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. More than 83% of the care provided to older adults in the U.S. is provided by family, friends, or other unpaid caregivers. People with dementia who live in the community are more likely than older adults without dementia to rely on multiple unpaid caregivers (often family) (Alz.org, 2023a).

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, latest available).

For healthcare providers, working with family members and caregivers caring for a person with dementia takes a great deal of understanding and training. Not only must healthcare providers learn skills for working with people with dementia, but they must also learn how to communicate skills and techniques to sometimes-resistant family members and often-untrained paid caregivers. Differences in education, training, and cultural backgrounds can compound the difficulties.

Informal caregivers report challenges such as lack of support, difficulties associated with insufficient dementia knowledge, and barriers obtaining and sharing information, resulting in isolation in caregiving responsibilities. Informal caregivers also face additional challenges such as frustration, anxiety, depression, burnout, and prolonged stress (Scerbe et al., 2023).

Lack of knowledge in one or more aspects of dementia care not only affects the mental health of caregivers, but also their caregiving abilities. Dementia education can improve care management and encourage support-seeking behaviors (seeking counselling, joining discussion forums, and attending informal support groups) (Scerbe et al., 2023).

Recognizing Concerns and Issues of Family Members

For me, taking care of my own health and well-being took a nosedive as my mom’s dementia got worse. As my sister and I neared the end of our mom’s life, we were drained emotionally and financially, hobbies and vacations were a distant memory, friends had been neglected, and some family relationships were 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, Palm Beach, Florida

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, latest available). 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 access 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. Caregivers of people with dementia report providing 27 hours more care per month on average than caregivers of people without dementia. 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 (Alz.org, 2023a).

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 other behavioral problems. Family caregivers often lack the information or resources necessary to manage the increasingly complex medication regimens for people with dementia (Alz.org, 2023a).

Because family and unpaid caregivers provide major societal benefit at minimal cost to the healthcare system, often at considerable personal cost, there have been repeated calls for support services that enable continued care in the home. Interventions that enhance caregiver coping skills and management of difficult behaviors have been shown to decrease caregiver burden and improve caregiving skills and quality of life for both a caregiver and person with dementia. Caregiver behavioral interventions have been shown to decrease physical and psychological consequences such as depression, anxiety, sleep disturbance, hospitalization and mortality, and increased risk of patient institutionalization (Nichols et al., 2017).

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 may not be 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 completely neglected component of dementia care. Training prepares family caregivers for what lies ahead and allows 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 must 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. This increased burden can lead 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. Family caregivers in particular are less likely to engage in preventive health behaviors.

In the Late Stages

In the late stages, as people lose the ability to communicate clearly, family caregivers will struggle to find new ways to understand 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% of caregivers feel they were “on duty” 24 hours a day, and many report caregiving during this time is extremely stressful. One study of end-of-life care found that 72% of family caregivers experienced relief when the person with Alzheimer’s disease or another dementia died (Alz.org, 2023a).

Family caregivers’ cumulative stress is associated with increased nursing home placement, institutionalization, or hospitalization of the person with dementia. Increased impairment in both cognition and personal activities of daily living are also associated with a greater risk of nursing home admission. Compared to persons with dementia due to Alzheimer’s disease, persons with non-AD dementia, particularly Lewy body dementia, have been found to experience earlier admission to nursing homes, as well as a shorter life expectancy (Mjørud et al, 2020).

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. Reasons cited by caregivers for placement are:

• 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 mother, I had very little understanding of the 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, Tampa, Florida

Receiving a diagnosis of dementia can be difficult for the person receiving the diagnosis, as well as family and friends. There is concern related to uncertainty about the course of the disease and anticipated loss of independence. Grief can manifest in physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy.

Psychological symptoms such as depression, anxiety, insomnia, and loss of interest in normal hobbies and activities will almost certainly develop. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse. Supportive interventions to address grief and loss include counseling, assessment of co-morbid conditions, education and training, and development of a care plan.

For a person experiencing dementia, changes in mental abilities, increased confusion, and loss of physical strength and abilities can lead to grief. A person may grieve because of changes in social roles, loss of friends, and the breakdown of social networks. Other cause of grief include:

• Loss of income and savings.
• Changes in housing and personal possessions, including loss of pets.
• Loss of self-sufficiency and privacy.

Family members and caregivers may grieve due to:

• Loss of companionship
• Loss of income
• Loss of privacy and free time
• Changes in routines and social roles
• Loss of time for hobbies and social activities

There may be a great deal of grief when a person with dementia is moved to a care home and caregivers can be torn between relief and grief (van Wijngaarden et al., 2018). Nursing homes and assisted living facilities are chronically understaffed, lack privacy, usually don’t allow pets, and truly represent the last stage of a person’s life. This can cause grief and depression for the person with dementia as well as family members and friends.

The concept of “ambiguous loss” complicates grief. Ambiguous loss is a type of loss you feel when a person with dementia is physically here but may not be mentally or emotionally present in the same way as before. It can be hard to recognize this grief or know how to grieve when the abilities of the person with dementia have changed. Grief can be frozen and can put a caregiver’s life on hold. Caregiver’s must learn how to grieve and resume their regular activities, so they are able to cope as the disease progresses (Alzheimer Society, 2019).

Dementia grief reaches the highest levels when dementia progresses to moderate and severe stages. In general, grief can occur for everyone at all stages of the disease process, yet spouses often show different grieving patterns than other family caregivers. Grief is heightened at key transitional points such as the point of diagnosis, nursing home transition, or physical death. The end-of-life experience is another time when a caregiver’s dementia grief is elevated. Preparedness for death and social support can help caregivers process this grief (Rupp et al., 2023).

When a loved one dies, family members (especially spouses) can experience a period of acute grief that 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, the risk of depression peaks during the first six months of bereavement but can last up to two years. Even bereaved persons with minor depression may suffer; 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).