When the Caregiver Is the Lonely One

Published In Caregiver Advice and Resources

Potential perils of seniors suffering from loneliness are now well documented and well trumpeted. For older people, being lonely and isolated is akin to smoking 15 cigarettes a day, they say. It increases the risks of heart disease, strokes, high blood pressure — and can even hasten death.

A fact less pondered: Family caregivers — estimated to exceed well over 40 million Americans — are often lonely, too. They can similarly suffer the same maladies that isolation can unleash on seniors. And many caregivers naturally feel overwhelmed, stretched too thin, often uncertain whether they’re actually doing more harm than good for their charges. This is especially true when they are providing “complex care” involving tasks such as organizing and administering multiple medications, changing dressings, and operating home dialysis machines and other types of medical equipment.

Collectively, family caregivers provide an estimated $470 billion in unpaid care every year. And they are basically providing an increasing amount of  complex care with very little training or outside help.

Back in 2012, AARP published study results in “Home Alone,” which was heralded as the first national look at how family caregivers provide and manage such tasks. Back then, these family members were called “informal caregivers” — a label that implies what they did was casual and confined to simple chores. But the study quickly debunked that characterization, concluding: “Older adults’ homes have become de facto clinical care settings where caregivers are performing an array of complex care tasks once provided only by licensed or certified professional in hospitals and nursing homes.”

Recently, AARP researchers revisited family caregivers — this time drilling down to seek a deeper understanding of their experiences and unmet needs. The results, “Home Alone Revisited,” focuses on five findings, summarized here.

Finding 1: Caregivers Provide ‘Intense and Complex Care’

An increased number of family caregivers give some type of medical or nursing care to people with issues involving:

  • Physical health — including conditions such as heart disease, cancer, stroke, diabetes, arthritis,and lung disease;
  • Cognition — such as memory problems, Alzheimer’s, and other dementia;
  • Behaviors — mental health conditions such as depression, anxiety, bipolar disorders, and schizophrenia; and
  • Addictions — to alcohol, prescription drugs, opioids, and other substances.

The tasks the caregivers perform are often what trained professionals are hired to do: manage medications, prepare special diets, care for wounds, monitor vital signs, use suctioning or tube feeding equipment, deal with ostomies. Most caregivers perform more than one such task, with more than 25% providing five or more as part of their care duties — most repeated several times daily.

A large number of caregivers reported that they were afraid of making mistakes — especially when potential high risks were involved, as in managing medications, caring for wounds, and using monitoring equipment.

However, one of the most interesting findings was that the most emotionally challenging task was helping to manage incontinence, which caregivers said was both “embarrassing for their family member” and “emotionally difficult” for them personally.

Finding 2: Caregivers and Their Experiences Are ‘Diverse’

This finding revealed how much the faces of family caregivers have changed over the years. They’re no longer just the stereotypical beleaguered, 40-something moms in the Sandwich Generation, stretched between caring for both growing kids and aging parents. “Family caregivers” increasingly includes not only relatives, but partners, friends, and neighbors. Today, four out of ten family caregivers are men. And in a surprise to most: One in four is a millennial.

There is also a marked difference in how today’s caregivers experience the challenges and realities of the experience. Millennials, for example, were twice as likely as Baby Boomers to note that some tasks — especially managing medications, helping with assistive devices, preparing specialized foods, using meters and monitors, and dealing with incontinence — are difficult to perform.

Young people were also more apt to say they find the caregiving experience has a negative effect on their lives rather than feeling rewarding. Said one: “And this now happening with my mom has just really complicated my life. . . . And I know when I get to be my mom’s age, there isn’t going to be anybody to take care of me.”

Finding 3: Isolated Caregivers Risk More Difficulties

A sizeable number of caregivers —20%— say they have no one to call for help, making their challenges more difficult and also making them prime targets for social isolation, depression, and other personal health challenges.

Here, too, there were differences in perceptions and realities related to their ages. For example, Millennial caregivers were more likely than older ones to say they feel isolated, with nearly 1/5 of them reporting they don’t see any of their friends in a given month; about 1/3 of the older caregivers say they hear from three or four friends at least once monthly.

Another shift: Most family caregivers said they felt they had no choice but to take on the tasks of providing complex care. They reported feeling pressured by various sources — including their own personal feelings, the person requiring care, other family members, and medical personnel. Combating their own guilt and others’ negative judgments added to the difficulties of providing care and to their own feelings of isolation.

Finding 4: ‘Medical Tasks’ Are Most Worrisome

About half of all family caregivers said they were worried about making a mistake, and that concern was significantly worse for those who were performing a number of medical tasks or caring for someone suffering from a number of conditions simultaneously. Some also said they had financial concerns, both about paying for care and in suffering career setbacks as they dealt with caregiving responsibilities. More younger caregivers reported feeling more worry than their older counterparts.

And older caregivers also reported an upside to the worry of performing medical tasks: Most said they felt they were making “important contributions,” that taking on the duties made them feel more assured their family members were getting good care, or enabled them to stay at home rather than living in a nursing facility. This sense of satisfaction increased with the number of complex medical tasks they were required to perform.

Finding 5: Most Caregivers Get Little Help or Instruction

Here again, the challenge of managing incontinence was high on the list of concerns. Yet the overwhelming majority of caregivers said they had to learn to master the task on their own, getting no help or information from a health care professional or from hospital personnel.

Preparing food for special diets was also cited as a difficult task to manage, perhaps complicated by time demands of planning, shopping, and preparation. And here there was a marked racial and cultural difference, with Chinese family members twice as likely as black and white caregivers to find the task tough.

Recommendations and Resources

“Home Alone Revisited” concluded with 10 recommendations aimed at how health care professionals and delivery systems and policymakers could better support and train family members in the “new frontier” of caregiving. While well considered, however, most of these seemed a bit toothless and muzzy. Recommendation #5, for example, is: “Health care systems and professionals must make stronger efforts to recognize family caregivers and offer them instruction on and support for complex care.”

However, in conjunction with the Home Alone Alliance, AARP did take the initiative in publishing a number of short instructional videos and guides on targeted topics, many of them available in both English and Spanish.

Current offerings cover:

  • Special diets
  • Managing incontinence
  • Wound care
  • Mobility, and
  • Managing medications.

Planned upcoming releases will offer more information on managing medications, as well as preparing family caregivers for a hospital stay and specialized medical equipment.

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