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. It can be physical, financial, or emotional in nature. Caregivers can 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 medical professional.

Caregiving is a long-term, evolving process with key transition phases. The onset of caring tends to emerge naturally from the customary family transactions, involving support given and received, that existed before the onset of dementia. Needs for care tend to escalate 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).

Causes of Stress for the Caregiver

Providing care for a person with dementia places practical, psychological, and emotional stress on caregivers. High levels of emotional stress can lead to denial, anger, and depression. The demands of caregiving can also be exhausting 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. In an analysis of European and North American 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 to care 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.

Strategies for Managing Caregiver Stress

Reducing caregiver strain is possible when the following are provided:

• Education
• Training
• Support
• Respite

These four components have been shown to decrease caregiver stress and reduce or delay the transition from home to a care home (ADI, 2013).

Caregivers can 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.