Information via accrediting organization American Association for Marriage and Family Therapy.
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.
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.
No two caregiving families are alike. Experiences of caregiving are shaped by:
Providing care to a husband, wife or partner often brings significant changes in relating that affect satisfaction, intimacy and conflict within the relationship. Responsibilities that were once handled by the ill spouse may have to be assumed by caregiver at a time when less energy may be available for learning new responsibilities. Difficulties arise when the ill spouse fails to recognize the need to let go of tasks or just refuses to do so. Other losses follow when activities that once provided pleasure and deepened a connection are no longer possible. Caregiving spouses/partners can begin to feel isolated and guilty about their own unmet needs.
Offspring may not agree on elder needs, what to do about them and who is responsible for care provision. Adult children often have different ways of protecting an older parent’s dignity. Some want quick action to reduce risk while others prefer a “wait and see” approach that they see as less threatening to a parent’s sense of self.
Research over decades has shown that family members are the foundation of long-term care for older adults.
Long duration caregiving, caregiving at older ages, being female, caring for an elder with behavioral or psychological symptoms of dementia and residing in the same home with a care recipient increase risk for caregiver strain and negative health effects.
Often, caregivers report:
Other things to look for include:
If you or someone you know is experiencing caregiving distress, use online resources found in this brochure to expand your knowledge and then consider talking with a qualified family therapist who can help assess your needs and tailor a plan to address your most important concerns and goals. Remember most older adults have needs and values that should inform efforts on their behalf. Most elders can express preferences and wishes for their care and it is ethically important to include them in discussions, to the best of their ability to participate.
Risks can be reduced, distress managed and satisfaction with caregiving can increase with appropriate intervention tailored to each families’ situation and resources. When seeking outside consultation, expect:
Caregiving calls us to move into areas we know little about, reach out to discover information and sources of support and grow our capacity for understanding suffering and dealing with uncertainty. Caregiving families can learn more and better ways of communicating and solving problems together. Expectations for relationship roles and responsibilities are sure to be challenged. Different viewpoints and ideas should be expected and may require outside help to resolve.
With expert and peer support, caregivers can rediscover their own needs while building resources to fulfill their commitments to valued relationships in the family.
Caregiving in the U.S. 2015 – Focused Look at Caregivers of Adults Age 50+
National Academies of Sciences, Engineering, and Medicine. 2016. Families caring for an aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
National Academy of Elder Law Attorneys
National Alliance for Caregiving
Rosalynn Carter Institute for Caregiving (caregiver intervention database)
Information via accrediting organization American Association for Marriage and Family Therapy.
