Family Caregiving, Disability, and Work-Life Balance

Northeast ADA Center Staff August 30, 2017

LaWanda Cook, PhD is Extension Faculty and Healthy Living Initiatives Lead with the Yang-Tan Institute on Employment and Disability at Cornell University's School of Industrial and Labor Relations

 

Rose quickly makes lunches for her husband and children from last night’s leftovers and gives one final call for both children to get their jackets and meet her outside, so she can get them to school on time. She has a lot going on today. She needs to have the ramp on her accessible van serviced so she can use her wheelchair; using her crutches at the office really slows her down. And, she missed work time last week to take her mother to a few medical appointments since her mom no longer drives and, due to her worsening dementia, has a tough time processing information from the doctor. Rose is a spouse, a parent, a daughter, an employee, a person with a disability, and a caregiver. Managing these multiple roles, relationships, and responsibilities can be a challenge.

Though family support is important for all employees’ work-life balance, for people with disabilities this may be complicated by caregiving, which can be two-fold: individuals may have children, parents, or spouses for whom they provide care; and depending on the nature of an individual’s disability they might also receive caregiving assistance. Research confirms this is true. A recent Cornell University study on work-life balance and disability indicated that many employed people with disabilities have family caregiving responsibilities. Nearly 30% of participants reported having children under age 18 living at home. Further, participants reported spending an average of 15 hours per week on family caregiving, in addition to time spent on their own self-care. At the very least, an individual with a disability who provides care for a family member likely requires more time for their own self-care, too. These realities can significantly impact the sense of work-life balance for people who find themselves in Rose’s situation, influencing the person’s feeling of being able to manage and have a sense of joy and satisfaction across work and other life domains (e.g., family, leisure, self-care).

One important way that support from one’s family contributes to maintaining a sense of balance is by buffering the stressful effects of disability as well as other, more typical life concerns. Familial support is particularly important for workers with disabilities who may rely on family members to assist with personal care, transportation, and/or assistance to engage in leisure activities; and the helping relationship is reciprocal. In Rose’s case, she prepares meals for her family, transports her children to school, and coordinates her mother’s medical appointments throughout the week. Her family assists her with leisure participation such as by putting her hand cycle in the van before they head to the bike trail on weekends.

The caregiving role can be both rewarding and taxing, and many caregivers experience emotional distress and satisfaction and growth, simultaneously. A 2014 survey conducted by the Associated Press-National Opinion Research Centerindicated that 83% of caregivers viewed it as a positive experience noting that it enabled them to give back to someone who had once cared for them, provided assurance that their loved one was receiving good care, and contributed to their own personal growth and sense of purpose.

The positive aspects of caregiving may be overshadowed by the significant consequences to the caregiver’s well-being. For example, providing care to a family member with a disability or illness has been found to potentially compromise the caregiver's quality of life due to specific health declines including less energy, difficulty sleeping, increased stress and physical pain, depression, headaches, and weight gain, as well as strained relationships between the caregiver and their family member. Further, caregivers experience difficulty finding time for themselves, managing emotional and physical stress, and balancing work and family responsibilities.

These types of adverse health impacts may include the onset of disabling conditions for the caregiver, making it harder to maintain a caregiving role. Thus, providing care may be even more challenging for caregivers with pre-existing disabilities and health conditions. In Rose’s case, providing care for her mother has meant postponing service on the wheelchair lift in her van, which compromises her own health. Using her crutches at the office not only slows her down, but leaves her more tired at the end of the day. She has much less energy for her responsibilities at home. 

One of the few studies about people with disabilities who provide care to family members found that caregivers with disabilities performed a variety of services for care recipients that resulted in the greater community participation and employment for those who received care; often, care was reciprocal between the two individuals. Yet, despite such research as well as changing attitudes about the capabilities and community inclusion of individuals with disabilities, there remains a tendency to view people with disabilities solely as care recipients. Consequently, caregivers with disabilities are often not part of conversations and planning related to assisting caregivers, and little is known about the impact of disability on caregivers’ needs and health. This lack of understanding may make it more difficult for caregivers with disabilities to access supports available to other caregivers. Rose has begun to seek out caregiver resources and has been frustrated to find that most materials she has seen talk about caregiving as if only one person in the caregiving relationship has significant needs. Further, the social supports offered in her community typically include outings at locations that are not accessible to wheelchair users. Thus, educating the event coordinators has become another one of Rose’s many roles.

Given that many disabilities and health conditions can influence sleep patterns and energy levels, managing work along with other life domains becomes more challenging. We can surmise from existing research on the typical caregiver that caregivers with disabling conditions may be particularly susceptible to the negative consequences of providing care to others. Importantly, however, caregivers with disabilities can also benefit from the positive aspects of caregiving, and the opportunity to assist others. 

As the U.S. population continues to age, and better health services enable people with a range of conditions to live longer, finding ways to support people with disabilities who provide care will be essential. Whether or not they become disabled through their caregiving role, experience disability as a consequence of aging, or are providing care while aging with a pre-existing condition, caregivers, like Rose, play a vital role in their families and need support to maintain a good quality of life.

Resources for Caregivers

 

 

https://www.caregiver.org/caregiving

 

http://blog.aarp.org/category/take-care/?gclid=EAIaIQobChMIp5C5hf-71QIV2oSzCh0OEQ8qEAAYASAAEgKTq_D_BwE&CMP=KNC-DSO-Adobe-Google-Caregiving-New-NonBrand&s_kwcid=AL!4520!3!98028931713!e!!!!caregiver%20blogs&ef_id=Vxkz1gAAALf4WMYp:20170803211949:s

 

The top 10 Caregiver Blogs: https://www.caringvillage.com/2016/03/30/top-10-caregiving-blogs-caregivers/

 

Caregiver Support Training through Mount St. Mary College in Newburg, NY

https://www.msmc.edu/News/center_on_aging_and_policy_receives_600000_grant_f

 

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-A-Guide-for-Caregivers.pdf

 

 

http://sci.washington.edu/care_providers/

 

 

For information about managing personal caregivers:

http://sci.washington.edu/caregivers/index.asp

Keywords: General Disability