In the United States, nearly 16 million caregivers provide more than 17 billion hours of unpaid care to people with Alzheimer’s and other types of dementia. Significantly, the vast majority of caregivers for older adults in the U.S. are family members. Dementia profoundly affects these caregivers, who bear its emotional, physical, and financial burdens (CDC, 2023, June 30).

15.1 Types and Causes of Stress

Although most caregivers are positive about the experience of caregiving, providing 24-hour care for a person with dementia is challenging. A review of 37 studies on the health consequences of being caregivers to family members with dementia found that most were living in a state similar to chronic stress (Kabir et al., 2020).

Many spousal caregivers have health problems of their own due to the tasks of caring and the distress associated with the role. As a result, caregivers are at high risk of depression and anxiety. Depression can remain even after institutionalization or death of the care recipient. The intensity of caregiving can also cause a sense of isolation and loneliness (Kabir et al., 2020).

The term caregiver burden is often used to describe this phenomenon, which is defined as the degree to which a caregiver’s emotional or physical health, social life or financial status has suffered as a result of caring for their relative. Informal caregivers of people with dementia living at home experience care as more burdensome compared to informal caregivers of recently institutionalized people with dementia (Tretteteig et al., 2017).

15.2 How Stress Manifests Itself

Due to the progressive course of dementia, the likelihood of physical, social, financial, and mental health challenges increase. The risk for depression, anxiety, increased perceived burden, and a reduction in the caregiver’s quality of life are common. Caregiver mental health issues increases the likelihood of a family member with dementia being moved to a residential facility. Although this can reduce the demands of daily caregiving, it can lead to feelings of guilt, anxiety, depression, and financial strain. Certain factors increase caregiver vulnerability (Wiegelmann et al., 2021):

• Socio-demographic factors such as female gender, spousal relationship, cohabitation, lower income, and financial inadequacy.
• Disease-related factors such as frontotemporal dementia, duration of caregiving, neuropsychiatric symptoms, behavioral problems, and impairment in basic daily activities.
• Caregiver factors such as high level of neuroticism, high expressed emotion, low confidence in caregiving role, feelings of being trapped and emotion-based, confrontative coping strategies.
• Relationship factors such as poorer relationship quality and low levels of intimacy.

For the caregiver, physical health problems related to caregiving, hypertension, cardiovascular disease, and sleep problems are common. Relationship challenges, greater family dysfunction, feelings of isolation, and inadequate social support add to the stress of caregiving (Trapp et al., 2015).

Family members can also become stigmatized and may experience feelings of shame about the disease. The feeling of stigma experienced by clients and caregivers is an important and potentially modifiable contributor to caregiver burden (Kahn et al., 2016).

Female spousal caregivers may suffer more stigma, as well as burden. Studies have suggested that caring for men with dementia is more arduous than caring for women with dementia. Compared to women with dementia, men with dementia tend to have more behavioral symptoms, such as disinhibition, aggression, and sexual inappropriateness. These behaviors are particularly stressful or embarrassing for caregivers and can increase their feelings of stress (Kahn et al., 2016).

15.3 Strategies to Reduce Caregiver Stress

In the early stage of dementia, family caregivers often do not use healthcare or social services that can provide early support and training. Understanding how to navigate the healthcare system, getting emotional support, and learning coping strategies can significantly reduce caregiver stress (Kabir et al., 2020).

Did You Know. . .

Dementia patients have higher rates of behavioral symptoms and mortality when cared for by families who are stressed, use emotion-based coping (e.g., wishing the disease would go away), or negative communication strategies.

Gitlin and Vause Earland
A Biobehavioral Home-Based Intervention and the Well-being of Patients with Dementia and Their Caregivers

Most healthcare providers and professional caregivers fail to recognize that the caregiver is also a client. Supporting and training caregivers reduces caregiver illness and delays institutionalization—especially for caregivers of family members with dementia.

Providing caregivers with the financial and emotional support needed to care for a family member with dementia has been shown to reduce caregiver stress. Web-based courses can provide education, counselling, and assistance, allowing caregivers with a busy schedule to study at their own pace. Online courses should be designed to meet the learner’s social and cultural needs (Klimova et al., 2019b).

Despite the difficulties of caring for a person with dementia, many caregivers report a variety of positive experiences related to caregiving. Resilience, effective coping, and adaptation when faced with loss, hardship, or adversity have been identified as protective factors against caregiver stress. Similarly, optimism—a general positive outlook on life—has been associated with improved dementia caregiver mental health (Trapp et al., 2015).

15.3.1 The Role of Specialized Adult Day Care

Adult day care programs play a role in reducing caregiver burden by providing education and techniques for dealing with behavioral challenges. These programs offer respite and support services, which can provide relief, reduce caregiver burden, and increase caregivers’ motivation for their role as a caregiver.

Adult day care programs (Tretteteig et al., 2017):

1. Provide separation time, giving family caregivers time for undisturbed work, rest, or other pursuits.
2. Reduce behavioral problems and the need for assistance with ADLs.
3. Reduce care demands, stress, and depression.
4. Increase motivation for care.
5. Offer information and support, potentially postponing the need for residential care.

15.3.2 The Role of Dementia Care Programs

Dementia care programs are multidisciplinary and multi-departmental programs designed to meet the needs of clients with dementia and their families. The quality and success of a dementia care program is influenced by the environment of a care facility and by the facility’s philosophy of care, available services, and staff experience and training. They usually include support groups for family members, friends, and caregivers.

A well-designed dementia care program allows and encourages families to visit at any time and plans activities that include family members. A good dementia care program:

• Encourages family involvement in the planning of activities.
• Informs family members about changes to their loved one’s condition.
• Keeps a log of client activities to share with the family.
• Uses technology to keep families in touch with one another.

In many areas, lack of access to memory care specialists and caregiver support groups means caregivers may be unaware of services available in their communities. People from rural communities, and Black and minority ethnic groups often experience inequalities in accessing post-diagnostic care, support services, and care programs.

15.3.3 Collaborative Care

Collaborative care models use multidisciplinary teams to integrate medical and psychosocial approaches to healthcare for people living with dementia. Care coordination functions are assigned to specific care coordinators. Collaborative care is usually organized within a healthcare system but may be provided through services either in the community or in residential facilities (Butler et al., 2020).

Dementia Care Management is a type of collaborative care that aims to improve care after a dementia diagnosis. This approach can reduce caregiver burden, improve quality of live for the person living with dementia and their caregivers, and reduce the risk of institutionalization (Mühlichen et al, 2022).

15.3.4 Mastery over Dementia

Caregiver mastery is defined as a positive view of one's ability and ongoing behavior during the caregiving process. A high level of mastery is a buffer to caregiver stress. High caregiver mastery also promotes better health outcomes in people for whom they are caring. For example, family caregivers’ mastery was related to higher survival rate in persons living with cancer and poor family caregiver mastery was related to increased anxiety symptoms in adolescents with epilepsy. Unfortunately, there is little information on how caregiver mastery is related to people living with dementia Hwang and Hodgson, 2021).

An innovative caregiver support program, Mastery over Dementia, looked at the effectiveness of internet-based training to reduce anxiety and depression among family members caring for a person with dementia. The results showed that caregivers’ symptoms of depression and anxiety were significantly reduced after participating in the program, compared to a minimal intervention in which caregivers received digital newsletters by e-mail (Blom et al., 2015).

For Black Americans, caregiving can be more complex. Black Americans have more than double the prevalence of Alzheimer’s disease and related dementias compared to non-Hispanic white Americans, which suggests a disproportionate burden of dementia caregiving on Blacks when compared to caregivers from other racial groups (Bonds Johnson, et al., 2022).

Despite this disproportionate burden of dementia caregiving within Black communities, dementia caregiver interventions are rarely culturally sensitive or culturally relevant. For example, few interventions account for caregiving networks encompassing more than one caregiver, caregiver co-residence, and pooling of financial resources that are common in the informal care provided to Black older adults (Bonds Johnson, et al., 2022).

In addition, dementia caregivers typically spend more hours providing care and report greater emotional, physical, and financial challenges. Thus, Black dementia caregivers must learn to cope with the challenges they face in societal institutions shaped by racism and discrimination while upholding their cultural values (Bonds Johnson, et al., 2022).

15.4 Measuring Caregiver Burden

One of the most popular instruments for measuring perceived caregiver burden is the Zarit Burden Interview (ZBI). It was originally composed of 29 items assessing psychological well-being, finances, relationship of the caregiver and person the person for who they are caring, and social life; it was later reduced to 22 items. This tool has been validated in caregivers of patients with dementia, schizophrenia, informal caregivers, older adults, and oncology patients (Domínguez-Vergara et al., 2023).

The questionnaire addresses areas that caregivers commonly report as problematic, such as physical health, psychological well-being, finances, and their relationship with the patient. Several short versions of the ZBI have been developed, using various methods, ranging from single-item to 18-item versions.

When comparing the various versions, the original ZBI has good utility in identifying probable depression in caregivers. The 6-item version emerged as the most optimal short version in having the least number of items yet demonstrated comparable diagnostic utility as the original 22-item version (Yu, Yap, and Liew, 2019).