ElderWeb

A number of reports and studies have analyzed how access to caregiver and community services can reduce the utilization of nursing homes. This article includes summaries of a number of research studies on how older people identify, select, and access eldercare services. Based on these studies, it appears useful services to improve community care might include needs assessments, information and referral (I&R) services, support groups, counseling programs, telephone "hotlines", informational pamphlets, and respite services.

A needs assessment, If done by an unbiased party, could help guide families in the decision-making process, and ensure they are aware of the full range of services and solutions available. Combined with I&R services, it could help determine the most appropriate and cost-effective site for services needed by the older person, by matching their needs and financial resources to the actual services available in the community. Many family members, unfamiliar with the full range of aging services available, assume that nursing home placement is the only alternative when an older person is unable to manage their own care at home. While that is sometimes the right solution, a good assessment process could ensure no better alternative exists before that decision is made.

One thing which keeps older people at home at a manageable cost is the support of informal, unpaid, caregivers, such as spouses, family members, and friends. Any attempts to reduce nursing home utilization must include support for these informal caregivers. They need help caring for the problems which have been found to predict nursing home placement, including cognitive disorders and difficulties with IADLs. They also need support and respite to continue to provide care without burning out. Providing assistance to the informal caregivers could extend the time they are able to keep care recipients at home. This assistance could include support groups, counseling, and respite services.

Good supervision of complex medical directions could prevent acute episodes and health declines caused by failure to follow those directions. One way to do this is to provide information and instruction to older people and their caregivers in understandable language using informational pamphlets, telephone "hotlines", or on-site visits to explain and confirm that instructions are followed and understood.

Consumers need better systems for comparing, assessing, and monitoring care alternatives to understand the real benefits and costs of each type of care. A decision to move Mom to a nursing home so she will receive better care makes no sense if she is moved to a place where she receives less attention that she received at home because of inadequate staffing. An inexpensive, but unmonitored, home care aide is a poor solution if he/she is abusive, fails to show up when scheduled, or steals money or valuables. Residents in institutional settings may suffer from a lack of personal choice about lifestyle issues like smoking, eating, and drinking due to restrictive regulations and provider concerns about liability.

Consumers also need good information about the real cost of each care alternative and the reimbursement available. A jerry-rigged patchwork of community resources may be more expensive than placement in assisted living or a nursing home, and may be more time-consuming to manage than caring for the older person in the home of a relative. Assisted living is an attractive option for people who don't need complex medical care, but may not be available to people without significant financial resources or good long term care insurance.

REFERENCES

A Systematic Comparison of Community Care Demonstrations

June 1987, by Robert Kemper, Robert Applebaum, and Margaret Harrigan, is a study of how availability of community care can impact nursing home costs and utilization. The study draws several conclusions:

• Better information about available services may reduce nursing home placement and total care costs for people with low levels of care needs who are not aware of community alternatives.
• There is no way to restrict community care only to people at risk for nursing home placement, so while costs for some individuals may be reduced by access to more community services, the aggregate costs will grow due to the increase in the number of people accessing care.
• The cost advantage of community care over nursing home care is large for those with minimal needs, but reverses for those with extreme care needs, so remaining at home is not always a cost-effective solution.

Informal Caregiver Burnout, Predictors and Prevention

April 1993, ASPE Research Notes, analyzes what conditions are most likely to lead to failure of informal caregiver support and subsequent nursing home placement. Based on their research, they concluded the most likely reasons for individual caregivers to quit are:

• The number of ADLs
• The inability to leave the care recipient alone
• Sleep disturbances
• High levels of stress vs satisfaction
• The availability of other helpers

They also concluded that the most likely predictors of nursing home placement are:

• Cognitive impairment
• Advanced age (75+)
• White race
• High IADL impairment
• High burden on the caregiver
• Use of formal (paid) services

Improving Quality in Long Term Care by Anticipating the Needs of Chronically-Ill and Disabled Patients in the Community Setting

This 1998 testimony to the Institute of Medicine from American Medical Association discusses how better home care can reduce both hospitalizations and nursing home placement for frail older people. It states that for every patient in a nursing home, there are 3 similarly impaired people cared for at home by their families, and that 80% of homebound patients get all their care from family members. The report discusses the problems of "health illiteracy", stating that about half of all Americans would have trouble understanding and carrying out complicated medical directions, and that close to 70% of elderly people are "health illiterate". Since more than 12% of all hospitalizations are due to improperly taken medications, there is a significant opportunity to reduce healthcare costs by ensuring, through home care services, that complex medical instructions have been understood and followed. The report also points out that homebound elderly people have trouble arranging transportation, which makes it more difficult for physicians to monitor their care, could be alleviated by promoting physician house calls.

Improving Quality in Long-Term Care

February 1998 - This testimony to the Institute of Medicine from American Association of Retired Persons discusses quality assurance in nursing homes, supportive housing, and the home. They point out that consumers are demanding a higher quality of life, and they strongly prefer to receive supportive services in the most home-like environment possible. Improving technology and changing practices have made it possible to deliver care in a wider range of settings. All these changes mean that consumers have more choices than before, but state regulatory systems have had difficulty keeping up with the changes, and are under increasing budgetary pressure, so the assessment of the quality of care alternatives has become more difficult.

Some of the problems in nursing homes include inadequate nurse staffing, medication errors, use of restraints, and problems with dignity and quality of life. Inadequate reimbursement and inadequate funding of programs like the Ombudsman Program may also contribute to poor quality care. Supportive housing, including assisted living, has problems including cost-cutting strategies like shared rooms and baths, and inadequate staffing or services, especially for dementia patients. Another problem is the lack of standards and inadequate regulation of the industry. The lack of public funding means many of these programs are only available to the wealthy. Home care is inadequately regulated, suffers from a shortage of qualified, well-trained workers, and has no good quality-assurance system.

Improving Quality in Long Term Care

March 1998 - This testimony to the Institute of Medicine from American Medical Directors Association discusses the role of physicians in nursing homes. It states that reimbursement rather than appropriateness drives placement decisions, and that new Medicare reimbursement rules for nursing homes are likely to discourage them from accepting patients with complex care needs in favor of those with lesser needs. At the same time, assisted living facilities are attempting to retain residents with increasing care needs, which they may be unable to manage, and home health reimbursement is being scaled back, reducing access to home care services. All these issues muddy placement and treatment decisions for older people.

The AMDA is concerned about the lack of medical oversight in all care settings, and the need to strengthen the role of physicians and medical directors. They are concerned that current reimbursement systems are inadequate to provide that oversight. They also recommend extensive consumer education and vigorous advocacy to protect elderly people and their surrogate decision-makers.

Improving Quality in Long Term Care

March 1998 testimony to the Institute of Medicine from Consumers United for Assisted Living discusses ways assisted living can impact the care of older people. They point out that a jerry-rigged patchwork of community resources may be more expensive than placement in assisted living or a nursing home, and may be more time-consuming to manage than caring for the older person in the home of a relative. While they believe that assisted living provides a good solution for many families, they are concerned about the real estate mentality of many providers, the risk of importing the problems of the nursing home industry into this setting, the inadequacy of regulations, and the affordability of this housing.

What is Quality Care for Persons With Alzheimers Disease?

March 1998 testimony to the Institute of Medicine from Alzheimer's Association discusses the importance to family members of issues like the quality of staff, staff turnover, staff/resident ratios, the quality of service programs, and the safety of the environment in assessing the quality of institutional programs for people with Alzheimers.

Improving Quality in Long Term Care

March 1998 testimony to the Institute of Medicine from American College of Health Care Administrators discussed the importance of maintaining quality of life in institutional settings, and the fact that current regulations make it difficult to allow residents personal choice about things which involve risk, like eating unhealthy foods, smoking and drinking. The report discusses the need for regulatory systems to focus on outcomes and resident satisfaction, rather than prescribing processes.

The testimony describes changes in the various elements of the long term care continuum, and the lack of communication and integration across that continuum.

Making Decisions About Long Term Care: Voices of Elderly People and Their Families
Making Decisions About Long Term Care: Views From Professionals

This research into how families make long term care decisions from SPRY indicates that families need more information to make educated decisions. Families said they are highly influenced by their physicians, but that the physicians often didn't have good information about options, either. Decisions are often made in crisis, in an atmosphere of fear, guilt, and denial, and without complete information. Both projects emphasize the importance of providing good information to families so that appropriate decisions are made.