Survey Finds Family Caregivers Most Concerned about Respite Care, Personal Health and Finances

Share Article

Allsup and National Family Caregivers Association study reveals characteristics, concerns of caregivers with higher burdens.

News Image

Suzanne Mintz, President and CEO of National Family Caregivers Association

Many family caregivers take on a significant and sustained burden of care.

Taking care of their personal health, lack of respite care and meeting monthly financial needs are the top concerns cited by 1,579 family caregivers, according to a survey by The National Family Caregivers Association (NFCA) and Allsup. Allsup is a nationwide provider of Social Security Disability Insurance (SSDI) representation and Medicare plan selection services.

The NFCA/Allsup Family Caregiver Survey of NFCA members offers compelling insight into family caregivers’ concerns and needs. Nationally, there are more than 65 million family caregivers providing care to aging or disabled family members.

“Many family caregivers take on a significant and sustained burden of care,” said NFCA President and CEO Suzanne Mintz. “This survey confirms that. More than one-half of the respondents have been in their caregiving role for five years or longer, one-third care for more than one person, and they assist with more daily activities than a typical family caregiver.” Mintz said the survey findings will help NFCA develop, implement and advocate for more programs that support family caregivers, improve their quality of life and provide resources and information that will help them avoid crisis situations.

Higher Burden Family Caregivers
“It is generally accepted that a family caregiver is considered a high burden family caregiver if they assist their loved one with personal care such as getting dressed, bathing and incontinence,” said Mintz. “While this survey indicates that half to nearly two-thirds of the respondents assist with these activities, the findings expand upon that by revealing other characteristics of a high burden family caregiver.”

The survey findings indicate a family caregiver is likely to experience a higher burden if they:

  •     Care for a spouse or parent who is 65 or older.
  •     Live with their care recipient.
  •     Feel as if they were thrown suddenly into their caregiver role, as opposed to their role developing slowly over years.
  •     Have been providing care for more than five years.
  •     Care for a loved one whose condition severely limits their ability to care for themselves, such as: Alzheimer’s or Parkinson’s disease, muscular dystrophy, spinal cord or brain injury.
  •     Are the sole or primary caregiver.
  •     Are a full-time family caregiver.

Caregivers Concerned About Their Own Health
Many respondents were very or somewhat concerned about health issues, including:

  •     Concerns for their personal health (84 percent).
  •     Not having enough respite care (83 percent of respondents).
  •     Feelings of isolation (75 percent).

Just as importantly, when asked to rate the topic of most interest, nearly all respondents were very or somewhat interested in caregiver mental health (91 percent).

The NFCA/Allsup Family Caregiver Survey findings provide guidance on how to help family caregivers better care for themselves. “Too often caregivers are so focused on other people’s needs that they neglect their own,” Mintz said. “This survey tells us our members recognize the importance of self-care. They have internalized our message that if they cannot take care of themselves, they cannot take care of their loved ones.”

Caregiver Finances, Health Insurance & Social Security Disability
Caregivers also were very or somewhat concerned about several financial issues. These include concerns about:

  •     Meeting monthly financial needs (77 percent).
  •     The lack of paid home health support (71 percent).
  •     Their employment situation (59 percent).
  •     Having adequate health insurance for themselves (58 percent).

Additionally, most are interested in obtaining help with Medicare plan selection (60 percent) and long-term care insurance (57 percent).

Social Security Disability Insurance (SSDI) also plays an important financial role for many caregivers and those they care for. Nearly one in ten caregivers (9 percent) receives disability benefits and 27 percent report caring for family members receiving disability benefits. SSDI is most commonly the disability coverage reported among these caregivers and the individuals they care for.. Additionally, nearly one-half of caregivers (46 percent) indicated an interest in receiving assistance with the SSDI application process. SSDI provides important financial and healthcare resources, including Medicare coverage 24 months after receiving Social Security disability cash benefits.

Differences Among Caregivers
Survey responses revealed that the levels of concern and caregiving activity varied. One distinguishing characteristic depended on whether the family caregiver felt that he or she was thrown suddenly into the caregiver role or the role developed slowly.

Caregivers who said they were thrown suddenly into their role provided more caregiving assistance, as measured by their performance of activities of daily living (ADLs) and instrumental activities of daily living (IADLs). ADLs include helping their care recipient dress, go to the bathroom and eat meals; and IADLs include grocery shopping, preparing meals and managing medications.

Those who felt thrown suddenly into their role performed on average 3.0 ADLs and 5.4 IADLs, while those who said their role developed slowly performed on average 2.0 ADLs and 5.0 IADLs. Those who felt thrown suddenly into their role were more concerned about the challenges of caregiving across the board—especially not enough respite care—than caregivers whose role developed slowly over the years.

The caregivers’ relationship to the care recipient also had an effect on their caregiver activities. Those caring for a child with special needs provided the most ADL assistance (3.2) followed by those caring for a spouse (2.7). Spousal caregivers also provided the most IADLs (5.3). Those caring for a sibling or grandparent reported the lowest average of 2.1 ADLs.

Concerns Of Caregiving Grow Over Time
Among caregivers who have provided care for less than one year (new caregivers), 45 percent report being very concerned about not having enough respite care, compared to 58 percent of caregivers who have been providing care for more than 10 years (enduring caregivers).

Other concerns grew over time for caregivers, including:

  •     Personal health (43 percent of new caregivers v. 51 percent of enduring caregivers).
  •     Feelings of isolation (32 percent of new caregivers v. 40 percent of enduring caregivers).
  •     Transportation for the care recipient (20 percent of new caregivers v. 27 percent of enduring caregivers).

Only one caregiver concern decreased over time: concerns about the caregiver’s own employment situation decreased over time, from 43 percent for new caregivers to 35 percent for enduring caregivers.

“This information helps us identify what caregivers need and when they may be best able to use information and resources, based on their unique circumstances,” Mintz said. “By the time many family caregivers contact us, they are in crisis—it’s what prompted them to reach out for help.”

“Allsup is pleased to collaborate with NFCA to advance our understanding of America’s family caregivers,” said Tai Venuti, Allsup’s manager of strategic alliances. “The primary concerns cited in the survey include physical and mental health, financial needs and respite care—and they are all inter-related. Allsup’s expertise is in helping caregivers and their loved ones identify and make the most of the resources available to them. We recognize the importance of supporting other expert organizations, like NFCA, to provide the comprehensive programs and services caregivers want and need.”

Survey Methodology
The NFCA/Allsup Family Caregiver Survey was an online survey of 1,579 family caregiver members of National Family Caregivers Association who subscribe to the organization’s E-letter. Surveys were completed in March and April of 2011. This is not a random sample of all caregivers. However, the findings provide important insights to the challenges and issues facing this group of higher burden family caregivers. Richard Day Research, an independent market research firm based in Evanston, Ill., was responsible for data management, analysis and reporting. A summary report is available at

National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness, disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well-being. For more information visit

Allsup is a nationwide provider of Social Security disability, Medicare and Medicare Secondary Payer compliance services for individuals, employers and insurance carriers. Founded in 1984, Allsup employs nearly 800 professionals who deliver specialized services supporting people with disabilities and seniors so they may lead lives that are as financially secure and as healthy as possible. The company is based in Belleville, Ill., near St. Louis. For more information, visit

Tai Venuti
(800) 854-1418, ext 68573

Lisa Winstel
National Family Caregivers Association
(301) 942-6430

# # #

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Tai Venuti
800-854-1418 ext 8573
Email >
Visit website