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, 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 for frail, older adults creates a tremendous burden on family and society. Currently, about half of people who need help with personal care have dementia (ADI, 2013).
For many caregivers, it takes an average of two years to acknowledge their role as a caregiver. It can be difficult to see their caring role as separate from the relationship they have with the person for whom they care, whether that relationship is as a parent, a son or daughter, or a friend (NHS, 2014).
The largest proportion of caregivers is spouses, followed by children and children-in-law, mostly female. 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).
The system of informal unpaid care provided by family members is under intense 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).
The motives for becoming a caregiver of a person with dementia are diverse, influenced by, among other things, traditional gender roles, relationships, housing, socioeconomic resources, and cultural influences. A considerable proportion of dementia caregivers indicate that they had no choice but to become an informal caregiver. Common reasons for taking on the role of a caregiver are:
- The wish to protect and enhance the wellbeing of the person in need.
- A sense of obligation to repay the care received as children.
- Care as an extension of the existing caring role within a romantic relationship. (Wiegelmann et al., 2021)
Although 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, recent large, population-based studies have suggested that morbidity and mortality rates for caregivers may be lower than for non-caregivers. This may be due to the to the physiologic benefits of prosocial helping behaviors (Roth et al., 2018).
Despite the stress of caring for an older adult with dementia, informal caregiving can create a sense of personal accomplishment and gratification leading to feelings of intimacy and sharing. There can also be an increase in family cohesion and functionality and a sense of personal growth and purpose in life (Wiegelmann et al., 2021).
For family caregivers, moving a family member or spouse into an assisted living facility can create unique challenges. In the United States, residents in assisted living facilities tend to decline in function more rapidly than their peers in nursing homes. Reasons for decline include comorbidities, age, poorly trained caregivers, and lack of physical activity. Assisted living settings typically have barriers to keeping residents physically active, which can contribute to adverse events including falls and hospitalizations (Resnick et al., 2019).
Many assisted living facilities are smaller than nursing homes, have fewer staff, and have less open space for physical activity. Ambulation is discouraged because direct care workers and families fear residents will fall while ambulating. Residents also fear falls and consequently avoid physical activity (Resnick et al., 2019). In fact, there are more falls among residential care residents than adult daycare participants and nursing home residents (Harris-Kojetin et al., 2019).
Because the assisted living industry is primarily based on a pay-per-service model in which residents pay for services provided, payment is higher for residents who are more dependent, placing stress on family members (Resnick et al., 2019). Most residents pay out of pocket for assisted living and similar residential care communities, with a small percentage using Medicaid to help pay for services (Harris-Kojetin et al., 2019).
The expectations of care among residents and families are that direct care workers will complete necessary care tasks—such as assisting with bathing and dressing—and will protect residents from injury. Residents and families often become distressed if direct care workers provide encouragement, cueing, or minimal assistance, thus encouraging residents walk, dress, and bathe at their highest level. Once residents are no longer allowed or encouraged to perform an activity, they often lose the ability, motivation, and confidence to do so (Resnick et al., 2019).
Family Issues by Stages
In the Early Stage
When caring for or assisting a person in the early stage of dementia, family caregivers must begin to adjust to the needs of the person they are caring for. 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.
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 burnout. Depression, along with symptoms of burnout, poor self-rated health, highly perceived stress, and lower levels of life satisfaction are factors that may begin to affect a 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 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.
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 one. 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:
- Need for skilled care
- Family caregivers’ health
- Patient’s dementia-related behaviors
- Need for assistance
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.
Grief and Loss
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.
In a Dutch study, researchers interviewed people living with dementia to improve their understanding of the grief and losses associated with the onset of cognitive changes and what it means to be in the world as a person affected by dementia. The people living with dementia explained that it caused profound physical changes, disrupted long-standing relationships, and changed their sense of time and place (van Wijngaarden et al., 2019).
One person described the sense of having a disrupted body, explaining that she felt the need to scrutinize her body. She said she felt a loss of control over her own body.
This morning, I stood in front of the mirror and, while looking at my face, closely observing it, I thought: Nothing has really changed yet. You know, I don’t have that glazed, staring look you sometimes see in people with dementia. In contrast though, I pondered, within my head, the dementia has definitely changed everything! It’s like a kind of grey veil has fallen over your brain and I really want to clean it up. I’ll do my best, but cleaning up doesn’t seem to work. Talking about it, however, does, so I’m trying to be happy about that (van Wijngaarden et al., 2019).
Another person described the grief and loss associated with disrupted relationships. He reported feeling scrutinized by the suspicious gaze of others, drifting away from significant others, and having difficulties sharing his struggle. He said he longed to be taken seriously and missed engaging in a world of peers.
The daily communication with my partner is becoming a problem. To put it like this: If you draw two lines, her line continues on the same level, but mine deflects in a downward curve. Clearly, our communication no longer runs in two parallel lines. As a result, I tend to withdraw. I don’t really want to isolate myself, but actually that’s what I do. I also feel that, at times, I don’t have much to contribute anymore. More than before, I hesitate to ask or discuss things with her. That’s a rotten side effect of dementia (van Wijngaarden et al., 2019).
Yet another described a disrupted sense of space and time. She reported feeling disorientated in an alien place and feeling closed within a shrinking space. Trying to control a dreaded future filled her with grief and dread and she contemplated taking control of her future through euthanasia (van Wijngaarden et al., 2019).
Sometimes I’m in one of my moods, and I am worried sick about the future, not being able to organize things, occasionally taking the wrong bus or forgetting to get off, failing to remember street names, searching for words. . . But most times, I manage to handle myself. . . I try to stay active and keep doing as much as possible with the help of my iPhone and iPad (van Wijngaarden et al., 2019)
Grief can lead to physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy. It can also cause psychological symptoms such as clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities. These issues may lead to self-destructive behaviors, such as alcohol or drug abuse.
Additional losses for the person living with dementia include:
- Loss of physical strength and abilities
- Cognitive changes and increased confusion
- 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
For family caregivers, caring for a person with dementia can lead to:
- Loss of companionship and friendship
- Loss of income
- Loss of privacy and free time
- Changes in social roles
- Changes in routine
Supportive interventions to address grief should include counseling, assessment of co-morbid conditions, dementia-specific caregiver training, and development of a care plan.
If there is a need to move to a care home, this causes grief and loss both 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—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 2 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).
Strategies for Encouraging Family Involvement
When the person moves to an assisted living facility, family interactions and communication tend to be reduced due to work pressures, a family member living a long distance from the facility, and family members feeling they have a limited role in the provision of care. The loss of communication and social conversations can result in people with dementia feeling isolated and unable to express their needs (Moyle et al., 2014).
Nevertheless, family caregiving responsibilities do not end with the placement of a relative in an assisted living facility. Although direct care workers often assume responsibility for personal care tasks, families remain involved in other aspects of their relative’s, including emotional support, social engagement, help with financial management, and advocating for quality care (Gaugler et al., 2020).
Facilitating a family caregiver’s involvement is important because their well-being may influence their relative’s quality of life. Social engagement, family visits, and other types of activities can improve life satisfaction and health outcomes for assisted living residents. Reducing emotional distress and negative mental health outcomes and enhancing a family’s overall perceptions of—and relationships with—staff can have positive effects on resident outcomes (Gaugler et al., 2020).
One way to assist family members is to encourage involvement in a dementia care program—a multidisciplinary program designed to meet a resident’s individual needs. The quality and success of a dementia care program depends on a facility’s environment, philosophy of care, available services, and staff experience and training. A dementia care program:
- Allows and encourages families to visit at any time.
- Encourages family involvement in the planning of activities.
- Keeps family members informed about changes in their loved one’s condition.
- Keeps a log of resident activities to share with the family.
- Encourages residents to call and write family members and friends.
- Uses technology to keep families in touch with one another.
Family inclusion refers to creating involvement of families within a care facility, by providing family members with opportunities and resources that empower them to participate actively in their relatives’ life as well as in the care facility as a community. For family members, being involved may improve satisfaction with the care provided to residents and enriched their own wellbeing (Backhaus et al., 2020).
There are several barriers that hamper family inclusion. In an environment of staff shortages and scarce resources, family members are easily seen as a commodity or as a resource for augmenting staff. Nevertheless, staff often find it difficult to collaborate with family members and may consider them to be difficult or demanding. Instead of fearing that family members may increase their workload, professional caregivers should view them as a valuable resource for providing person-centered care (Backhaus et al., 2020).
While family members of people with dementia spend more time on activities to support resident care, family members of residents without dementia spend more time on their social and community engagement, often outside the facility. Particularly for family members of people with dementia, the tasks often go beyond solely visiting the relative. Instead, family members conduct caregiving tasks that could be considered a staff responsibility, which might be particularly burdensome for family members (Backhaus et al., 2020).
In care conferences (also known as case conferences or multidisciplinary team meetings), family members often occupy a “marginal position relative to staff.” Instead of promoting family inclusion, often care conferences are spaces that promote “expert one-way communication.” To contribute meaningfully to person-centered care, especially for people with dementia, formal care conferences should promote mutual exchange between staff and family members and should empower family members to participate as equals (Backhaus et al., 2020).
Caregiver Training and Support
Providers who care for residents with dementia need to be specifically “dementia-trained” because of the unique challenges 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. For family caregivers / informal caregivers, training and support are critical. Training introduces caregivers to resources, support, and equipment to improve health and safety. Support reduces psychological and physical strain while delaying or avoiding transition into residential care (ADI, 2015).
An example of a successful residential caregiver support program in Australia focused on the following components:
- Provide resources that help caregivers combat social isolation.
- Educate caregivers about the medical aspects of dementia.
- Explore issues regarding changes in roles and responsibilities when caring for a person with dementia.
- Educate caregivers about techniques that encourage reminiscence and orientation to the environment.
- Provide information about aphasia and how it affects communication, as well as swallowing issues.
- Provide strategies for dealing with assertive, non-assertive, and aggressive behaviors, and how to cope with criticism.
- Identify meaningful and enjoyable activities.
- Educate caregivers about how to give personal care, focusing on washing, assistance with dressing, transfers, and incontinence.
- Identify the benefits of exercise for both the caregiver and the person with dementia.
- Educate caregivers about changes in diet, food intake, food preferences, and nutritional needs of people with dementia.
- Identify and support caregiver needs including stress management and relaxation techniques.
- Provide information about available community services, including the financial costs of these services. (Birkenhäger-Gillesse et al., 2018)
In recent years, online learning has shown promise as a tool to support and educate caregivers of people with dementia. It has shown promise in reducing psychological and emotional distress for caregivers, educating caregivers about dementia and its management, enhancing caregiver’s skills, and developing social networks. Programs consist of lessons on caregiver’s needs, cognitive decline, daily tasks, behavioral changes, social activities, and “you as a caregiver.” For example, the virtual reality intervention Through the D’mentia Lens enables caregivers to see what dementia is like and how people with dementia feel (Klimova et al., 2019).
A review of several studies looking at the use of online learning to support people caring for a person with dementia found that participants were satisfied with the online programs and courses because the content reduced their perceived stress and increased their empathy. The flexibility and ease of accessibility from anywhere at any time were other factors that motivated caregivers to participate. Other benefits of e-learning support involved the personalized approach, user-friendliness, avoidance of stigmatized professional (psychiatric) help, development of a social network of informal caregivers, and cost-effectiveness (Klimova et al., 2019).
Keeping a Person’s Cultural Background in Mind
Although often overlooked, culture is an important factor that impacts 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 focus groups and for some, 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).
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, caregiving is so culturally ingrained that, when the time comes, care is provided without question. For Asian Americans, caregiving was described as just a normal thing to do (Pharr et al., 2014).