Throughout the world, family is the cornerstone of care for older people who have lost the ability to live independently. In many developed countries, the vital caring role of families and their need for support is often overlooked. In developing countries, the reliability and universality of the family care system is often overestimated (ADI, 2013, latest available).

Family caregivers provide what is referred to as “informal care.” They are often cast into the role of caregiver unexpectedly and are largely unpaid or “nearly” unpaid. The need for personal care assistance among this population creates a tremendous burden on family and society (ADI, 2013).

Providing care for one’s family or community is deeply rooted in many cultures, arising “naturally” without conscious thought. This perspective was shared by Asian American, Hispanic American, and African American focus group participants who reported seeing many examples of caregiving, not just within their own families but throughout their communities. In fact, it was so culturally ingrained to care for family that, when the time came, care was provided without question (Pharr et al., 2014).

The system of informal, unpaid care provided by family members is under pressure due to declining fertility rates and fewer young people willing to care for older adults. Changing attitudes and expectations among the young as well as increased workforce mobility mean that family members are not always living near their older adult relatives. The education of women—the majority of informal caregivers—has led to more workforce participation and less availability for informal care (ADI, 2013).

It is generally accepted that the accumulated financial, physical, and psychological stress of caring for a person with dementia may increase a caregiver’s risk of morbidity and mortality. A large, population-based study however suggested that morbidity and mortality rates for caregivers may be lower than for non-caregivers. This may be due to the to the physiological benefits of prosocial helping behaviors (Roth, et al., 2018).

Positive aspects of caregiving include feelings of meaning and self-efficacy, satisfaction, feelings of accomplishment, and improved wellbeing and quality of relationships. These positive experiences can help sustain family members in their work as caregivers (Tretteteig et al., 2017).

8.1 Family Issues by Stages

Most people with dementia, no matter what the stage, live in the community, and for approximately 75% of these individuals, care is provided by family and friends. The largest proportion of caregivers is spouses, followed by children and children-in-law, mostly female. Most caregivers of a person with dementia are middle-aged or older, female, and the child or spouse of the person with dementia. Caring for a person with dementia is time-consuming and, on average, caregivers spend 14 hours per week assisting with basic ADLs and up to 43 hours per week when more complex assistance and supervision are needed (ADI, 2013).

8.1.1 In the Early Stage

In the early stage of dementia, family members must adjust their own behaviors and manage their own frustrations as they learn (of often don’t learn) about the early effects of dementia. They may be unaware of available dementia-care services and may find their family member’s primary care physician of little help.

Spouses who care for a person with dementia may not be in good health themselves and may worry about not being able to provide good care as their spouse’s dementia progresses. An adult child may have to take over care of the parent and assume a new role in the family.

Nevertheless, caregiver burden is usually manageable in the early stages of dementia. Direct care is generally not needed, and caregivers can often leave their family member alone for short periods of time.

Early, specialized training is strongly recommended. This is an often-neglected component of dementia care. Training prepares family caregivers for what lies ahead and allows them to partner more easily with healthcare providers to provide competent and compassionate care.

Enrolling a person with mild dementia in an adult day program provides an opportunity for caregivers to learn about dementia and gain techniques for managing any challenging behaviors that might arise. It is also a place to learn about assistive equipment and things a caregiver can do to “harden” the home against falls and accidents. This area of dementia care can, among other things, encourage caregivers to install grabs bars, raise couches and chairs, lock up poisons and caustic materials, remove or lock up guns, and install remote sensors for climate control.

8.1.2 In the Middle Stages

As the dementia progresses from the mild to moderate stage, caregivers begin to invest more time, energy, and money, often involving tiring tasks leading to high levels of burnout. Depression, poor self-rated health, stress, and lower levels of life satisfaction can begin to affect the caregiver’s health. At this stage, perhaps due to a lack of time, family caregivers are also less likely to engage in preventive health behaviors.

The increased need to handle practical tasks can be a physical burden for family caregivers, especially those in poor health. Many caregivers must take over cooking and cleaning and other household chores. As the need for help increases, family members must decide whether to hire a private caregiver, which is costly. At this stage, family caregivers' cumulative stress is associated with increased nursing home placement, institutionalization, or hospitalization of the patient with dementia.

If a family member is enrolled in an adult day program, education and support are critical. Daycare programs provide needed respite for the caregiver while providing ongoing information about managing challenging behaviors, home safety measures, medication management, and techniques for managing caregiver stress.

8.1.3 In the Late Stages

In the late stages, as people lose the ability to communicate clearly, family caregivers often struggle to find new ways to understand the needs of their loved ones. Caregivers must learn to interpret facial expressions for sadness, anger, or frustration, and physical gestures such as grasping at undergarments, which may communicate the need to use the bathroom.

One of the most difficult issues—usually in the middle to late stages of dementia—is whether or not to place a family member in residential care or skilled nursing. There are a number of reasons cited by caregivers for placement:

• The need for skilled care and assistance.
• The family caregivers' health.
• The loved one’s dementia-related behaviors.

Relinquishing full-time care can cause feelings of loss, sadness, resignation, and depression for family caregivers. Paradoxically, placement of a loved one in a care facility may do little to alleviate the stress that caregivers experience.

Moving a family member to a care facility requires family caregivers to learn to navigate a complicated healthcare system. Healthcare personnel can provide support by determining the preferences, abilities, and resources of each family member. Regular face-to-face meetings with family members and facility staff can help families work through these difficult issues.

For caregivers and family members of a person in the late stage of dementia, respite and emotional support are critical. This is when stress, fatigue, and worry are at their highest point. Carefully designed activities, medication (and medical) management are crucial aspects of a person’s care. The go-to resource for most caregivers is the family doctor, who often does not have the time, interest, or knowledge to help family caregivers. Healthcare providers in a specialized adult daycare facility can have a profound impact at this stage when help and support are most needed.

8.2 The Grief Process

Physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, a lack of energy, and loss of physical strength and abilities are often related to feelings of grief. Psychological symptoms associated with grief include clinical depression, hypochondria, anxiety, insomnia, increased confusion, and the inability to get pleasure from normal daily activities. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse.

A person who receives a diagnosis of dementia can experience grief related to the actual (or anticipated) losses associated with the diagnosis. Physical and psychological changes and losses for the person with dementia can include:

• Loss of income and savings
• Loss of health insurance
• Changes in housing and personal possessions, including loss of pets
• Loss of self-sufficiency, privacy, and self-esteem
• Changes in social contacts and roles

Caregivers of people with dementia often experience intense feelings of grief and loss prior to the physical death of their loved one. The losses experienced by caregivers can build up as the disease progresses. The grieving encompasses feelings of ambiguity, loss of companionship, freedom, and control, as well as anger and guilt, but can also include psychosocial reorganization and coping (Rupp et al., 2023).

Some interventions may help manage or reduce grief reactions. Cognitive-Behavioral Therapy (CBT) programs, group formats, family therapy, mindfulness-based interventions, and new technology formats can have a positive impact on burden and caregiver grief and distress (Rupp et al., 2023).

Grief and guilt are often intensified when a loved one moves to a care home, contributing to a sense of loss for the person with dementia and for caregivers. For the person with dementia, moving to an institutional setting can be profoundly disorienting. Depression and grief are common reactions that can be addressed through education, support groups, meaningful activities, and social support.

When a loved one dies, family members—especially spouses—experience a period of acute grief that generally includes intrusive thoughts,* intense emotional distress, and withdrawal from normal daily activities. This period, along with the chronic grief that follows, may vary in length and intensity from individual to individual and often resembles clinical depression (Monk et al., 2013).

*Intrusive thoughts: unwanted, involuntary thoughts, images or ideas that can be obsessive, distressing, or upsetting.

When a spouse dies, more than a quarter of surviving spouses experience major depression. The risk of depression appears to peak during the first six months of bereavement, although depressive symptoms can be present for up to two years. Even bereaved persons with minor depression may suffer, for they have a greater likelihood of functional impairment, poorer health, more physician visits and mental health counseling, and increased use of antidepressants than do non-bereaved individuals (Monk et al., 2013).

8.3 Family, Clients, and Dementia Care Programs

Dementia care programs are multidisciplinary and multi-departmental programs designed to meet the daily, individual needs of clients. The quality and success of a dementia care program is strongly influenced by facility’s environment, philosophy of care, available services, and staff experience and training.

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

• Encourage family involvement in the planning of activities.
• Inform family members about changes in their loved one’s condition.
• Keep a log of resident activities to share with the family.
• Use technology to keep families keep in touch with one another.

The effectiveness—or even the existence—of a good dementia care program is affected by a number of issues. Inequalities in care exist in rural communities, in low-income areas, and where access to memory care specialists and a caregiver support group is limited or non-existent.

Belonging to an ethnic minority group can lead to inequalities in diagnosis and access to care. People from Black and minority ethnic groups often experience delays in receiving a diagnosis, which leads to inequalities in accessing post-diagnostic care, including anti-dementia medications (Giebel, 2020).

8.4 Caregiver Training and Support

The responsibilities of caregiving can be overwhelming, especially for spouses, family members, and friends. If spouses (or adult children) are in poor health, they may be unable to take on the burdens of fulltime caregiving. Even trained and experienced healthcare providers can find it difficult to deal day-in and day-out with responsibilities of caring for a loved one with dementia.

Support for caregivers of people with dementia includes education, cognitive-behavioral therapy, case management, general support, and respite. For the person with dementia, interventions that focus on improving cognitive and functional impairments can reduce caregiver stress (Walter and Pinquart, 2020).

Training introduces caregivers to resources, support, and equipment to improve health and safety. Education can reduce a caregiver’s psychological and physical strain while delaying or avoiding their loved one’s transition to a care home (ADI, 2015).

Caregivers are likely to need education and training in the medical aspects of dementia care. They are responsible for managing a confusing array of medications that can change each time their loved one visits the doctor or hospital. They must be able to differentiate dementia from other illnesses and understand how to manage difficult behaviors when they arise.