A caregiver is someone who provides assistance to a person in need. Care can be physical, financial, or emotional. Caregivers help with basic activities of daily living such as bathing, dressing, walking, and cooking, or with more complex tasks such as medication and home management. A caregiver may provide direct care or manage care from a distance and can be a family member, a neighbor, a friend, or a professional.
The onset of caring tends to emerge naturally from customary family transactions that existed before the onset of dementia. The need for care escalates over time, from support for household, financial, and social activities, to personal care, to almost constant supervision and surveillance. Important transitions include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013).
Causes of Stress for the Caregiver
Caregivers of people with dementia invest significant time, energy, and money over a long period of time. Poor self-rated health and lower levels of life satisfaction are reported by many caregivers. Caregivers’ cumulative stress is associated with increased nursing home placement of the patient with dementia (Lykens et al., 2014).
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).
Nevertheless, high levels of emotional stress can lead to denial, anger, and contribute to social withdrawal. Caregivers, overwhelmed by the demands of caring for someone with dementia can experience irritability, anxiety, and sleep disturbances. Many studies have documented a higher prevalence of depressive symptoms among caregivers, with the highest prevalence among those caring for someone with dementia (ADI, 2013).
The economic impact of caregiving is an additional stressor for caregivers. For caregivers of older people (not dementia caregivers specifically) a 1% increase in hours of care is associated with a reduction in the employment rate of caregivers by around 10% (ADI, 2013).
In a survey of American caregivers, 13% had to go from working full- to part-time, 11% had to take a less demanding job, and 11% had to give up work entirely. Cutting back or giving up on work increases caregiver strain, while hiring a paid caregiver or having additional informal support can reduce caregiver strain (ADI, 2013).
The amount of stress experienced by caregivers is associated with caregiver demographics, personality, and their perception of their role as a caregiver, their coping strategies, and relationships they have outside of their caregiving role.
Factors and Characteristics Associated with Caregiver Strain
Characteristics associated with caregiver strain
Perception and experience of caregiving role
Managing Caregiver Stress
It is possible to reduce caregiver stress with education, training, support, and respite care. These four components have been shown to decrease caregiver stress and reduce or delay the transition from home to a care home (ADI, 2013).
In a program called Resources for Enhancing Alzheimer’s Caregiver Health (REACH II), researchers targeted 5 caregiver domains (depression, burden, self-care/healthy behaviors, social support, and problem behaviors) and provided interventions to address each domain. Caregivers were provided with education, skills to manage troublesome behaviors, social support, strategies to reframe negative emotional responses, and strategies to improve health behavior and stress management. Active treatments were more effective than receiving only educational materials in reducing caregiver burden and depression (Lykens et al., 2014).
These findings reinforced those of an earlier study, which indicated that active training such as engagement of caregivers in skills training, role playing, and interactive practice were more successful in reducing caregiver burden, compared with more passive methods, such as providing information only (Lykens et al., 2014).