Supporting Family Caregivers:
8-week group workshop curriculum

LAURA KATZ
Integrative Seminar
Integrative Health Studies
Prof. Meg Jordan
For completion of the M.A. Degree
May 3, 2018


Table of Contents

Introduction          3

Problem Statement          3

Personal Statement          5

Literature Review          6

  • Economics — the Cost of Caring          8
  • Self care          10
  • Stress, time management          12
  • Social network          12
  • Healthcare and medical navigation and training          13
  • Example: A good example of one caregiver support initiative          13
  • Support needs for Alzheimer’s disease/dementia, cancer and stroke          15
  • Influence of race and ethnicity          17

Discussion          9

Conclusion          25

References          28

Appendix: C.A.R.E.S. 8-week curriculum          30


Introduction

Doctors, nurses and aids--what kind of healthcare would we have without them? However, there is an overlooked army of care providers, without which the U.S. healthcare system would collapse. They provide $500 billion worth of care per year, yet they don’t get paid anything (Hudson & Gonyea, 2018). They are called informal or family caregivers, and they are the backbone of the U.S. healthcare system. There are approximately 44 million family caregivers quietly and consistently providing care every day. They often go unacknowledged and unsupported. As a result, family caregivers face deteriorating physical and mental health, social isolation, family conflict, and wage or job loss (Parmar et al., 2016). As the baby boom generation ages, many will rely on a family caregiver for most or all of their long-term care needs. With shifting demographics and an aging population, the U.S. must respond with robust support for family caregivers. As a country, it is imperative to face aging head on with an open, courageous dialog and with resources for the elderly and their family caregivers.


Problem Statement

The U.S. healthcare system relies heavily on family caregivers, yet they are vastly unsupported, and suffer detrimental mental physical and financial consequences of their caregiver role. The American Society on Aging estimates that family caregiving makes up 75% of all long-term care, with a monetary worth of $500 billion annually (Hudson & Gonyea, 2018). The Family Caregiver Alliance defines an informal or family caregiver as any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. In order to sustain this reliance, family caregivers require more resources and support than most currently receive. The quality of care provided depends upon the caregiver feeling capable and supported. Both the caregiver and care recipient suffer if the caregiver is overburdened and overwhelmed. The purpose of this paper is to provide an evidence-based support program for family caregivers to reverse this trend and offer a tool for positive, healthy interaction between caregiver and care recipient.

As the elderly population continues to grow nationwide, so will the reliance on family caregivers. But the ratio of potential caregivers to people needing care will shrink over the next few decades with the shift in demographics. In 2010, the caregiver support ratio was more than 7 potential caregivers for every person in the high-risk years of 80-plus, by 2030 the ratio will be four to one, and is expected to be less than 3 to 1 by 2050 ("RAISE Family Caregivers Act Is Signed into Law!," 2012). Dr. Richard J. Hodes, director of NIH’s National Institute on Aging said, “With all of its rewards, there is a substantial cost to caregiving—financially, physically, and emotionally. One important insight from our research is that because of the stress and time demands placed on caregivers, they are less likely to find time to address their own health problems. For many, the strain of caregiving can become overwhelming. Friends and family often take on the caregiving role without any training. They are expected to meet many complex demands without much help. Many caregivers hold down a full-time job and may also have children or others to care for” ("Coping with Caregiving," 2017). Higher-hour caregivers are more likely to experience detrimental impacts due to their caregiving burden. Finding better ways to support family caregivers is a major public health challenge.


Personal Statement

I have direct experience as a caregiver for my own young children. I dealt with stress, isolation, burn out, exhaustion and many of the burdens facing family caregivers.  At the same time that I was home caring for my children, my grandmother suffered from dementia, and my family did our best to let her to age in place for as long as possible. I was not the primary family caregiver for my grandmother because I did not live nearby. Her daughter, my aunt, was the primary caregiver. My aunt and I struggled with many of the same issues in our respective caregiving roles, including stress, burnout and isolation. As a family, we tried to support my aunt and our grandmother from long distance. Even with a large family offering help, my aunt did not receive some of the basic types of support that all family caregivers deserve, and she was on her own for many daily caregiving tasks. Watching this gap, while simultaneously in a caregiver role myself, sparked my desire to improve the situation for my aunt, my grandmother, myself, and all family caregivers. In my own caregiving role, I learned how to mitigate stress, and actually enjoy caregiving, much to my own and my entire family’s benefit.  My aunt learned to manage her role, too, and grew to appreciate her special relationship with her mother. My intention with this academic work is to create a support program that helps family caregivers learn how to care for themselves while caring for their loved one, thereby improving the quality of life for both parties: the family caregiver and care receiver, so that both may experience a graceful, loving caregiving journey.


In order to understand family caregivers, we need to know: Who are family caregivers? Although each family care situation is unique, it is helpful to look at country-wide statistics to understand the prevalence of family caregiving in the U.S.:

  •  43.5 million adults are family caregivers
  • 75% of all caregivers are female
  • Most family caregivers are middle-aged, with an average age of 49
  • 1 in 10 family caregivers are age 75 or older
  • Nearly half assist someone age 75 or older
  • On average, family caregivers spend 24.4 hours a week providing care to their loved one
  • 23% provide 41 or more hours of care per week
  • On average, family caregivers spend 5 years in the caregiver role
  • 50% self-report having no choice in taking on their caregiver responsibilities

Source: ("Caregiving in the U.S. 2015," 2015), ("Coping with Caregiving," 2017)

In order to understand the needs of family caregivers, we must also know: What do family caregivers do? Family caregivers provide assistance with essential care tasks called Activities of Daily Living (ADLs) such as:

  • Getting dressed
  • Getting in and out of beds and chairs
  • Getting to and from the toilet
  • Bathing or showering
  • Feeding
  • Dealing with incontinence or diapers

Source: (“Caregiving in the U.S. 2015," 2015)

Family caregivers also provide assistance with Instrumental Activities of Daily Living (IADLs) such as:

  • Transportation
  • Grocery or other shopping
  • Housework
  • Preparing meals
  • Managing finances
  • Administer medications, pill or injections
  • Arrange outside services

Source: (“Caregiving in the U.S. 2015," 2015)

In addition, family caregivers must communicate with healthcare professionals and advocate for their loved ones. Almost 60% of family caregivers are responsible for performing more complicated nursing medical tasks for which they have no training, such as injections, tube feedings, catheter and colostomy care and other complex medical tasks ("Caregiving in the U.S. 2015," 2015). However, caregivers are doubly neglected, as they are not typically considered care-partners by medical professionals, nor are they considered service recipients in their own right (Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013). These important and complex tasks of caring are best fulfilled by a supported, self-efficient caregiver. When the family caregiver feels anxious, stressed, tired, weak, isolated and overwhelmed, the quality of life for both giver and receivers decreases. 

literature review

  

Economics -- The Cost of Caring

The American Society on Aging estimates that family caregiving makes up 75% of all long-term care, with a monetary worth of $500 billion annually (Hudson & Gonyea, 2018). Furthermore, family caregiving is shown to delay or prevent the use of nursing home care, thereby reducing institutionalization costs (Sasso & Johnson, 2002). These family caregivers contribute valuable services yet they receive no payment, often incur high costs, risk job security, lose career opportunities, and receive reduced wages and benefits (Gibson & Houser, 2007). Family caregivers age 50 and older who leave the workforce to care for a family member lose an average of $304,000 in wages and benefits over their lifetime ("RAISE Family Caregivers Act Is Signed into Law!," 2012).

In a personal interview with Mary V., a family caregiver who quit her job to care for her father with terminal cancer, she discussed making the difficult choice to leave her job and move with her husband at a time when many of her friends were leaving or reducing work in order to start their own families. This curious juxtaposition with her friends’ lives allowed Mary an interesting perspective on similarities and differences with her friends. She experienced the same disruption to her career trajectory as her childbearing friends. However, Mary did not experience the joys that accompany starting a family, although she did appreciate greatly the opportunity to be with her ailing father. Like most women who make similar choices, Mary cannot accurately calculate the financial impact of her decision.

Women suffer more from the economic repercussions of family caregiving in a variety of ways. Gender inequality continues to negatively impact older women’s experiences even while three out of five Americans age 65 and over are women (Hudson & Gonyea, 2018). Women are more likely to be family caregivers, thereby reducing work hours, earning less income, reducing employment benefits, and reducing social security credits for future needs. Older women are also more likely to receive care from family caregivers. Women live longer than men, but regularly face greater economic, health and social challenges. Over age 65, women are “three times more likely to be widowed or living alone, spend more years with a disabling health condition or illness, twice as likely to reside in a nursing home, and more than twice as likely to live in poverty” (Hudson & Gonyea, 2018). In 2017, the Kaiser Family Foundation reported that 60 percent of women ages 85 and older with incomes of less than $20,000 have average annual out-of-pocket medical expenses of $7,555; contrasted with 35 percent of men at that income level, with average annual out-of-pocket expenses of $5,835. The Kaiser study shows that older women’s needs are only marginally addressed by Medicare when evaluating their health status, income, and living arrangements ("Ten Ways the American Health Care Act Could Affect Women," 2017). The numbers and needs of older women are rising as the first of the baby boomers enter advanced age. Rectifying gender income inequality and the cumulative effect of caregiving duties across a woman’s life span is needed. As in Mary V.’s experience, there is often no way to accurately calculate the financial impact that results when a family caregiver commits to her role. The cumulative impact on women of living longer and experiencing lower economic value over decades, as well as reduced income, benefits and social security credits, can create a dire economic situation in later life. It would be wise and ethical for governmental policies and programs to address the impact of family caregiving and gender inequality over the span of a lifetime. 

If Mary V. had a child while simultaneously caring for her father, she would be part of the sandwich generation, which author of The Conscious Caregiver, Linda Abbitt, describes as those who are caring for at least one aging parent and raising children at the same time. Those sandwiched caregivers feel pulled in multiple directions every day regarding time, energy and priorities. Abbitt recommends mindfulness, or what she calls “conscious caregiving” as well has time management skills to help survive this hectic time (Abbitt, personal communication, 2017).

The economic problems of family caregiving cannot be solved overnight. Some major political and social support policies the U.S. would be wise to implement in order to properly support over 40 million family caregivers and their care recipients are: universal health coverage that includes broad access to respite care facilities, formalized social policies that provide infrastructure and financial support for caregivers, centralized resources and case managers or system navigators to assist the caregiver and care receiver, and social programs to prepare the next generation for caregiving (Charles, Parmar, Johnson, Sacrey, & Bremault-Phillips, 2017).

  

Self Care

Family caregivers who spend 21 hours or more per week providing care are more likely to experience emotional stress, physical and financial strain, and health problems. Family caregivers often neglect their own self-care needs such as missing their own annual checkup, neglecting their own social life, and de-prioritizing other wellness activities. It is understandable that family caregivers neglect their own needs because they must perform a wide variety of care tasks for their loved one—everything from housework to advocating with healthcare professionals, to complex medical/nursing tasks ("Caregiving in the U.S. 2015," 2015). Mary V.  noticed the accumulating impact of stress and lack of self care after her father passed away and she developed shingles (common for people under prolonged stress) and a herniated disc in her lower back (VanWassenhove, Personal communication, February 16, 2018).

Abbitt describes self care as, “any action that you intentionally take to improve your mental, physical, or emotional health” (Abbit, 2017). She recommends discussing self care at every support group meeting. Respite care is one support that, if in place, can help family caregivers have the time for self-care activities such as going to their annual check-up, exercising, or taking time for a hobby. Respite care is a break for the family caregiver, and can be accomplished by either by taking their loved one to a daytime care facility, or having a paid care provider in the home for a few hours to take over care giving duties. However, if respite care is insufficient, Abbitt recommends brainstorming with caregivers. Abbitt said, “Maybe they cannot have time to attend an art class, but maybe they can go to Michael’s and buy some canvases and paint, and take 15 minutes a day to paint” (Abbitt, Personal communication, March 3, 2018). Often caregivers must get creative about self-care opportunities. Abbitt reminds us in her book, “Research shows that medical problems such as physical and mental exhaustion, sleeplessness, depression, and loss of appetite may arise for those who don’t take care of themselves” (2017). Abbitt emphasizes that convincing caregivers that putting themselves first is actually better in the long run for their care recipient because the quality of care will be at a higher level if the caregiver is healthy and feeling well.

  

Stress Management/ Time Management/ Organization

Stress is closely related to self-care, and 46% of all family caregivers surveyed said they need help with managing their own stress, while over 50% of caregivers who felt they had no choice to take on their caregiving role requested help dealing with stress (“Caregiving in the U.S. 2015," 2015). The physical and mental impacts of stress are well-documented. The effectiveness of Mindfulness Based Stress Reduction (MBSR) has been shown in a variety of populations (Praissman, 2008). According to Jon Kabat-Zinn, the creator of MBSR, “mindfulness means paying attention in a particular way on purpose, in the present moment, without judgment ("Jon Kabat-Zinn," n.d.). Studies on MBSR show significant beneficial effects on mental health and coping ability for family caregivers (Liu, Chen, & Sun, 2017). Likewise, Abbitt’s Conscious Caregiver approach relies on the use of self-care and mindfulness to allow what she calls conscious caregiving. 

 

 

Social network, support, validation and humor

Family caregivers face social isolation because of too many demands on their time. When caregivers are overwhelmed or depressed, they may withdraw from social activities they once enjoyed. This is one telltale sign of burnout. By joining a support group, caregivers can benefit from validation of their struggles, information sharing, and sometimes even laughter. Socializing can be considered part of self care, but is also a category in its own right. Family caregivers who take time for socializing benefit greatly, but unfortunately social engagements usually take a backseat to caregiving duties. Joining an in-person support group is one way that family caregivers can get some much-needed social interaction. In a support group, fellow caregivers can encourage each other and leverage insights. Ideally, family caregivers can cultivate other social connections that are unrelated to caregiving for a purely fun, recreational social break.

  

Healthcare, medical navigation, information, and training

Oftentimes caregiver support is interpreted as medical training for family caregivers, such as how to administer injections. Over 80% of family caregivers say they could use more information or help on caregiving topics. “Caregivers most commonly want information about keeping their loved one safe at home (42%) and about managing their own stress (42%). Higher-hour caregivers are especially interested in managing stress (51%), managing their loved ones’ challenging behaviors (18%), and dealing with incontinence or toileting problems (17%).” ("Caregiving in the U.S. 2015," 2015). Almost 60% of family caregivers are responsible for performing more complicated nursing medical tasks for which they have no training, such as injections, tube feedings or catheter and colostomy care ("Caregiving in the U.S. 2015," 2015). Family caregivers do need information and training to complete their caregiving duties. However, merely viewing the caregiver as an extension of doctors and nurses ignores the fact that the caregiver is also a human being who needs emotional, spiritual, financial, educational, physical assistance dealing with her caregiving role. Training medical professionals to recognize that the family caregiver is likely to need support services of her own is a necessary distinction that typically remains unrecognized.

 

Example: A good example of one caregiver support initiative

Family Caregiver Alliance (FCA), founded in the late 1970s, is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. FCA, as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy. The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving” ("Family Caregiver Alliance," 2018). 

The FCA provides many online resources tailored to the client’s situation. For example, if the caregiver is providing care to a loved one with Alzheimer’s, then FCA sends the caregiver information specific to Alzheimer’s and dementia, plus recommends local support groups run by the Alzheimer’s association if available. In addition, FCA provides “caregiver college” which is a series of webinars teaching common skills and tips for family caregivers, such as how to transfer a loved one without hurting your back. Helpful articles, videos and demonstrations are included in the webinars. In addition, online support groups for family caregivers are available through FCA, and up to 6 sessions with a counselor or therapist are available for caregivers in need. The services are free throughout the country. In addition, for family caregivers in the San Francisco bay area, some in-person support groups are available. The FCA is a valuable service, and a great example of one type of support needed by family caregivers. Most of FCA’s offerings are information and training. The online support groups are a mixed benefit. The value is that family caregivers can join and know they are not alone, but online groups do not encourage them to get out of the house and socialize in person, thereby missing an opportunity to alleviate the caregiver’s isolation. Therefore for most family caregivers, the FCA is an excellent, but still incomplete support resource because it is missing in-person human interaction.


  

Specific support needs for Alzheimer’s disease/dementia, cancer and stroke

Much of the challenges family caregivers face are universal, however each disease presents some unique challenges that are necessary to consider when supporting a caregiver. Dementia, cancer and stroke are three particularly challenging situations. Caregivers for loved ones with cancer or dementia bear greater levels of physical and mental burdens than those caring for other frail elderly ("Coping with Caregiving," 2017). Alzheimer’s is one type of dementia, but there are many others. Those caring for a loved one with dementia often face social isolation, health problems and financial problems. Because of memory loss and personality changes, the family caregiver of a memory care patient also frequently faces anger, grief, and exhaustion ("Caregiver Stress | Caregiver Center," 2018). In addition to the many challenging behaviors that often accompany dementia, family caregivers of dementia patients also deal with the emotional pain of caring for someone who no longer recognizes them. In fact, the pain of caring for a spouse or parent who no longer recognizes you is often regarded by family caregivers as the most difficult aspect of dementia care ("New approaches for dealing with difficult dementia behaviors," 2016).

Family caregivers of cancer patients frequently must provide more intensive care, more hours per day, over a shorter period of time than other types of family caregivers. Also contributing to cancer caregiver stress is aggressive cancer treatments, which leave the patient weak, thereby placing greater demand on the family caregiver. Cancer patients can deteriorate rapidly, contributing greatly to the caregiver’s emotional stress. (Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013) Furthermore, cancer survivors as well as their caregivers often struggle to live with anxiety over a cancer recurrence ("Coping with Caregiving," 2017). Mary V.  experienced great challenge in providing around-the-clock care that her father sometimes required, as well as the physical mobility challenges of assisting a person larger than herself.

The crisis of stroke is another ailment that is highly challenging for family caregivers. Families of stroke patients are usually unprepared to meet the needs of their loved one upon return home. “Approximately 4.8 million stroke survivors are living in the U.S. with some level of disability, and 50% need assistance with ADLs or IADLs” (Lutz, Young, Cox, Martz, & Creasy, 2011). The continual decrease of inpatient rehabilitation services in the U.S. means that stroke patients are discharged home “quicker and sicker” resulting in increased stress on family caregivers. The national average is 4.9 days stay in intensive inpatient care after a stroke, after which patients transition home to rely on family caregivers. A 2011 study on the experiences of stroke patients and their family caregivers found that, “when patients did come home, their caregivers began to realize the enormity of the tests before them. They were now responsible for providing care for 24 hours a day, 7 days a week.” One caregiver in the study said, “It was a day from hell, the day he was discharged. It was horrible. I mean, you know, a terrible, terrible experience” (Lutz, Young, Cox, Martz, & Creasy, 2011). At home, caregivers realized that the skills they learned during inpatient rehabilitation did not always carry over. For example, their bathroom door at home may not be wide enough for a wheelchair, or for 2 people to walk through together. Transfers and mobilization issues were far more difficult to manage at home, and caregivers made 8 to 10 transfers each day. Providing care in the home, especially transfers and medication, without the support of rehabilitation staff, brought up safety concerns for caregivers and patients. Furthermore, according to the study, stroke patients often fall at home, and their caregivers either fall with them or are injured trying to help the patient after a fall (Lutz, Young, Cox, Martz, & Creasy, 2011). In addition, “financial difficulties add to mounting burdens, resulting in caregiver feeling isolated, alone, anxious and exhausted because there are limited, if any transitional services available to stroke survivor/ caregiver dyads as they move home, leaving them to cobble resources and assistance together the best they can. Better transitions of care, care coordination, and patient and family engagement in care decisions are much needed” (Lutz, Young, Cox, Martz, & Creasy, 2011). A traumatic caregiving experience is detrimental and potentially dangerous for the care recipient as well.  

  

Influence of race and ethnicity on the family caregiver experience

Many studies have examined how race and ethnicity influences the experience of family caregivers, however, there is no comprehensive theory regarding ethnic differences because research findings repeatedly contradict each other, and cultural nuances are difficult to parse out. Therefore, one valuable study is a meta-analysis of 116 empirical studies (Pinquart and Sorensen, 2005). The authors highly recommend further studies to develop specific theories about how race and ethnicity influences family caregivers.  For instance, there were not enough studies available on Native Americans to allow the authors to draw meaningful conclusions. Information on ethnic and cultural influences in family caregiving will be useful as the proportion of ethnic minority older adults grows.  As such, it is helpful to understand as much as possible about cultural and ethnic differences in order to provide the best caregiver support possible. For example, one firm conclusion the authors of the meta-analysis drew is that among Asian Americans, the oldest son and his wife are expected to take on the caregiver role (Pinquart, Sorensen, 2005). Therefore, in order for caregiver support to address such a situation, the support team must understand and respect this cultural expectation.

One area in which contradictory results emerged is regarding informal support. Because of their high values of familism, Pinquart and Sorenson expected that caregivers from ethnic minorities would have more support from relatives, friends and neighbors, and that they would have a close relationship with the care recipient. The authors’ meta-analysis can draw no such conclusion, nor can the analysis rule out this idea because research results are inconsistent (2005). The same is true for formal support, where some studies find lower formal support services used by ethnic minorities, but just as many studies find that ethnic minorities use more formal support services, therefore the overall results are inconclusive (2005).

Study results regarding caregiver burden and depression follow the same inconclusive pattern. With regard to burden, some studies in the 1990s reported lower levels of caregiver burden in African-American caregivers than in White caregivers, whereas subsequent studies in the early 2000s did not find such differences. The same inconclusive pattern is found among studies comparing caregiver burden in Hispanic caregivers to non-Hispanic White caregivers. In addition, similar issues appear in findings on caregiver depression (Pinquart, Sorensen, 2005). Although it is unsatisfying to find conflicting, inconclusive results for many aspects of family caregiving, this contradictory information still allows one conclusion. That is that family caregiver support efforts must not make any broad assumptions based on race or ethnicity. For example, a caregiver support program would be negligent to assume that African-American caregivers have more familial support, and therefore do not need information about accessing outside help. In fact, the unwieldy research results in many areas of focus demonstrates that support efforts must never conclude that a caregiver does not need or want certain services based on ethnicity or race.  

In addition, caregiver support efforts must consider that broad categories of ethnicity do not account for sub-cultural differences. For example, “Asian-American” is a very broad term. There is evidence that Japanese-Americans, Chinese-American, and Korean-Americans have different levels of familial responsibility, yet all of these groups fall into the “Asian-American” category (Pinquart, Sorensen, 2005). Another pitfall in evaluating the impact of race and ethnicity is that available studies rely on self-reporting by the caregiver. It is important to know that self-reporting may not always be accurate, and should be accompanied by physiological measures whenever possible. For instance, one study found that African American caregivers did not report worse physical health outcomes on self-report measures, however they did show elevated baseline diastolic blood pressure readings compared with other groups in the study (Knight, Longmire, Dave, Kim, & David, 2007). A similar finding occurred in a sample comparing Korean American caregivers and noncaregivers, in which caregiver status was significantly associated with higher levels of cortisol, systolic and diastolic blood pressure despite the caregivers’ self reports of no physical health changes (Kim & Knight, 2008).

The effect of race and ethnicity on family caregivers’ experiences is nuanced and challenging to parse out, and further study is needed in order to draw meaningful conclusions. Nevertheless, caregiver support efforts would be wise to keep certain broad racial and ethnic trends in mind. Race and ethnicity healthcare disparities such as poverty and language barriers lower access to healthcare, which directly impacts physical and mental health outcomes. African-Americans and Hispanics are more likely to live in poverty, therefore healthcare and health outcomes for these groups are worse overall than for Whites and Asian Americans. Education breaks down along the same racial and ethnic lines as poverty. Race distinctions also allow us to know that Whites are most likely to be caring for a spouse, which is the caregiving dyad proven to cause more stress than any other. And across all ethnicities, females are more likely to be in the caregiving role (Pinquart, Sorensen, 2005). These broad trends must be considered in family caregiver support efforts.

One interesting conclusion from a 2009 study looking for racial and ethnic differences actually revealed a universal struggle. That is, regardless of race, Knight and Sayegh found a common pattern of stress and coping in family caregivers that begins with the care recipient’s problems which then leads to the caregivers’ appraisals of caregiving as burdensome, and finally results in poor physical and emotional health outcomes for caregivers (2009). Knowledge of universal truths is valuable information to use in caregiver support efforts. For instance, the pattern Knight and Sayegh documented can guide support efforts to address the burdensome assessment caregivers make by helping them access outside resources, and also helping them cultivate the positive aspects of caregiving, two strategies aimed at reducing the common stress/burden pattern.  Finally, this finding serves as a good reminder that regardless of race, most caregivers are already struggling, or will struggle, if they do not receive support services.


Discussion

The novel support program proposed in this paper entitled Caregivers Access to Resources, Education and Support (C.A.R.E.S.) will improve the lives of both caregivers and the loved one they care for, by providing holistic support and resources for the family caregiver. Properly supporting family caregivers is necessary for a sustainable and humane family caregiving experience. The eight-week C.A.R.E.S. workshop is designed to facilitate self-efficacy for caregiver participants, and address the most common challenges family caregivers face such as stress management, navigating medical care and resources, social isolation and financial problems. 

Stress often takes over when the caregiver is consumed with duties of caring, and puts her own needs on hold. Therefore, the first session will address burnout and self-care. We will explore: What is self-care and why do caregivers need self care? As Abbitt says, “You can lose yourself in the shuffle. And even if putting yourself first goes against your instincts as a caregiver, it is vital to do so. Research shows that medical problems such as physical and mental exhaustion, sleeplessness, depression, and loss of appetite may arise for those who don’t take care of themselves. And think about it: If something happens to you, what will your care recipient do? Who will care for your loved one? This is where conscious caregiving becomes so important for both you and those who depend on you” (2017). Mary V. suggested having a coach available to her, the caregiver, while she spent all day at her father’s chemotherapy appointments. This would require flexible coach availability, but with some clever innovation, this idea could work.  C.A.R.E.S. will have an ongoing weekly discussion with coaching interwoven including check-in regarding self-care practices, goals and obstacles to self-care, and individual coaching available upon request.

Lack of self care and other aspects of the caregiver role create a great deal of stress, as documented in multiple research studies. Therefore, the second session will introduce the concept of Mindfulness Based Stress Reduction (MBSR) as a helpful tool for caregiver participants. Caregiver participants will learn the basics of MBSR, and will be encouraged to begin their own mindfulness practice. Participants will also be encouraged to begin their own private meditation practice to support their MBSR tool, and we will discuss different ways to meditate. 

One important value of the group setting is validation, therefore we will have designated sharing times in each session. We will also validate the difficult feelings that often arise for family caregivers, and dedicate one session to discussing common feelings such as: ambivalence, anxiety, boredom, disgust, embarrassment, exhaustion, frustration, grief, guilt, impatience, jealousy, loneliness, loss, and resentment. Often caregivers suppress or judge these feelings. In this session we will also explore the positive aspects of caregiving. “Interventions focus on reducing negative effects of caregiving, but they do not address increasing positive emotion and incorporating or focusing on aspects of caregiving that increase subjective well-being… Thus we recommend incorporating elements into an intervention that systematically assist in developing positive appraisal, finding meaning, and recognizing enjoyable aspects of caregiving” (Pinquart, Sorensen, 2005). Mary V. knows that caring for her father was difficult, yet she is glad to have had the experience. She also developed an ongoing interest in meditation and Buddhism, another positive outcome she attributes to her caregiving experience.

The C.A.R.E.S. workshop will give appropriate information and resources to participants. Time spent on practical topics will cover issues such as family dynamics, how to ask for help, how to talk to medical professionals, how to organize records, medicines, appointments, as well as legal and financial resources, preparing for an earthquake, how to get outside help and arranging respite care. Workshop participants will create a resource notebook throughout the workshop. In addition, the C.A.R.E.S. web site will link to many resources.

The eight week workshop provides built-in socialization to address the isolation many caregivers face. Participants will be encouraged to create an ongoing group, attend a monthly C.A.R.E.S. potluck, attend the caregiving 102 workshop, or commit to another in-person group. In addition, caregiver participants can choose private coaching with me for individual support. 

C.A.R.E.S. workshops and offerings will be valuable to individual family caregiver participants, however broad social and political change is also needed to create the proper foundation for the silent army of family caregivers. Universal medical care is necessary to prevent the financial problems caused by medical bills. In addition, employment policies on family medical leave must allow employees to take a realistic amount of  absence to provide or establish care. A social security fund to allow this leave-of-absence without bankrupting the family is also required. Furthermore, long-standing, systemic gender and racial inequalities must be remedied so that family caregiving burdens do not continue to deplete the most vulnerable members of society. The U.S. can divert money from its exorbitant military budget in order to fund these necessary social reforms.  

Some recent legislation has passed that will help family caregivers. The Caregiver Advise, Record, Enable (CARE) Act has been signed into law in 36 states, D.C and Puerto Rico. This act requires hospitals to provide the family caregiver with education and instruction of the medical tasks to be performed at home. Also, in January of 2018, President Trump signed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. This act supports the millions of family caregivers in the U.S., and the care recipients relying upon them. The law directs the Department of Health and Human Services (HHS) to develop, maintain and periodically update a family caregiving strategy. HHS will convene a Family Caregiving Advisory Council to develop the national family caregiving strategy (AARP).

Increasing funding and reducing restrictive regulations for adult day care programs will help to give family caregivers respite care for a loved one, and a potential social community as well.

Family caregivers could unionize and request to be paid for their services, either by health insurance companies, local, state or federal governments. Already in some situations family caregivers can be paid for their work. Moreover, family caregivers should continue to accrue social security benefits for their services.

Other broad improvements include training for medical professionals about how to help family caregivers, and providing support services directly to family caregivers, rather than only providing information about how to care for their loved one. Centralized and standardized family caregiver support services would allow medical professionals to connect caregivers to support services in order to reduce injury, prevent poor health outcomes, and decrease unnecessary hospitalizations for both caregivers and care recipients. “Because of funding policies, the current system focuses on the needs of patients and views family caregivers as resources for patients. The needs of caregivers are marginalized and eclipsed. The caregiving capacity of family members is not systematically assessed prior to discharge. And transfer and discharge decisions are based on insurance policy directives and prospective payment systems, and not on the needs of caregivers and care recipients” (Lutz, Young, Cox, Martz, & Creasy, 2011). In addition to workshops like C.A.R.E.S., more studies on family caregiver experiences are needed to create effective support programs. Qualitative studies in which caregivers can relate their experiences and share their own ideas for what would help improve their situations should be integrated with other types of studies because caregivers’ experiences are nuanced and dynamic. 

Furthermore, national social and emotional learning efforts to foster compassion, empathy and caregiving skills in both boys and girls are recommended for future family care needs. Such a program would be similar to national programs that promote an interest in science, technology and math (STEM) that are often targeted at girls. With the exception of a few psychological and developmental disorders, everyone is capable of empathy and caregiving. Developing and instilling these qualities early and throughout childhood can help prepare future generations to fulfill family caregiving needs. As birth rates fall, there are less siblings to care for parents, and less young people to care for elders. At the same time birth rates are falling, life expectancy is rising, thereby creating more of a gap in available family caregivers, therefore we must prepare both genders to fill this gap.


Conclusion

Family caregiving is a complicated national issue that will impact everyone as the baby boom generation forces a rework or collapse of the current way that long term care is offloaded onto families with a minimal, threadbare system of support. The dire situation for many family caregivers reflects the values of  U.S. society. The 2018 RAISE Caregivers act, signed into law by President Trump, begins to address the problem, however other recent policy moves undermine this step forward. Lack of universal health coverage, cuts to medicare and medicaid, and lack of an overall social safety net are in opposition to the needs of family caregivers and the elderly, sick and disabled care recipients they serve. Additionally, immigrants provide much of the in-home care and other services that family caregivers rely upon. Hostile immigration policies and sentiment in the U.S. threaten the reliance on such labor. 

Gender inequality is an entrenched issue related to to family caregiving. The undervaluing of traditionally female jobs and roles, especially caregiving roles, exacerbates gender inequality. Caregiving should be considered “work” and should therefore be paid, either by governments or by the health care companies who increase their profit by offloading long-term care services onto an unpaid family caregiver. In addition, those in a family caregiving role must continue to accrue social security credits for future needs. We must continue to chip away at the gender and racial disparities in income and healthcare access that perpetuate the burdensome conditions facing family caregivers. The U.S. is embarrassingly backwards in the social and health care supports we provide to families and elders. 

We must shift away from investing in our bloated military and prison system, and instead invest in health care and social supports over the lifespan. This may require an overhaul of the health care system to remove the profit motive, or if the profit must remain, then those companies who profit must pay family caregivers’ wages for their work, as well as health care and retirement benefits. Growing old, a major illness, or providing care for a frail and ailing loved one should not bankrupt families in one of the world’s richest countries. We need intelligent, compassionate leaders who will prioritize basic human needs above all else, and understand that caring for the elderly and disabled is a role that requires and deserves multiple levels of support.

Such changes and progress are uncertain in the U.S.  In the end, this is not about politics, it is about peoples’ lives. The best way to help, regardless of national policies, is by offering direct support, with honor and respect, through the C.A.R.E.S. program.


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Appendix

C.A.R.E.S. 8-week curriculum

Week 1: Introduction, Self care

Introductions - what brings you to the workshop? Who are you caring for?

overview 8 week session

resources: recommend a few books

What is a caregiver? What are impacts of caregiving for a loved one?

Self care - why, how

Homework: daily track self care in journal

 

Week 2: Mindfulness Based Stress Reduction (MBSR)

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

MBSR what, why, how

meditation - introduction to sitting, standing, moving - MBSR & meditation are not the same thing, you do not need to meditate to use MBSR, but it is helpful.

Homework: daily track self care in journal, other?

 

Week 3: Emotions

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

We will dedicate one session to discussing some of the common difficult feelings that arise for caregivers: ambivalence, anxiety, boredom, disgust, embarrassment, exhaustion, frustration, grief, guilt, impatience, jealousy, loneliness, loss, ad resentment. In addition, we will have time dedicated to exploring the Positive aspects of caregiving

Homework: daily track self care in journal, other? 

 

Week 4: Time Management, how to get organized

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

Time management, how to get organized, how to keep track of medications, appointments, meals, etc.

Homework: daily track self care in journal, other? 

 

Week 5: Legal and Financial Resources  

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

Legal and financial issues and resources presentation and discussion: power of attorney, DNR, more from dutiful daughter’s guide

Homework: daily track self care in journal, other? 

 

Week 6: Navigating the Medical Maze

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

How to talk to doctors, how to talk to family about care recipient’s medical info, nursing “tips” and info/webinars, etc. from Caregiver’s college, 

Homework: daily track self care in journal, other? 

 

Week 7: How to deal with difficult behaviors

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

Dealing with difficult behaviors - discussion. What behaviors are you dealing with? Q-Tip (Quit Taking It Personally), incontinence? role playing. More from caregiver’s college? Will need to know what challenging behaviors our group is facing. Also discuss knowing when it’s time to move your loved one into a facility? 

Homework: daily track self care in journal, other? 

 

Week 8: Catch up, review, wrap up, maintaining social support network

3 minutes of quiet meditation together to begin meeting

overview of session

15-minute small group check in

15-minute whole group check in

self care check in

Caregivers will be encouraged to prioritize socializing with each other at a monthly potluck, or join caregiving 102 workshop - get out there in person (not online)!