Trends in Caregiving

Trends in Caregiving

Several trends in have changed the caregiving landscape and made the role of those who support seniors living in their homes and communities even more critical. Family members no longer all live in the same zip code much less the same state. This raises the issue of who will care for aging parents, of how children will care for parent from distance. Blended, divorced, and non-traditional family structures also complicate the provisions of care to aging or disabled family members, often blurring responsibilities.

Along with changes in family structure, health care advances have created new care needs. While more people than ever before are surviving infectious diseases, traumatic injuries, and chronic illnesses, these conditions often create a need for long-term care to assist those now living with disabilities. Carol Levine, director of the Families and Health Care Project for the United Hospital Fund, also provide care for her husband, who was severely brain-damaged in automobile accident in 1990. “After that,” says Levine, “I spent about five years trying to piece together care for my husband. I felt totally abandoned by a system that had worked heroically to save his life but then said, ‘Here, you take him now. We’ve done our job’” (Levine, 2003, p. 4). Levine’s sense of bewilderment and isolation is common among caregivers who are suddenly thrust into their roles.

Caregiving needs have also intensified as efforts to contain health care costs have shortened hospital stays and shifted greater responsibilities outside of hospital walls and into homes. According to the Centers for Disease Control and Prevention, the average hospital stay for people 65 or older in 2001 was 5.8 days, less than half the average of 12.6 days in 1970 (Levine, 2003). Furthermore, medication regimens and home care technology can be dizzyingly complex, requiring sophisticated monitoring. Altogether, the scope of caregiving has broadened, and pressures on caregivers have mounted.

Considering Care Recipients

When seniors began experiencing disability or illness, the face a host of new concerns. In general, many seniors are not used to or comfortable with asking for help. When seniors require caregiving, they must often deal with the grief associated with physical decline, the difficulty of being in pain, and the frustration of being unable to do tasks that were once simple to execute. As many caregivers are children caring for parents, the reversal of roles may be initially uncomfortable for both parties. Seniors may also worry about depleting their financial resources, becoming a burden to their families, or losing their dignity or control over their own care. Seniors, especially care recipients, fear losing their independence more than anything. You, as well as caregivers, should cognizant of this, and make every effort to affirm the dignity and independence of your senior clients.

Here are some facts that demonstrate the need for caregivers:

  • By the time adults reach age 65, they frequently dealing with at least one chronic illness, such as arthritis, diabetes, and fibromyalgia
  • By the time seniors are 75, they often must deal with two chronic illnesses. At age 85, they may struggle with three or four illnesses.
  • The 85-and-older age group is the fastest growing segment of our population.

About half of senior not living in institutions have a disability (Vierck, 2003). In other words, they have one or more long-lasting physical, mental, or emotional condition that impairs their ability to perform daily tasks, although they still reside in the community. Despite these hurdles, seniors are often reluctant to consider themselves disabled, just as they do not consider themselves old, per se. While you, seniors’ families, and caregivers can assist seniors as they face the physical changes that the years can bring, you should focus on seniors’ strengths, abilities, and gifts – not their limitations. With modifications and help, many older adults with disabilities continue to lead productive and enjoyable lives.

Who Me? I’m Not a Caregiver

Despite the significant portion of society that provides care – about 21 percent of households (AARP and National Alliance for Caregiving, 2004) – many caregivers are hesitant to identify themselves with that term or may not perceive that the work they do is caregiving. For some, this is due to personal and cultural contexts that shape their understanding of the task. African American and older Latino caregivers may consider the term family caregiver strange or redundant, believing that caring for an ill family member is an unquestioned responsibility for everyone in a family (Dobrof & Ebenstein, 2003).

Some dislike the term caregiver because it signifies that they have officially taken on a new role and the identity (with some negative connotations) that goes along with it. Others may balk at the work caregiver because to say one is a caregiver acknowledges the care recipient’s loss of independence, a tough task for many children caring for their parents. Similarly, a wife may not want to admit that her relationship to her husband of 47 years has become fundamentally different.

However, those who do not associate with the term caregiver also may not recognize that they are not alone or that many services exist to support them. Health care and social service professionals often wish to identify caregivers so they can manage their own health, both physical and emotional, and learn of resources such as caregiver support groups (Dobrof & Ebenstein, 2003). You can encourage caregivers to recognize just what it is they are doing – providing a critical service that unites them with many other families, which can be alternately blessed and stressful, but which requires support so that caregivers do not become ill themselves.

While some caregivers are summoned because of a decisive incident, such as a fall or a stroke, others may not realize when the increasing level of support they provide crosses over to the realm of “true caregiving”. Aneshensel and colleagues, in their description of caregiver transitions, write, “Whereas people know precisely when they enter a job, entry into caregiving might be gradual and insidious, in some instances becoming a fait accompli before one is fully aware of it” (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). One caregiver named Judy, a full-time executive in Minnesota who coordinates the care decisions for her mother in a nursing home, says she initially took on some tasks because she was available, seemed to be the most concerned, and had experience talking with the doctors. Eventually he seven brothers and sisters began to look to her to do everything, even when she pleaded for help. Even though they lived much closer to their mother, Judy felt that because she had first accepted the role of caregiver, the rest of the family thought it had become hers to keep.

Beyond Function – The Caring Relationship

The methods of measuring ADLs (and later, IADLs) were originally developed in the 1950s and 1960s to describe the functional abilities and limitations of those with disabilities (Levine, Reinhard, Feinberg, Albert, & Hart, 2003). More than 40 ADL and IADL instruments have been created since the 1970s. Yet some have criticized the ADL/IADL indices as incomplete ways to understand the work of caregivers, believing it to be an overly medical model. True, caregivers do assist with many ADLs and IADLs, but they also perform complex tasks and bear emotional burdens far beyond them. From Family Caregivers on the Job: “Caregivers do not think of what they do in terms of performing tasks related to ADLs and IADLs; they do whatever needs to be done. Then they watch and wait until the next thing needs to be done, and the next, and the next” (Levine et al., 2003). E.K. Abel (1990) also noted, “The chores that family and friends perform do not exist in a vacuum; rather, they are embedded in intimate personal relationships..”

These relationships, even if warm and strong, pose challenges, as caregivers and recipients have to perform unfamiliar roles outside of a lifetime of more familiar interactions. The relationships can also be more challenging: “The caregiver may encounter disruptive behavior, particularly when the care recipient feels confused, threatened, or insulted, or if he or she is physically uncomfortable. The care recipient may also perceive certain acts, like being moved into the bathroom, undressed, and washed, as a physical or sexual abuse and may respond with combative behavior. If the care recipient suffers from arthritis or other mobility problems, he or she may resist going into the bathroom because movement is painful” (Levine et al., 2003). Consequently, the response of the recipient to care – whether helpful, complaint, passive, resistant, hostile, belligerent, or cognitively impaired – can greatly affect the caregiver’s tasks.

Caring for someone with dementia requires incredible patience, perseverance, and vigilance. It can also be an utterly consuming job, as Leah, a caregiver from Florida relates:

I packed a bag for my mother and took her to my brother’s house. He promised to take over for the weekend so that I could have the first real break since my mother came to live with me three years ago. I dropped her off about 8:30 Friday night. I couldn’t wait to get home and take a nice long bath. I used to love this, but hadn’t been able to relax with Mom in the house. She has dementia, and I never knew what she would do.

About 10:30, I heard this pounding on the door. I ignored it, and it got louder and louder. I went to the door to find my mother – suitcase and all! Alone! My brother had always inferred that all the problems and chaos were my fault. Now, Mr. Know-It-All brought her back, but couldn’t face me, so he ran when I came to the door. I had the satisfaction of knowing he couldn’t even last two hours, but my weekend was ruined.

After I put Mom to bed, I wondered if I should have talked to him about her attitudes and habits. Maybe he would have tried longer if he had been expecting whatever happened. Maybe he would have agreed to do it again. I cried for hours. (Beerman & Rappaport-Musson, 2002, p. 163).

Waves of the caring relationship affect the whole family boat. Caregiving demands often conflict with individual opinions of how various family members want to lead their lives, especially with regard to future plans, privacy, vacations, money, and social interaction. Relationships among spouses, adult siblings, and children can suffer as members compete for attention and time. Occasionally, caregiving leads to reactivation of old intra-family rivalries. Even stable family relationships and positive perceptions of care recipients can become distorted as the demands of caregiving increase.

The information above is reprinted from Working with Seniors: Health, Financial and Social Issues with permission from Society of Certified Senior Advisors® . Copyright © 2009. All rights reserved.