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.
Caring for an individual with dementia may 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).
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).
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).
Psychosocial interventions aimed at caregivers can reduce stress and illness and delay institutionalization of the person with dementia (Lee et al., 2014). Recognizing that the caregiver is part of the client can reduce caregiver stress improve outcomes. This is especially true for caregivers of clients with dementia.
Reducing Caregiver Stress
Things to do
Things to avoid
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).
Adult day care programs can play a key role by providing information about caregiver burden as well as techniques for addressing behavioral challenges. Respite and support services can provide relief, reduce caregiver burden, and increase caregivers’ motivation for their role as a caregiver. These benefits:
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 and her lack of knowledge, 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 go to a caregiver support group. She agrees to take her husband to adult daycare but refuses to attend a support group. When she arrives to drop Jim off at the adult daycare center, Barbara meets Sana, one of the activity aides at the center.
Sana just started a new job as an activities aide. She is asked to greet a new client named Barbara who is dropping off her husband Jim for the day. 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?
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.
Dementia care programs are multidisciplinary and multi-departmental programs designed to meet the daily individual needs of clients with dementia and their families. A well-designed dementia care program:
A dementia care consultant discussing resources with a client and her son. Source: AHRQ, 2015.
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).
Another innovative 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).
Yet 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 used text and videos, exercises, and homework, with an evaluation at the start and end of each session. The program covered the following topics: 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 sent their homework to a coach and the coach sent feedback to caregivers. Participants were automatically reminded to start with a new lesson or to send in their homework if they were not active for a fixed period of time. 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).
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.