Caregiver burden can have adverse effects on patients, their caregivers, and society (Table 13.2). Caregivers suffering from burden are at a higher risk for committing elder abuse or neglect [18].

The mental health of caregivers is often affected with high rates of depression and anxiety. In one study of caregivers for individuals with dementia, a third of the caregivers met criteria for depression [16]. Caregivers are more likely to report that they are dissatisfied or very dissatisfied with their lives [1]. Caregivers have higher rates of emotional stress, less time for other friends and family, and often neglect self-care, such as healthy sleep, exercise, and diet [15]. Maladaptive coping strategies such as self-blame or wishful thinking have been linked with more anxiety and depression [14].

Caregivers report lower levels of physical and overall health. Twenty-three percent of adults who have been caregiving for over 5 years consider their personal health as fair or poor, compared to 13 % of the general adult population [2]. Seventeen percent of caregivers believe that their health has deteriorated as a result of providing care [13]. Elderly spouses who experienced caregiver burden had a mortality risk that was 63 % higher than that of controls [19].

While caregiving is associated with significant burdens, it can also have many benefits for the caregiver. Positive outcomes include enjoyment of role and personal fulfillment from helping a loved one. Caregivers at home are often family members or friends of the patient and caregiving allows them to have a continued rewarding relationship with their loved one.

Given the impact of caregiver burden, home-based medical care clinicians should assess caregiver’s well-being. Multiple scales exist, but the most widely used is the 22-item Zarit Burden Interview (ZBI) (Table 13.3) [20]. This questionnaire was designed for research, rather than clinical use in daily practice. However, we include it in this chapter to describe the scope of issues to consider when assessing caregiver burden, with higher scores reflecting higher levels of burden. A 4-item screening version (Table 13.4) and 12-item short version of the questionnaire were developed and validated for easier screening of caregivers of community dwelling older adults with cognitive impairment [21].

During the home visit, clinicians should ask questions to assess caregivers’ mental health, coping, behavioral management, social support, and resources [22]. Examples of useful questions include the following.

After assessing caregiver burden, clinicians should provide education, support, and assist caregivers with identifying resources for support. These issues are addressed in the subsequent sections. The Family Caregiver Alliance National Center on Caregiving also has an online toolkit to help clinicians assess caregivers (https://​caregiver.​org/​caregivers-count-too-toolkit). This resource provides a helpful overview of caregiving and resources, as well as a guide to conducting a caregiver assessment in Sect. 3.

The primary support for most caregivers is their informal social networks and clinicians should inquire about friends or family that may be assisting them. Clinicians can provide education, as well as involve other skilled resources when needed. Finally, caregivers should be informed of local and national resources, including in-person and online support groups, counseling, education and skills trainings, and respite care [22].

Most support groups and organizations focus on sharing the caregiver’s experience, as well as learning strategies and skills for caregiving. An intervention including counseling sessions and conversation groups resulted in a 6-month delay in nursing home placement [23]. Skilled therapy, such as cognitive behavioral therapy, is not as widely available, but has been shown to reduce depression in caregivers [24]. Interventions have been developed to address coping strategies, reduce anxiety, and increase satisfaction. A focus on problem solving and acceptance styles of coping is likely helpful for caregivers and can lead to a more positive caregiver experience [25].

Educational and supportive interventions have been shown to positively impact family and caregivers. Home visiting programs can help support caregivers and are most helpful in reducing burden among caregivers who live with patients [26]. Caregiver burden should be assessed and addressed, as this can improve quality of life for the caregiver and also ensure safety and sustainability of the caregiver–patient relationship. Additional resources are discussed at the end of this chapter.

While the majority of caregivers provide devoted, quality care, abuse and neglect of older, vulnerable adults remain prevalent. Elder abuse is intentional or neglectful act by a caregiver or trusted individual that harm a vulnerable older adult. One in 10 older adults experiences abuse or neglect by a caregiver each year and the incidence is expected to increase [18]. Elder abuse occurs most in home situations. Risk factors for elder abuse include shared living arrangements, cognitive impairment with disruptive behaviors, social isolation, caregiver’s mental illness, and financial dependence on the older adult [17]. The US Preventive Services Task Force found insufficient evidence to assess the balance of benefits and harms of screening for abuse of older or vulnerable adults. However, clinicians in most states have professional and legal obligations to report and refer persons who are suspected of being victims of abuse [18]. Clinicians that perform home-based medical care are uniquely able to assess the dynamic of the caregiver and patient, as well as the safety of the home environment. Clinicians should be familiar with signs of and risk factors for elder abuse, so they can appropriately identify this underrecognized problem. Chapter 11, “Social and Ethical Issues In Home-Based Medical Care,” addresses the complexities of assessment for abuse or neglect in these vulnerable patients.

Clinicians should ensure that they interview the patient alone without the caregiver present. Suggestions on how to interview the patient alone are described in detail in the section on Caregiver Education under “Interacting with Caregivers: Key Language and Techniques.” The Elder Abuse Suspicion Index, available online, is a 6-item validated screen for use in primary care settings with cognitively intact patients [27]. The goal of the screen is to help identify possible cases of abuse to prompt providers to conduct more in-depth evaluation. Questions focus on neglect, emotional, financial, and physical abuse.

For patients with cognitive impairment, clinicians will need to rely on other possible red flags, such as:

Any time elder abuse is suspected, the case must be reported to the local Adult Protective Services.

Home-based medical care can be delivered in a variety of community settings: from private residences and small Board and Care homes to large assisted living facilities and entire “campuses” of a Continuing Care Retirement Community (Table 13.5). These settings provide varying levels of structural and programmed care that can enable an older adult to remain more independent, while also reducing burden on informal caregivers. Understanding the levels of care available to patients and caregivers in these settings, as well as the variable costs and availability of coverage through county programs or long-term care insurance, is useful for providers.