Services and Settings: An Introduction

Chapter 6

Long-Term CareServices and Settings:

An Introduction

C O N T E N T S

PageWhat Services Are Needed for Persons With Dementia? ., . .................201The Current Role of the Federal Government in Long-Term Care . ...........203Conceptual Issues in Long-Term Care of Persons With Dementia . . . . . . . ......206Long-Term Care Settings and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . ... ....2II

State Mental Hospitals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................212Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........................214Board and Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . ....................219Home Care.... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ......................222Adult Day Care Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .................228Community Mental Health Centers.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. ...230

Service Delivery Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...........231Chapter p references. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ................233

TablesTable No. Page6-1.6-2.6-3.

Care Serv ices for Persons With Dement ia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 202Major Federal Programs That Fund Long-Term Care Services . ...........204Residents of Mental Hospitals and Homes for the Aged Who Were 65or Older : 1950 , 1960 , 1970 , and 1980 . . . . . . . . . . . : . . . . . . . . . . . . . . . . . . . . 213

FigureFigure No. Page6-l. Nursing Home Residents With Chronic Brain Syndrome or Senility as

Assessed by Nurse Respondents, by Age, United States, 1977. . . . . . . . . . . . .215

Chapter 6

Long-Term Care Services and Settings:An Introduction

The availability, appropriateness, quality, and care and home care services tailored to theircost of long-term care services for persons with needs. Other chapters consider aspects of long-dementia are major concerns for their families, term care that are most directly affected by Fed-for health care and social service providers, and era] legislation and regulations, and thus mostfor Federal, State, and local government. Many likely to be addressed by Congress:residents of nursing homes and board and carefacilities and many recipients of long-term care

●

services at home are persons with dementia. Yet●

families complain that long-term care services arefrequently not available for such persons or, whenavailable, are of poor quality, inappropriate for

●

the needs of the person with dementia, and/ortoo expensive (122). Many health care and socialservice providers agree.

●

Government concerns about long-term care forpersons with dementia arise from the complaints ●

and urgent requests for help from families and

patient assessment and eligibility for publiclyfunded services (ch. 8);the training of health care and social serviceproviders who treat individuals with demen-tia (ch. 9);quality assurance procedures for nursinghomes, board and care facilities, and homecare services [ch. 10);Medicare and Medicaid coverage of long-termcare (ch. 11); andoverall financing of services for persons withdementia (ch. 12).

others who care for them. On the other hand,the current and potential cost of providing appro-priate long-term care services for the growingnumber of persons with dementia in this coun-try is a grave concern. The congressional lettersof request for this OTA assessment reflect bothconcerns.

This and the following six chapters take up theseconcerns. This chapter presents an overview ofexisting long-term care services and settings andthe Federal Government’s current role in long-term care. Chapter 7 discusses the relatively re-cent but growing phenomenon of long-term careservices designed specifically for people with de-mentia, including special care units in nursinghomes and board and care facilities and adult day

Although an increasing number of long-termcare facilities and agencies are providing servicesdesigned specifically for individuals with demen-tia, OTA estimates that fewer than 2 percent ofsuch persons are receiving special services. Thevast majority who receive any formal long-termcare services are cared for by facilities and agen-cies that provide essentially the same services foreveryone. Thus, the description of services andcare settings in this chapter reflects what is cur-rently available to most people with dementia. Italso provides a basis for understanding why fam-ilies and health care and social service providersare complaining to Congress and why many ofthem are so enthusiastic about the developmentof special services for these patients.

W H A T S E R V I C E S A R E N E E D E D F O R P E R S O N S W I T H D E M E N T I A ?

services for people with dementia include a wide services—for example, physician, legal, and den-variety of medical, social, rehabilitative, and le- tal services—they are needed intermittently overgal services (see table 6-l). While some of those the prolonged period of illness that characterizeslisted are not usually considered long-term care many dementing conditions.

201

202 ● Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other Dementias

Table 6-1.—Care Services for Persons With Dementia

Physician services: Diagnosis and ongoing medical care, in-cluding prescribing medications and treating intercurrentillness.

Patient assessment: Evaluation of the individual’s physical,mental, and emotional status, behavior, and socialsupports.

Skilled nursing: Medically oriented care provided by a licensednurse, including monitoring acute and unstable medicalconditions; assessing care needs; supervising medica-tions, tube and intravenous feeding, and personal care serv-ices; and treating bed sores and other conditions.

Physical therapy Rehabilitative treatment provided by a phys-ical therapist.

Occupational therapy: Treatment to improve functional abil-ities; provided by an occupational therapist.

Speech therapy: Treatment to improve or restore speech;provided by a speech therapist.

Persona/ care: Assistance with basic self-care activities suchas bathing, dressing, getting out of bed, eating, and usingthe bathroom.

Home hea/th aide services: Assistance with health-relatedtasks, such as medications, exercises, and personaI care.

Homemaker services: Household services, such as cooking,cleaning, laundry, and shopping, and escort service to ac-company patients to medical appointments and elsewhere.

Chore services: Household repairs, yard work, and errands.Supervision: Monitoring an individual’s whereabouts to en-

sure his or her safety.Paid companion/sitter An individual who comes to the home

to provide supervision, personal care, and socialization dur-ing the absence of the primary caregiver.

Congregate rneals: Meals provided in a group setting for peo-ple who may benefit both from the nutritionally sound mealand from social, educational, and recreational services pro-vided at the setting.

Home-de/ivered mea/s: Meals delivered to the home for in-dividuals who are unable to shop or cook for themselves.

SOURCE: Office of Technology Assessment, 19S7.

Some of the services are defined primarily interms of who provides them (e.g., physician anddental services, and physical, occupational, andspeech therapy). Others are defined by the gov-ernment programs that pay for them (e.g., skillednursing and home health aide services paid forby Medicaid and Medicare); by the needs of re-cipients (e.g., supervision and paid companion);or by their intent (e.g., respite care and hospiceservices). Because they are defined in differentways, they overlap conceptually. For example,adult day care, respite care, and hospice serviceseach include many of the others, and adult daycare can be a form of respite care.

people with dementing illnesses live at home orin nursing homes, in board and care facilities, or,to a lesser extent, in State mental hospitals. Mostof the services listed in table 6-1 can be provided

Telephone reassurance: Regular telephone calls to individu-als who are isolated and often homebound.

Personal emergency response systems: Telephone-basedsystems to alert others that an individual who is alone isexperiencing an emergency and needs assistance.

Transportation: Transporting people to medical appointments,community facilities, and elsewhere.

Recreation/ services: Physical exercise, art and music ther-apy, parties, celebrations, and other social and recreationalactivities.

Mental health services: Psychosocial assessment and in-dividual and group counseling to address psychologicaland emotional problems of patients and families.

Adult day care: A program of medical and social services,including socialization, activities, and supervision, providedin an outpatient setting,

Respite care: Short-term, in- or out-patient services intend-ed to provide temporary relief for the primary caregiver.

Dental services: Care of the teeth, and diagnosis and treat-ment of dental problems.

Legal services: Assistance with legal matters, such as ad-vance directives, guardianship, power of attorney, andtransfer of assets.

Protective services: Social and law enforcement services toprevent, eliminate, or remedy the effects of physical andemotional abuse or neglect.

Case management: Client assessment, identification andcoordination of community resources, and followup mon-itoring of client adjustment and service provision.

/formation and referral: Provision of written or verbal infor-mation about community agencies, services, and fundingsources.

Hospice services: Medical, nursing, and social services toprovide support and alleviate suffering for dying personsand their families.

in any of these settings, A few apply only to pa-tients living at home, such as homedelivered mealsand home health aide services, but basically thesame services (meals and assistance with medica-tions, exercises, and personal care) are also pro-vided to residents of nursing homes, board andcare facilities, and State mental hospitals.

The list of the services in table 6-1 representsan ideal that is seldom realized. Many services arenot available at all in some localities or are avail-able in insufficient quantity to meet local needs.Moreover, some services are not available in cer-tain settings. For example, mental health servicesare seldom available in nursing homes, in boardand care facilities, or at home.

The ideal for services and settings is sometimesdescribed as a continuum of care, implying that

Ch. 6—Long-Term Care Services and Settings: An Introduction • 203

the services and settings can be ordered to cor-respond to the increasing disability and care needsof patients. Such ordering maybe valid for physi-cally impaired patients. However, current knowl-edge of the course of dementia-causing diseasesand the care needs of persons with dementia atdifferent stages of their illnesses is insufficient atpresent to serve as a basis for specifying an or-der for long-term care services and settings. Forexample, nursing homes are usually placed at oneend of the continuum of care—indicating that theyare appropriate for severely disabled persons—while adult day care and home care are servicescloser to the other end—indicating that they areappropriate for less severely disabled individuals.Yet some people in the early or middle stages ofdementia may need institutional care, and somefamilies and adult day care centers are managingextremely debilitated dementia patients at home.Therefore, although the goal of providing a fullrange of services and settings for persons withdementia remains, the criteria for ordering themin a continuum of care are unknown.

Later sections of this chapter discuss the foursettings in which persons with dementia live—the home, nursing homes, board and care facil-ities, and State mental hospitals—and two non-residential settings —adult day care centers andcommunity mental health centers. Each sectionreviews what is known about the number of suchpersons in the setting, the services they receive,and the problems they experience in obtainingservices.

Hospitals provide acute medical care for demen-tia patients, and some also provide care for pro-

longed periods for such patients, often becauseno other care setting is available. However, incen-tives for shorter length of stay associated withthe Medicare Prospective Payment System andother government and private cost containmentmeasures are expected to decrease the use of acutecare hospital beds for long-term care. At the sametime, in response to these and other changes inhealth care delivery, a growing number of hospi-tals are developing home care and adult day careservices, and a few are converting acute care bedsto chronic or long-term care. In addition, hospi-tals continue to play a pivotal role in referringpatients to other community agencies for long-term care (11). This aspect of their role in long-term care is discussed later in this chapter.

Inpatient hospice units are a potential care set-ting for persons with dementia. They primarilyserve terminally ill cancer patients, however. Per-sons with dementia are seldom treated, partly be-cause they may be more difficult to manage thanother patients; and partly because of fears aboutmalpractice litigation since persons with demen-tia may not be competent to consent to withhold-ing or withdrawal of treatment (115,116). To in-crease the use of hospice services for persons withdementia would require adapting hospice meth-ods to the needs of cognitively impaired peopleand greater knowledge of the physical, emotional,and social aspects of patient functioning in thelate stages of dementia. Since inpatient hospiceunits seldom serve dementia patients at present,they are not discussed in this chapter.

T H E C U R R E N T R O L E O F T H E F E D E R A L G O V E R N M E N T

I N L O N G T E R M C A R E

The United States has no national long-term carepolicy, but the Federal Government is extensivelyinvolved in providing, funding, and regulating awide range of long-term care services. At least80 Federal programs provide or fund such serv-ices, either directly or indirectly. The five pro-grams described in table 6-2 are the major sourcesof Federal funding for long-term care (88), Theirrole in funding services for dementia patients is

discussed briefly here and at greater length inchapters 11 and 12.

The programs listed in table 6-2 pay for a sub-stantial proportion of all long-term care in thiscountry. In 1983, Medicaid paid about $12.4 bil-lion for nursing home care, which represented43 percent of all public and private spending forsuch services. Medicare paid $5OO million, or about

204 • Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other Dementias

Table 6=2.—Major Federal Programs That Fund Long=Term Care Services

Medcare/Title XVlll of the Social Security ActMedicare is the Federal insurance program intended toprovide medical care for elderly people. Generally thosewho are 65 or older are eligible, and about 95 percent ofthese Americans are enrolled in Medicare. People under65 who have been receiving social security disability pay-ments for at least 2 years are also eligible. Medicare pro-vides reimbursement for hospital and physician servicesand limited benefits for skilled nursing home care, homehealth care, and hospice. By law, Medicare does not covercustodial care.

Medicaid/Title XIX of the Social Security ActMedicaid is the joint Federal/State program intended toprovide medical and health-related services for low-in-come individuals. Medicaid regulations are establishedby each State within Federal guidelines; eligibility require-ments and the long-term care services that are coveredvary significantly among the States. In general, however,Medicaid pays for nursing home and home health care forindividuals who meet financial and medical eligibility re-quirements. In some States Medicaid also covers adultday care and in-home services such as personal care andhomemaker services.

Social Services Block Grant/Title XX of the Social Security ActThe Social Services Block Grant provides Federal fund-ing to States for social services for elderly and disabledpeople, among others. There are no Federal requirementsfor specific services that must be provided, but manyStates use a portion of their Social Services Block Grantfunds for board and care, adult day care, home health aide,homemaker, and chore services. States determine theeligibility requirements for these services and may requiremeans tests.

Title III of the Older Americans ActTitle Ill of the Older Americans Act provides Federal fund-ing to States for social services for people over 60. Thespecific services that are provided are determined by eachState and local Area Agencies on Aging, but Title Ill fundsare often used for home health aide, homemaker, andchore services; telephone reassurance; adult day care;respite care; case management; and congregate and home-delivered meals. Means tests are not used to determineeligibility y, but Title Ill services are supposed to be target-ed to elderly people with social or economic need.

Supplemental Security Income (SSI)SSI is the Federal income support program that providesmonthly payments to aged, disabled, and blind people withincomes below a minimum standard ($336 for individualsand $504 for couples in 1966) and assets below $1,700 forindividuals and $2,550 for couples, States may supplementthe Federal benefit for all SSI recipients in the State orfor specified groups, such as those living in board andcare facilities. Some States also provide SSI supplementsfor home health care and homemaker services.

SOURCE: U.S. Congress, Office of Technology Assessment, Techr?obgy and Ag-/rrg /n Amedca, OTA-BA-2S4 (Washington, DC: U.S. Government Print-ing Office, June 1W5); U.S. Congress, Congressional Reeearch Sewice,“Ftnancing and Delivery of Long-Term Care Services for the Elderly,”Oct. 17, 19S5.

2 percent of all spending for nursing home care(88). Both programs require eligible individualsto contribute their own resources to pay for partof the cost of their care. For example, individualswho are covered by Medicaid in a nursing homeand who receive a social security check or anyother income are required to pay almost all of itto the nursing home.

As a result, the 45 percent of total nursing homespending covered by Medicare and Medicaid ac-tually represented a much larger proportion ofall nursing home residents, perhaps as high as 65to 75 percent nationally (37,114) and 85 to 90 per-cent in some States (21). This somewhat compli-cated point is important for understanding theextent of government involvement in nursinghome care: that is, although Medicaid and Medi-care pay less than half the total cost of nursinghome care, anyone who receives any Medicaidor Medicare funding—whether it is $1 or $1,000—for nursing home care (i.e., 65 to 90 percent ofall residents) is a “Medicaid or Medicare patient”for purposes of regulatory requirements discussedbelow.

The proportion of home care paid for by theprograms listed in table 6-2 is not known, but ex-perts estimate that Medicare and Medicaid payfor one-third to one-half of all home care (18,72).In 1983, Medicare spent about $1.5 billion forhome health care, and Medicaid about $600 mil-lion. Social Services Block Grant funds for in-homeservices for recipients of all ages amounted tosome $555 million in 1983. Expenditures for in-home services under Title III of the Older Ameri-cans Act are not known, but the fiscal year 1985appropriation for all Title III services (except con-gregate and homedelivered meals) amounted to$256 million (88).

Little is known about the total cost of board andcare or adult day care or the proportion of thosecosts that is covered by publicly funded programs.However, about 43 percent of all residents ofboard and care facilities receive SupplementalSecurity Income (SSI) (58), and Social Services BlockGrant funds are used for board and care in somestates. Likewise, Medicaid, Social Services Block

Ch. 6—Long-Term Care Services and Settings: An Introduction Ž 205

Grant, and Title III funds are used for adult daycare in some States (15).

Because government programs pay for such alarge portion of long-term care services, govern-ment regulations play a significant role in defin-ing and structuring the entire care system. Legis-lation and program regulations that define whichlong-term care services are covered determine toa great extent what services are available at all.Thus, for example, Medicare and Medicaid legis-lation and regulations that restrict coverage tomedical and physical care services have resultedin these services becoming predominant over so-cial and mental health services in the long-termcare system as a whole. (The impact of Medicareand Medicaid coverage policies on the availabil-ity of appropriate services for persons with de-mentia is discussed in ch. 11.)

Similarly, legislation and regulations that defineeligibility requirements determine which individ-uals receive any publicly funded services. For in-stance, Medicare legislation and regulations de-fine eligibility in terms of the medical and skillednursing care needs of the patient; as a result, in-dividuals who need only personal care and su-pervision are ineligible. Long-term care is costly,especially when services are needed for prolongedperiods, as is often the case for someone with de-mentia. Since relatively few individuals or fam-ilies have sufficient income or assets to pay pri-vately for services for an extended amount of time,the eligibility requirements for publicly fundedservices determine to a great extent who receivesservices, at least for extended periods. Some in-dividuals, however, are given wrong diagnoses ordiagnoses that are not directly related to their careneeds in order to meet the eligibility requirements.(The impact of Medicare and Medicaid eligibilityrequirements on access to long-term care for de-mentia patients is discussed in ch. 11. Alternatemethods for determining eligibility are discussedin ch. 8.)

Legislation and program regulations also definewhich facilities and agencies may provide coveredservices. Federal regulations determine whichnursing homes and home health care agencies arecertified to provide Medicare-funded services. Fed-eral, State, and local government regulations de-

termine which facilities and agencies are certi-fied to provide services funded by Medicaid, theSocial Services Block Grant, Title 111 of the OlderAmericans Act, and SSI.

Certification and licensing requirements regu-late aspects of each facility’s physical plant, serv-ices that must be provided, and the number andtype of health care and social service professionalsand others who must be available in each facility.For example, regulations specify overall staff-to-resident ratios for nursing homes that care forMedicare and Medicaid recipients; the numberof required physician visits per year; and the min-imum level of involvement of dietitians, socialworkers, physical therapists, occupational ther-apists, pharmacists, and other professionals. Al-though some nursing homes have a physical plant,services, and staffing levels that exceed Medicareand Medicaid requirements, many barely meetthe minimum requirements (37), (Licensing andcertification procedures and the role of govern-ment in regulating quality of care in long-termcare facilities and agencies are discussed inch. 10.)

The Federal Government’s significant role infunding long-term care is well known. Less wellrecognized is the extent to which Federal legisla-tion and regulations and State legislation and reg-ulations developed within those Federal guidelinesdetermine what services are available, who re-ceives them, and who provides them. Moreover,since Medicaid pays for such a large proportionof all nursing home care, the program’s reimburse-ment rates also have a significant impact on theprevailing charges for nursing home care (38). Inmany localities, Medicaid rates function as a floorfor nursing home charges.

Even the long-term care services available to in-dividuals who pay privately are determined inlarge part by Federal and State program regula-tions and reimbursement rates. This is becausethese individuals are often treated in facilities andby agencies that also serve Medicare and Medic-aid patients and are, therefore, subject to thoseprograms’ requirements for physical plant, serv-ices, and staffing.

A final component of the Federal Government’srole in this area is the Veterans Administration(VA), the largest, single provider of long-term care

206 . Losing a Million Minds: Confronting the Tragedy of Aizheimer’s Disease and Other Dementias

services in the country. As of 1983, VA operated99 nursing homes, with an average daily censusof 8,849 residents, and 16 large board and carefacilities (called domiciliary care facilities) with anaverage daily census of 6,852. VA also paid fornursing home care in non-VA facilities for a dailyaverage of 10,212 veterans, for board and carein private homes for a daily average of 11,195 vet-erans, and for nursing home and board and carein 45 State veterans’ homes in 33 States, with adaily average of about 11,000 veterans. Home careservices were provided through 30 of the 172 VAMedical Centers for more than 7,000 veterans.

C O N C E P T U A L I S S U E S

Adult day care was provided at 5 VA MedicalCenters and respite care at 12 (111).

The pervasive role of the Federal Governmentin providing, funding, and regulating long-termcare underlines the importance of national legis-lation and regulations in determining access, qual-ity, and cost of care. Although Federal policies af -feet the availability of services for anyone in needof long-term care, they particularly affect thosewho require services for extended periods, includ-ing many persons with dementia.

I N L O N G T E R M C A R E

O F P E R S O N S W I T H D E M E N T I A

Several basic conceptual issues arise repeatedlyin discussions about long-term care for personswith dementia and underlie policy-related ques-tions about eligibility, personnel and training, qual-ity assurance, and financing. These issues are sum-marized below; their policy-related implicationsare introduced here and discussed at greaterlength in relevant chapters.

● What are or should be the relative rolesof families and formal long-term care serv-ices in the care of persons with dementia?

This question (also discussed in ch. 4) is an-swered in different ways by different people,Some people believe that formal long-term careservices completely replace services once providedby the family. Thus they believe that when a fam-ily is overcome by the burden of care and givesup, long-term care facilities and agencies shouldtake over. Other people believe that formal long-term care facilities and agencies provide specificservices that families cannot provide, such asskilled nursing care, occupational or physical ther-apy, or, on a simpler level, assisting an elderly care-giver with bathing a patient he or she is unableto lift. Thus, they believe that when such serv-ices are provided in the home, they forestall nurs-ing home placement, allow individuals to remainat home longer, save public dollars, and mitigatethe burden of care for families, without takingover tasks family members are able to perform.

Photo credit: ADRDA and Peter Cwrol, Photosynthesis Productions, Inc.

Families and paid caregivers may be equally capableof providing some long-term care services for persons

with dementia.

Still others believe that families and formal long-term care facilities and agencies are equally ca-pable of providing needed services and that for-mal services should be used on an intermittentbasis to provide relief for a family. This model ofcare—the respite care model-appears to be evolv-ing concurrently with the growing recognition ofthe care needs of persons with dementia and may,in fact, be developing in response to their careneeds. Specifically, respite care would be a uniquelyappropriate model of care if those with dementiaare seen to require supervision and assistance with


activities of daily living (services that many fam-ilies can provide) more frequently than othersreceiving long-term care, and to require skillednursing care, occupational therapy, and physicaltherapy (services that families ordinarily cannotprovide) less frequently.

It is unclear whether one of these models is mostappropriate for everyone with dementia or whetherthe appropriate model depends on patient char-acteristics, family characteristics, stage of illness,or all three. Obviously, the question of responsi-bility for the care of persons with dementia in-volves both providing provision of services andpaying for them. Theoretical and practical con-siderations in deciding who should pay for long-term care for persons with dementia are discussedin chapter 12.

● How does the concept of respite care re-late to the underlying rationale for exist-ing long-term care services?

Long-term care services funded by Medicareand Medicaid are intended to address medical andhealth-related needs, while services funded by theSocial Services Block Grant and Title III of theOlder Americans Act are meant to meet specificsocial service needs. In contrast, respite care aimsto temporarily relieve families of caregiving re-sponsibilities. It can involve any services that ful-fill that purpose and often consists primarily ofpatient supervision during the absence of a fam-ily caregiver.

In general, using long-term care services fundedby Medicare and Medicaid for respite care is in-consistent with the current intent of the programs,and regulations often restrict such use. (Medicareand Medicaid waiver programs discussed in thischapter and ch. 11 do sometimes allow respitecare,) Similarly, the intent and regulations of pro-grams that fund specific social services must bestretched when the need is not necessarily forthese services but rather for a temporary care-taker. Thus, the concept of respite care and theunderlying rationale for existing long-term careservices are mismatched: existing services are in-tended to address specific needs, while respite caredoes not imply specific services. Further, the em-phasis in existing services is on a patient and hisor her needs; respite care, although required be-

cause of an individual’s condition, responds pri-marily to family needs.

These conceptual differences raise questionsabout the kinds of services that should be includedin respite care programs and how they can bedefined in legislation and regulations. The differ-ence in focus on the needs of recipients versusthose of families raises questions about how todetermine eligibility for publicly funded respitecare services and whether it should be based onindividual needs, family needs, or some combi-nation. (The difficulty of defining and measuringfamily needs for the purpose of eligibility deter-mination is discussed in ch. 8.)

● What is the appropriate role of mentalhealth services and settings in the care ofpeople with dementia?

Primarily for historical reasons, most individ-uals with dementia receive long-term care serv-ices from facilities and agencies that focus on med-ical and physical care needs. Relatively few arecared for in State mental hospitals or other psy-chiatric facilities or receive services from out-patient mental health centers. Moreover, mentalhealth professionals, such as psychiatrists, clini-cal psychologists, psychiatric social workers, andpsychiatric nurses, are seldom employed in nurs-ing homes or other facilities and agencies that pro-vide long-term care for those with dementia (9,92).Although experts agree that dementia is an or-ganic condition and not a mental illness per se,the emotional and behavioral problems often asso-ciated with it suggest that the expertise of mentalhealth professionals may be particularly relevantto the care of persons with dementia (34,69,70).

In nursing homes and in board and care facil-ities, residents with dementia and those withchronic mental illnesses, such as schizophrenia,are sometimes considered to have similar careneeds. However, the emotional and behavioralproblems of nursing home residents are seldomidentified or evaluated (123). As a result, it is notclear whether the problems and long-term careneeds of these two groups are similar. It is alsounclear whether either or both groups could bebetter cared for in mental health settings. It is in-teresting to note that in some countries a signifi-cant portion of long-term care services for elderly

208 ● Losing a Million Minds: Confronting the Tragedy of A/zheimer’s Disease and Other Dementias

people is called “psychogeriatric care.” In theUnited States, although many State mental hospi-tals have psychogeriatric units and VA maintainssome psychogeriatric wards (12 in 1981) (111), theconcept of psychogeriatric care is not widely rec-ognized, nor are long-term care services usuallyprovided in this model.

For Federal policy purposes, the question of therole of mental health services and settings in thecare of persons with dementia has implicationsfor personnel and quality assurance regulationsand requirements for funding for mental healthservices in nursing homes and board and care fa-cilities. For example, Medicare and Medicaid donot require nursing homes to provide mentalhealth services for residents (9,34). If such serv-ices are believed to be important for individualswith dementia, changes in these regulations maybe needed. A related issue is whether governmentshould promote long-term care for persons withdementia in mental health facilities.

● Can the long-term care needs of personswith dementia who are under 65 be ade-quately met within the existing system?

Individuals with dementia usually receive long-term care services in facilities and agencies thatprimarily serve elderly people. It is unclearwhether the long-term care needs of younger peo-ple differ significantly from those of older onesand whether the needs of both groups are equallywell (or poorly) met in these settings. In addition,eligibility requirements for some long-term careservices exclude those who are under 60 or 65,and the process of establishing eligibility for otherprograms, such as Medicare, is considerably moredifficult for those under 65 (see ch. 11). Whetherand how long-term care services should beadapted to the needs of younger persons with de-mentia and whether public funding programsshould be restructured to include all everyonewith dementia on the same basis is an importantpolicy issue.

● What is the role of the Veterans Adminis-tration in providing long-term care serv-ices for dementia patients, and how are VAservices related to non-VA services?

Although VA provides and funds long-term careservices for many veterans, providing services forthose with dementia is problematic for two rea-sons. First, VA services are provided on a prioritybasis to veterans with service-connected disabili-ties. Since dementia is seldom service-connected,veterans with dementia are accorded a lower pri-ority than those with a service-connected disabil-ity. About 70 percent of those receiving VA serv-ices do not have service-connected disabilities (89),but an OTA survey of family caregivers found that45 percent of persons with dementia who appliedfor VA long-term care services were refused, mostoften because of lack of a service-connected dis-ability (122). A second problem is that VA serv-ices have traditionally focused on the veteran andnot the family. Providing respite care would re-quire a change in this traditional focus (112).

Despite these problems, VA is providing serv-ices for many veterans with dementia. In fiscalyear 1983, VA hospitals and nursing homes treated11,2OO veterans with a primary diagnosis of a de-menting disorder and about 9)000 others who haddementia as a secondary diagnosis. VA has devel-oped several special care units for persons withdementia (112), and the agency is currently sur-veying all its facilities to determine service avail-ability and gaps for such persons (19).

Over the next 15 years, the number of veteransin older age groups—and therefore at greater riskfor dementia–will increase dramatically. In 1980,some 3 million veterans were over 65, but by 2000that number will increase to 9 million, represent-ing 63 percent of all males over 65 (111). In viewof this very large population base, VA could buildmore facilities, purchase care for veterans in non-VA facilities, restrict eligibility for no-cost serv-ices, or limit the services it covers. Legislationpassed by Congress in 1986 limits eligibility forveterans with non-service-connected disabilitiesto those who have incomes of $15,000 or less fora single veteran, $18,000 or less for a veteran withone dependent, with $1)000 added for each addi-tional dependent. Veterans with non-service-con-nected disabilities and income above these levelsmay receive VA services if the services are avail-able and if the veteran contributes to the cost ofcare (106).

Ch. 6—Long-Term Care Services and Settings: An Introduction . 209

Although VA has traditionally limited care forveterans with non-service-connected disabilities,such as dementia, the families of these individ-uals often expect VA to provide care and some-times complain to their Representative or Sena-tor when it is denied. Several bills have beenintroduced in Congress to require VA services forveterans with dementia. For example, HR 1102would have required VA to allocate 10 percentof its long-term care beds to dementia patients.This bill was not enacted.

As the number of elderly veterans increases,Federal policies that provide long-term care in VAfacilities for veterans with dementia would relievenon-VA facilities of the burden of caring for thembut would simultaneously increase VA expendi-tures. Policies that allow the agency to purchasecare from non-VA facilities would also increaseVA expenditures but eliminate the need to buildmore VA facilities. Policies that deny VA servicesand coverage of services in non-VA facilities wouldshift the burden and cost of caring for veteranswith dementia to non-VA facilities and to Medi-care and Medicaid. Thus, VA eligibility and fund-ing policies affect the need for non-VA facilitiesand services and Medicare and Medicaid expend-itures for long-term care. Although the problemof integrating VA and non-VA long-term care serv-ices has received considerable attention in gen-eral (96)105)110)111,120), the relationship of thetwo in providing services for persons with demen-tia has received little attention.

● What long-term care services can andshould be provided for persons with de-mentia in rural areas?

Many rural areas lack long-term care facilities,and lengthy travel times may make services suchas adult day care impractical. Long distances andinsufficiently trained personnel can also interferewith delivery of home care services. In some cases,lack of home care and adult day care may resultin early placement of individuals with dementiain long-term facilities far from their homes. Inother cases, lack of services intensifies the bur-den for families who care for them at home. Anal-ysis of long-term care policy options should in-clude consideration of their effect on persons withdementia in rural as well as suburban and urbanareas.

● How do the long-term care needs of minor-ity group members with dementia differfrom those of nonminority group members?

Little is known about the care of minority groupmembers with dementia. Although epidemiologicresearch indicates no difference in the prevalenceof most dementing conditions among minoritygroups (see ch. 1), differences in attitudes, beliefs,and other characteristics among such groups mayaffect the way persons with dementia are regardedby their families and the larger community—forexample, whether they are seen as physically ill,mentally ill, or simply old. Ethnic and cultural fac-tors affect patterns of informal caregiving and theuse of medical, mental health, and social services.They also determine the most effective methodsof informing patients and their families of avail-able services (54). Differences in minority groupcharacteristics affect the validity of assessmentprocedures used to determine eligibility for serv-ices (see ch. 8), and they have important implica-tions for staffing requirements and quality assur-ance regulations for long-term care facilities andagencies.

Because minority group status is frequently asso-ciated with low income, minority group membersare more likely than others to depend on pub-licly funded programs that are means-tested. Forexample, 22 percent of black elderly and 25 per-cent of Hispanic elderly received SSI in 1981, com-pared with only 5 percent of the elderly popula-tion in general (57). Thus SSI policies can beexpected to have a greater impact on access tolong-term care services for minority group mem-bers than for the general population. Similarly,a higher proportion of blacks and Hispanics useVA as their sole source of health care (111). There-fore, VA policies may affect long-term care forminority groups disproportionately.

Different minority groups vary greatly on a widerange of characteristics, and no generalizationscan be made about how all or even the majorityof these groups react to and care for persons withdementia. Examples from minority groups areused throughout this and the following chaptersto point out variations in patient care needs, in-formal caregiving patterns, and formal service uti-lization that are relevant to the development ofpublic policy. At the same time, OTA recognizes


the considerable differences in attitudes, beliefs,and characteristics within and between minoritygroups, and no stereotypes are intended.

● What is the appropriate balance of institu-tional and noninstitutional long-term careservices for persons with dementia?

Some publicly funded programs, notably Med-icaid and the VA, have encouraged institutionallong-term care over home care in general (81,88,111), Long-term care experts agree, however, thatservices for all kinds of patients should be pro-vided in the home whenever possible and that pro-gram regulations should be changed to promotehome care and services such as adult day carefor those living at home. This approach is gener-ally accepted for those with dementia, and as aresult, families, health care and social service pro-viders, and others are asking for increased serv-ices for individuals with dementia who are livingat home.

The bias in favor of home care is strong, andnursing homes and other such institutions areoften perceived negatively. At the same time, theOTA survey of family caregivers found that 80percent agree that “a patient with a severe caseof Alzheimer’s disease should be living in a nurs-ing home” (122). Similarly, the MassachusettsGovernor’s Committee on Alzheimer’s Diseasefound that “because all patients with Alzheimer’sDisease who survive long enough eventually re-quire total care, the majority end up in institu-tions” (27). Thus institutional care is seen as un-avoidable for many individuals in late stages ofdementing illnesses.

For several reasons, institutional care may alsobe appropriate for some patients in earlier stagesof the illnesses:

Because of decreased cognitive ability andjudgment, most individuals with dementia re-quire 24-hour supervision. Those who do nothave a family member or other person will-ing and able to provide that supervision mayneed institutional care, regardless of theirother care needs, because the cost of 24-hoursupervision at home is usually prohibitive.For family caregivers, behavioral disordersof some persons with dementia maybe emo -

Photo credit: ADf?DA and Peter Carrd, PhobSynthesls Productions, lnc~

Families and health care and social service providersagree that home care is the first choice of persons

●

●

●

with dementia.

tionally intolerable. In addition, some familycaregivers who are smaller than the patientor who have sensory impairments may bephysically at risk from some behavioral dis-orders. Such disorders may be more likelyin the early or middle rather than the latestages of the illnesses.Although the home is often said to be the leastrestrictive setting for long-term care, individ-uals who wander and whose behavior is so-cially unacceptable may actually require fewerrestrictions in institutional settings that allowsuch behaviors.Some environmental adaptations believed tofacilitate improved functioning are feasiblein institutional settings and adult day carecenters but less so in the home. Social stimu-lation is also easier to provide in a groupsetting.In situations where the relationship betweenthe patient and caregiver is poor, institutionalplacement may be necessary to avoid possi-ble neglect or abuse at home.

For these reasons, institutional care may be themost appropriate long-term care option for someindividuals with dementia even if they are not inthe late stages of the illness, when total nursingcare is needed, and even if formal home care serv-ices are available. The prevailing negative attitudesabout nursing homes and other institutional set-


tings increase the guilt of family members whodecide that institutional placement is the bestcourse. Such attitudes also discourage the use ofnursing homes for respite care and may dis-courage some family members from remaininginvolved with their relative after placement.

● Do persons with dementia require speciallong-term care services?

Perhaps the most important conceptual issuein long-term care for persons with dementia iswhether they constitute a definable group withdistinct care needs. The related policy issue iswhether the Federal Government should createincentives for developing special long-term careservices for them. Although most people agreethat the long-term care system needs improve-ment, in general, some argue that the needs ofthis group are different and that special servicesand settings are needed. Others believe that every-one who requires long-term care has special careneeds, and that making the existing system moreresponsive to the needs of each individual is a bet-ter approach than singling out one group for spe-cial care.

These two points of view raise important theo-retical questions that have received little atten-tion despite the growing interest in special serv-

ices for persons with dementia. One overridingquestion is whether the category “dementia pa-tients” is conceptually clear. Who is included? Onlythose with Alzheimer’s disease or other primarydegenerative dementias? What about individualswith multi-infarct dementia or Huntington’s dis-ease, or elderly persons with physical conditionsthat have dementia as a side effect of the diseaseor its treatment? If a category can be delineated,what are the long-term care needs of that group?Are their needs sufficiently similar—and suffi-ciently different from those of other patients—towarrant a separate care system?

The corresponding practical questions arewhether persons with dementia can be accuratelydistinguished from other long-term care patients,which services they need, who can best providethem, and how much they should cost. Thus far,these questions have been answered in differentways by the many different individuals, groups,and agencies that have developed special servicesfor persons with dementia. At the point when Fed-eral, State, or local government begins to provideor fund special services for persons with demen-tia, these questions require answers that can betranslated into eligibility requirements, staffingand quality assurance regulations, and reimburse-ment guidelines.

L O N G T E R M C A R E S E T T I N G S A N D S E R V I C E S

The following sections describe six settings thatprovide long-term care services for persons withdementia and other persons. Each section discussesthe nature of those who are served, the qualityof care, and access to the services for persons withdementia and their families.

Three distinct systems provide long-term careservices:

1. the medical or physical care system, whichincludes nursing homes and home health careagencies and is funded primarily by Medicareand Medicaid;

2. the aging services system, which includesArea Agencies on Aging and homemaker andhome nutrition providers and is funded byTitle III, the Social Services Block Grant, andState and local funds; and

3. the mental health system, which includesState mental hospitals and community men-tal health centers and is funded by Medicaid,a Federal block grant, and State and localfunds.

Persons with dementia are seldom differentiatedfrom others who receive services in each of thesesystems. Thus individuals with dementia who re-ceive services in the medical or physical care sys-tem are grouped conceptually with physically im-paired elderly people, and increasingly bothgroups are described in terms of limitations intheir self -care abilities or activities of daily living(ADLs). Those with dementia who receive serv-ices through the aging services system are groupedwith physically impaired elderly people, and bothgroups are described under the rubric “frail elderly,”

212 . Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other Dementias

Finally, persons with dementia who receive serv-ices through the mental health system are groupedwith those who have chronic mental illnesses, andboth sets of patients are described as “mentally ill.”

Individuals with dementia are seldom identifiedas a discrete group in long-term care research,and as a result, there are few studies comparingthem with others who receive long-term care interms of their characteristics, care needs, or ex-periences with facilities and agencies. Failure toidentify them as a discrete group occurs partlybecause interest in these patients as a group hasdeveloped only recently, partly because of con-ceptual and practical difficulties in defining thegroup, and partly because aspects of the existinglong-term care system, including eligibility, cer-tification, and reimbursement regulations, tendto discourage their identification as a group.

Information in the following sections is largelyfrom research in which the study populations in-clude an unknown number of individuals withdementia. Although the population of elderly Statemental hospital patients with a diagnosis of or-ganic brain syndrome clearly includes many per-sons with dementia, it is more difficult for exam-ple to identify such persons in the three categoriesthat have been used in research on board and carefacilities: aged, mentally ill, and mentally retardedresidents. Thus the accuracy of available infor-mation about the number of people with dementiain each setting varies. Moreover, for most settings,no comparisons are available of the characteris-tics and care needs of persons with and withoutdementia, or of the services most frequently pro-vided for each group.

The following sections draw on the OTA sur-vey of family caregivers (122) described in moredetail in chapter 4. In addition, in the past fewyears, several State-sponsored committees andtask forces have studied services for persons withdementia, and their reports specifically addressthe needs of these persons. Some of their find-ings are cited here; in general, they are based onanecdotalsuch.

The sixlow are:

1. State

reports and should be interpreted as

long-term care settings described be-

mental hospitals,

2. nursing homes,3. board and care facilities,4. home care,5. adult day care centers, and6. community mental health centers.

State Mental Hospitals

State mental hospitals are usually large psy-chiatric facilities that provide acute and long-termcare for mentally ill people. They are seldom in-cluded in reviews of long-term care settings, butuntil 30 to 40 years ago, they were the formallong-term care setting used most frequently forpersons with dementia. Since then, factors largelyunrelated to the care needs of such persons haveresulted in decreased use of State mental hospi-tals for institutional care of persons with demen-tia and increased use of nursing homes and, toa lesser extent, board and care facilities.

During the 1700s and early 1800s, people whocould not live independently because of acute orchronic physical or mental impairments and whohad no source of informal care lived in locally sup-ported almshouse. It is not known how manyindividuals with dementia lived in almshouse be-cause the category “dementia patients” was un-known at that time; many of the diseases thatcause dementia were not understood, and confu-sion was seen as a natural concomitant of old age.Some portion of those in almshouse undoubtedlyhad a dementing disorder, however.

Beginning in the mid-1800s, mentally ill peoplewho would previously have been placed in alms-house were instead cared for in State-supportedmental hospitals, called asylums. At first, thesefacilities admitted only patients with acute men-tal illnesses. Over the next century, however, andparticularly after 1900, State mental hospitals pro-vided care for an increasing number of chroni-cally mentally ill and senile people (29,60). By 1946,some 44 percent of all first admissions to Stateand county mental hospitals had a diagnosis oforganic brain syndrome (not including drug- oralcohol-induced organic brain syndrome) (102),and 30 percent of the residents of State mentalhospitals were over 65 (48). Even though the termdementia was not used to describe the ailmentsof these individuals, it is clear that many and per-haps most of them had dementing illnesses.

Ch. 6—Long-Term Care Services and Settings.: An Introduction ● 273

In the late 1940s and 1950s, several develop-ments combined to create a new direction in treat-ment of those with mental illness—the commu-nity mental health movement. This movementgrew in part from the recognition that large Statemental hospitals had become primarily custodialfacilities where little treatment was provided, andin part from the development of psychotropicdrugs and brief therapy methods that made out-patient care feasible for many patients. The move-ment, with its primary tenet that mental healthservices should be provided in the communitywhenever possible, led to the process of deinstitu-tionalization. As a result, between 1955 and 1980,the overall population of State mental hospitalsdecreased by 75 percent (44)60). Likewise, be-tween 1946 and 1972, the proportion of first ad-missions to State mental hospitals with a diagno-sis of organic brain syndrome dropped from 44to 10 percent (102).

For elderly people, deinstitutionalization re-sulted primarily in reduced use of State mentalhospitals and increased use of nursing homes andrelated care facilities. Table 6-3 documents themagnitude of this change,

Increased use of nursing homes was spurredby the enactment of Medicaid in 1965, which forthe first time provided public funding for nurs-ing home care on a national basis. With the intro-duction of Supplemental Security Income (SSI) in1972, a federally guaranteed minimum income forelderly and disabled people was available for thefirst time. Moreover, some States provided addi-tional funds for SSI residents in board and carefacilities. The availability of SSI and State SSI sup-plements encouraged the discharge of personswith dementia (and of other State hospital resi-dents) to board and care facilities (48).

Table 6-3.—Residents of Mental Hospitals and Homesfor the Aged Who Were 65 or Older:

1950, 1960, 1970, and 1980

Rate per 100,000 persons 65 or older

Type of institution 1950 1960 1970 1980

Mental hospitals, 1,150 1,074 563 200Homes for the aged/dependent 1,769 2,342 3,966 4,835SOURCE Based on P Lerman ‘Delnstltutlonallzatlon and Welfare Pollcles In the Welfare State

In America Trends and Prospects ,4rxmcmi Academy of Pd/f/ca/ and SocM/ SCPerrces- 1985 Arma/s 479 132.155 1985

Historically, changes in the primary locus of in-stitutional care for persons with dementia—fromalmshouse to State mental hospitals, and fromthere to nursing homes and board and care fa-cilities—have occurred primarily in response tofinancial incentives. Placing these persons in Statemental hospitals instead of almshouse transferredthe cost of their care from local to State govern-ment (29). Similarly, placing them in nursing homesand board and care facilities instead of State men-tal hospitals transferred part of the costs to theFederal Government through Medicaid and SSI(48,60). There is no evidence that these changesoccurred in response to the care needs of indi-viduals with dementia, or that their care needsand the effect on them of changes in the locusof care were even considered.

The number of persons with dementia in Statemental hospitals is not known. The 1980 censuscounted 51,000 elderly people in all mental hos-pitals (48), and some observers suggest that manyof them have dementia even though their diag-noses may indicate mental illness (6). The NationalAssociation of State Mental Health Commissionersrecently appointed a Task Force on Alzheimer’sDisease that will develop estimates of the num-ber of persons with dementia in such facilities (49).

Current admission practices in many State men-tal hospitals discourage admission of persons withdementia who can be managed in other settings(64,68), but clearly some, and perhaps many, areadmitted. The Rhode Island Legislative Commis-sion on Dementias Related to Aging described whypersons with dementia might be transferred fromnursing homes to State mental hospitals:

If . . . the patient becomes aggressive, combat-ive or in some manner endangers himself, otherpatients, or members of the nursing home staff,and such behavior cannot be controlled ade-quately through the use of physician-orderedpharmacological or physical restraints, the nurs-ing home facility will then arrange for his trans-fer to one of the state . . . hospitals. Transfer mayalso be initiated if the patient wanders continu-ally and cannot be restrained or monitored effec -tively (68).

In some cases, State mental hospitals are able toadjust medications to bring the behavior of these


persons under control so that they can return tothe nursing home.

Persons with dementia who are living in thecommunity are sometimes brought to State men-tal hospitals because of behavior that is consid-ered dangerous to themselves or others, and someare brought in by the police on an emergency ba-sis when they are picked up wandering in thestreets (27). How often such situations occur isnot known, however.

Although State mental hospitals have been crit-icized for providing only custodial care, some per-sons with dementia receive excellent treatmentin these facilities, as the Massachusetts Governor’sCommittee on Alzheimer’s Disease heard:

To my surprise and relief our experience with(the) State Hospital turned out to be a positive oneduring most of my father’s 18-month stay there.He was taken off all medication immediately. Thedoctors, nurses, and attendants we met therewere kind and competent. Within six weeks myfather’s behavior had adjusted to the point whereit was thought that he could function in a nurs-ing home. On the recommendation of the hospi-tal social worker my father was placed in a par-ticular nursing home. She brought him there ona Friday. We decided to give him a few days toadjust to his new surroundings. On Sunday after-noon my mother, brother, and I walked into myfather’s room to find him tied to a chair, naked,drugged, and in a pool of urine. I called up thesocial worker at (the hospital) and told her whatwe had found. She said she would investigate. Thenext day she found my father in the same condi-tion and returned him to (the) State Hospitalwhere he stayed until he died 18 months later (27).

Although little consideration has been given toproviding long-term care for persons with demen-tia in State mental hospitals, at least one State taskforce has proposed developing a demonstrationspecial care unit in one facility (68). Such a unitcould provide a model of care based on a mentalhealth rather than medical or physical care prin-ciples. One problem with this approach is that carein State mental hospitals can cost considerablymore than in nursing homes. Since Medicaid fund-ing is available for elderly patients in mental hos-pitals, the cost of care for Medicaid-eligible elderlypeople is shared by the Federal and State govern-

ment. Medicaid does not cover those under 65in mental institutions, and there is variation amongStates in how these patients are paid for. Gener-ally, however, the cost is borne by State and localgovernment.

Nursing Homes

Nursing homes are health care facilities that pro-vide 24-hour supervision, skilled nursing services,and personal care. They are now the most fre-quently used institutional setting for persons withdementia. Care is provided primarily by nursesand by nurse’s aides under their supervision. Al-though both Medicare and Medicaid regulationsemphasize the nursing component of nursinghome care, many persons with dementia do notneed skilled nursing services, and for them themost important components of nursing home caremay be 24-hour supervision and personal care.

At present, there are 14,000 to 15,000 nursinghomes in the United States, with about 1.5 mil-lion beds (37,77). (Both the National Master Facil-ity Inventory (NMFI) and the National NursingHome Survey include a large number of facilities(about 11,000 in the 1982 NMFI) that do not em-ploy any nurses or provide nursing services. Theseare discussed in the section on board and carefacilities in this chapter.) About 75 percent of nurs-ing homes are for-profit facilities, 20 percent arenon-profit, and 5 percent are government-owned(101),

In 1982, some 7,000 nursing homes were certi-fied to provide Medicare and/or Medicaid skillednursing care and are called skilled nursing facil-ities (SNFs). About 5,500 others were certified toprovide Medicaid intermediate level care (101) andare called intermediate care facilities (ICFs). Manynursing homes have some beds certified at theSNF level and some at the ICF level. Another 1,500nursing homes, although they provided nursingcare, were not certified by either Medicare orMedicaid (77).

The main difference between skilled nursingfacilities and intermediate care facilities is that Fed-eral regulations require SNFs to provide 24-hourservices by licensed practical nurses (LPNs) andto employ at least one registered nurse on the day


shift, 7 days a week. ICFs must have at least oneLPN on duty during the day shift 7 days a week.State Medicaid regulations that define SNFs andICFs vary greatly, and the proportion of nursinghomes in each category also varies. For example,all or almost all nursing homes in Arizona andConnecticut are certified as SNFs, while almostall those in Iowa and the District of Columbia arecertified as ICFs. Few differences have been foundin the kinds of individuals cared for in SNFs andICFs in different States, and the Institute of Medi-cine’s Committee on Nursing Home Regulation re-cently recommended that the distinction betweenthem should be dropped (37). The impact of sucha change on access to nursing homes by personswith dementia requires further analysis.

Nursing home bed supply varies widely, froma low of 22 beds per 1,000 elderly residents inFlorida to a high of 94 in Wisconsin (94). Totalbed supply increased steadily from 1963 to 1977,but the rate of increase has slowed since then,partly in response to State efforts to limit bed sup-ply in order to contain Medicaid expenditures.Since 1977 the supply has grown at a rate slowerthan the growth in the population age 75 or older,thus limiting access to nursing home care in gen-eral (94,114).

Residents With Dementia inNursing Homes

Until recently, scant information was availableabout the number of persons with dementia innursing homes. The 1977 National Nursing HomeSurvey found that 7 percent of residents had aprimary diagnosis of chronic brain syndrome, and2 percent had a primary diagnosis of senility with-out psychosis (97). NO information was obtainedabout other diagnoses associated with dementia.However, nurses were asked about each resident’schronic conditions. According to the nurses, about25 percent of all residents had chronic brain syn-drome and 32 percent were senile, with preva-lence increasing with age (see figure 6-1) (97).

The difference between the small proportionof nursing home residents with a primary diag-nosis of chronic brain syndrome or senility andthe much higher proportions identified by thenurses is partly explained by diagnostic practices

Figure 6-1 .-Nursing Home Residents With ChronicBrain Syndrome or Senility as Assessed by

Nurse Respondents, by Age, United States, 1977

4 0

30

20

10

I

SOURCE: U.S. Department of Health and Human Services, Public Health Serv-ice, National Center for Health Statistics, Characferistks of Nurs/rrgHome Residents, Hea/th Status, and Care Received: Nationa/ NursingHome Survey, United States, May-Oecember 1977, series 13, No. 51,DHHS Pub. No. (PHS) 81-1712, Hyattsviile, MD, 19S1.

that resulted in underdiagnosis of dementia, asdiscussed in chapters 1 and 3. In addition, Medi-care and Medicaid policies that define eligibilityin terms of medical and nursing care needs dis-courage the use of diagnoses that suggest the needfor personal care and supervision instead. (Seealso the discussion of the ‘50 percent rule” in ch.11.)

Since 1977, diagnostic practices have changedconsiderably, and higher proportions of nursinghome residents now have a primary or second-ary diagnosis of dementing disorders, at least insome States. A 1985 survey of Texas nursinghomes found that 45 percent of the residents hada diagnosis of Alzheimer’s disease and an addi-tional 21 percent had diagnoses of other dement-ing disorders (86). A 1984 survey of New Yorknursing homes found that 41 percent of residentshad a diagnosis of a dementing disorder (22).

Although some observers believe that demen-tia, and particularly Alzheimer’s disease, is nowbeing overdiagnosed for nursing home residents,research based on assessments of cognitive sta-tus rather than diagnoses suggests that at least

216 Ž osing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other Dementias

40 percent have a dementing disorder, and in somefacilities the proportion is even higher. A 1983study in Rhode Island using a cognitive rating scaleto assess mental status found that 40 percent ofthose under 80 and 50 percent of those older haddementia (68). Another study found that 56 per-cent of the residents of a Maryland nursing homehad a primary degenerative dementia, another 18percent had multi-infarct dementia, and 4 percenthad dementia associated with Parkinson’s disease—a total of 78 percent with dementing disorders(70).

In addition to residents with cognitive impair-ment caused by the dementing disorders that arethe subject of this OTA assessment, nursing homesserve people with cognitive impairments causedby acute and chronic diseases, by drugs taken totreat those diseases, by pain or terminal illness,and by mental retardation, They also serve peo-ple who appear to be cognitively impaired becauseof hearing and speech impairments or emotionalwithdrawal associated with depression. Nurses,nurse’s aides, and other staff often do not distin-guish between cognitive impairments caused bydementing disorders and those due to these otherfactors. (Some of the difficulties involved in mak-ing such distinctions are discussed in ch. 8.)

Little research has been done on the character-istics and care needs of persons with dementiain nursing homes. One study (70 found that manyof these persons have coexisting psychiatric dis-orders (e.g., delusions, hallucinations, or depres-sion) and behavioral disorders (e.g., restlessness,agitation, wandering). The length of stay of nurs-ing home residents varies greatly, and severalstudies indicate that residents with mental dis-orders, including chronic brain syndrome and se-nility, tend to be among those who stay longestand, therefore, may be more likely than other resi-dents to become eligible for Medicaid (42,53).

Many nursing home administrators and employ-ees believe that persons with dementia are moredifficult to care for and require more staff timethan other residents. A study of Maryland nurs-ing home residents found that those with be-havioral disorders required 35 percent more stafftime than those without behavioral disorders;however, the residents were not identified by diag-

nosis or cognitive status (2). To investigate thisquestion, OTA contracted with Rensellear Poly-technic Institute for a retrospective analysis ofdata collected in the development of a new reim-bursement system for New York State nursinghomes, called RUG-II. Initial findings showed thatnursing home residents with a diagnosis of de-mentia varied greatly in terms of limitations onactivities of daily living, behavioral disorders, andcare needs (22),

The New York State data included no measureof cognitive status, so the severity of dementiacould not be determined. Nevertheless, an attemptwas made to develop a rough index of severityby combining data on five survey items that maybe related to cognitive status—resident’s learningability, motivation, refusal to care for self, expres-sive communication, and receptive communica-tion/comprehension. (The wording of these itemsand the resident descriptors used to develop theindex of severity are presented in app. A.) Analy-sis of the New York State data using resident diag-nosis and the index of severity showed that per-sons with dementia were in general more impairedthan other residents in activities of daily livingand behavior, and that their level of impairmentbecame greater with increasing severity of thedementia. For example, a greater number of thosewith dementia required continuous supervisionwith eating or had to be fed by hand; 61 percentof those in the high severity group required assis-tance compared with about 6 percent in the lowseverity group. Similar results were obtained fordressing, bathing, toileting, bowel and bladdercontrol, and personal hygiene.

The data also showed that residents with a diag-nosis of dementia were more likely than othersto be wanderers, but that wandering was mostfrequent among those in the low and middle sever-ity groups and decreased in the high severitygroup. Other behavioral disorders, including ver-bal abuse, physical aggression, and regressive orinappropriate behavior also occurred more fre-quently among residents with dementia (22) (seeapp. A).

These findings suggest that although many nurs-ing home residents who do not have dementia re-quire substantial assistance with activities of daily


living, on average those with dementia requiremore aid. Because they are also more likely to havebehavioral disorders, residents with dementia gen-erally require more staff time. Thus, as nursinghome administrators and employees maintain,persons with dementia are frequently “heavy carepatients.” The more severe the dementia, the moreassistance is needed, although behavioral dis-orders appear to lessen at the highest level ofseverity. It should be noted, however, that thesedata were collected almost entirely in facilities thatdo not provide special services for persons withdementia. As discussed in chapter 7, some nurs-ing homes with special services for these personsreport decreased limitations in activities of dailyliving and behavioral disorders among theirresidents.

Quality of Care for ResidentsWith Dementia

Nursing homes have been criticized for a longlist of deficiencies that affect all residents, regard-less of cognitive status. The criticisms range fromwidespread complaints about inadequate atten-tion to residents’ emotional and social needs andneed for privacy to less frequent but serious com-plaints about dangerous medication errors andresident abuse and neglect (37,105). This assess-ment does not discuss these general problems innursing homes except to note that some deficien-cies are related to low levels of reimbursementfor Medicaid patients and to Medicare and Med-icaid regulations that focus on physical and nurs-ing care needs to the exclusion of emotional andsocial ones.

In addition to problems that affect all nursinghome residents, some care practices even in “good”nursing homes are inappropriate for persons withdementia:

Cognitive status is not routinely assessed. Asa result, the primary reason the person withdementia needs nursing home care is notidentified or evaluated. Although some resi-dents with dementia need nursing home carebecause of other physical problems, failureto identify cognitive deficits affects the qual-ity of their care overall.Most nursing home personnel are not trainedto care for people with dementia and are not

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aware of management techniques that couldlessen functional disability and behavioral dis-orders.Medications that could reduce agitation andother behavioral problems associated with de-mentia are frequently not used, sometimesbecause the physician is not aware of the be-havioral problems but more commonly be-cause he or she does not know which drugsto use or in what dosage. In some cases, indi-viduals with dementia are given the wrongdrug or excessive doses of drugs that increasetheir confusion and may cause extremedrowsiness and falls.Most nursing homes are designed to accom-modate residents who are relatively immo-bile, and there is seldom enough space forthose with dementia who may be physicallyactive until the late stages of their illness. Re-straints are frequently used to keep themfrom wandering or restless pacing, and somedevelop physical disabilities associated withforced immobility. Since exercise is seldompart of the daily routine, residents with de-mentia who are capable of physical activityoften become increasingly agitated.The regular practice of rotating staff fromone unit to another is a problem for personswith dementia who may be able to remem-ber staff they see every day but cannotremember over longer periods of time andmay become agitated when repeatedly con-fronted with caregivers they do not recognize.Increased noise and activity associated withshift changes, fire drills, or even activities thatare pleasant for other residents, such as aparade through the nursing home of school-children in Halloween costumes, can be agitat-ing for people with dementia. The disembod-ied voice heard over an intercom can also beconfusing.

Staff-to-resident ratios in most nursing homesmay be inadequate for residents with moderateto severe dementia. It is possible, however, thatin nursing home units designed specifically forpersons with dementia, good care can be providedwithout higher staff-to-resident ratios (see ch. 7).

Residents from minority groups may have par-ticular difficulty adjusting to nursing home carebecause of differences in attitudes, expectations,

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and typical behavior patterns. Those with dement-ing disorders may have even more difficulty be-cause they often cannot understand or adapt tothese differences. And those who are non-Englishspeaking are most severely affected for they can-not communicate with staff or other residents atall.

In many areas of the country, nurse’s aides areprimarily from minority groups, and some are re-cent immigrants. When the residents of the homeare predominantly of the majority culture, mis-understandings and tension can develop betweenthe staff and the residents. Residents with demen-tia may be particularly unable to understand andadjust to staff from minority groups or from othercountries. By the same token, however, such staffmembers are able to communicate with and re-late to residents from the same minority groupor country who might otherwise be isolated inthe facility. The care of non-English speaking resi-dents with language deficits associated with de-mentia is greatly facilitated if someone on staffspeaks the residents’ original language.

Residents with dementia not only experienceproblems in nursing homes but also create them.Due to deficits of memory and judgment, they maytouch, move, or take other residents’ possessions.In addition, their agitation, restlessness, noisiness,and occasional physical or verbal aggressivenesscan upset other residents. Some nursing homesplace cognitively impaired and cognitively normalresidents in the same room, sometimes becausethey fail to consider cognitive differences but moreoften because they believe that the cognitively nor-mal resident can help orient the cognitively im-paired one. Although the efficacy of this approachhas not been tested, other providers believe it isgenerally unfair to nondemented residents to beplaced in a 24-hour living situation with someonewith dementia and that residents with similar cog-nitive abilities should be roommates (1,13,121).Research on the effects of pairing residents withand without cognitive impairment is needed.

Despite the many problems of nursing homeresidents with dementia, the OTA survey of fam-ily caregivers found that 55 percent of those whohad experience with a family member living ina nursing home reported that the care was excel-

lent or good, and that only 16 percent reportedthat it was poor or very poor. Comparing thesefindings with the answers to other questions onthe survey indicates that families who had experi-ence with nursing homes had more positive atti-tudes about them than families who had no suchexperience (122). It is possible, however, that theseattitudes mask a feeling of guilt about havingplaced a family member in a nursing home.

Few examples of positive experiences of demen-tia patients in nursing homes are found in the liter-ature, but anecdotal evidence suggests that somepeople benefit from placement:

Mrs. P, suffering from Alzheimer’s disease, hadbeen living with her daughter, a tense woman whohad difficulty tolerating Mrs. P’s repetitious ques-tions and seemingly aimless “fussing around thehouse.” Over a period of months, the daughterbecame increasingly irritated and often spokesharply to Mrs. P, who grew more and more agi-tated in response. Finally, when Mrs. P began tohave occasional episodes of incontinence, herdaughter could tolerate the situation no longerand placed her in a nursing home.

Mrs. P had a pleasant personality, and despiteher increasing confusion, she was well liked bythe staff. She did not receive any special services,but she enjoyed weekly activities, such as bingoand sing-alongs, and was obviously content to sitnear the nurses’ station much of the day, talkingto staff and other patients and watching the go-ings on around the unit. Since staff expectationsfor her were not high, she felt more comfortablewith herself than she had in her daughter’s home.The daughter also felt calmer and was able to ex-press genuine affection for her mother during herfrequent visits,

Over a period of 5 years Mrs. P’s disease pro-gressed to the point where she was bedridden,and it was no longer possible to communicate withher. However, it was clear that her life in the nurs-ing home had been better than it would have beenat her daughter’s home.

Evaluating the experience with nursing homecare of a dementia patient and of his or her fam-ily is difficult partly because the patient is oftenunable to formulate or express feelings and thoughts.Some families maybe relieved that they no longerhave to provide 24-hour care, although many feelintense guilt about the placement. Research indi-


cates that quality of life for caregivers who placea relative with dementia in a nursing home im-proves in some ways and not in others (16). Thesemixed findings and the difficulty of distinguish-ing between the debilitating effects of progres-sive dementias and the effects of poor care maypreclude valid generalizations about the individ-ual and family experiences.

Access to Nursing Home Care

It is clear from the large number of residentswith dementia in nursing homes that such indi-viduals are regularly admitted. At the same time,several problems continue to restrict access forsome people with dementia:

Nursing homes are reluctant to admit some-one they believe will be difficult to care foror require disproportionate amounts of stafftime.In States where Medicaid reimbursementlevels are exceptionally low, nursing homesare reluctant to admit individuals who arelikely to stay long enough to deplete their pri-vate funds and become eligible for Medicaid.Nursing homes are especially reluctant to ad-mit Medicaid recipients who they believe willbe difficult to care for and for whom the Med-icaid reimbursement rate is low. (Case mixreimbursement systems that may reverse thisdisincentive are discussed in chs. 8 and 12.)In some States, Medicaid policies restrict eligi-bility for publicly funded nursing home carefor persons with dementia. (These problemsare discussed in detail in ch. 11.)

The limited supply of nursing home beds inmany States restricts access for all types of peo-ple and is a particularly severe problem in ruralareas. When bed supply is limited, access to nurs-ing home care for individuals with dementia maybe restricted disproportionately for the reasonsabove.

In general, the proportion of minority groupresidents in nursing homes is lower than wouldbe expected from their proportion in the popula-tion as a whole. That may reflect barriers to ac-cess (e.g., lack of information, discrimination, cost,and geographic location of the facilities), personalchoice, greater availability of informal home care,

or a combination of all three (10,54,61,80). No in-formation is available about the proportion of mi-nority individuals with dementia in nursinghomes.

Short-term nursing home placement to providerespite for family caregivers is an important serv-ice but one that is frequently not available (28,68).Nursing homes may be reluctant to provide short-term respite care because the costs of staff timeand administrative procedures associated with ad-mission and discharge are not adequately reim-bursed at the prevailing daily rates. In addition,beds used for respite care may be vacant morefrequently than other beds (46). Anecdotal evi-dence suggests that persons with dementia areoften disoriented, agitated, and difficult to carefor when first moved to any new setting. Theymay also be more likely to wander off during thefirst days after admission to a nursing home thanthey would be if they were accustomed to the fa-cility. Such behaviors upset more permanent resi-dents, particularly if they detract from staff at-tention to the “old timers” (32). For these reasons,nursing homes may be more reluctant to admitsomeone with dementia for short-term respitecare than other types of patients. Research isneeded to evaluate the frequency of these prob-lems and to develop potential solutions.

Board and Care Facilities

Board and care facilities are nonmedical resi-dences that provide room and board and 24-hoursupervision, Some also provide personal care anda variety of other services. They differ from nurs-ing homes in that they generally do not providenursing care. They differ from boarding homesand congregate housing facilities because they gen-erally provide 24-hour supervision. However,there are no clear-cut boundaries, and some fa-cilities might be classified differently by differ-ent observers. Some large facilities provide boardand care in some sections and nursing home carein others (59).

Board and care facilities vary in size from adultfoster care homes for one or two individuals, topersonal care homes and group homes that mayserve 3 to 10 or more, retirement homes andhomes for the aged that serve up to 100 or more,

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220 • Losing a Million Minds: Confronting the Tragedy of Alzheirner’s Disease and Other Dementias

and large domiciliary care facilities that serve sev-eral hundred residents. The number and type ofboard and care facilities vary greatly in differentStates. In addition, one study identified more than20 different names used for these facilities aroundthe country (67).

Board and care facilities also vary in the typeof care they provide. In adult foster care homes,for example, one or several residents maybe caredfor by one person who shops and cooks for themand assists with bathing and dressing. Care is in-formal, and the atmosphere may be homelike. Incontrast, residents of large domiciliary care facil-ities are cared for by a staff with a formal dailyschedule and structured activities. Between theseextremes, tremendous variety exists in patternsof care.

Board and care is sometimes referred to as “resi-dential care” or “community care,” while nurs-ing home care is called “institutional care.” Thefirst two terms have positive connotations in con-trast to the last one, but the positive image theyconvey may not apply to all board and care facil-ities. Although many small board and care facilitiesand some larger ones are homelike or residen-tial, larger facilities are often just as institutionalas any nursing home. Furthermore, some nurs-ing homes are closely involved with their com-munities, while some board and care facilities areisolated. Thus the distinction between “residen-tial” or “community care” in board and care facil-ities and “institutional care” in nursing homes cancamouflage real differences in atmosphere andpatterns of care in specific facilities. These termsare not used to differentiate board and care facil-ities from nursing homes in this report.

Little is known about the services provided inboard and care facilities. One study of small facil-ities (up to 13 residents) in Pennsylvania showedthe following services were provided: laundry (97percent); personal shopping (83 percent); clean-ing a resident’s room (80 percent); transportationto social activities (77 percent); handling money(65 percent); supervising or administering medi-cations (65 percent); assistance in bathing (37 per-cent); and assistance in dressing (26 percent) (75).Similar services are required by State programsthat regulate some types of board and care facil-ities (67).

No Federal Government agency has responsi-bility for collecting data on board and care facil-ities, and the definitions of these facilities usedby different researchers vary significantly. Ac-curate national figures are therefore not available.Several sources estimate that there are at least30 )000 board and care facilities in this country,providing beds for 350,000 or more people (67,98).Other sources estimate that if facilities that serveonly one or two residents are included, there maybe 100,000 or more (73). Still others believe thatboth these estimates are low and that, in fact, wehave no idea how many such facilities there are(84).

State and Federal programs pay for a signifi-cant portion of board and care. Although neitherMedicare nor Medicaid covers these services,many board and care residents receive FederalSSI benefits. In 1983, 34 States and the Districtof Columbia provided supplemental payments forSSI recipients who lived in board and care facil-ities (100). VA provides board and care in 16 largedomiciliary care facilities and pays for board andcare in State Veterans Homes and small grouphomes. In addition, some States (20 in fiscal year1984) use a portion of their Social Services BlockGrant funds for adult foster care. Total spendingfor this purpose is not known because States areno longer required to report how they spend BlockGrant Funds. In 1980, however, before Title XXfunding was converted to the Social Services Blockgrant, Title XX funds constituted about 4 percentof all public funding for board and care, whileSSI accounted for 73 percent and VA accountedfor 23 percent (15).

Residents With Dementia inBoard and Care Facilities

Much less is known about residents of boardand care facilities than about residents of nurs-ing homes, and no research has been reportedon those with dementia. Studies have generallyidentified three groups of residents: the aged, men-tally ill, and mentally retarded residents. One sur-vey found that among 230,000 board and care resi-dents for whom information was available, about45 percent were elderly, 37 percent were men-tally ill, 15 percent were mentally retarded, andthe remainder were substance abusers or persons


placed by the courts (67). The groups overlap,however, and some of the mentally ill and men-tally retarded residents are elderly, and vice versa.

Among the mentally ill and elderly residents arean unknown number of persons with dementia.One study of applicants for Pennsylvania facilitiesfound that 36 percent of the mentally ill groupand 38 percent of the elderly group needed su-pervision due to disorientation or memory impair-ment (74). Another study of board and care resi-dents in seven states found that about one-thirdwere disoriented or exhibited some memory im-pairment (17). However, no diagnoses are avail-able to determine the cause of these conditions.

Many residents of board and care facilities havepsychiatric diagnoses or a history of psychiatrichospitalization. For example, 27 percent of thosein board and care facilities in five States werefound to have a history of psychiatric hospitali-zation (58). Among residents of VA board and carefacilities, 55 percent of those in the large domicil-iary care facilities and more than 70 percent ofthose in smaller homes had a primary diagnosisof psychiatric disorder (15). It is not known howmany of the residents with psychiatric diagnosesor a history of psychiatric hospitalization actu-ally have a dementing disorder.

Quality of Care for ResidentsWith Dementia

Board and care facilities may be particularlyappropriate care settings for many individualswith dementia because they provide protectivesupervision but are often less restrictive than nurs-ing homes. Moreover, board and care usually costsone-third to one-half as much as nursing homecare. However, many of these facilities provideinadequate care (17)85)90)) and residents with de-mentia are particularly unlikely to be able to re-port or resist poor care. Among board and carefacilities identified in one national survey, about85 percent were licensed by the States, but licens-ing requirements often focus on physical plantand fire and safety code regulations rather thanquality of care. Furthermore, few States regularlyinspect these facilities [67). (Quality assurancestandards and inspection procedures for boardand care facilities are discussed in ch. 10.)

Although no research has been done on boardand care specifically for those with dementia,there are reports of good care in some facilitiesthat serve individuals with dementia along withothers. For example, one study (108) describedan adult foster care program in Hawaii that serveselderly clients, 38 percent of whom were signifi-cantly disoriented and 40 percent were inconti-nent of bowel and bladder. The study reportedpositive relationships between the foster familiesand the residents and improvements in self-careabilities and continence over time.

In contrast, anecdotal evidence suggests thatthere are instances of very poor care:

It

Mrs. N, an 89-year-old black woman with nofamily, was brought to the hospital emergencyroom in a state of severe malnutrition and de-hydration. She was confused on admission andremained confused even after her nutritional sta-tus had improved with treatment. investigationby the local Adult Protective Services Unit re-vealed that Mrs. N and two other elderly womanwith dementia had been living for an unknownperiod in a filthy apartment, cared for by a manwho took their SSI checks every month, visitedthem daily during the week and brought themfood, but apparently left them entirely alone onweekends. None of the women had relatives whovisited them, and while little specific informationcould be obtained about their care, their physicalcondition suggested that they had received littlecare and little to eat.

is not known how often such situations occur.

When board and care is provided by one per-son, changes in that individual’s physical or men-tal health can jeopardize the safety and continu-ity of care for residents, just as changes in a familycaregiver’s physical or mental health can jeopard-ize the care of a person with dementia at home.For many board and care facilities, there is noestablished procedure for notifying a relative ofthe resident or another responsible person whensuch problems arise.

Access to Board and Care Facilities

Access to board and care facilities for all kindsof people is limited by lack of information aboutthem. Although some facilities, especially largeretirement homes and VA domiciliary care facil-


ities, are well known in their communities, othersare largely unknown, even to health care and so-cial service providers. The OTA survey of familycaregivers found that 55 percent did not knowwhether board and care was available in theirarea—a larger proportion than those who did notknow about the availability of other long-term careservices (122). Some States have case managementprograms that place people in board and care fa-cilities, and some continue to monitor resident ad-justment after placement (59). However, these pro-grams are often limited to certain types of facilitiesand certain types of people, particularly mentallyretarded individuals and those who receive pub-lic funding.

The cost of board and care may also limit ac-cess for all kinds of people, including those withdementia. Although board and care is considera-bly less expensive than nursing home care, it oftencosts more than the individual’s social security orSSI benefit and any State SSI supplement (83).

In some localities, there are no board and carefacilities. For example, one survey of six Statesidentified several rural counties without any suchfacilities (76). Lack of SSI supplements for boardand care in some States and extremely low SSIsupplements in other States discourage the devel-opment of these facilities, thus limiting access tothis form of care for all types of people (67,85).

For someone with dementia, access may be re-stricted because providers sometimes refuse toaccept residents with behavioral problems or in-continence. The six-State survey cited above foundthat 35 percent of board and care operators re-fused to admit people with behavioral problems,night wanderers, and people with bowel or blad-der problems (31).

Little is known about minority group access toor use of board and care facilities. Some researchsuggests that minorities may be excluded fromspecific kinds of facilities. For example, few blackpeople live in homes for the aged (12). In contrast,many board and care providers, especially in smallfacilities, are black, at least in some localities. Inthe Pennsylvania domiciliary care program, 30percent of the providers but only 13 percent ofthe residents were black (76). No information is

available about access to or use of board and carefacilities by Hispanic elderly or other minorities.

Home Care

Home care services include medical, social, andsupportive services provided in someone’s home.They range from complex, technologically sophis-ticated interventions, such as the administrationof intravenous antibiotics and nutritional support,to relatively simple interventions, such as home-delivered meals. Between these extremes are serv-ices such as skilled nursing care, physical ther-apy, speech therapy, occupational therapy, homehealth aide, personal care, homemaker, paid homecompanion, and chore services. (These serviceswere defined earlier in table 6-l.)

Family caregivers who responded to the 1985OTA survey said that each home care service theywere asked about was important for their familymember with dementia:

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96 percent said that a paid companion whocan come to the home a few hours each weekto give caregivers a rest is essential, very im-portant, or important;94 percent said that home health aideservices-that is, a person paid to provide per-sonal care such as bathing, dressing, orfeeding—are essential, very important, or im-portant;93 percent said that a paid companion whocan come to the home and provide overnightcare is essential, very important, or impor-tant; and87 percent said that visiting nurse services-aregistered nurse to provide nursing care—are essential, very important, or important(122).

Unfortunately for persons with dementia andtheir families, some of these services do not cor-respond to the services usually funded or providedby public programs. Although some families canpay privately for home care services, the long du-ration of dementing illnesses and thus the longperiod during which services are needed meanthat families must often turn to publicly fundedservices or do without.


Federal funding for home care is provided byMedicare, Medicaid, the Social Services BlockGrant, Title III of the Older Americans Act, andVA. Medicare is the largest payer for home care,and Medicare expenditures for home care havegrown rapidly during the past 10 years. However,in 1983 they still constituted only 2.7 percent ofMedicare spending (88). Medicare is a medical in-surance program, and its coverage of home careis limited to the following medically related services:

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part-time or intermittent skilled nursing care;physical therapy, speech therapy, and occupa-tional therapy;medical social services provided under thedirection of a physician;medical supplies and equipment (other thanmedicines); andpart-time or intermittent home health aideservices.

Medicare services must be prescribed by a physi-cian and provided by an agency certified to par-ticipate in the program, of which there were 5,237in 1985 (35).

Federal regulations do not restrict the numberof home health care visits that can be covered andthe period of time over which they may be re-ceived, but because of the requirement thatMedicare-covered home health care services mustbe “intermittent,” daily visits for more than 2 to3 weeks require additional documentation by aphysician. Home care providers complain thatsome Medicare intermediaries who handle reim-bursement routinely deny payment for daily visitsthat extend for more than 2 to 3 weeks and thatthe intermediaries are erratic in their reimburse-ment decisions. Testifying before the Subcommit -tee on Health of the Senate Finance Committee,the director of a home health care agency stated:

A visiting nurse association in the Southwestwas denied all visits to an 80-year-old Alzheimer’sdisease victim for March and April after being re-imbursed for daily visits in previous months. Thenthe intermediary turned around after denyingthese two months, and paid for two additionalmonths of daily visits . . . there is no consistencyat all in those types of decisions.

The patient had [decubitus] ulcers. I have thepictures here . . . I would like to enter these pic-

tures in with our testimony in the record. [Tenpictures of severe decubitus ulcers are submitted.]You cannot look at these photos and not see thatthis man had the need for the daily visits; andthe , . . intermediary looked at the pictures anddenied the visits anyway (103).

For many persons with dementia, home healthaide services are the most useful Medicare-coveredhome care service. Covered services include assis-tance with medications and exercise; personalcare, such as bathing, dressing, and feeding; andhomemaker services when these can be shownto prevent or postpone placement in a nursinghome or other institutional setting. To be eligi-ble, however, the patient must also need skillednursing care, physical therapy, or speechtherapy—a condition that many with dementia donot meet. Using a home health aide as a paidcompanion-one of the services considered essen-tial by many family caregivers—is not legitimatelycovered by Medicare.

Studies by the General Accounting Office andthe Health Care Financing Administration indicatethat Medicare reimbursement for one-fourth toone-third of all home health care claims was orshould have been denied—sometimes because theindividual was not eligible for such services,according to program regulations, but more oftenbecause the person received too many visits(91,109). It is not known how many individualswith dementia actually receive any Medicare-covered home health care services or how manyreceive services for which reimbursement is laterdenied.

Statistical analysis of the characteristics of anational sample of people receiving Medicare-cov-ered home health care services indicates that sixclinically distinct groups can be identified (56).Four of the groups generally do not include cog-nitively impaired people:

1. people with acute medical problems such ascancer;

2. people with hip or other fractures;3. people with acute and chronic medical prob-

lems and limitations in self-care abilities; and4. people with severe circulatory and respira-

tory problems.


The other two groups, which do include cogni-tively impaired people, are:

5. people who have many chronic medical con-ditions, including senility and stroke, but fewacute or severe conditions and few limitationsin self-care abilities; and

6. people with severe neurological impairments,including senility and stroke, and significantdifficulty in self-care abilities.

Among all six groups, group 5 received thelowest amount of Medicare reimbursement forhome health care services, while group 6 receivedthe highest amount —an average of six times asmuch. The primary differences between the twogroups are the absence or presence of acute med-ical care problems and limitations in self-care abil-ities. These findings suggest that persons with de-mentia and with acute medical problems andsevere limitations in self-care abilities may receivesubstantial Medicare reimbursement for homehealth care services, and that those with feweracute medical problems and fewer limitations inself -care abilities probably receive much less. Thelatter group may be among home care recipientsfor whom reimbursement is frequently denied.

Medicaid also covers home health care services,although in 1983 they accounted for less than 2percent of all spending in the program (88). WithinFederal guidelines, States determine what serv-ices their Medicaid programs cover, and tremen-dous variation exists. Although some States havelegislative, regulatory, and administrative policiesthat make a range of services available to Medicaid-eligible people, others do not (14). Federal regula-tions require State Medicaid programs to coverskilled nursing care and home health aide serv-ices. Personal care is optional; as of 1983, only25 States and the District of Columbia coveredit (95). Even so, three-quarters of Medicaid homecare expenditures were for personal care (18). AllMedicaid-covered home care services must be or-dered by a physician, and home health aide andpersonal care services must be supervised by alicensed nurse.

In many States, home health care services cov-ered by Medicaid match the needs of someonewith dementia more closely than those coveredby Medicare; however, only people who meet Med-

icaid financial eligibility criteria can receive Medi-caid-covered services. The criteria include limitson income and assets that vary among States butare low everywhere and extremely low in someStates. As a result, even where Medicaid coversthe home care services for a person with demen-tia, the allowable income and asset levels are solow that it is difficult to support the person inthe community. When a spouse is involved, he orshe must also live at these low income and assetlevels (see ch. 11 for further discussion of thisproblem),

In 1981, Congress authorized the Medicaid 2176waiver program to allow States increased flexi-bility in the home care services they provide. Un-der this program, States may provide home healthaide, homemaker, personal care, and respite serv-ices as long as these services are said to preventnursing home placement. States may target theexpanded services to specific areas and to certaingroups of people instead of making them avail-able statewide and to all Medicaid-eligible indi-viduals.

As of April 1985, 95 waiver applications hadbeen approved: 50 include services for the agedand disabled and 4 including services for the men-tally ill. Among waiver programs for the aged anddisabled, 11 included home health aide services,26 included homemaker services, 18 provided per-sonal care, and 24 provided respite care (87). Thenumber of persons with dementia who receiveservices through these programs is not known.Since recipients must meet Medicaid financial eligi-bility requirements, however, services are gen-erally available only to those with low income andassets. In some States, individuals with income upto three times the SSI level in the community areeligible for 2176 waiver benefits, but they musthave medical expenses higher than the differencebetween their income and the SSI benefit level(see ch. 11 for a description of the 2176 waiverprogram).

Funding for home care services through the So-cial Services Block Grant and Title III of the olderAmericans Act is administered at the State andlocal levels, and little information is available aboutservices provided and the financial or other fac-tors used to determine eligibility. Although many

Ch. 6—Long-Term Care Services and Settings: An Introduction ● 225

States use these funds to provide personal care,homemaker, and chore services not covered byMedicare or Medicaid, they are generally insuffi-cient to meet demonstrated need (27,28,88). Again,the number of persons with dementia who re-ceive home care services through these fundingsources is not known.

VA provides relatively little home care comparedwith the amount of hospital, nursing home, andboard and care services it provides. Only 30 of172 VA Medical Centers provide home care serv-ices, and veterans who live far from these centersdo not have access to VA home care. Estimatesfor fiscal year 1985 indicated that about 15,000veterans would receive home care, but the needfor these services is much greater. For example,VA figures indicate that 460,000 veterans will needhome care services by 1990 (1 I 1). No breakdownof these figures for veterans with dementia isavailable.

Persons With Dementia ReceivingHome Care Services

As indicated, the number of persons with de-mentia who receive federally funded home careservices is not known, and OTA is unaware ofany national or State data on the number whoreceive any publicly or privately funded home careservices, The eligibility criteria for relevant Fed-eral programs discourage identification of thisgroup by focusing on different types of needs:medical, skilled nursing, and health-related needs(Medicare, Medicaid, VA); social service needs (So-cial Services Block Grant); or age-related needs(Title III of the Older Americans Act). Althoughseveral national, State, and community surveysinclude measures of cognitive status and infor-mation about service utilization (52), these datahave not yet been analyzed to determine the num-ber or proportion of persons with dementia whoreceive home care services or, conversely, theproportion of all home care recipients who havea dementing disorder.

Despite this lack of information, it is clear thatindividuals with dementia constitute a significantproportion of home care recipients, at least insome programs. For example, one study of 50 peo-ple who received home care services followinghospitalization in Little Rock, Arkansas, found that

48 percent had mild or moderate cognitive im-pairments, and 10 percent were severely impaired(24).

A person’s mental status may affect the efficacyand chance for success of formal home care serv-ices. National data indicate that mental status isone of the most important predictors of nursinghome placement. For example, analysis of datafrom the 1977 Health Interview Survey and the1977 National Nursing Home Survey showed that66 percent of elderly persons with diagnoses ofmental illness (including cognitive impairmentsand functional mental illnesses) are in nursinghomes. By contrast, only 22 percent of those withcancer, digestive, metabolic, or blood diseases anda smaller proportion of those with other diagno-ses are in nursing homes (119). Similarly, hospitaldata suggest that cognitively impaired persons aremuch more likely than other patients to be dis-charged to nursing homes (20,71). These findingsimply that persons with dementia are more diffi-cult to maintain at home than others who needlong-term care. They also raise questions aboutwhether formal home care services can be effec-tive in keeping someone with dementia at homeand whether it is more difficult to arrange homecare services for such a person. OTA is not awareof research that addresses these questions.

One characteristic that limits the usefulness ofhome care services for some persons with demen-tia is their need for 24-hour supervision. Althoughnot unique to this group, this need is probablyuniversal among persons with dementia. Whilesome families can provide 24-hour supervision,persons with dementia who have no family can-not be safely maintained at home without 24-hourformal care–a service that is seldom available.

One home health aide who works for a Medi-care-certified home health care agency has 11elderly clients, most of whom live alone. She visitssix of them daily and the others on alternate days,to help with bathing and dressing, and—for thosewho live alone—shopping, cooking, and otherhousekeeping chores.

Agency policy is that the home health aides donot visit clients who live in rural areas on dayswhen the county schools are closed because ofsnow. The aides have been told that their serv-ices are intended to be “part-time and intermit-tent,” as required by Medicare regulations and


Photo credit: ADRDA and Peter Carrel, Photosynthesis Productions, Inc.

Some families are able to provide 24-hour care for arelative with dementia.

that their clients are not supposed to need 24-hourcare.

On this “snow day,” however, the aide decidesto visit one of her clients anyway. The client isconfused, and the aide is always worried abouthow she will manage between the aide’s dailyvisits. In good conscience, the aide cannot imaginefailing to check in on the woman. It is not the aide’sdecision whether or when the woman should beplaced in a nursing home, and in fact her instruc-tions do not mention the woman’s increasingconfusion-only her need for assistance with bath-ing, dressing, shopping, and cooking.

Data from the 1979 Home Care Supplement tothe National Health Interview Survey indicate thatindividuals who need supervision plus assistancein activities of daily living and medical care useformal home care services more often than thosewho need only assistance in activities of daily liv-ing and medical care (79). Further, some 56 per-cent of those 65 or older who needed home carealso needed supervision all or most of the time(78). However, it is now known how many of thesepeople had a dementing disorder. Analysis of thesedata in terms of the cognitive status of home carerecipients might clarify the relationship betweendementia, the need for 24-hour supervision, andthe use of formal home care services.

For many years it has been believed that homecare services can help people who need long-termcare remain in their homes and avoid nursinghome placement, thus reducing expenditures fornursing home care, Many studies have tested thishypothesis, and although some are methodologi-cally flawed, analysis of the findings indicates thathome care services do not, in general, substitutefor nursing home care. Nor are home care serv-ices generally less expensive than nursing homecare, although they often improve the quality oflife for those who remain at home (36,93,117).

Analysis of the reasons for these unexpectedresults is beyond the scope of this assessment.However, it appears that none of the studies con-sidered the effect of the individual’s cognitive sta-tus on whether home care services prevent in-stitutionalization. One recent study indicated thatcaregiver characteristics and caregiver well-beingare more important predictors of placing some-one with dementia in a nursing home than anycharacteristic of the person (16). However, the per-son’s cognitive status could affect caregiver well-being or, alternatively, the emotional or behavioralcharacteristics associated with dementia could beintervening variables that affect caregiver well-being and thus decisions about placement. Fur-ther research is needed on the factors that pre-dict institutionalization of persons with demen-tia and therefore the potential impact of homecare services on such decisions.

Quality of Home Care Services forPersons With Dementia

Several problems limit the quality of home careservices for persons with dementia:

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The services most needed—paid companion,homemaker, personal care, and 24-hour su-pervision-are frequently not available. Homecare services that can be used for respite careare particularly difficult to find (28,40,68).Many of the people who provide home careservices are not trained to work with indi-viduals with dementia (68), and they may cre-ate more problems for the patient and theprimary caregiver than they solve.


● There are few standards or procedures formonitoring quality of home care services foranyone, particularly someone with dementia,

In addition, different expectations about the roleof the family and the role of the paid home careworker can cause problems. Although there maybe little disagreement about the role and respon-sibilities of a nurse, physical therapist, occupa-tional therapist, or speech therapist who provideshome health care, the responsibilities of a homehealth aide who provides personal care andhomemaker services may be difficult to distinguishfrom those of the family. This lack of clear rolesand responsibilities can lead to tension. Home careworkers sent out to provide home health care maybecome upset by a family’s requests or demandsfor services that do not match the worker’s jobdescription. Likewise, family caregivers may be-come upset when services they want are not pro-vided (41). Families and home care workers canalso disagree about how much help the patientneeds (32).

Close supervision of home care workers by theagency is virtually impossible, and families com-plain that some of these employees do not do theirjobs. For example, one woman told the Massachu-setts Governor’s Committee on Alzheimer’s Dis-ease about a home health aide who seldom showedupon time, and when she finally arrived did littlemore than watch the woman care for her mother(27). Anecdotal reports indicate that some homecare workers do not show up at all or merely sitand watch television. Theft, neglect, and exploi-tation of cognitively impaired people by home careworkers have also been reported. Although it isnot known how often such problems occur, theyare clearly a cause of concern, especially for fam-ilies who live a considerable distance from the per-son receiving the care (47).

Access to Home Care Services

In many areas, access to formal home care serv-ices by persons with dementia can be limited bylack of any home care services, lack of appropri-ate services, lack of funding, and fragmentationof the service delivery system. Home care serv-ices of all kinds are particularly difficult to obtainin rural areas. National data indicate that elderly

people who need home care services do withoutthem more frequently in farm areas than in ur-ban, suburban, or rural, nonfarm areas. At thelevel of ADL impairment at which informalcaregiving is usually augmented by formal homecare services, almost twice as many people dowithout formal services in farm areas than in allother geographic locations (79). These findings arenot specific for persons with dementia, but theKansas Alzheimer’s and Related Diseases TaskForce has documented the difficulty of findinghome care services for such persons in rural areasof the state (40).

Problems in obtaining appropriate home careservices have been discussed throughout this sec-tion. One overriding problem is the emphasis onmedical and skilled nursing services in Medicare,Medicaid, and VA home health care programs, asopposed to the personal care, supervision, andsocial services most often needed by persons withdementia. A second problem that has receivedalmost no attention concerns home care servicesfor different ethnic, cultural, and socioeconomicgroups. When services are provided in the home,differences among groups and individuals inlifestyle, expectations, attitudes, and patterns ofinterpersonal behavior are particularly salient andcan affect acceptance of the services, the level oftrust and cooperation that can be achieved be-tween the paid home care worker and the patientand family, and the overall efficacy of the serv-ice. Adaptations of home care services for differ-ent ethnic, cultural, and socioeconomic groupsare needed.

The cost of services can also limit access, andmany home care services are expensive. onewoman told the Kansas Alzheimer’s and RelatedDiseases Task Force:

I was told that I might be able to get someonein for an hour a day—that might be long enoughto bathe and dress my husband. When I askedhow much I was told it would cost $4o an hourfrom the minute they left their office until theyreturned (4o).

Some agencies provide home care services on asliding fee basis, but the client’s share of the costmay still be high (64). As a result, some familieshire maids to provide home care services. One


study showed that 41 percent of caregivers of per-sons with Alzheimer’s disease hired private maidsor sitters because it was cheaper than paying forhome care services from a home health careagency. Most of the other caregivers did not useany home care services (25).

A final and serious problem that affects accessto home care services is the complexity and frag-mentation of the service delivery system. Althoughin some localities there are no agencies to pro-vide home care services, in other areas there aremany such agencies, each providing a variety ofservices with differing eligibility requirements andreimbursement procedures (114).

The complexity of Federal regulations on whathome care services are covered, who can receivethem, and who can provide them is compoundedby interpretations of Federal Medicare regulationsby Medicare intermediaries; State legislation, reg-ulations, and administrative policies that determineMedicaid coverage and eligibility requirements;and State and local regulatory and administrativedecisions about the use of Social Service BlockGrant and Title III funds. In addition, some serv-ices are available through State and local programsunrelated to Federal funding sources, or throughprivate nonprofit groups, each of which has itsown eligibility, coverage, and reimbursementguidelines.

Several States have created programs to pooland administer funds that are available for homecare. Examples are the Massachusetts Home CareCorporations and the Maryland Gateway 11 pro-gram, Both provide home health aide, personalcare, and homemaker services using more liberaland flexible eligibility criteria than are applied else-where. The primary problem they face is inade-quate funding to meet the home care needs theyidentify (27,28). Thus even these programs arefrequently unable to provide appropriate homecare services for persons with dementia.

Adult Day Care Centers

Adult day care centers provide a range of health,mental health, and social services for physically,emotionally, and cognitively impaired and sociallyisolated people. The centers all provide some com -

mon services, but they differ in their emphasisand the clients they serve, Several types have beenidentified in the literature (33)118). Some empha-size medical and rehabilitative services, such asphysical, occupational, and speech therapy, andserve people who are recovering from physicalillnesses such as stroke. Other centers emphasizepersonal care, supervision, socialization, and activ-ities, and serve mentally retarded and develop-mentally disabled adults or frail elderly personsand those with dementia. A third type emphasizesmental health services, supervision, socialization,and recreation, and serves primarily mentally illpeople, some of whom have been discharged frompublic and private mental hospitals. The threetypes overlap, and some analysts have questionedhow closely this typology reflects real differencesbetween existing centers (8).

Before 1972, there were fewer than 10 non-psychiatric adult day care centers in the UnitedStates. By 1977, that number had grown to 300,and by 1982-83, there were between 700 and 1,000centers serving 15,000 to 20,000 people (33,55,65).A 1985-86 survey sponsored by the National In-stitute of Adult Daycare (NIAD) received responsesfrom 847 centers, and the report suggests that1,200 is a conservative estimate of the numberof existing centers (8).

Unlike nursing homes and home health careagencies, adult day care centers have developedlargely without Federal regulation. As a result,they vary greatly in physical setting, clientele, staff-ing, mode of operation, and services provided. Tosome extent, this diversity reflects local needs andresources (7).

Adult day care centers may be located in build-ings used solely by the center or in hospitals, nurs-ing homes, senior centers, churches, schools, com-munity centers, clinics, housing for the elderly,private homes, or life care communities, A feware open 7 days a week, but most are open 5 daysa week (7). Many clients do not attend every day,however; one study of four centers found thatthe average days of attendance ranged from 48to 114 days per person per year (82). Althoughthe services provided in different centers vary,as mentioned earlier, many centers have similargoals–to avoid premature or inappropriate institu-


tional placement, to maximize client functioning,to provide respite for family caregivers, and toprovide supportive services in the community (8).

According to the NIAD survey, the average costof adult day care is $27 to $31 a day (8). However,some programs cost significantly more (65). Medi-care does not cover adult day care per se, but maycover medical or skilled nursing care and physi-cal and speech therapy provided for adult day careclients. Adult day care is an optional service un-der Medicaid, and some states cover it either asa separate service or as part of clinic or outpatientservices (15). Coverage is usually limited to centersthat provide medical and rehabilitative servicesas opposed to those that emphasize personal care,supervision, and activities (45). Financial eligibil-ity criteria further limit Medicaid-covered adultday care to persons with low income and assets.

Nevertheless, the NIAD survey found that Med-icaid and participant fees were the two mainsources of funding for adult day care centers (8).Adult day care is an allowable service under theMedicaid 2176 waiver program, and as of April1985 it was a part of 42 of the 95 approved 2176waiver proposals –26 for the aged and disabled,14 for the mentally retarded and developmentallydisabled, and 2 for the mentally ill (87).

Some States (29 in fiscal year 1984) use SocialService Block Grant funds to support clients inadult day care (104), and some use funds allocatedunder Title 111 of the Older Americans Act. Otherstate and local funds and contributions fromUnited Way organizations, churches, synagogues,service clubs, and other charity groups also sup-port these centers (45).

As of 1985, the VA provided adult day care atfive medical centers. Veterans with service-con-nected disabilities are eligible for adult day carefor an indefinite period, but those with non-serv-ice-connected disabilities are limited to 6 monthsof this care (43).

Persons With Dementia inAdult Day Care Centers

A 1984 survey of adult day care centers foundthat about 45 percent served persons with demen-tia (55), The recent NIAD survey did not ask specifi-

cially about dementia, but it did ask about char-acteristics of clients that may be related todementia, such as supervision needs and inconti-nence. The survey found that about 45 percentof clients require supervision, and about 20 per-cent require constant supervision. In addition,about 8 percent are incontinent to the degree thatthey require changing during the attendance day(8). Many individuals in each of these categoriesmay have dementing disorders.

Although the majority of adult day care centerscontinue to serve a mixed population, an increas-ing number are specializing in services for spe-cific client groups (65). Specialization may evolveas providers encounter problems in serving clientswith differing needs and capabilities or may oc-cur in response to community needs (23). Adultday care centers designed specifically for personswith dementia are discussed in chapter 7.

The Alzheimer’s Disease and Related DisordersAssociation (ADRDA), families, and many healthcare and social service providers are enthusiasticabout the role of adult day care in the treatmentof persons with dementia because they believeit can do three things: improve quality of life forthese persons; provide respite for family care-givers; and perhaps postpone the need for nurs-ing home care in some cases. The efficacy of adultday care in attaining these objectives for personswith dementia is discussed in chapter 7,

Research not specifically focused on personswith dementia indicates that adult day care pro-grams can and do serve quite severely debilitatedpersons. For example, one study compared clientsin an adult day care center and residents of a nurs-ing home and found that the adult day care clientswere more impaired in physical and mental healthand self-care abilities than the nursing home resi-dents, but the latter had more limited social andfinancial resources (166).

Although these findings indicate that severelydebilitated clients can be maintained in adult daycare centers, it is unclear whether adult day careis a substitute for nursing home care. Analysisof seven studies that addressed this question in-dicates that these centers were generally servinga different group of people than those who enternursing homes, that the cost of adult day care was


not less than the cost of nursing home care, butthat like home care clients, people in adult daycare had higher morale than those in nursinghomes (33).

Access to Adult Day Care

Lack of a stable funding source for adult daycare is a pervasive problem that limits access forindividual clients and discourages the developmentof new centers (27,33). As discussed, many pub-lic programs and private groups provide somefunding for adult day care. Still, among all long-term care services, adult day care is one of thetwo most commonly associated with client feesfor service (the other is homemaker services) (15).At $27 to $31 a day, adult day care is clearly tooexpensive for most clients and families to affordon a regular basis.

Lack of centers also restricts access. Rural areasare particularly unlikely to have such centers be-cause of low population density and lengthy traveltime for clients. Innovative models of service de-livery based on the satellite site concept have beendeveloped (30), but OTA is not aware of any re-search that evaluates their effectiveness for per-sons with dementia.

NIAD survey data indicate that about half thecenters that responded serve some black clients,and in these centers an average of 15 percent ofall clients are black. About one-fourth of all centerssaid they serve some Hispanics, and in thosecenters 2 to 3 percent of the clients are Hispanic.Ten percent of centers said they serve some Na-tive Americans, and 12 percent said they servesome Asians and Pacific Islanders (8). No infor-mation is available about why some centers serveno minority group clients.

A final factor that restricts access to adult daycare is the admission and discharge policies ofsome centers. The NIAD survey found that manycenters determine eligibility on a case-by-case ba-sis. However, a minority reported that they denyadmission to people who are incontinent, disrup-tive, combative, psychotic, too confused, or in needof constant supervision [8). Clearly, many personswith dementia would not be admitted to thesecenters.

Community Mental Health Centers

Community mental health centers (CMHCs) areagencies that provide a range of mental healthservices to persons of all ages, primarily on anoutpatient basis, although some also provide short-term inpatient care. CMHCs are not usually in-cluded in discussions of long-term care services.They are included here because they are local sitesof mental health expertise—an element clearlylacking in the care provided by most long-termcare facilities and agencies serving persons withdementia. Elderly people, the group that includesthe vast majority of persons with dementia, havegenerally been underserved by CMHCs. However,some CMHC services regularly provided to otherage groups and patient types, such as assessment,counseling, and support groups for patients andfamilies, are needed by persons with dementiaand not available in many communities.

Outpatient mental health centers have existedin this country for a long time, but the Federalprogram that created CMHCs was initiated in 1963with passage of the Community Mental HealthServices Act and subsequent authorization of Fed-eral funding for the centers, Special services forelderly people were not required in the originalact, and few such services were provided. How-ever, amendments to the act passed in 1975 and1978 mandated increased services for that group.In 1980, legislation was passed to provide addi-tional funding for CMHCs with special programsfor the elderly, but that legislation was never im-plemented because direct Federal funding forCMHCs and other programs was replaced by theAlcohol and Drug Abuse and Mental Health Serv-ices Block Grant, to be administered by the states.Federal funding for the block grant in its first yearwas 25 percent lower than combined Federalfunding for CMHCs and substance abuse pro-grams in the previous year (3,62,92).

No information is available about the numberor proportion of persons with dementia servedby CMHCs. The proportion of elderly personsamong all clients served by these agencies in-creased from 3.4 percent in 1971 to 6 percent in1982—still far below the proportion of elderly peo-ple in the population as a whole. The proportionof elderly people served by CMHCs did not change


from 1981 to 1984, but many CMHCs report a de-crease in special programs for elderly people since1981 (3,5).

Not all CMHCs that provide special services forelderly people also have special services for per-sons with dementia, but one study indicates thatthe two are often associated (51). The study foundthat CMHCs with special services for elderly peo-ple are five times more likely than other CHMCsto provide services for individuals with Alzhei-mer’s disease and their families. Those that alsohad staff trained to provide services for personswith dementia were more than 8 times as likelyto provide such services. And they were also morelikely to provide services in satellite sites, suchas nursing homes, senior centers, community resi-dential facilities, or in the patient’s home. Thusreported cutbacks in special CMHC programs forelderly people since 1981 could indicate that serv-ices for persons with dementia have also been cutback and that they are less frequently availablein settings where such persons are usually seenand treated. Interestingly, CMHCs responding tothe study cited above (51) reported that their mostimportant need was for information about mem-ory and cognitive problems in elderly people (50).

The change to block grant funding and the de-crease in Federal funding for CMHCs resulted inreduced staff and increased caseloads in manycenters, a decrease in the number of psychiatristsemployed in CMHCs, and an increase in client fees(39,62). These changes may have affected the avail-ability and quality of services for persons withdementia.

outpatient mental health services for personswith dementia could be provided by mental healthprofessionals who are in private practice, includ-ing psychiatrists, clinical psychologists, psychiatricsocial workers, and psychiatric nurses, but re-search indicates that such services are seldom usedby these patients. For example, the EpidemiologicCatchment Area survey in Baltimore found thatno one with cognitive impairment who was over65 had seen any mental health specialist in thepreceding 6 months (26). A 1978 study found thatfewer than 3 percent of the patients of mentalhealth professionals in private practice were over65 (107), and although this proportion has prob-ably increased in recent years, relatively few suchprofessionals treat elderly persons with dementia.

The original intent of the Federal legislation thatcreated CHMCs was that those centers would pro-vide mental health services and also would workwith other community agencies and private prac-titioners to create a coordinated system of men-tal health care at the local level. This latter aspecthas been particularly affected by decreases infunding, with the result that in many localitiesmental health services for all kinds of people arenow more fragmented (39).

Despite funding cutbacks, some CMHCs do pro-vide comprehensive mental health services forpersons with dementia and their families and out-reach to facilities and agencies in the communitywhere such persons are cared for (4,63). Analy-sis of how these services are organized and fundedcould provide a model of service delivery thatmight be duplicated in other CMHCs.

S E R V I C E D E L I V E R Y S Y S T E M S

Service delivery systems are methods for match- care options, and followup to monitor the indi-ing the needs of an individual with appropriate vidual’s adjustment and ensure that services areservices. Some are relatively simple, such as pro- provided regularly. Still others are based on agree-viding the person or family with a list of commu - ment among community agencies to designate anity agencies that they can use to select the serv - single agency as the entry point for long-term careices they need. Others involve comprehensive services or to use a common assessment instru -assessment of an individual’s needs, counseling ment to evaluate client needs. Another type ofwith the person and family to evaluate different service delivery system is the social/Health Main-


tenance Organization (see ch. 12) and similar sys-tems that provide a range of long-term care serv-ices through a single agency or program.

Each of these methods and many others are be-ing used for persons with dementia and otherswho need long-term care. Although some havebeen analyzed extensively in terms of their effecton access, appropriateness, and cost of long-termcare services for all kinds of people, OTA is notaware of any research that compares alternatemethods of service delivery for persons with de-mentia.

The need for a service delivery system arisesin part from the fragmentation of long-term careservices at the community level and the complex-ity of Federal, State, and local programs that pro-vide and fund such services. The three systemsthat provide services for persons with dementia—the medical or physical care system, the aging serv-ices system, and the mental health system—aregenerally disconnected. Gaps and overlappingservices within each and between systems arecommon, and providers in one system are oftenunaware of services in the other two.

In addition to these problems, some individualsand families need assistance in evaluating theirneeds before they can select appropriate services.Others need counseling and emotional supportto work through feelings of sadness, anger, andguilt associated with the patient’s condition andcare needs before they can evaluate long-term careoptions rationally or follow through on decisionsabout institutional placement or continued careat home.

Although the same problems affect everyonewho needs long-term care, several characteristicsmay intensify the problems for persons with de-mentia and their families:

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persons with dementia frequently do not un-derstand their condition and care needs andmay refuse services they need;persons with dementia frequently lack theability to evaluate care options, and familymembers or others must make important de-cisions for them (nursing home placement,sale of a home, etc.);there is no generally accepted assessment in-strument to measure their care needs;

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there is no generally accepted method ofevaluating their capacity to make decisions;andthey often come to the attention of health careand social service providers and communityagencies only when their need for servicesis desperate, and the assessment/referral/de-cisionmaking process frequently takes placein an atmosphere of crisis.

The need for improving in the service deliverysystem for persons with dementia is evident fromthe responses to the OTA survey of family care-givers. Many respondents did not know whetherhome care, board and care, respite, adult day care,or nursing home services were available. Likewise,almost half reported that they had difficulty find-ing a doctor who could adequately care for theperson with dementia. When asked about the mostimportant services, families identified the needfor assistance in locating people or organizationsthat provide care and for help in applying for Med-icaid, Social Security Disability benefits, SSI, andso on as the second and third most essential (fol-lowing only the need for a paid companion to givecaregivers a rest) (122).

The reports of several State Alzheimer’s diseasetask forces stress the need for good informationand referral systems (27,28)40). The experienceof the Massachusetts Governor’s Committee onAlzheimer’s Disease is instructive:

At the beginning of our examination of avail-able community services, one member was as-signed the task of calling facilities on a randomlist and asking if they had specialized services forAlzheimer’s patients. Without exception, the callerwas told that such specialized services existed.When questioned more specifically) most facil-ities failed to demonstrate any special capabilityto assist the Alzheimer’s client. In fact, in somecases, facilities which initially stated that they had“specialized units or services” were ill-preparedto assist an Alzheimer’s patient or family mem-ber (27).

Many different agencies and community serv-ice providers are involved in matching the needsof persons with dementia to available services.Hospitals play a major role in service delivery,sometimes because no other agency has been avail-able to serve this function. Anecdotal evidence


indicates that persons with dementia are fre-quently admitted to a hospital when family care-givers are no longer able to manage them, or whentheir ability to function independently has dete-riorated to such a low level that neighbors orothers insist that something must be done. In suchsituations, the person may or may not have anacute medical condition, but the primary (althoughsometimes unspoken) reason for hospitalizationis the need for a long-term care plan.

Hospital discharge planning units, often staffedby social workers, are primarily responsible fordeveloping a plan of care for patients who needlong-term institutional care or formal services athome. This process—which may involve assess-ment of the patient’s physical, emotional, and cog-nitive status and social supports; consultation withthe patient, the family, the doctor, nurses, andothers; and location of appropriate services andfunding-can be time-consuming. In the past, pa-tients sometimes remained in the hospital forprolonged periods while a discharge plan was de-veloped. Now, however, the Medicare Prospec-tive Payment System and other public and pri-vate programs that create incentives for shorterstays are reducing the time available for dischargeplanning in hospitals. Analysis of the impact ofthese changes on discharge planning for personswith dementia is needed.

Physicians, other health care providers, staff inagencies that serve elderly and disabled people,

C H A P T E R 6

1. Ablowitz, M., “Pairing Rational and Demented Pa-tients in Long-Term Care Facilities” (letter to theeditor), Journal of the American Geriatrics Soci-ety 31:627, 1983.

2. Abt Associates, Inc., “Analysis of the Maryland Pa-tient Assessment System With Emphasis on theNeeds of Behavior Problem Residents,” Washing-ton, DC, Jan. 11, 1985.

3. Action Committee To Implement the Mental HealthRecommendations of the 1981 White House Con-ference on Aging, Mental Health Services for theElderly: Report on a Survewy of Communituv Men-tal Health Centers, Vol. 1, Washington, DC, 1984.

4. Action Committee To Implement the Mental HealthRecommendations of the 1981 White House Con-

and many others are also involved in referringpersons with dementia to long-term care services.Staff in adult day care centers that serve personswith dementia and ADRDA staff and supportgroups frequently provide information aboutavailable services and assistance with decisionmak -ing for families of these patients.

Evaluation of alternate methods of service de-livery for persons with dementia is beyond thescope of this OTA assessment. Some of the ques-tions that need to be answered are:

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Which methods of service delivery are mosteffective?Are they are best served by a delivery sys-tem that focuses on persons with dementiaor by a system that serves all persons whoneed long-term care?What are the appropriate roles of families,voluntary caregiver support groups, and pub-lic and private agencies in the service deliv-ery system?

Some answers may be found on analysis of datacollected for the National Channeling Demonstra-tion project —a large-scale study of two modelsof service delivery funded by the U.S. Departmentof Health and Human Services—and other studiesof service delivery systems (52). Other answersmust await the outcome of new studies and dem-onstration projects.

R E F E R E N C E S

5.

6.

7,

8,

ference on Aging, Mental Health Services for theElder~v: Report on a Survey of Community Men-tal Health Centers, vol. H, Washington, DC, 1984.Action Committee To Implement the Mental HealthRecommendations of the 1981 White House Con-ference on Aging, Mental Health Sert~ices for theElderly: Report on a Sur\q/ of Community Men-tal Heahh Centers, Vol. 111, Washington, DC, 1986.Baldwin, B., RN, consultant, Crofton, MD, personalcommunication, May 18, 1986.Behren, R. V., “Adult Day Care: Progress, Prob-lems, and Promise,” Perspecti\7e on A@”ng 14(6):5-39, 1985.Behren, R. V., “Adult Day Care in America: Pre-liminary Report of the Results of the National In-


stitute of Adult Daycare/National Council on AgingSurvey, 1985 -86,” Washington, DC, July 1986.

9. Brody, E. M., “The Social Aspects of Nursing Home

10

11

Care, ” The Teaching Nursing Home, E.L.Schneider, C,J. Wendland, A.W. Zimmer, et al.(eds.) (New York, NY: Raven Press, 1985).Brody, J. A., and Foley, D. J,, “Epidemiologic Con-siderations, ” The Teaching Nursing Home, E.L.Schneider, C.J. Wendland, A.W. Zimmer, et al.(eds.) (New York, NY: Raven Press, 1985).Brody, S.J., and Magel, J. S., “DRG: The Second Rev-olution in Health Care for the Elderly, ” Journalof the American Geriatrics Society 32:676-679,1984.

12. Butler, R. N., and Lewis, M. I., Aging and MentalHealth (St. Louis, MO: C.V. Mosby Co., 1982).

13. CameIi, S., “Pairing Rational and Demented Pa-tients in Long-Term Care Facilities, Continued”(letter to the editor), Journal of the American Ger-iatrics Society 32:409, 1984.

14. Chavkin, D., “Interstate Variability in MedicaidEligibility and Reimbursement for Dementia Pa-tients, ” contract report prepared for the Officeof Technology Assessment, U.S. Congress, Wash-ington, DC, 1986.

15. Cohen, J., “Public Programs Financing Long-TermCare,” The Urban Institute, Washington, DC, draft(revised), January 1983.

16. Colerick, E.J., and George, L. K., “Predictors of 1n-stitutionahzation Among Caregivers of PatientsWith Alzheimer’s Disease,” Journal of the Amer-ican Geriatrics Society 34:493-498, 1986.

17. Dittmar, N. D., and Smith, G. P,, “Evacuation ofBoard and Care Homes: Summary of Survey Pro-cedures and Findings, ” Denver Research Institute,University of Denver, CO, Feb. 22, 1983.

18. Doty, P., Liu, K., and Weiner, J., “An Overview

19,

20.

21.

22.

of Long-Term Care, ” Health Care Financing Re-view 6(3):69.78, 1985.Fago, D., Veterans Administration, personal com-munication, June 9, 1986.Fields, S. D., MacKenzie, C. R., Charlson, M. E., etal., ‘(Cognitive Impairment, Can It Predict theCourse of Hospitalized Patients?” Journal of theAmerican Geriatrics Society 34(8):579-585, 1986.Foley, W.J., assistant professor, Industrial andManagement Engineering Department RensselaerPolytechnic Institute, Troy, NY, personal commu-nication, May 6, 1986.Foley, W .J., “Dementia Among Nursing Home Pa-tients: Defining the Condition, Characteristics ofthe Demented, and Dementia on the RUG-II Clas-sification Svstem, ” contract report prepared for

the Office of Technology Assessment, U.S. Con-gress, Washington, DC, 1986.

23. Frankel, E. R., Sherman, S. R., Newman, E. S., et al.,

24

25

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Ch. 6—Long-Term Care Services and Settings: An /introduction c 235

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Documents

Services and Settings: An Introduction