Family caregivers of people with dementia are often called the invisible second patients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.

Henry Brodaty and Marika Donkin
Prince of Wales Hospital, Sydney, Australia

All over the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. In four of the most populous states alone (Florida, California, New York, and Texas), unpaid caregivers annually provide care valued at more than $14 billion (Alzheimer’s Association, 2016a).

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. Family caregivers are often cast into the role of caregiver unexpectedly and are largely unpaid or “nearly” unpaid. Currently, about half of people who need help with personal care have dementia (ADI, 2013).

Recognizing Concerns and Issues of Family Members

For me, taking care of my own health and well-being took a nose dive as my mom’s dementia got worse. As we near the end of her life my sister and I are drained emotionally and financially, hobbies are a distant memory, friends have been neglected, and some family relationships have been damaged beyond repair. Until we have a national program to provide training, oversight, and money for caregivers, I don’t see things changing very much.

Family Caregiver, California

Caring for a person with dementia is a huge commitment and places both financial and physical strain on family caregivers. 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). For family caregivers, good care can break down quickly if caregivers fail to get enough sleep, do not take care of their own medical needs, or do not seek out support and training.

Not surprisingly, caregivers of people with dementia provide care for a longer time, on average, than caregivers of older adults with other conditions. They are more likely than caregivers of people without dementia to provide help with self-care and mobility and health or medical care. Yet half of caregivers of people with dementia indicate they have no experience performing medical/nursing tasks (Alzheimer’s Association, 2016a).

Caring for a person with dementia also means managing symptoms that caregivers of people with other diseases may not face, such as neuropsychiatric symptoms (for example, anxiety, apathy and lack of inhibition) and severe behavioral problems. Family caregivers often lack the information or resources necessary to manage the increasingly complex medication regimens for people with dementia (Alzheimer’s Association, 2016a).

In the Early Stage

In the early stage of dementia, family members are confronted with many issues, worries, and concerns and must adjust their own behavior and manage their own frustrations as they learn about the effects of dementia. They are often unaware of available dementia-care services and may find their family member’s primary care physician is 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 the dementia progresses. An adult child caregiver will be concerned about having to take over the 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 periods of time.

Early, specialized training is recommended for informal caregivers. This is an essential but often neglected component of dementia care. Training can prepare family caregivers for what lies ahead and allow them to more easily partner with healthcare providers to provide competent and compassionate care.

In the Middle Stages

In the middle stages, behavioral and psychological problems may arise, requiring complicated decisions about behavioral interventions and, perhaps, medications. Family caregivers often have to cut back on employment as the demands of caregiving increase.

As the dementia progresses from the mild to moderate stage, caregivers begin to invest more time, energy, and money, which involve exhausting tasks leading to high levels of burnout. Depression, along with symptoms of burnout, poor self-rated health, highly perceived stress, and lower levels of life satisfaction are factors that begin to affect the caregiver’s health. Family caregivers are also less likely to engage in preventive health behaviors. As a consequence, they are at risk for serious illness, increased emergency department use and hospitalization, and increased risk of mortality (Lykens et al., 2014).

Family caregivers’ cumulative stress is also associated with increased nursing home placement, institutionalization, or hospitalization of the patient with dementia. Thus, caring for a patient with dementia can undermine the health and well-being of both the patient and the caregiver (Lykens et al., 2014).

In the Late Stages

In the late stages, as people lose the ability to talk clearly, family caregivers will struggle to find new ways to communicate as their loved one uses fewer and fewer words. 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.

The demands of caregiving intensify as people with dementia approach the end of life. In the year before the person’s death, 59 percent of caregivers felt they were “on duty” 24 hours a day, and many felt that caregiving during this time was extremely stressful. One study of end-of-life care found that 72 percent of family caregivers experienced relief when the person with Alzheimer’s disease or another dementia died (Alzheimer’s Association, 2016a).

One of the most difficult issues—usually in the middle to late stages of dementia—is the decision to place a family member in residential care or skilled nursing. There are a number of reasons cited by caregivers for placement:

• Need for skilled care and assistance
• Family caregivers’ health
• Patient’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.

Once a family member has moved to a care facility, family caregivers must begin learning to navigate a complicated healthcare system. Healthcare workers can support family members by determining the preferences, abilities, and resources of each family member. Regular face-to-face meetings with family members and facility staff will help families work through difficult conflicts.

The Grief Process

I’m ashamed to say that before I began taking care of my own mother, I had very little understanding of the pressure and grief experienced by family members caring for someone with dementia. I only offered platitudes such as “make sure you walk with your wife every day”—this when the husband was slumped at the kitchen table, clearly overwhelmed and severely depressed. I just didn’t see it. Now I do.

Home Health Physical Therapist, California

The diagnosis of dementia may result in a personal crisis in which the person with dementia displays grief reactions related to the experience of actual or anticipated losses associated with the dementia diagnosis (Vroomen et al., 2013). Family members also experience grief associated with the onset of dementia. Good support following the initial diagnosis helps people adapt to the diagnosis and provides opportunities to develop coping responses.

Grief can manifest itself in physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy. Psychological symptoms associated with grief include clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse.

Losses for the person experiencing dementia may include:

• Loss of physical strength and abilities
• Increased confusion
• Loss of income and savings
• Changes in housing and personal possessions, including loss of pets
• Loss of self-sufficiency, privacy, and self-esteem
• Changes in social contacts and roles

Losses for family members can include:

• Loss of income
• Loss of privacy and free time
• Changes in social roles
• Changes in routine

In the early stage, supportive interventions to address grief should include counseling, assessment of co-morbid conditions, information about dementia, caregiver training, and development of a care plan. In later stages, a person with severe dementia may need to be moved to a care home. This is a cause of grief and loss for the person with dementia and for the caregivers. People with dementia newly admitted to an institution are often disoriented and disorganized in their new environment and feel a loss of control over their lives (Vroomen et al., 2013).

When a loved one dies, family members, and especially spouses, experience a period of acute grief that generally includes intrusive (unwanted) 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).

When a spouse dies, about 28% of surviving spouses experience major depression. This 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).