Increasingly, family, friends and neighbors are called to engage with elders who are experiencing difficulties performing the activities necessary for independent functioning. Eldercare is the term for unpaid, complex caregiving extending across multiple settings including home, hospital, assisted living, rehabilitation, nursing home and hospice. Care runs the gamut from providing emotional support to monitoring symptoms, medication management, financial tasks, coordinating daily personal care and healthcare advocacy. Many times it includes acting as a surrogate decision maker in end of life care. Both same generation (spouse/partners, siblings) and next generation (offspring, in-laws, step-children) caregivers fulfill this mission. Caregivers may reside with the care recipient or coordinate care from a distance.
Estimates are that 7 out of 10 Americans over the age of 65 will, at some point, need assistance due to limitations in physical or cognitive abilities. While 45% of 65 -69 year olds are fully able and independent in self-care, 96% of over 90 year olds require assistance. The fastest growing age group in the U.S. is 80 years and older.
Research over decades has shown that family members are the foundation of long-term care for older adults. Almost 90% of eldercare is done by family and not paid professionals. 60% of family caregivers are women and 40% men. The benefits and costs of caregiving within family relationships are understudied but research confirms that individuals providing the majority of care for a dependent elder, the so-called primary caregiver, are at increased risk for psychological and physical strain which can lead to declines in health and well-being without intervention. Up to 30% of caregivers report no strain and find satisfaction in their work which has the potential to increase closeness with a loved one. Many caregivers also report learning new knowledge and skills to care for themselves and others.
The intensity and length of caregiving varies by illness with Alzheimer Disease and related dementias creating the need for care over many years while stroke or early stage cancer may require a rapid response over a shorter period. Lung disease or heart failure may require episodes of intense care followed by periods of stable function and reduced need for assistance. Our fragmented healthcare systems expect caregivers to engage in care coordination and medical and nursing tasks that once were performed by licensed health care professionals. They do so with minimal training, supervision and support. Family caregivers manage to succeed even when support from a team of concerned others and professionals is lacking. But family caregiver health risks are real and most closely linked to how caregivers feel about caregiving and less related to how much and what kind of care they are providing. Lack of perceived choice and feeling that demands outstrip one's knowledge and ability lead to strain.
Health risks experienced by caregivers who feel strained
- Increased risk of experiencing significant depression and anxiety
- Increased physical health problems
- Strained spouse caregivers may experience increased risk of dying from all causes, but especially heart attack and stroke
- Lower resistance to infection and slower healing of wounds
- Reduced ability to manage negative emotions in self and others
- Caregiver loss of self and burnout
In addition to health risks, family caregivers may experience financial strain associated with out-of-pocket expenses and reduced ability to meet employment commitments due to demands of caregiving. Current public policy fails to provide most caregivers with an option for paid leave and the Family and Medical Leave Act does not authorize unpaid leave to in-laws, siblings, step-children etc.