Sample Research Data on Caregiving

Prepared by the Staff of the GRCC Older Learner Center

September 25, 2001

Scope of Caregiving

·        As the American population continues to age, the number of older persons with health impairments and associated dependencies grows.  Consequently, the ranks of family caregivers whose assistance enables their elderly relative to live in the community (i.e. - outside of nursing homes) will increase as well.           Aneshensel, et. al., 1995.

·         Some 8.5 million people over age 70 have limitations either in activities of daily living (ADLs) or instrumental activities of daily living (IADLs).  By 2030, some 21 million elderly people may need help with activity limitations.                National Academy of an Aging Society, 2000.

·        Several demographic trends will have an adverse effect on caregiving families:  (1) dramatic increases in single-parent families; (2) lowered birth rates resulting in fewer adult children available to care for aging parents; (3) substantial increases in women entering the paid workforce resulting in more conflicts between work and caregiving responsibilities; (4) adult daughters delaying childbearing which creates the potential conflict between child care and elder care responsibilities; and (5) economic pressures for families who care for elders with higher costs associated with caregiving and stagnant or declining family incomes associated with economic slowdowns.                                                          Toseland, et. al., 1995.

Family Burdens: Informal Care

·        A wide range of research has shown that the household is the key element in the organization of care for the chronically ill and impaired elderly.  Families, organized as households, provide 80 to 90 percent of the medical and personal care required by the elderly.  This is true even for the severely impaired, older adults whose functional limitations and care needs are virtually identical to those of the institutionalized, nursing home population.                                            Albert, 2000.

·        Most families undertake major sacrifices to provide care.                                Kropf, 2000.

·         Families continue to provide care even where formal services are used.         Fischer and Eustis, 1994.

·        Caregiving families with the greatest risk for negative outcomes are those having poor communication skills, limited resources, many demands on their time and resources, suppressed or open conflicts, poor parent-child relationships, and high resistance to change.                                                                                      Toseland, et. al., 1995.

·        89% of adult children with dependent, cognitively impaired parents and 76% of those with cognitively intact parents report that they would not be willing to care for parents in their home even if they were paid to do so.                              England, 2001.

Formal Care: In Home

·         Most elderly who receive care don not use formal services.  Less than 10% of caregivers use paid services, and formal care is viewed as the last resort.  When family caregivers do approach formal service providers, they tend to be very selective and modest in their service requests, often requesting far less than professionals would have recommended.                                                         Fischer and Eustis, 1994.

Female Caregivers

·         Most family caregivers are women.  This role has been termed the “unexpected career” since the lives of caregivers can be altered dramatically by the responsibilities and impact of care provision.                                                    Kropf, 2000.

·        Women with older children and those who had been married longer had parents with greater impairment.  This is why the recent AARP study of Baby Boomers did not reveal as much stress as studies of older caregivers.                         Stephens, 2001.

·         Women help with a broader range of tasks than men and spend more hours providing care.                                                                                                  Laditka and Laditka, 2001.

·         Women’s predominance in caregiving results from the societal construction of gender, traditional family values, and societal constructs including economic arrangements.                                                                                                    Laditka and Laditka, 2001.

·         The majority of care is provided either by a spouse or an adult child.              Kropf, 2000.

Caregiving Spouses

• Even though caregiving spouses tend to be older and in poorer health, they typically provide care for longer periods, in more physically demanding situations, and with fewer supports than other family caregivers.  In addition, they typically choose not to ask for help from other family members, and are highly resistant to the idea of institutionalizing their husband or wife.                      England, 2001.

• Elderly spouses strained by caring for an ailing husband or wife were 63% more likely to die than other spouses according to the Journal of the American Medical Association.  The spouses who needed care suffered from such ailments as arthritis, congestive heart failure, strokes, and Alzheimer’s disease.  The strained caregivers died of such things as heart diseases, stroke, cancer, pneumonia and kidney failure.                                                                                                  Coleman, 1999.

Caregiving Daughters

·        Daughters are less likely to seek formal services for their parents than sons due to internalized expectations.                                                                                 Laditka and Laditka, 2001.

·        Caregiving daughters often feel that they are missing important events in their children’s and spouses lives, and they may even be conflicted about whose life and care needs should be their priority.                                                            Toseland, et. al., 1995.

Inter Role Conflict: Women

·         Caregivers often experience conflict arising from their attempts to balance the demands of the caregiver role and the demands of other social roles.  Inter role conflict is especially relevant for adult daughters who make up a significant percentage of caregivers for elderly relatives.  Their other roles are typically mother, wife, and employee, hence Elaine Brody’s term, “Women in the Middle.”  Stephens, et. al., 2001

·        Almost all (96%) of the women studied indicated that they experienced some conflict among their four roles – caregiver, mother, wife, and employee, and the majority of these women reported the most conflict they experienced involved their parent care role.                                                                                     Stephens, et. al., 2001

Husband Caregivers

·         66% of husbands in an important study reported strain from a family caregiving situation.  These husbands reported disruptions in vacation plans, family privacy, time spent with wives and children, and ability to work on projects around the house.  The spouses of primary caregivers are at risk for emotional burdens and are likely to perceive caregiving as having a negative impact on family relationships.                                                                                                  Toseland, 1995.

Caregiving Sons

·         Sons provide less intensive and more intermittent care than daughters.          Laditka and Laditka, 2001.

·         Sons tend to withdraw from care as parents become more disabled.                     Laditka and Laditka, 2001.

Race and Ethnicity in Caregiving

·         As of 2000, only two studies are known to have investigated the relationship between race and caregiving rewards.  They showed that African American caregivers reported higher levels of rewards than white caregivers.  And African American caregiving women reported a lower level of parent stress than White women caregivers reported.                                                                               White, et. al., 2000.

·         African American caregivers are more likely than White caregivers to report that caregiving is an expected experience and that caregiving responsibilities are less of an intrusion in their lives.  African American families generally accept that family members should care for an aging relative.                                                   White, et. al., 2000.

·         Contrary to some expectations, there is no significant difference by race for depressive symptomatology in the most recent study of caregivers by race, despite African Americans reporting less stress and more rewards for parent care.        White, et. al., 2000.

·         Latino networks are likely to be larger, composed of more multigenerational households, extended family, and non-kin “family,” including personal care workers.  But these larger networks also lead to greater exposure to other stressors with the likelihood of receiving support from the network over time being unclear at this time.                                                                                                        Aranda and Knight, 2000.

·         Latino caregivers are as stressed as are Anglo caregivers.                                   Aranda and Knight, 2000.

·        Rates of functional dependency are higher for Latinos.                                   Aranda and Knight, 2000.

Caregiving Stress and Strain

• Caregiving can have rewards but typically includes many demands.                Kropf, 2000.

• Caregiving strain can be categorized into (1) financial, (2) physical, and (3) emotional.                                                                                                           Kropf, 2000.

Financial Strain

• Financial stain from the actual expenses of caregiving for medications, or gas to take an elder to the doctor.  Financial strain also occurs from “opportunity cost of care” – the things someone gives up to become a caregiver:  daughter who quits a job and thereby looses her salary; reduces hours in paid employment; or declines job promotion or advancement opportunities.  This is particularly true for women caregivers.                                                                                                          Kropf, 2000.

Employment and Caregiving

• The National Center for Women and Aging at Brandeis University and the National Alliance for Caregiving found that 2/3 of people who act as caregivers had to pass up such gains as promotions, pay raises, training opportunities and pension benefits.                                                                                               “Caring for Elderly Can Hurt Careers,” 1999.

• Among caregivers who spent more than eight hours or more a week providing unpaid care, the average loss over a lifetime was $659, 139 in wages, pension and Social Security benefits.                                                                                   “Caring for Elderly Can Hurt Careers,” 1999.

Physical Strain in Caregiving

• Physical exertion is another focus of caregiver stress.  Physically stressed caregiving activities (assisting in toileting, bathing, and transfer) can result in physical injury at a time when the caregiver is experiencing physical limitations themselves.  For example, a 65-year old providing care to an 88-year old mother is a clear example.  In addition, multiple demands on a caregiver’s time contribute to physical strain.  And the strain of trying to juggle responsibilities becomes exhausting and physically draining with little or no time for adequate rest, exercising, or eating balanced meals.                                                                      Kropf, 2000.

Psychological Stress in Caregiving

• Research has clearly shown that there is a relationship between providing care for an impaired elderly relative and depressive symptomatology.                            White, et. al., 2000.

• There is widespread research evidence indicating that the stress of providing long-term in-home care for impaired older persons is associated with compromised mental health functioning.  Family caregivers are more depressed than age-matched controls, and report emotional strain in terms of higher levels of depression, anger, and anxiety.                                                                             Whitlatch, et. al., 2001.

• About 1/3 of all adult children show signs of clinical depression after 1 year of caregiving.                                                                                                       Toseland, et. al., 1995.

Stages of Caregiving

• Caregiving typically encompasses multiple stages: (1) preparation for and acquisition of the caregiver role; (2) enactment of the care-related tasks and responsibilities within the home and possibly within a formal institution; and (3) disengagement from caregiving, which often entails bereavement, recovery, and social reintegration.  All of these combined are labeled a “caregiving career.”   Aneshensel, et. al., 1995.

Nursing Home Placement and Caregiving

• Nursing home placements are normally the option of last resort.  Placement typically occurs only when the elder’s health declines dramatically, or when the caregiver’s capacity to render care ceases.                                                        Albert, 2000.

• Family caregivers who have recently placed a loved one in an institution report relatively high levels of depression, anger, and anxiety and many continue to experience these negative consequences up to three years after the placement of a relative.                                                                                                          Whitlatch, 2001.

Education and Caregiving

• Effective interventions to positively impact caregiving families have focused on: (1) education programs to impart basic caregiver information; (2) community-based services to alleviate the demands of caregiving; (3) psychoeducational support groups to facilitate adaptation among family caregivers; (4) family counseling/therapy to resolve serious family conflicts or problems; and (5) policies to address the concerns of caregiving families at the societal level.  Toseland, et. al., 1995.

• Priority learning needs for caregivers were in: relating; mastery of caregiving; information about life processes; how to access resources for parent care; and freedom from threat of harm.                                                                          England, 2001.

• Certain programs and services are particularly helpful to caregivers:          Education: providing caregivers with information about caring for an older persons; information on the normal aging process; medical information; community resources data; and how to interact with professional and medical staff.                                                                                                                Support groups: give caregivers a place to socialize with others, vent feelings, and get away from providing care for a few hours.                                                  Kropf, 2000.

Unmet Needs

• Overall, more than a third (34.6%) of the disabled population aged 65 and older reported an unmet need for assistance with one or more ADL.  Prevalence of unmet need was strongly associated with increasing age and level of disability.  Desai, et. al., 2001.

• If the need for assistance goes unmet: older adults are at risk for a variety of adverse outcomes, including increased health service utilization and institutionalization.                                                                                             Desai, et. al., 2001.

• Greater targeted efforts are needed to identify at-risk older persons living in the community and to provide services (e.g., assistive devices, home care, community based services, and home modifications.                                                           Desai, et. al., 2001.