Understanding and Alleviating Caregiver Fear

Understanding and Alleviating Caregiver FearLisa Herms, MSc, Research Analyst, Sodexo

Rachel S. Permuth, PhD, MSPH, National Research Director, Sodexo

2The information and concepts contained in this document are the proprietary property of Sodexo.

As such, they cannot be reproduced or utilized without permission. ©2016

In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with health-, disability-, or age-related limitations in daily activities. The estimated economic value of this unpaid contribution was approximately $470 billion.1 Aside from the economic value, caregiving has also been linked with the quality of life and health of patients.

Proper caregiving can help to reduce hospital readmissions and enable quicker recovery. At the same time, poor – or rather uninformed – caregiving has been linked with an increase in readmission rates.2 The contribution of caregivers is, therefore, unquestionably clear. In fact, many consider family caregivers to be the very foundation of the U.S. health care system, as they provide care and assist in recovery at home, and help disseminate new multimodality treatment protocols.3

At the same time, the role of the caregiver can be extremely difficult, stressful, daunting and overwhelming. To enable caregivers to provide optimal treatment, the health care system must also ensure that the caregivers are taken care of. This means expanding the traditional view of providing care to go beyond the patient – recognizing caregivers and the important role they play.

In the effort to achieve better health outcomes and healthier populations, the health care profession must acknowledge their stressors and fears, and actively seek to alleviate them through support, information, and other mechanisms or programs. This paper will discuss the definition, roles and evolution of the family caregiver, before delving into the topic of caregiver fear – including the sources, consequences and mechanisms for alleviation.

Many consider family caregivers to be the very

foundation of the U.S. health care system.

DeFinition oF the CAregiverIn this paper, we will focus on caregivers for discharged patients, meaning those who accompany a loved one during and after a treatment pathway. Of course, in reality, the concept of caregiving is much broader. In particular, many of the themes in this paper also have implications for caregiving in senior living facilities.

Family caregivers, also known as informal caregivers, provide a complex array of support tasks for a discharged patient that extends across physical, psychological, spiritual and emotional domains.4 Caregivers undertake multifaceted responsibilities and roles, including those in Figure 1.5





Figure 1: Common roles for Caregivers

the ChAnging nAtUre oF the CAregiverIn the wake of demographic shifts and medical advances, the profile of patient caregivers is changing rapidly.

Women have historically been the primary contributors to unpaid family-based caring. Yet, with an increasingly large portion of women working out-of-home, the costs and strains of caregiving are growing.

Living arrangements are changing and impacting the nature of caregiving. Multi-generational households, which have historically been the basis for flexible care arrangements, are becoming rarer in industrialized countries. At the same time, single-person households are increasing.

In addition, while caregivers may be able to meet their charge’s daily needs, they may struggle with aspects of social interaction that require the support of other individuals or local organizations for routine practicalities, such as transport.

These factors contribute to a shrinking population of caregivers, many of whom are subject to greater pressures, while the need for caregivers continues to grow. As such, the changing nature of caregiving is a source of fear for current and potential caregivers who may be called upon to help their loved ones.

There is a shrinking population of caregivers, many of

whom are subject to greater pressures, while the need for caregivers continues to grow.

• Hands-On PrOvider: Caregivers sometimes themselves turn into service providers, ranging from medication administration, to accompanying the patient to medical appointments, running personal errands, managing cooking, cleaning, assisting the patient with personal hygiene and other housekeeping tasks.

• CommUniCAtor: Communication barriers often arise within certain patient groups, including older patients, patients with lower levels of education and culturally disparate groups. The family caregiver will often undertake the role of communicator, serving as the link between medical personnel and the patients themselves, and thereby ensuring patients feel safe.

• DeCision mAker: Decisions about treatment options, role changes and finances are generally made by the patient-family (patient-caregiver) unit. Caregivers are often tasked with making decisions either alongside or on behalf of a patient.6,7

• ADvoCAte: Caregivers often become advocates for their loved ones. This includes taking over administrative tasks, such as care management, managing insurance claims and bills, actively seeking information and contacting doctors.

• sOcial suPPOrt: One of the most fundamental tasks of the caregiver is to provide companionship and socialize with patients, to make them feel supported and retain a sense of normalcy.



soUrCes oF FeAr For CAregiversThe changing situation for caregivers is a major source of fear, even though it may be largely unknown outside of the health care sphere. However, there are several more concrete primary drivers of caregiver fear.

The prevalence of specific fears differs depending on the specific role of the caregiver and also the characteristics of the patients, but a few fears are generally considered to be universal. When listening to the experiences of caregivers, three very important questions come up. These questions, and the specific fears they can lead to, are displayed in Figure 2.

At the root of caregiver fear is the loss of control and

loneliness associated with being a caregiver.

Figure 2: key Fears of Caregivers

ConseqUenCes oF CAregiver FeArConseqUenCes For CAregivers

The key struggle many caregivers face is loneliness. Loneliness is a result of fear – fear of showing emotions, fear of reaching out, and fear of appearing selfish. At the same time, stress and fear can also result in caregivers not properly taking care of themselves. This can include poor eating habits, not getting enough sleep, not taking their own medications or tending to their own chronic conditions, poor grooming, or a lack of social interactions.

As a result, caregivers experience severe strains on their physical and mental health. Between 10-20% of caregivers indicate that their general health status has gotten worse as a result of becoming a caregiver.8 An estimated 17-35% of family caregivers view their health as either fair or poor.9 Research has also found caregivers to be at risk for fatigue

What if i fail?

What if I provide insufficient care?What if I miss vital warning signs?What if I don’t foresee and handle any complications?

What if i lose control?

What will happen to my loved one if I die?What if the disease comes back?

What if i can’t handle it emotionally?

What if I feel ashamed?What if I feel resentment toward my loved one?What if I show my loved one that they are a burden?What if I showcase emotions - especially despair?What if I am selfish and need support for myself?





and sleep disturbances,10 immune system problems11, slower wound healing12, higher blood pressure13, and higher risks for cardiovascular disease.14 Between 40% - 70% of family caregivers experience clinical symptoms of depression, which are often caused by loneliness and isolation.15

Not surprisingly, caregiving also negatively impacts the caregiver’s work life. More than 1 in 6 individuals working full or part time report that caregiving for 15 hours per week significantly affects their work life.16 70% of working caregivers suffer work-related difficulties due to their dual roles.17 Among working caregivers, 69% report having to rearrange their work schedules, decrease their hours, or take unpaid leave in order to meet their caregiving responsibilities.18 Others turn down a promotion, choose early retirement, or even give up working entirely, to care for sick loved ones.19

cOnsequences fOr Patients

Research has identified a clear reciprocal relationship between patient and caregiver fear.20,21 The patient’s distress affects their caregiver’s distress, but also the caregiver’s distress affects the patient – perhaps even more so.22-24

Caregivers may unwillingly project their fear onto their patients. Seeing their caregiver suffer, a patient may feel like a burden. This has negative implications for successful recovery. Alternatively, seeing their caregivers “give up”, patients may become afraid for their own coping mechanisms. If their caregiver is in despair, how are they, the patients, supposed to remain optimistic?

A large body of research has documented that when caregivers feel more confident in their ability to provide care, patients have better symptom management25, better medication management26, spend less time in bed, have more energy, and have a higher physical quality of life.27 By inference, a lack of caregiver confidence has adverse effects on the patient.

AlleviAting the FeAr oF CAregivers Given the negative repercussions of caregiver fear – both on the caregiver and their charges – it seems clear that the next step in the journey toward better health is a focus on the caregivers. For everyone’s well-being, health care providers must work toward recognizing, understanding and alleviating caregivers’ fear. The underlying mechanism of doing so is to implement initiatives targeted at providing information and social support to combat feelings of loss of control and loneliness.

With this in mind, two approaches can serve as starting points (Figure 3):

Figure 3: Approaches to Caring for informal or Family Caregivers

CAring For inFormAl or FAmily CAregivers

helping Caregivers Achieve a sense of normal

helping Caregivers Provide care

� employment-related Factors

� Provide information, education and training

� social Connection and support

� reduce the Caregiver Burden

Between 10-20% of caregivers indicate that their general

health status has gotten worse as a result of becoming a

caregiver.



HelPing caregivers acHieve a sense Of normAl

To help caregivers cope with their loved one’s illnesses and provide support, caregivers themselves must also be provided with some form of support or assistance to help them achieve or retain a sense of normal.

Employment-related Factors

Employment-related factors refer to any efforts that allow caregivers to retain their employment status, while also succeeding in their role as caregivers.

In today’s environment, the majority of informal caregivers are employed when tragedy – or illness – strikes their families. When events take an unexpected turn and a loved one requires care after discharge from the hospital, this is a disruption from the caregiver’s normal way of life, in more ways than one.

Amongst many other aspects is the disruption of a caregiver’s normal employment situation. As discussed, research shows that caregiving responsibilities can negatively impact work roles, as caregivers struggle to adapt their employment obligations to simultaneously be able to meet care demands.28 In an always-on society, it is very difficult, if not impossible, to perform a job in the same manner as before, and simultaneously take on the role of a caregiver. However, the alternative – leaving their place of employment – may not only be economically infeasible, but would be a further disruption and source of anxiety for caregivers.

To alleviate caregiver fear, employers can help caregivers achieve a sense of normal – by accounting for the fact that they may need some special support or accommodations. Employers can provide caregivers some respite from ongoing activities, thereby serving as a buffer to distress and helping to find a middle ground.29,30

Flexible scheduling and work arrangements, for example, can help a caregiver juggle both their work life and their role as a family caregiver, without requiring them to give up one over the other. San Francisco has recently led the way in such an effort. Its “Family Friendly Workplace Ordinance” prohibits caregiver discrimination and gives employees the right to request flexible or predictable working arrangements, to allow them to follow their caregiving responsibilities for children, family members with serious health conditions, or parents age 65 or older.31

Another example of an employment-related anxiety alleviation mechanism is concierge-type services at the workplace that can allow employed caregivers to make necessary arrangements while they are at work. For example, Sodexo’s Circles program offers employees an on-demand personal assistant in and out of the workplace, to help ease their day-to-day demands, from dry-cleaning to meal services and grocery delivery.

Concierge-type services at the workplace can allow

employed caregivers to make necessary arrangements while

they are at work.





Providing Social Connection

For caregivers, achieving a sense of normalcy also includes having the ability to remain socially connected. Being a caregiver, just like being a patient, is a very isolating experience. It is vital that caregivers receive – and maintain – some form of social connection. This can be done through meetings and support groups or through a network of family and friends. It is about providing an environment where caregivers can “act selfish” (in their minds) and speak openly about their struggles with those in similar situations.32 In the words from the Mayo Caregiving Support blog: “when caregivers share their fears and pain, door opens for hope”.33 Interventions aimed at providing group support and connection for caregivers found decreased depression and anxiety, and increased social support.34 In addition, simple interventions that merely “checked up” on caregivers and relayed friendly phone calls led to reduced burden and distress, likely due to an opportunity for respite.35

HelPing caregivers tO PrOvide care

Caregivers are, for the most part, not trained professionals; yet, they are tasked with responsibilities previously provided by nurses and hospital staff. As such, it makes sense that caregivers can benefit from some form of assistance in providing care.

Providing Information, Education and Training

Information is a key source of empowerment, and yet oftentimes, caregivers are not adequately informed about their roles and responsibilities. Research finds many family caregivers craving more information, because they feel unprepared to provide the care expected of them. Caregivers indicate needing, but not receiving, training for hands-on tasks such as administering medications, managing side-effects and complications, and changing wound dressings.36 They also indicate a lack of information about proven ways to deal with patients’ emotional concerns and seek further guidance from professionals on how to engage with patients’ depression, anxiety and uncertainty.37

Health Education Programs that aim to provide caregivers with necessary information have been shown to successfully increase caregiver coping ability.



As a result, providing caregivers with information, education, and training can have a significant impact on caregiver fear alleviation. Strengthening their competence, and therefore confidence, has been directly linked to alleviating fear and improving caregivers’ mastery – the amount of control they feel over forces impinging on them.38

Reducing Caregiver Burden

Family caregivers not only lack information and support for fulfilling their duties as caregivers, but they also lack the support they need to deal with their own emotional distress. Oftentimes, caregivers indicate receiving less support than their patients, despite the fact that they are clearly co-sufferers.40

Hospitals have partnered with Circles for on-site concierge programs as a resource for patients and visitors. When a loved one is admitted to a hospital, this resource assists the caregiver with demands that still need to be met at home, such as arranging pet care and, upon discharge, can make meal arrangements to ensure the patient has proper dietary needs met.

Other programs are designed to provide formal caregiving – even if not full time – in order to take over some elements of patient care and thereby give the caregiver a break. Programs such as Comfort Keepers® can be used not only to help the patients, but also to relieve the caregivers by taking over the caregiving role for a designated period of time.

One way to provide support is to relieve the caregivers of some of

their duties. “At Comfort Keepers®, we not

only provide quality care for

our clients, we also address the

needs of their family caregivers.

We strive to make both parties

comfortable, safe, happy and

healthy so they may live the best

quality of life that is possible.

That is why respite care is such

an important part of our list of

care services.”

– Sarosh Mistry CEO, Comfort Keepers Franchising, Inc.





ADDitionAl ConsiDerAtions to CAre For CAregivers

There is a decisive difference between programs that support patients, and those targeted at their caregivers.

It is also important to note that the fears and needs of caregivers change across the continuum of care. Throughout the patient journey, there are many changes in the focus of care, the individual responsible for care and the patient’s self-care abilities. Therefore, family members who provide supportive care also experience changes in their roles as caregivers, and every phase – from in-patient acute care to rehabilitation and post-discharge recovery – brings with it new challenges and new anxieties. So to successfully alleviate caregiver fear, it is vital to be aware of the changing needs across the care continuum.42

ConClUsionIt is clear that family caregiving does have negative and far-reaching consequences, due to the fear and anxiety it induces in the caregivers. Because of the interdependencies and far-reaching effects of caregiver fear on the health care system as a whole, it is evident that population and community-wide health can be improved by concentrating on caregivers. Future efforts should focus not only on the patients, but also on the sources of anxiety of the caregivers, and steps that can be taken to alleviate this fear. Taking care of the caregiver ultimately improves outcomes for the patients, reducing readmissions, as well as prevents future health problems whereby the caregivers themselves turn into patients of chronic or mental illness.

Taking care of the caregiver ultimately improves outcomes for the patients.



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