they used assistive devices to make it easier to provide care for their loved one or to help their loved one maintain independence. Of those using assistive devices, the most commonly reported items were: mobility aids (92.7%), bathing aids (88.6%), medication assistance (75.5%), toileting aids (72.7%), dressing aids (48.2%), transfer aids (40.0%), and food preparation devices (34.5%). The findings are illustrated in Figure D-1 below. When asked about other assistive devices used, responses included: communication devices (large telephones, speech software), devices for hearing/vision loss, monitoring devices, and some lifts.

FIGURE D-1. Assistive Devices Used by Respondents
Bar Chart: Mobility Aids (92.7%); Bathing Aids (88.6%); Dressing Aids (48.2%); Toileting Aids (72.7%); Transfer Aids (40.0%); Devices to assist with food preparation (34.5%); Devices to assist with taking medications (75.5%).

When asked what electronic technologies the caregiver or the person they cared for had ever used, the most common response was technology that called for help in an emergency (83.8%). This was followed by online communication tools to facilitate the caregiving process (31.2%), health technology (29.2%), and smart home technology (5.2%).

The majority of respondents paid for the AT on their own or another family member paid for it (62.3%). Private pay was followed by the family member who used or benefited from the AT (49.1%), Medicare (44.3%), private insurance (25.0%), other community service organization (15.6%), Medicaid (14.6%), and VA (6.6%).

Among the remaining respondents who had never used AT, the most common reason for not using it was that they were not aware of options (62.6%). This was followed by not having a special reason/never thought about it (26.6%), never having a need for the AT (25.2%), and the cost/not being able to afford it (24.5%).

Impact of Assistive Technology

A question on the survey ascertained the extent to which AT had helped the respondent as a caregiver. Over three-quarters (75.1%) of respondents said the AT had helped a lot, followed by 24.4% who said it helped a little. One respondent said it did not help, and no respondents said it made things worse. This is illustrated in Figure D-2 below.

FIGURE D-2. How Assistive Technology has Helped Caregivers
Pie Chart: It helped a lot (75%); It helped a little (24%); It did not help (1%); It made things worse (0%).

Forty-six survey respondents provided comments on how AT had helped them as caregivers. Common themes are reported below:

  1. Increased independence and safety of the care recipient (15 respondents): Caregivers remarked that their family members were no longer completely reliant on them and that they were able to maintain independence with the help of AT. Most responses related to mobility, autonomy, and improving quality of life. One caregiver stated, "My husband is bedridden now; it's unlikely he'll be able to stand or walk in the future. The lift has made it possible for him to move from one room to another, use his wheelchair, [and] have meals with the family."

  2. Needed to use the technology/was very helpful/made life easier (15 respondents): Many caregivers mentioned the usefulness of specific technologies, particularly monitoring systems (mentioned by 8 respondents). One caregiver stated, "I don't have the time to describe what a living hell it would be for us without these devices."

  3. Well-being of caregiver (9 respondents): Some caregivers noted how much more relaxed they were due to AT. It was helpful to know that their loved one could be more independent. In the case of monitoring systems, caregivers were also more able to go about their daily tasks without worrying about the care recipient as much. Caregivers did not specifically mention their physical well-being; rather, they brought up their mental/emotional well-being and less time spent caregiving, which would likely decrease their physical strain. One caregiver stated, "Having the assistive devices we use has enabled my husband to maintain as much independence as possible, so he doesn't have to rely on me for everything he wants to do. This alone has helped me because I work full time in a very stressful job, so to come home to stressful situations doesn't help me to maintain my sanity."

  4. Resistance of care recipient (4 respondents): Some caregivers mentioned that their loved ones were resistant to the technologies. One mentioned her mother's resistance to the pill organizer, which helps the caregiverknow if she has taken her pills for the day. One caregiver stated, "In some cases it was very helpful. In most cases, because of the reluctance or resistance of the person I've cared for to use the equipment, it wasn't helpful at all."

  5. Avoided institution (2 respondents): Two caregivers mentioned the importance of AT in keeping their loved one in the home, with one stating that her "husband would have been in a residential facility well before now, or I would have broken."

  6. More assistive technology is necessary (2 respondents): Two caregivers also suggested that more AT is needed. One caregiver, whose father has since passed, stated that so much more could have been done, like providing a lift for the caregiver's father. The other caregiver noted that they have had a lot of success with AT; however, they currently need an electric air pressure changing mattress to top his hospital bed to prevent pressure sores, but Medicare requires that the patient needs to have two sores to be eligible for the item.

  7. Training/assistance is necessary (4 respondents): A few caregivers mentioned the need for more training in using the AT. One respondent commented that the care receiver had difficulty learning some of the more complicated technical devices. One caregiver mentioned the need to self-educate: "I practically turned into an occupational therapist trying to find ways to accomplish all the various ADLs 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." Another caregiver stated, "getting training for use of things like wheelchairs, doing transfers (safely) with gait belt, etc. would be MOST USEFUL to avoid injury for us -- the caregivers."

Use of Home Modifications/Home Repair/Vehicle Modification

The majority of respondents (62.8%) had HM (e.g., wheelchair ramps, handrails, grab bars), over a third (37.8%) reported home repair/maintenance (37.8%), and a smaller amount (9.1%) reported having had a vehicle modification. This is illustrated in Figure D-3 below.

The most common payment source for modifications and repairs was payment by the caregiver or another family member (64.0%). This was followed by payment by the family member who used or benefited from the HM (43.9%). The other payment sources included Medicare, Medicaid, VA, community/service organizations, private insurance and do not know, which were reported by 1.7%-7.9% of respondents.

FIGURE D-3. Modification Use by Respondents
Bar Chart: Home repair/maintenance (37.8%); Home modifications (62.8%); Vehicle Modification (9.1%).

Of the respondents who indicated they or the person they care for had never had a HM, the most common reason was lack of need (38.0%). This was followed by cost (30.4%), not being aware of HM options (19.6%) and not owning the home (16.3%).

Impact of Home Modifications

FIGURE D-4. How Home Modifications have Helped Caregivers
Pie Chart: It helped a lot (73%); It helped a little (26%); It did not help (1%); It made things worse (0%).

When asked the extent to which the HM had helped the caregiver, responses were similar to the parallel question about AT: 73.6% of respondents claimed that it helped a lot, followed by 25.6% who said it helped a little. Two respondents said it did not help, and none said it made things worse. This is illustrated in Figure D-4 above.

Forty-three respondents provided comments on the extent to which HM has helped them, and a number of themes arose.

  1. Increased independence and safety of the care recipient (12 respondents): As with AT, caregivers felt that HM allowed their loved one to be safe and independent. One caregiver pointed out the importance of modifications that allowed her husband to just get in and out of the house: "The modifications enabled my husband to leave the house with me, as the caregiver. This enabled us to remain active in the community." Another pointed out the psychological benefit of giving "the care recipient some feeling of control and independence in the home."

  2. The HM was very helpful/made life easier (19 respondents): Many of the open-ended responses were more general comments on how the modifications have been helpful overall. One caregiver highlighted the importance and usefulness of very simple HM: "Simple ramps and grab rails were invaluable." Many of these responses related to how the HM helped the care recipient get in/out of the house, take showers independently or with the help of the caregiver, and prevent falls.

  3. Well-being of caregiver (4 respondents): One caregiver pointed out the helpfulness of the HM for her own well-being: "The ramp we installed in the garage has been a lifesaver for me as a 73-year-old female caregiver for my husband." Another caregiver mentioned living with a disability herself, stating, "for one thing, showers are much easier with fold down seat, grab bars and hand-held shower for the handicapped [care recipient] and the handicapped caregiver (me)."

  4. Resistance of care recipient (2 respondents): Two caregivers pointed out their loved one's resistance to use of the HM. One stated that there were "more things I could use to help my husband but he doesn't want to, so I do a lot for him, in fact I do everything for him."

  5. More HM is necessary (8 respondents): A few caregivers pointed out that they needed more HM. One stated that the modifications were not good enough to help the recipient maneuver in and out of small places. Another stated that they were not enough to allow her to leave her mother, who has Alzheimer's, to be by herself. Two of the caregivers who mentioned that more modifications were needed also mentioned cost. One stated that they wanted a zero step shower, but it was too expensive. Another stated that "there are many more modifications that would be useful but unfortunately they are not in our budget."

  6. Specific types of HMs used (9 respondents): Some of the respondents used the open-ended field to list the specific HM they received/completed; however, they did not provide any more details beyond that.

Training and Information

When asked whether they or the person they care for has ever had training in device use, simplifying self-care tasks,or techniques to minimize the risk of physical strain/injury from caregiving, the majority (59.4%) said they had not received training. This is important to note given that a majority (67%) of respondents also stated that they experienced moderate or heavy physical strain while caring for their family member. This is illustrated in Figure D-5 below.

FIGURE D-5. Caregiver Physical Strain Levels
Pie Chart: Not a strain at all (12%); Mild strain (32%); Moderate strain (35%); Heavy strain (21%).

Respondents were also asked where they would go if they needed information or training about technologies or HM. The most common response was the Internet (67.4%), followed by a physician (47.3%), an AAA (37.9%), a family member/friend (27.9%), or another community/service organization (23.2%). Other options included a CIL, VA, church, or senior center, which ranged from 3.7% to 11.4% of caregiver responses. Sixty-two respondents provided other responses, including: other agencies such as Assistive Technology Centers, associations, and family caregiver programs. Notably, 12 individuals indicated that they were not sure/just did not know where to go for information or training, or that the resources were not available in their area. One individual wrote, "That's just it -- I don't know where to go." Another stated "never thought about it, no money."

In addition to AT/HM, caregivers reported a need for more help or information with a number of other issues, most commonly managing their emotional stress (72.6%) and finding time for themselves (70.7%). Nearly half said they needed help managing their physical stress (46.8%). Response categories and percentages are in Table D-1 below.

TABLE D-1. Additional Needs of Caregivers
In addition to technology and HM, do you feel a need for more help or information with any of these other issues? (Check all that apply)
Answer Options   Response Percent     Response Count  
Managing your emotional stress 72.6% 228
Finding time for yourself 70.7% 222
Keeping the person you care for safe at home 56.4% 177
Balancing your work and family responsibilities 52.5% 165
Help in dealing with agencies or providers (bureaucracies) to get services 47.5% 149
Managing your physical stress 46.8% 147
Information about financial help 42.4% 133
Managing incontinence or toileting problem 41.7% 131
Overnight respite services 35.0% 110
Managing challenging behaviors, such as wandering 33.4% 105
Counseling or support groups 30.3% 95
Adult day services 22.0% 69
Transportation 21.3% 67
Choosing an assisted living or nursing home 18.2% 57
Information about my family member's condition or disability   17.8% 56
answered question 314
skipped question 109

Survey Conclusion

Results of this survey indicate that many caregivers have used AT/HM and found them helpful. However, findings highlight the need for more outreach and education about AT/HM. A majority of respondents said they turn to the Internet for this information, highlighting the need for reliable and accurate information on the web. Other frequently mentioned information sources were physicians, AAAs, and community organizations. Databases of AT do exist online; however, they are often difficult for the family caregiver to navigate. For example, AbleData, sponsored by the National Institute on Disability and Rehabilitation Research, provides information on almost 40,000 assistive products. However, in some cases, caregivers may give up on searching unless they already know what they are looking for in advance of visiting the website. Additionally, better linkage between the problems identified and possible technology solutions is critical.

Another gap identified by this survey is training on device use, simplifying care tasks, or techniques to minimize physical strain. Other frequently mentioned areas where caregivers said they need more information or help include managing their emotional stress and finding time for themselves.

Funding for AT/HM is another concern mentioned by caregivers in this survey. AT/HM is largely purchased by the family caregiver or by the care recipient with disabilities. Some caregivers specifically mentioned not having enough money -- that the cost was a barrier to purchasing AT or installing HM. More information needs to be disseminated to caregivers about potential funding sources for AT/HM and sources for low-cost or no-cost devices; expanding coverage of AT/HM in public programs would also help. In the open-ended fields, many caregivers indicated a need for help obtaining needed AT/HM. Many of these caregivers have experienced moderate and sometimes heavy physical strain as a result of caregivingor are concerned about the possibility of future injury as a result of caregiving. One caregiver stated, "A shower that has dispensers, safety bars, and a stool is a wonderful thing. Now that I have injured myself caring for Mom, I need them!"

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