Caregiving is the provision of extraordinary care, exceeding the bounds of what is normative or usual in family relationships. It typically involves a significant expenditure of time, energy, and money over potentially long periods of time; it involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting.
Richard Schulz and Lynn Martire
A caregiver is someone who provides assistance to a person in need, which can be physical, financial, or emotional in nature. Caregivers help with basic activities of daily living such as bathing, dressing, walking, and cooking, and 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 medical professional.
Caregiving is an evolving process with key transition phases. The onset of caring tends to emerge naturally from the customary family transactions that existed before the onset of dementia. Needs for care tend to increase over time, from increased support for household, financial, and social activities, to personal care, to what for some is almost constant supervision and surveillance. Important transitions include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013).
Whether paid or unpaid, most caregivers across most (if not all) cultures are women. Women are already likely to be relatively disadvantaged with respect to education, career opportunities, income, assets and (in older age) pension entitlements. Taking on caring responsibilities for a person with dementia can lead to social isolation, cutting back or stopping work, and risks to physical and mental health (ADI, 2015).
Causes of Stress for the Caregiver
Providing care for a person with dementia places practical, psychological, and emotional stress on caregivers, which can lead to denial, anger, and depression. 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. In an analysis of survey data conducted by the Organization for Economic Co-operation and Development (OECD) of caregivers of older people (not dementia caregivers specifically) a 1% increase in hours of care was associated with a reduction in the employment rate of caregivers by around 10% (ADI, 2013).
In a survey of American caregivers conducted by the Alzheimer’s Association, 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 is associated with higher caregiver strain, while strain was reduced by hiring a paid caregiver, or having additional informal support (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
Spousal caregivers, particularly those of younger people with dementia
Living with the care recipient
Low incomes or financial strain
High level of neuroticism
High expressed emotion
Perception and experience of caregiving role
A low sense of confidence by the caregiver in their role
High “role captivity”—caregivers feeling trapped in their role
Emotion-based or confrontive coping strategies
Type and severity of dementia
Behavioral issues such as apathy, irritability, anxiety, depression, delusions
Intimacy—poor relationship quality
Low levels of past and current intimacy
Strategies for Managing Caregiver Stress
Reducing caregiver strain is possible when the caregiver receives education, training, support, and respite. These four components have been shown to decrease caregiver stress and reduce or delay the transition from home to a care facility (ADI, 2013). Caregivers can also reduce their stress by paying attention to their own health. This means getting enough sleep, eating properly, seeing their own doctors, and sharing their feelings about their caregiving duties with co-workers, family, and friends.
Adult daycare centers offer respite and support services and can provide relief for family caregivers, reduce caregiver burden, and increase caregiver motivation. A primary goal is to develop knowledge and skills in dementia care and prevent early institutional placement (Tretteteig et al., 2017). Adult daycare centers:
- Provide separation time, giving family caregivers time that can be used for undisturbed work, rest, or other pursuits.
- Reduce behavioral problems and the need for assistance with ADLs, although research on these effects is largely anecdotal.
- Reduce care demands, stress, and depression as well as increase wellbeing.
- Increase motivation for care and postponement of residential placement by offering information and support about dementia-related topics (Tretteteig et al., 2017).
Addressing Caregiver Stress
Reducing caregiver stress
Things to avoid
Join a support group or see a counselor to discuss your feelings.
Set limits on caregiving time and responsibility.
Become an educated caregiver.
Discuss your situation with your employer.
Accept changes as they occur.
Make legal and financial plans.
Take regular breaks (respite).
Seek out daycare services.
Don’t isolate yourself.
Don’t try to be all things to all people.
Don’t expect to have all the answers.
Don’t deny your own fears about dementia and aging.