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Eileen J. Tell

Eileen J. Tell is principal and CEO of ET Consulting, LLC, a woman-owned business focused on long term care and aging. She has more than 30 years of experience and thought leadership in long term care (LTC). She can be contacted at

Following The Journey Of Family Caregivers: Findings From A Survey Of Home-Based Caregivers

For each of us who are now, have been, or will be a family caregiver, the choices we make and the challenges we face will always be somewhat unique. Yet there are lessons to be learned from the similarities and differences in the experiences family caregivers have, the choices they make, and the decisions they might have made under different circumstances.

That is why three organizations—CLTC, Home Instead and Homethrive—came together to sponsor a survey designed to explore the journey that family caregivers experience when they are supporting a loved one who needs care at home. Specifically, the sponsors were interested in understanding whether and how individuals made the decision to bring paid in-home care into the mix and how their experience differed from those who relied exclusively on family care. Additionally, the survey compares the experience of individuals who are juggling employment and family caregiving from those who are no longer working full or part time. Finally, the survey was designed to shed some light on whether being a caregiver has an impact on one’s mindset about planning ahead for their own future long term care needs.

The survey was designed by ET Consulting, LLC, in collaboration with the sponsors. It was delivered using an on-line survey platform and took an average of 12 minutes to complete, with a 100 percent completion rate among respondents who qualified and began the survey. In total, 400 family caregivers were surveyed. Respondents were pre-screened to fit the participant criteria:

  • Current or previous (recently) family caregiver.
  • Caring for family member in a home-based setting.
  • By design, half the sample (200) included individuals who had used or were using paid home care providers and half who were not/had not.
  • The sample included a mix on all other demographic characteristics.

Caregiver Characteristics. Most respondents were caring for a parent or grandparent (64 percent), but the next largest share were providing care to a spouse or partner (14 percent). This was the current or more recent caregiving experience that respondents used as the basis for their responses on the survey. While in a few cases, the care recipient might be living with the family caregiver, the majority of the time (68 percent), the care recipient was living in their own home.

More than half of the caregivers who used paid in-home help relied upon a home health aide. The next most popular choice for in-home care was a CNA (35 percent). Just under one-third (28 percent) reported hiring what we call an independent provider—this could be someone who does in-home care work as their job but doesn’t work for an agency, or a family member or friend who is being paid to provide care.

Over 60 percent of the families using paid in-home care found that caregiver from an agency, while 25 percent said they hired the caregiver directly on their own. The top three referral sources for finding paid in-home care were: Word of mouth (34 percent), physician referral (32 percent) or recommendation from a hospital discharge planner (24 percent).

Caregiver Tasks and Challenges. We asked family caregivers about the type of care they most often provided, the challenges they typically faced and what tasks were most difficult for them.

Type of Help Caregivers Typically Provide
Nearly all family caregivers say they are “always” or “often” providing emotional support (80 percent). The other most frequently provided tasks (67 percent) are: Transportation, housekeeping, meal preparation, and making care decisions.

What Tasks do Caregivers Find Most Difficult?
Paying for care (58 percent), providing ADL support (56 percent) and making care-related decisions (46 percent) were cited by nearly half or more of the family caregivers as very or somewhat difficult tasks, compared with the other activities they support. It is interesting to note that, while bringing in paid home care support or care management guidance would certainly address two of these challenges, they may not work for those who also struggle with paying for care.

Caregiver Challenges Most Frequently Encountered
Just about one-third of family caregivers cite getting emotional support, worrying about their workplace responsibilities, and coordinating care needs with the care recipient’s doctor and other providers as the challenges they encounter most frequently.

Using Paid Home Care. Given these challenges and concerns, it is not surprising that many families include a paid homecare provider—a home health aide, CNA or independent provider—to help with some aspect of their caregiving role.

Why Family Caregivers Turn to Paid In-Home Help
The families that chose to use paid in-home care were motivated largely by feeling burnt out (70 percent), concerned with keeping their job or being able to perform better at work (69 percent) and wanting to maintain their relationship with their loved one rather than primarily being their caregiver (69 percent). When asked to identify the single most important reason they sought out paid in-home care, the top responses were:

  • Feeling they lacked the expertise to provide the care needed (18 percent);
  • Feeling burnt out (15 percent); or,
  • Keeping their attention on their job (15 percent).

But using paid in-home care also comes with some challenges, most notably:

  • Cost (20 percent);
  • Having workers who don’t show up at the last minute (20 percent); and,
  • Stress that can come from having a “stranger” in the home (15 percent).

Not Using Paid Home Care. Surprisingly, the most important reason people gave for not using paid home care did not have anything to do with cost; rather over one-fourth of family caregivers who chose to not use paid home care said they did so because they felt it was their responsibility to provide care (27 percent). Also important to the decision not to rely on paid help was resistance from their loved one about bringing a “stranger” into the home (14 percent). Cost was also a factor (14 percent).

At the same time, those going without paid care acknowledge there would have been advantages if they’d had paid help at home. They would have had:

  • More time to relax and enjoy life (48 percent);
  • Help dealing with the emotional stress of caregiving (44 percent); and the physical strain (39 percent); and,
  • A better ability to maintain their own health and well-being (30 percent).

Despite seeing the advantages of using paid help, nearly three-fourths of the respondents who did not use paid help said they are either not sure or say they would not do anything differently if there is a next time. This speaks to the power of the feeling of family responsibility—as well as the cost issue and the challenge of finding qualified direct care workers.

Does Caregiving Influence Planning? Prior research suggests that individuals who had a close family member or friend who has needed long term care are more likely to buy long term care insurance. So, we wanted to know if being a hands-on caregiver also raised people’s awareness of the importance of planning ahead for a time when they might need care. For the most part, the answer was yes.

But it is important to note that the type of future planning we asked about included some seemingly easier tasks—talking to family about care needs and preferences—as well as options that are a bigger “ask” such as buying long term care coverage. It is also important to acknowledge that actions speak louder than words so it remains to be seen whether these planning intents will come to light once the caregiving experience is in the rear-view mirror.

For those that said caregiving did not make them feel differently about wanting to or being able to plan ahead for their own care needs, almost 30 percent said it was just too difficult to even think about it and 25 percent believe that there isn’t a planning option they can afford. The rest aren’t even sure what planning options there might be or how to get started with the process. So, this tells us there are important educational opportunities.

Working Caregivers. Caregivers who are also maintaining employment are significantly more likely than non-working caregivers to use paid in-home care (56 percent vs 41 percent). They are also more likely to say they would use paid home care if they found themselves in another caregiving situation in the future (34 percent vs 15 percent). In addition to these differences, we looked across all the variables to identify in what ways working caregivers were statistically significantly different than caregivers who were not working outside the home at the time they were providing family care.

Working caregivers are more likely than non-employed caregivers to:

  • Be male;
  • Have young children at home;
  • Have higher levels of education, income and assets;
  • Be caring for a parent or grandparent, rather than for a spouse;
  • Be using paid home care out of concern for their job;
  • More likely to have hired an independent caregiver on their own;
  • Say they would use paid home care the next time; and,
  • Say they were influenced by the caregiving experience to plan for their own future care needs.

There weren’t any other differences in terms of the caregiving tasks and challenges they faced or other demographic differences.

Our survey identified both the intensity of the bond between the family caregiver and the individual for whom they are caring—a bond that often leads them to take on tasks for which they are not emotionally or physically prepared to handle and at a cost to their own health and well-being. There are financial, logistical and deeply personal reasons why family caregivers do not turn to paid caregivers or care managers to provide some of the help they could use and need.

Family caregivers all expressed the desire for help with identifying and vetting care providers, determining whether their loved ones are eligible for different programs and benefits that might pay for care, coordinating with care providers, and help with supportive logistics such as transportation, meals, home safety and more. Helping families identify services and supports that can offer this type of help and enable them to afford these services is critical.

In fact, a growing number of employers do offer an employee support benefit to family caregivers at the workplace—whether they are caring for an elder or a child with a disability. Homethrive is an example of one of many such programs. The employer pays a per employee per month fee and any of its employees can use the web-based resource to access the type of care coordination and care support services they need.

As a society, we need to do more to meet the needs of family caregivers, especially as the number of individuals needing care continues to grow and the number of family caregivers available to support them declines.