Alzheimer's disease: long-term care issues.

• Author: Kovach, Christine

A nursing assistant recently commented in relation to the care she was able to give her patients with dementia, "It's not supposed to be like this." The remark brings to the foreground the issue of what constitutes optimal care for people with Alzheimer's disease (AD) and other illnesses that cause irreversible dementia. It also brings up multiple issues related to the best mechanisms for providing and financing this care. These are topics of much debate, which challenge our notions and fears regarding aging, death, responsibility, and human dignity.

American society places tremendous value on personal autonomy, maintenance of control, personal appearance, intellectual ability, and productivity. Several generations of Americans have been socialized to expect a life of many freedoms and choices and the absence of discomfort. It is not surprising that, when confronted with the complexities of living in a society with 1.5 million people suffering from irreversible dementia, there are struggle, debate, contradiction, and often a search for simple, painless solutions. Ultimately, our assumptions about quality of care and quality of life are important because these views will guide our policy and treatment methods for a growing number of Americans. This article reviews some of the current issues in providing long-term care (LTC) in the community and in LTC institutions to adults with irreversible dementia.

Community-Based Care

Over the past decade community-based LTC has become increasingly available for people with irreversible dementia. Some of the services available are case management, home care by a nurse or nursing assistant, group homes, respite adult sitters, adult day care programs, hospice care, and overnight respite services.

Remaining at home and receiving community-based care is also considerably less costly than institutional care (five to twenty-five thousand dollars per year compared with thirty to fifty thousand).(1) The literature has recently been replete with articles touting the many benefits of "aging in place."(2) The assumption is that the process of living in a place over time results in a sense of attachment to the place that may be adaptive. Rowles warns that there is danger in romanticizing place and exaggerating the role of familiarity and emotional affiliation with place.(3) In addition, the current dominance of aging in place as a force guiding public policy toward older persons may be harmful to the reputation of LTC facilities and may place unwarranted psychological burdens on families who decide LTC placement is the best alternative. Decisions on care options must consider the needs of the patient, the needs of the family caregiver if one exists, and the needs of the entire family unit.(4) This society does, however, place a high value on home, and one would be hard-pressed to find a person who would say he or she would like to spend the final years of life in a nursing home. The resolution of issues related to cost, quality of community-based care, and family caregiver burden will impact the trajectory of community options available in the future.

Cost

Community-based care is expensive, and the availability of public or private support is limited. The estimated annual cost for home care for dementia patients is $25,259.(5) Many agencies rely on donations, foundation and corporation grants, and United Way funding. There is not a federally funded program that covers LTC costs in the community. Ironically, Medicaid will pay for nursing home care once persons have exhausted most of their personal assets, but in many states it will not pay for adult day care and other community services.(6) Patients therefore may use the more costly nursing home care when community care would be more appropriate. States do vary in their coverage of community care, but coverage is generally piecemeal and partial and leaves the family with a hefty financial burden. Some community agencies charge on a sliding scale, based on ability to pay.

One program, the Program of All-inclusive Care for the Elderly (PACE) demonstration, was authorized by Congress in 1986 to provide frail older adults a community-based alternative to nursing home admission.(7) There are ten PACE programs currently in operation and six due to open soon.(8) People enrolled in PACE receive a comprehensive range of acute and long-term services. A primary care clinic, adult day care, and rehabilitation area serve as the focal point of service delivery.(9) Enrollees generally attend the adult day care program three to seven times a week and receive a variety of services in the home.(10) Once enrolled in the program, the person is guaranteed that medical and LTC needs will be met by the program until death.(11) Case management is delivered through a consolidated staff model rather than a brokerage model, in which case management is intentionally separated from provision of care.(12) By integrating and providing multiple services, as well as increasing continuity of care, PACE programs reduce utilization of high-cost medical and inpatient services while maintaining high-quality care.

Quality of Services

Largely grass-roots efforts are under way throughout the country to increase...