As we enter the 21st century, we are the beneficiaries of a myriad of medical and technological advances. As a result, we are living longer, and often healthier, lives. In many cases, however, we live longer but with compromising medical conditions. Add to this the increased costs of health care and stricter restrictions in managed care. Consequently, many individuals are finding themselves becoming the primary care-providers for ill and disabled family members. According to the National Survey of Families and Households (Arno, Levine, & Memmott, 1999), there were almost 26 million informal family caregivers in the United States in the late 1990s. Based on the 2000 Census, projections suggest that this number may be as high as 54 million.
Family caregivers are made up of spouses, children, parents, and other relatives. They have loved ones who are ill or have disabilities that require care ranging from minimal to 24-hour assistance, and with conditions such as Alzheimer's and Parkinson's disease, cerebral palsy, and Down's Syndrome. The profile of a family caregiver shows that many have responsibilities in addition to caring for their ill or disabled loved one. According to a national study, the average age of a caregiver is 46 years old. Over 75% of family caregivers are female, two-thirds are married, and 41% also have children under the age of 18 living in the home. Additionally, 64% of these caregivers are working, and 52% of these work full-time (The National Alliance for Caregiving and the American Association for Retired Persons, 1997).
Recent research verifies that the loss of leisure for caregivers is related to stress and health problems. The focus of this research update is on describing these findings and discussing what parks and recreation professionals can be doing to help family caregivers lead balanced lives.
Psychological and Physical Effects of Caregiving
With multiple roles and responsibilities to meet, it is logical that family caregivers are going to experience some type of negative consequences from the added stress. Specifically, professional research has identified family caregivers as a group who, because of the stress of their caregiving responsibilities, are in a high risk category for psychological and physical ailments. For example, Marks (1996) found that poorer health is the most likely consequence of caregiving for the caregiver. Additionally, the National Family Caregivers Association/Fortis Report (1998) found that two out of every three caregivers reported experiencing depression since taking on caregiving responsibilities.
Gallant and Connell (1998) found that the caregiving stress process is likely to lead to negative health behaviors in the caregivers. These negative behaviors, in turn, have been associated not only with poor health status but also mortality. Similarly, in the Journal of the American Medical Association, Schulz and Beach (1999) identified that family caregivers who experience stress from caregiving are four times more likely to experience early mortality than those who do not.
Caregivers' Leisure (or Lack thereof)
The literature also notes how family caregivers tend to give up things of personal benefit in order to have time and energy to care for their loved ones. For example, in a study of almost 3,000 women 40 years and older, King et al. (2000) found that caregiving duties and lack of energy ranked as two of the top four barriers to women being physically active. White-Means and Chang (1994) found that there is a 62% probability that caregiving restricts family leisure time and an 81% probability that it will compromise personal free time. Similarly, Ory et al. (1999) found that caregivers of individuals with cognitive disabilities such as Alzheimer's disease reported that they had to give up pleasurable personal activities such as vacations, hobbies, and their own activities. They noted that the caregivers also felt forced to spend less time with other members of their families because of caregiving. …