“My wife tripped last night when we got home. I couldn’t help her up. I can’t do those things and that’s a bit frustrating.”
Older Americans with Sensory and Mobility Disabilities
Among Americans ages 65 and older, an estimated 20% have a mobility disability (serious difficulty walking or climbing stairs), 13% have a hearing disability, and around 6% have a vision disability. People with disabilities acquired in early to mid-life are living longer, contributing to growing numbers of older adults aging with disability. These individuals must manage the cumulative effects of long-term disability, age-related changes (e.g., memory, vision, hearing, mobility) and chronic conditions such as diabetes and hypertension. Many people aging with disability require significant support from relatives, friends and assistive technologies.
But these older adults with long-term sensory and mobility disabilities also may be caregivers.
According to the National Alliance for Caregiving and AARP, more than 50 million caregivers—one in five Americans—are supporting someone older than age 18. Caregiving is a public health issue: it forms a critical fabric of support for care recipients but is also intense, time consuming, physically burdensome and mentally demanding. Challenges and experiences of caregivers, in general, have been studied extensively, but there are fewer supports and resources specifically for older caregivers who experience long-term disabilities.
Roles, Responsibilities and Challenges of Caregivers with Sensory and Mobility Disabilities
In our Aging Concerns, Challenges, and Everyday Solution Strategies (ACCESS) research study we explored the everyday challenges among older adults with long-term mobility, hearing and vision disabilities. We found that many people aging with disability consider “caring for others” one of their most difficult everyday activities. As with other caregivers, those aging with disability assist with a variety of daily activities such as dressing and transportation, lifting heavy objects, and healthcare tasks such as managing medications. But they are likely to experience unique challenges.
Many caregivers aging with disability want to be as engaged as possible in caregiving and employ creative solutions to do so.
Many caregivers aging with disability experience challenges associated with their long-term disability (e.g., low physical stamina, reading difficulty, inaudible alerts). Despite these challenges, findings from the ACCESS study suggest that many caregivers aging with disability want to be as engaged as possible in caregiving tasks and employ creative solutions to do so. But, in some cases, it may be necessary to enlist help from others, such as relatives, friends, professional caregivers or volunteers.
The scenarios of caregivers with long-term disabilities are diverse:
An older man has mobility challenges associated with post-polio syndrome and is a long-term wheelchair user. He is caring for his wife who is recovering from a hip fracture. He is concerned about his wife’s fall risk and not being able to help her up.
A woman aging with vision loss is living with her sick sibling who needs help with meals and medications. She is struggling to cook meals in an unfamiliar kitchen and ensuring that the correct prescriptions are given at the right time and dosage.
A grandmother who is deaf is helping to raise her young grandkids. She worries about not being able to hear if the baby is crying or if an alarm is going off somewhere in the house.
Supporting Older Caregivers Aging with Disability
To build an equitable health system that supports caregivers, we need to consider the distinct circumstances of caregivers with disabilities. Approaches to supporting caregivers with disabilities could benefit all caregivers and older adults. How might we support caregivers with long-term mobility, vision and hearing disabilities?
In the Home …
Everyday tools, electronics and assistive technologies hold promise in supporting caregivers with caregiving tasks in the home.
There are various low-tech tools that could support caregivers in the home. A bell can be helpful for a care recipient to alert a caregiver with a vision disability that they need assistance, or a flashing light for a caregiver with a hearing disability. Rolling carts and baskets can help caregivers with mobility disabilities efficiently transport medications, food, or other items, reducing trips. For caregivers with hearing loss, providing their care recipients with a notepad and paper to write with can reduce communication barriers.
Electronics that facilitate remote monitoring, such as smartphone apps and monitoring devices, can be especially useful to help caregivers aging with disability. From detecting movement, to heart rate, to blood sugar, to room temperature, there are numerous ways caregivers can monitor their care recipient and their environment. The interfaces and alert cues of these devices need to be useful and usable. For example, a health monitoring app that provides sound-based alerts and reads aloud information (results, data) could be especially beneficial for caregivers with a vision disability. Similarly, caregivers who are deaf or hard of hearing may require an alert system with multi-modal cues, such as vibration or lights.
‘Mental health support is needed for caregivers coping with the demands of caregiving while managing the frustrations of observing their own limits.’
Voice-activated digital assistants (e.g., Amazon Echo), can be useful for caregivers who are likely to experience limited mobility and transportation challenges. Caregivers can use voice control to support a variety of tasks remotely, such as “checking in” on family member, setting alarms, providing reminders, and calling for help in an emergency. These voice-controlled caregiving support features are now bundled in Amazon Echo’s Alexa Together—a subscription package designed to support remote caregiving. We have developed a set of instructional materials to support older adults with disabilities learn how to use these products.
Assistive technology (AT) refers to the wide variety of supportive devices, equipment and systems intended to support people with disabilities with activities. For caregivers aging with mobility disability, rescue alerts can be invaluable to quickly call for help. Smartphone applications designed to support users with vision impairment in reading (e.g., barcode scanners) and object identification (e.g., TapTapSee, Be My Eyes) can support caregiving tasks such as cooking, medication management, and accessing health information. For caregivers aging with hearing loss, AT like sound amplifiers and voice-to-text software can help facilitate conversations with the care recipient, their family, and healthcare team.
In the Clinic and Community…
There are opportunities for better supporting caregivers with long-term disabilities in clinical and community settings.
Identification of Caregivers with Disabilities
Identifying older adults with disabilities who are caregivers is an important first step to ensuring that these caregivers are provided with access to the resources, tools and assistive technologies they need. This could involve designating patients who are caregivers in the electronic health record, which would help clinicians better understand their patients’ social and environmental circumstances. Older adults with disabilities may experience economic, transportation, and/or other health disparities and may need greater supports to care for themselves and for others.
Mental Health Support
It can be frustrating to support a care recipient when one faces significant challenges in carrying out daily tasks and responsibilities. Mental health support is needed for caregivers coping with the demands of caregiving while managing the frustrations of observing their own limits. These challenges may not be covered in traditional support groups for caregivers; however, incorporating information and resources related to caregiving with disabilities into traditional support groups could be critical to creating inclusive spaces for caregivers. These resources may also be broadly applicable and support all caregivers in community settings.
Minakshi Raj, PhD, MPH, is an assistant professor in the Department of Kinesiology and Community Health at the University of Illinois Urbana-Champaign. Elena Remillard, MS, is a gerontologist and a senior research scientist in the College of Design at the Georgia Institute of Technology. Wendy A. Rogers, PhD, is the Khan Professor of Applied Health Sciences at the University of Illinois Urbana-Champaign.
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