Throughout the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. 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).
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. Currently, about half of people who need help with personal care have dementia (ADI, 2013).
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 nearby 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).
The majority of people with dementia 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. The typical profile of a dementia caregiver is a middle-aged or older female child or spouse of the person with dementia (Brodaty & Donkin, 2009). 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).
In the early stage of dementia, family members must begin to adjust their own behaviors and manage their own frustrations as they learn about the early effects of dementia. They are often 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 the 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 periods of time.
Early, specialized training is recommended. This is an essential but often neglected component of dementia care. Training can prepare family caregivers for what lies ahead and allow them to partner more easily with healthcare providers to provide competent and compassionate care.
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, 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. At this stage, perhaps due to a lack of time, 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).
The increased need to handle practical tasks can be a physical burden for family caregivers, especially those in poor health. Many of these caregivers do all the cooking and cleaning and take care of the laundry (Tretteteig et al., 2017). As the need for help increases, family members must decide whether to hire a private caregiver, which can be costly.
At this stage, family caregivers’ cumulative stress is 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, as people lose the ability to communicate clearly, family caregivers will 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 the decision to place a family member in residential care or skilled nursing. There are a number of reasons cited by caregivers for placement:
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 learn 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 diagnosis of dementia may cause a personal crisis in which the person with dementia experiences grief related to the actual or anticipated losses associated with the diagnosis (Vroomen et al., 2013). Good support following the initial diagnosis helps people adapt 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 with dementia include:
Losses for family members and caregivers include:
Supportive interventions to address grief should include counseling, assessment of co-morbid conditions, information about dementia, caregiver training, and development of a care plan. If there is a need to move to a care home, this causes grief and loss for the person with dementia and for caregivers. People with dementia newly admitted to an institution are often disoriented 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 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, 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).
When the person enters long-term care, family interactions and communication tend to be reduced. This is particularly the case when work pressures are present, when the family member lives a long distance from the care facility, and when family members feel they have a limited role in the provision of care. The loss of in-depth communication, as well as social conversations, can result in people with dementia feeling socially isolated and unable to express their needs (Moyle et al., 2104).
One way to improve this situation is to encourage family members to become involved in a facility’s dementia care program. 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 dementia care program:
A dementia care program should include cues and themes to help clients remain oriented to their environment, electronic door security for safety, comfortable and familiar furniture, specialized foods and beverages, and regular personalized group and individual activities.
Providers who care for residents with dementia need to be specifically “dementia-trained” because of the unique challenge this group presents. Training should include knowledge of disease trajectory, symptoms, approaches to care, goals of care, palliative care measures, end of life issues, signs of impending death for persons with dementia, and how to interact with residents and families.
Tilly and Fok, 2007
The responsibilities of caregiving can be overwhelming, especially for spouses, family members, and friends. If spouses (and even adult children) are in poor health they may be unable to take on the burdens of fulltime caregiving. Even trained healthcare providers can find it difficult to deal with demented patients day in and day out.
To be successful, caregivers must be able to differentiate dementia from other illnesses and understand how to manage difficult behaviors should they arise. Healthcare providers must be able to take a deep breath, slow down, listen, and find effective ways to communicate.
For both professional and family caregivers, training and education are critical. Training introduces caregivers to resources, support, and equipment to improve health and safety. Education reduces psychological and physical strain while delaying or avoiding transition into care homes (ADI, 2015).
Culture has an impact on the family caregiving experience. In research involving feedback from 35 caregivers representing four groups (African American, Asian American, Hispanic American, and European American) there were significant differences in the cultural values that shaped the caregiver experience. Caregiving was seen as “right and correct” by all of the focus groups. However, for some of the groups, caregiving was an expected part of life that was passed down from generation to generation. In fact, caregiving was so embedded in the life experience for some of the groups that the decision to care or not to care was irrelevant; caregiving was just something that was done without question (Pharr et al., 2014).
To provide care for one’s family or community was deeply rooted in the culture, 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. For Asian Americans, caregiving was described as just a normal thing to do (Pharr et al., 2014).