At both ends of the life course, infancy and old age, the question of care is paramount. Not only do discussions revolve around the quality of care available to assist with the needs of these groups, but costs and moral obligations compound the debate. Just as young parents must decide whether to place a child in day care or find an alternative so that the child may be cared for at home, adult children and their aging parents must decide how best to care for the aged. Is home care by a family member or skilled nursing care in an institutional setting most appropriate? Often families agonize over the decision of how to care for their loved one. Many times, financial limitations determine the options more than does personal preference.
II. Caregiver Stress
III. Nursing Home Issues
IV. Home Care Issues
Even though the nuclear family has been the norm in U.S. society, caring for ill and elderly kin in one’s home was common. Few options existed until the early 20th century, when nurses who were concerned about the health and care of elder citizens began to operate elder care facilities. Accelerated by the Great Depression, they opened their homes at a time when the elderly had few other choices but to accept their care. Nurses could use the meager income that elderly residents could provide from federal Old Age Assistance funds. Thus, nursing homes began as a for-profit enterprise. Nurses were the first professionals to begin research in the area of aging.
At the founding of the United States, few options to care for the elderly existed aside from their own wealth or the generosity of their children. Those who had neither were usually at the mercy of the poorhouses or almshouses that generally were responsible for all those who had no means of support, not just the frail elderly. By the early 1800s, many young folks were moving west to seek their fortunes, often leaving older relatives behind to fend for themselves. In the mid- to late 1800s, residential homes for the elderly began to appear. These were largely the result of benevolent societies such as the Masons and the Knights of Columbus. These voluntary and charitable residences were unlikely to provide medical care but were simply a place to live. Some may have had separate hospital areas where ill persons were housed. Some of the wealthier elderly began to live in so-called rest houses, which were often several rooms for rent in private homes. By the end of the 19th century, more options were emerging for elders. However, care in an institutional setting would not emerge en masse until the 1950s, largely as a result of changes to Social Security programs. In 1954, for example, a national survey found 9,000 nursing homes housing about 270,000 residents.
Elder care today has changed in response to the needs of patients and their desires. There are many different levels of care that are available, and families often find that they need to research them thoroughly to determine which is the most appropriate for their elder relative. Aside from care by a family member or care in the elder’s own home, options include adult day care, assisted living, continuous care communities, independent living, and nursing homes. Adult day care provides respite care. This means the regular caregiver can use services to take a break from the rigors of caring. In independent living, residents live in a community setting where all of the maintenance is performed for them. Many amenities and the ability to furnish one’s residence as desired make these attractive for healthy elders. There is generally no medical staff on site, however. Very similar to independent living is the continuous care community. These are sometimes touted as the most luxurious option for retirement living because of the desirable amenities. These communities provide, for a fee, the health care support and assistance that will change with the needs of the resident. Assisted living facilities provide significant support with the tasks of daily living, changing the services as needed by the resident. There is 24-hour security and support staff presence, food service, daily task assistance, and personal support like assistance in dressing, bathing, and so forth. In nursing home care, there is medical assistance available on site, more direct supervision of daily activities, personal support, and end-of-life care.
Caring for a loved one is stressful. The literature suggests that the arrangement works best when there is at least some time for the caregiver and patient to be away from each other. This is where adult day care and other caregiver support tools can be particularly helpful. There are positive aspects to taking care of a loved one at home, usually because of the relationship between the caregiver and the elder. The satisfaction the caregiver feels, knowing that she is taking care of and helping the loved one, can help reduce the stress of the task and can improve her outlook on the role. People with higher rates of positive aspects of caregiving report less depression and more feelings of fulfillment. When the patient is mentally sharp and the relationship between caregiver and patient is close, the caregiving is viewed more positively. Likewise, the attitude one has going into the caregiving task is important in determining the attitude toward the task later. A difference between the races has been found for positive aspects of caregiving. African Americans report higher positive affect toward caregiving and lower anxiety. They also have comparatively lower socioeconomic status.
Older caregivers tend to view the caregiving more positively than do younger caregivers, who might see the task as a burden or interruption of their lives. Caregivers are particularly concerned with the quality of life that they can provide for their patients. When they feel that the loved one’s quality of life is deteriorating, they may be more likely to seek alternatives to home care.
Nursing Home Issues
Often the decision to use a nursing home is seen as a last resort. Much of this comes from the stigma of being in an institutional setting. There are circumstances, however, in which a nursing home can be the most beneficial option. While most assume that care outside the home is chosen because the elder relative requires a level of care that can no longer be provided by family, there may be other factors that make nursing home care and similar supportive options attractive. Unlike with other housing options, true nursing homes admit residents only with a physician’s order. Nursing home is used here to refer to both assisted living and nursing home–type care settings—what is more generally termed institutional care.
Many elderly people do not want to impose on their families and want to remain independent as long as they can. When they can no longer live independently, the family is faced with the choice to care for the loved one at home or employ some type of residential facility, such as a nursing home. In some cases, particularly where there are few financial resources, a nursing home may be the most cost-effective option. Most residents have their care paid for by federal or state subsidies such as Medicare or Medicaid. While this may necessitate the surrender of all the elder’s assets to the nursing facility, it may be the best long-term option.
Many of the benefits of nursing home care relate to the tasks of daily living that may become increasingly challenging as persons age. Included would be assistance with dressing, bathing, toileting, and other hygienic self-care. Additionally, for patients who are infirm, changing positions on a routine schedule and diapering can be hard for families but more easily managed with a trained staff. Other daily living tasks that nursing homes provide include food service and assistance with feeding, if needed. They also do laundry for residents and provide housekeeping services in their rooms or apartments.
Among the factors that are comforting to residents and family members are 24- hour security and trained staff caregivers. Additionally, social and recreational activities are available to provide leisure and enjoyment for residents. Given that the oldest and sickest elderly are likely to be in nursing care, the provision of medical supervision, including physician and other health care provider visits, is of benefit to the residents and families. Assistance is just a call button away, and someone can respond rapidly should an emergency occur.
Socially, many residents of institutional care are very satisfied with the situation. In a nursing home, there are staff and other residents with whom to interact, rather than just one caregiver. Communal living creates a bond with the other residents, who have, for the most part, had similar life experiences. This socially stimulating situation provides a daily activity schedule, and residents are encouraged to participate in it as they are able, thereby providing benefits to physical and psychological health. Even watching television is often done in a group context, thus encouraging interaction and shielding the elder from depression and loneliness.
There is a long-standing fear that nursing homes and other institutional settings are simply warehousing the elderly and that they do not take care of the elder as well as family members would. This stereotype leads to stress over the decision and fear of additional harm occurring as a consequence of the living situation. Most persons have a fear of institutionalization and prefer to stay in a familiar setting. Staying at home might also provide the elder with a sense of independence. Occasional reports of abuse of nursing home residents also make families and elders leery of such settings. While the abuse in these places draws media attention, elders are more likely to be abused by a family member at home than by a staff member at an institution.
Home Care Issues
Reciprocity, giving back to those who have given to you, plays a role whether consciously or unconsciously in the decision to care for an older relative at home. When one is a child, parents provide care; as parents age, children provide care. This creates a sense of being responsible for the care of one’s elders. This can lead to guilt when factors limit the amount of care that a child can reasonably provide. This obligation is also mirrored in societal expectations that nursing care is a last resort.
Home care works best when there are multiple people in the family who can help provide it, including household maintenance, transportation, stimulation, and direct physical care. Loved ones who are in poor health necessitate more of a commitment on the part of caregivers. Caregiving involves much more than just providing medical assistance. Family roles and relationships may become altered in the process: economic difficulties, curtailed work and social activities, and exacerbation of family conflicts can all change the interaction dynamics in a family. It is, however, becoming increasingly possible for family caregivers to acquire the needed support to care for elders at home. When care is directed from home, the family can set up who the additional caregivers are, when they provide care, and under what circumstances. This sense of control can be positive for the family and the elderly relative.
It is sometimes less expensive to care for an elderly family member at home than in an institutional setting. Particularly if funds have been established for such purposes, family members can stretch the budget by performing tasks themselves rather than hiring them out. There may, however, need to be actual physical changes to the home to accommodate adequate care for the elder. The costs of remodeling may be prohibitive.
Having the elder at home makes it easier to interact with that person on a daily basis and monitor his health. This is much more convenient than having to arrange a time to travel to another location to visit and interact. Additionally, more family bonding can occur in the home than in an institutional setting. From the standpoint of the elder, it is a comfortable situation, because she can retain more of her personal belongings and may not have to consolidate items like persons in institutional care must do.
A benefit of home care that is sometimes overlooked is the ongoing contact that the elder has with the community. Rather than being forced to conform to a totally different routine, as occurs in some institutional settings, home care permits the elder to remain an enmeshed participant in the social life of the family and community. This occurs through continuing to see the same health care providers, attending the same church, visiting the same recreational facilities, and so forth.
Many issues will continue to influence the way that families make the decision about institutional care compared to home care. Among the most critical are the changing demographic patterns of the society. As the U.S. population continues to age, there will be more concern about having enough spaces for all those who wish to or need to reside in nursing homes. For persons who are older but still highly functional, having some decision-making ability over their own health is expected. One of the concepts that will likely be discussed more in the coming years is aging in place. Growing older without having to move to secure necessary support services as one’s needs change can be beneficial. Advocates (such as the National Aging in Place Council) suggest that efforts should be made to support older persons remaining active participants in their communities and experiencing fulfilling interactions by living independently as long as their health permits them to do so. An intergenerational environment is the likely outcome. This approach is particularly supportive of those of low to moderate incomes, because they experience more financial constraints in the selection of care options.
More institutional facilities recognize this desire for independence and long-term participation in a residential community. Subsequently, they may offer a variety of services to provide long-term options for clients as they move from lower to higher levels of care need. For persons who are fortunate to be financially prepared for retirement and longevity expenses, the option of assisted living and other nursing home alternatives is attractive, suggesting that these types of facilities will be increasingly popular because residents are usually active participants in making the decision to live there.
As today’s elders age, they are living longer than past generations due to increased nutrition, medical knowledge, and positive lifestyle choices. This means there are more oldest old (persons 85 years and older) who are likely to have several medical issues with which to contend and that require more complex chronic disease management. As family size has decreased, the persons who can share the burden of caregiving, both financially and directly, are fewer, requiring a greater commitment from those providing care. Likewise, the continuing high rates of women’s employment suggest that there will be fewer traditional caregivers available to assume in-home care giving. Increased mobility for the population means that older people may not live in the same general locale as their potential family caregivers, giving more support to the idea that institutional care will increase as a percentage of all care for elders. Just because nursing and other institutional care is likely to increase, that does not mean that the decision about how to best care for elders will become any easier for families. Social pressures still suggest that the preferable pattern is for family to provide care as long as it is possible to do so.
Kimberly P. Brackett
- AARP, http://www.aarp.org/
- Berg-Weger, Marla, Caring for Elderly Parents. New York: Garland, 1996.
- Digregorio, Charlotte, Everything You Need to Know about Nursing Homes. Portland, OR: Civetta Press, 2005.
- Ebersole, Priscilla, and Theris A. Touhy, Geriatric Nursing: Growth of a Specialty. New York: Springer, 2006.
- Henry, Stella Mora, with Ann Convery, The Eldercare Handbook: Difficult Choices, Compassionate Solutions. New York: HarperCollins, 2006.
- Johnson & Johnson Caregiver Initiative,. http://www.strengthforcaring.com/
- National Aging in Place Council, http://www.ageinplace.org/