In the United States, nearly 16 million caregivers provide almost 18 billion hours of unpaid care to people with Alzheimer’s and other dementias. Significantly, 85% of caregivers for elders in the United States are family members. Dementia profoundly affects these caregivers, who bear its emotional, physical, and financial burdens (Kahn et al., 2016).
Caregiving can be especially difficult for spouses, family members, and friends who may be in poor health and unable to take on the burdens of fulltime caregiving. Even trained healthcare providers can find it difficult to deal day in and day out with clients who have dementia.
Types and Causes of Stress
Although most caregivers are positive about the experience of caregiving, it is challenging to provide 24-hour care for a person with dementia. Thus, many caregivers suffer from stress and depression. A review of 37 studies on health consequences of being caregivers to family members with dementia found a majority of caregivers were over 60 years old and living in a state similar to chronic stress (Kabir et al., 2020).
Many spousal caregivers have health and well-being problems of their own, either pre-existing or arising from the role of caregiving activities, e.g. due to the tasks of caring and the distress associated with the role. Stress of a family caregiver may even reach a point that the person cared for may be transferred to a nursing home (Kabir et al., 2020).
Caregivers, especially those who are highly stressed, are at risk of depression and anxiety due to their caregiving role and related responsibilities. Many family caregivers report being highly burdened and having depressive symptoms. Depression may remain even after institutionalization or death of the care recipient. The intensity of caregiving is reported to be inversely related to the caregiver’s quality of life. It can also cause a sense of isolation and loneliness (Kabir et al., 2020).
Did You Know. . .
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 however have 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, Brown, Rhodes, and Haley, 2018).
Caring for an individual with dementia may be more stressful than caring for older adults with other serious disabilities. Research has identified associations between symptoms of dementia and reduced caregiver mental health, including anger, burden, anxiety, depression, guilt, and worry (Trapp et al., 2015).
Informal caregivers generally spend between five and 20 hours per day taking care of family members with dementia. Informal caregivers, like formal caregivers, also suffer from a gradually increasing physical, mental, and economic burden (Klimova et al., 2019b).
The term caregiver burden is often used to describe this phenomenon, which is defined as the degree to which a caregiver’s emotional or physical health, social life or financial status has suffered as a result of caring for their relative. Caregiver burden increases the risk of depression and anxiety disorder, and informal caregivers of people with dementia living at home experience care as more burdensome compared to informal caregivers of recently institutionalized people with dementia (Tretteteig et al., 2017).
How Stress Manifests Itself
For caregivers of people with dementia, stress can manifest in many ways. Caregivers may experience higher levels of psychiatric symptoms, depressive and anxiety disorders, poorer immune function, and even a higher death risk compared to non-caregivers or the general population (Blom et al., 2015).
Physical health problems related to caregiving, such as hypertension, cardiovascular disease, and sleep problems are also common. Social functioning problems include relationship challenges, greater family dysfunction, feelings of isolation, and inadequate social support. Health-related quality of life has been shown to be reduced in dementia caregivers (Trapp et al., 2015).
Family members can also become victims of stigma and may experience feelings of shame about the disease. The feeling of stigma experienced by clients and caregivers is an important and potentially modifiable contributor to caregiver burden (Kahn et al., 2016).
Female spousal caregivers may suffer more stigma, as well as burden, because studies have suggested that caring for men with dementia is more arduous. Men with dementia tend to have more behavioral symptoms, such as disinhibition, aggression, and sexual inappropriateness, than women with dementia. These behaviors may be particularly stressful or embarrassing for caregivers and can increase their feelings of stress (Kahn et al., 2016).
Strategies to Reduce Caregiver Stress
In the early stage of dementia, family caregivers may not use healthcare or social services, which can provide early support and training. Understanding how to navigate the healthcare system, getting emotional support, and learning coping strategies can significantly reduce caregiver stress. Adopting a person-centered approach can help family caregivers deal with behavioral and cognitive changes and reduce a caregiver’s sense of vulnerability and isolation (Kabir et al., 2020).
Did You Know. . .
Dementia patients have higher rates of behavioral symptoms and mortality when cared for by families who are stressed, use emotion-based coping (e.g., wishing the disease would go away), or negative communication strategies. (Gitlin & Vause Earland, 2010)
Recognizing that the caregiver is also a client can reduce caregiver stress improve outcomes—especially for caregivers of family members with dementia. Supporting and training caregivers can reduce caregiver illness and delay institutionalization.
Providing caregivers with the financial and emotional support needed to care for a family member with dementia has been shown to reduce caregiver stress. E-learning, especially web-based courses, provides a new form of healthcare learning, counselling, and assistance. It allows learners to study at their own tempo and enables greater access to personalized learning. To be effective, e-learning courses should be designed to meet the learner’s needs in national, social, and cultural contexts (Klimova et al., 2019b).
Reducing Caregiver Stress
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Despite the difficulties of caring for a person with dementia, many caregivers report a variety of positive experiences related to caregiving and exhibit little distress. Resilience, effective coping, and adaptation when faced with loss, hardship, or adversity have been identified as protective factors against caregiver stress. Similarly, optimism—a general positive outlook on life—has been associated with improved dementia caregiver mental health (Trapp et al., 2015).
The Role of Specialized Adult Day Care
Adult day care programs can play a key role in reducing caregiver burden by providing techniques for addressing behavioral challenges. These programs offer respite and support services, which can provide relief, reduce caregiver burden, and increase caregivers’ motivation for their role as a caregiver. Adult day care programs provide these benefits:
- Facilitate separation time, giving family caregivers time for undisturbed work, rest, or other pursuits
- Reduce behavioral problems and the need for assistance with ADLs
- Reduce care demands, stress, and depression as well as increase wellbeing
- Increase motivation for care and postponement of the need for residential care by offering information and support regarding dementia-related topics (Tretteteig et al., 2017)
Barbara and Jim
Barbara cares for her husband Jim 24/7 at home with very little help. She refuses to hire a caregiver and belittles her sister when she tries to help. Barbara is good at the medical side of caregiving but not so good at the emotional side. She is desperately in need of education, training, and respite. Barbara is in denial of her husband’s dementia as well as her lack of knowledge. Her short temper, and her unwillingness to seek help has created a great deal of stress and, at times, abusive behavior toward Jim.
Friends and family have recommended that Barbara enroll her husband in adult daycare and that she attend a caregiver support group. She agrees to take her husband to adult daycare but refuses to attend a support group. When Barbara arrives to drop Jim off at the adult daycare center, Barbara meets Sana, the activities director at the center.
Sana just started a new job as an activity’s director. She notes that Jim is cooperative and friendly but Barbara seems stressed out. Sana notices that Barbara is impatient with her husband and raises her voice in frustration when he doesn’t get out of the car quickly enough. As soon as Jim is in Sana’s hands, Barbara hops back into her car, waves, and speeds off.
Sana walks with Jim into the day care center and offers him a comfortable chair. When he sits down he turns to Sana and says urgently “Help me—she’s trying to kill me!” This startles Sana and she’s not sure what to do. Her first thought is that he has dementia and is probably just being paranoid. People with dementia have memory problems so maybe he doesn’t really remember what happened 5 minutes ago. What should Sana do?
- Pat Jim on the back and tell him you understand.
- Wait until Barbara returns and tell her what Jim said.
- Share this information with her supervisor.
- Do nothing other than reassure Jim that he’s safe and nothing bad will happen to him.
Sana remembers from her orientation that she is a mandated reporter, but since she is new to the job, she decides to discuss the situation with her supervisor first. Her supervisor is familiar with Jim’s situation and tells Sana that APS is already involved.
The Role of Dementia Care Programs
Dementia care programs are multidisciplinary and multi-departmental programs designed to meet the daily individual needs of clients with dementia and their families. Friends and family members are encouraged to participate in a dementia care program. The quality and success of a dementia care program is influenced by the environment of a care facility and by the facility’s philosophy of care, services available, and staff experience and training. They usually include support groups for family members, friends, and caregivers.
A well-designed dementia care program:
- Allows and encourages families to visit at any time
- Plans activities that include family members
- Encourages family involvement in the planning of activities
- Informs family members about changes in their loved one’s condition
- Keeps a log of client activities to share with the family
- Uses technology to keep families in touch with one another
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.
The effectiveness or even the existence of a good dementia care program is affected by several factors. Inequalities in care exist in rural communities, where access to memory care specialists, adult day care, and caregiver support groups is limited or absent. People from Black and minority ethnic groups often experience delays in receiving a diagnosis, which leads to inequalities in accessing post-diagnostic care (Giebel, 2020), support services, and care programs.
A dementia care consultant discussing resources with a client and her son. Source: AHRQ, 2015. From https://innovations.ahrq.gov/node/8291
An innovative program in North Dakota called the Dementia Care Services Program trains consultants throughout the state to support individuals who care for people with dementia, offering emotional support, education, and referrals to local agencies. The consultants work with the caregivers to develop a care plan that addresses key problems. They typically speak with the caregivers three times during the first six months and remain available for as long as is needed (AHRQ, 2015a).
Participating caregivers report that the program has helped them feel more empowered, which in turn has led to reduced need for costly medical services and placements in long-term care facilities. These reductions have generated an estimated $40 million in savings in North Dakota, primarily due to the reductions in the likelihood of long-term care use (AHRQ, 2015a).
When a Care Plan Fails
The care plan provides a road map for the care of an individual client. It must be flexible enough to reflect a person’s changing needs, care goals, and end-of-life desires. Ideally, a care plan is structured with input from family members or someone who knows the person well, but sometimes this is not possible, and the care plan is completed by a medical professional who knows little about the person’s needs and preferences.
If the care plan is not regularly updated, it will fail to reflect and respect a person’s needs as their condition declines. Some of the issues that contribute to the failure of a care plan as a living, changing reflection of a person’s changing needs include:
- Poor communication (staff, caregivers, and family members)
- Failure to take into account cultural and language differences
- Inadequate training and high staff turnover
- Lack of regular care plan meetings
- Inconsistent assessment of a person’s physical condition
- Failure to identify abrupt physical changes caused by inconsistent medication management
- Failure to identify abuse and neglect
Family members and caregivers must be on the lookout for signs that the care plan is not being followed. Some signs—such as bedsores—are obvious while others, such as malnutrition, lack of meaningful activities, lack of exercise, and verbal abuse are less obvious (and less provable).
The Role of Collaborative Care
A program established by Indiana University’s Center for Aging Research, Healthy Aging Brain Center, uses a team-based care model to treat clients with dementia and support their caregivers. A multidisciplinary team conducts an initial diagnostic assessment, holds a family conference to discuss the diagnosis and develop an individualized care plan, and provides ongoing clinic- and telephone-based monitoring, care coordination, and support. The team also regularly collaborates with primary care providers to help them better manage their dementia patients’ health problems. The model has improved health outcomes for patients with dementia, including reducing emergency department visits, inpatient use, readmissions, and medication problems, and improving blood sugar and cholesterol control (AHRQ, 2015b).
Mastery over Dementia
Another innovative caregiver support program, Mastery over Dementia, looked at the effectiveness of internet-based training to reduce anxiety and depression among family members caring for a person with dementia. The results demonstrated that caregivers’ symptoms of depression and anxiety were significantly reduced after participating in the Mastery over Dementia program, compared to a minimal intervention in which caregivers received digital newsletters by e-mail (Blom et al., 2015).
The internet program consists of 8 lessons and a booster session with the guidance of a coach monitoring the progress of participants and evaluating the homework. Each lesson has the same structure and uses text and videos, exercises, and homework, with an evaluation at the start and end of each session. The program covers: coping with behavioral problems (problem solving); relaxation; arranging help from others; changing non-helping thoughts into helping thoughts; and communication with others (Blom et al., 2015).
After every lesson, participants send their homework to a coach and the coach sends feedback to caregivers. All participants in this study received feedback from the same coach, a psychologist employed by a healthcare agency with additional training in cognitive behavioral therapy and experience in the field of dementia (Blom et al., 2015).
For family caregivers themselves, internet support may have several advantages compared to face-to-face support. Caregivers can participate at the time that is suitable for them; they do not have to travel to a healthcare professional, which saves time; and support may be easier to accept because of the stigma still associated with seeking help from a mental healthcare provider (Blom et al., 2015).
Zarit Burden Inventory Scale
The Zarit Burden Interview (ZBI) is a scale used to measure caregiver burden. It is a self-administered, 22-item instrument that measures caregiver perceptions of the burden of providing care. The questionnaire addresses areas that caregivers commonly report as problematic, such as physical health, psychological well-being, finances, and their relationship with the patient. Responses to each item are structured on a five-point Likert scale ranging from 0 (never) to 4 (nearly always), with a total possible score of 0 to 88. Higher scores indicate an increased caregiver burden (Tsai et al., 2015). The ZBI Short Form was introduced in 2001 to create Short (12 items) and Screening (4 items) versions, making interviews easier to administer yet retaining results similar to that of the full version.