Unmet need among disabled elders: A problem in access to community long term care?

Sm. Sci. Med. Vol. 38, No. 7, pp. 915-924, 1994 Copyright0 1994 ElsevierScienceLtd Printed-in&at Britain.Allrights reserved 0277-9536194 56.00+ 0.00

Pergamon

UNMET NEED IN ACCESS

AMONG DISABLED ELDERS: A PROBLEM TO COMMUNITY LONG TERM CARE?

SHARON TENNSTEDT, JOHN MCKINLAY New England

Research

Institute,

9 Galen

Street,

and

LINDA KASTEN

Watertown,

MA 02172,

U.S.A.

Abstract-To more completely understand unmet need as an indicator of demand for long-term care, longitudinal data on a representative sample of disabled elders were used to track the extent, type, and predictors of unmet need(s) over a 4-year period. Unmet IADL needs were more common than unmet PADL needs with only l-2% reporting both types. Unmet needs appear to be temporary rather than persistent and are predicted by lack of an engaged (not necessarily unavailable) caregiving system. The data suggest that the rate of unmet personal care need rather than the rate of any unmet need represents a more accurate estimate of the number of elders for whom community long-term care services are critical to decrease risk of institutionalization. Key words-long-term

Projecting

the need

care, unmet

for long-term

care

need, disabled

services

elders

ings across these studies is hampered by differing definitions of unmet need and examination of different activities of daily living, the number of people represented by these rates is substantial enough to raise concerns. However, although based on representative samples of older people, these cross-sectional data allow only a limited examination of need for longterm care assistance. Functional disability and the receipt of assistance are likely to fluctuate over time, presenting the possibilities of regaining function, of needs being met at some point in the future, or that new unmet needs will develop. Cross-sectional data cannot capture such dynamics that would form the basis for a more accurate projection of rate of unmet need. If rates of unmet need are going to be used to estimate need for formal long-term care services, longitudinal data mapping the pattern of unmet need over time would be more informative. This examination should include both extent and type (personal vs instrumental) of unmet need as well as any change in unmet needs over time. Frequency of types of unmet needs rather than an overall rate of unmet need will permit a more accurate assessment of future access, need and cost of long term care services. That is, the range of functional ability required for activities of daily living (ADLs) is great, and not all ADLs are of equal importance to functioning independently. Personal activities of daily living (PADL) such as eating, bathing, and toileting. are generally considered more critical for independent functioning than are the instrumental activities of daily living (IADL) such as housecleaning, shopping. and using transportation. Therefore, meeting needs for assistance with some ADLs is more critical than for other ADLs in maintaining community residence. Further, in terms of providing formal services in

in the

in a rapidly increasing older population continues to be of interest and concern to policy makers. Recently, estimates of unmet needs for assistance with daily living activities among disabled elderly have been used as one indicator of this need or demand for community or in-home services [ 11. However, to date, relatively little regarding unmet need has been reported in the literature. What has been reported are prevalence estimates derived from two national data sets, the National Long Term Care Survey and the National Survey of Families and Households. Three reports estimating prevalence of unmet needs for long-term care assistance have been published since 1988. One of the first was a report by the U.S. General Accounting Office to the Select Committee on Aging, Subcommittee on Health and LongTerm Care of the House of Representatives [I]. Using data from the 1982 National Long Term Care Survey, the GAO reported that, despite receipt of care from family and friends, almost 40% of disabled elderly needed additional help with personal (5%) or instrumental (34%) activities of daily living. Manton [2] using data from the 1984 National Long Term Care Survey, reported a similar rate of unmet need for personal care (34.6%), with the level of unmet need strongly correlated with disability level and increased age. No data were reported regarding unmet needs for instrumental activities of daily living. Conversely, Montgomery and Hirshorn [3] estimated unmet needs for instrumental tasks of housekeeping and transportation but not for personal care. Using data from the 1987-88 National Survey of Families and Households, they reported that 22.3% of elders reporting poor health were not receiving help with either of these activities. While comparison of findUnited

States

915

SHARCINTENNSTEDT et ul

916

response to unmet needs, personal care, for example, requires different service delivery mechanisms and costs more than meeting a need for mobility assistance outside the home. Finally, investigation of unmet needs over time will permit assessment of whether unmet needs are persistent or temporary, and identification of specific unmet ADL needs likely to persist for which community long term care services might be needed. Then, the characteristics of those disabled elders likely to have continued unmet need should also be determined to facilitate effective targeting of in-home services to meet unmet needs. This paper reports baseline and follow-up data from an ongoing longitudinal study of a communitybased, linked random sample of disabled older people and their informal caregivers in Massachusetts to track unmet needs over a four-year period of time. More specifically, the following questions are addressed: l

l

l

l

l

What are the types and extent of unmet needs among functionally disabled older adults? Are unmet needs (including specific types) temporary or persistent over time? What factors predict unmet need-at any point in time? Is change in statuseither functional or caregiving arrangement-related to development of unmet need over time? Do unmet needs contribute to likelihood of nursing home admission?

METHOD

This study offers the following advantages for an investigation of unmet need: (I) a representative sample of functionally disabled elders with varied impairments; (2) a valid and reliable measure of functional disability; (3) detailed data regarding the type and amount of both informal care received from family and friends, and formal services utilized; and (4) two points of measurement, four years apart. In 1984. a geographically stratified random sample of 5855 individuals age 70+ was drawn from the local census lists of I9 cities and towns in Massachusetts. The sample was drawn in two stages, using cities/towns as the primary sampling unit (PSU), then sampling within the PSU’s selected. This strategy ensured inclusion of elders living in urban, suburban and rural areas of the state. Respondents were interviewed at baseline (1984-85) and three followup contacts (1988889, 1989-90, 1991). At each of these four points of contact, elder respondents were screened for functional disability status using the Hebrew Rehabilitation Center for the Aged (HRCA) Vulnerability Index [4]. This IO-item index addresses the issues of mobility, personal (PADL) and instrumental (IADL) activities of daily living, orientation, and activities that. when appropriately scored, provide a logical and clinically validated system for

simultaneously weighting a complex set of functional deficits and determining whether or not a person is disabled (but not the extent of disability). Using this index, a person was considered disabled if he or she reported one of the following situations: (a) difficulty performing at least two IADL tasks; (b) difficulty with one IADL task and either use of a walker, four-pronged cane, or wheelchair or incorrect reporting of year; or (c) any one area above and either difficulty with dressing, health limitation of normal activity, or restricted mobility outside the home. When compared with actual clinical judgment. the index had high predictive validity (Y = 0.85) and has been tested for validity with several groups of noninstitutionalized elders [4]. Subsequent investigations have indicated that this tool consistently identifies the approximate 20% of elderly community residents who are functionally disabled (S. Sherwood and J. Morris, personal communication). At the time of first follow-up (198881989) 280 of the 632 (44.3%) elders determined to be disabled at baseline were still disabled and alive. Of this number, 235 were still residing in the community and 45 had been admitted to nursing homes. An additional 49 had been admitted to nursing homes but had died by follow-up. and 233 had died in the community (deceased = 44.6%). The remaining 70 consisted of 48 who were no longer disabled. I6 refusals, and 6 lostto-field or not interviewed until the next followup. The subsample of primary interest in this analysis consisted of those 235 disabled who were alive and community residing at both baseline and followup. Because the number of baseline respondents who died prior to followup was substantial (44.6%). these deceased respondents were compared to surviving respondents to determine if they diffcrcd significantly in terms of baseline characteristics. Although baseline respondents who died prior to followup were more likely than surviving respondents to be male (P d 0.05) there were no significant differences in the extent and type of unmet need at baseline. The 235 community residing respondents were interviewed primarily by telephone. with in-person interviews (n = 17; 7.2%) when necessary (e.g. with hearing-impaired respondents or those without tclcphones). Further, to ensure inclusion of elders with severe physical and/or cognitive impairments, proxy interviews were conducted for 66 community-residing respondents (28. I %). A comparison of responses from proxy and elder respondents revealed no systematic differences by respondent type. Proxy interviews were conducted for all of the 45 nursing home respondents, usually with the pre-admission informal caregiver. Data were collected regarding sociodemographics, mobility and functional capabilities (to determine level of disability). types and sources of assistance with daily living activities, and characteristics of up to four informal (i.e. non-paid) caregivers. The elder respondent was also asked to provide the name, address, and telephone number of his or her

Unmet need among disabled elders primary caregiver, defined as the person vided the most assistance with daily living Both family and friends were included as to capture more complete informal helping Telephone interviews were then conducted caregivers.

who proactivities. caregivers activities. with these

Study variables The dependent cariable, unmet

need, was defined

as: l

l

The reporting of substantial physical difficulty with a specific area of daily living activities; and no receipt of assistance from another person in this specific activity of daily living.

Physical difficulty was considered substantial if the older respondent reported that s/he was physically able to do the task “with some help most or all of the time,” “ only with considerable help,” or “cannot do it at all.” There were two sets of predictor variables: those used in models to identify predictors of unmet need at any one point in time and those used in the models to determine the influence of change in status on development of unmet need over time. The first set of predicator variables consisted of the sociodemographic characteristics of the older person including gender, age, living arrangement, monthly income, as well as level of functional disability. To determine level of functional disability, respondents were asked if, because of poor health or a physical limitation, they had difficulty performing 5 PADLs (bathing, eating, toileting, dressing, transfer, and taking medications), 8 IADLs (light and heavy housecleaning, meal preparation, laundry, shopping, transportation, managing finances, and arranging for health or social services) and with walking unassisted (stamina). Three levels of functional disability were defined as follows: ‘minimal’ indicating problems with stamina; ‘moderate’ indicating problems with IADLs and possibly stamina; and ‘severe’ indicating presence of problems with PADLs and likely problems with IADLs and stamina. Predictor variables considered to mediate the influence of the elder’s characteristics on the type and extent of unmet need included the number of informal caregivers and relationship of the primary caregiver to the elder. These variables were included since they have been found to influence the amount of informal care provided [5,6] which might in turn influence presence of unmet need. Primary source of care (i.e. formal or informal) was also considered an intervening variable, hypothesizing that an elder reliant on formal service would have more unmet need than one reliant on informal care, which is more extensive and flexible. The second set of predictor variables consisting of several measures reflecting change in need for care, source and receipt of care were included to determine if increased need for help and/or decreased availability of care would result in development of unmet

917

need. These variables included change in level of disability, change in number of caregivers, any change in primary caregiver, a specific change in primary caregiver from close kin to non-immediate family, change in primary source of care (formal or informal), and change in living arrangement. Coding of the predictor variables is presented in Table I. Analysis To answer the research questions stated above, the analysis involved several stages. First, using the above definition of unmet need, rates of unmet need at baseline and followup were calculated for community residing disabled elders (n = 235) in the areas of personal care or help with medication (PADLs), housekeeping, meals, shopping and errands, or transportation (IADLs), any PADL need, any IADL need, and both PADL and IADL needs. The distribution of number of unmet needs was also calculated to assess the extent of unmet need. Then, to examine change in unmet need over time, the distribution across the following categories was calculated: (1) unmet need to no unmet need; (2) no unmet need to unmet need: (3) unmet needs at both points; and (4) no unmet needs at both points. The next stage of analysis focused on identifying predictors of unmet need at baseline and followup, to determine if factors associated with unmet need were similar or not at different points in time, four years apart. Logistic regression models were developed relating unmet need at baseline and followup to sociodemographic characteristics of the older person and characteristics of their caregiving arrangement. Because of the low rates of unmet need in specific ADLs (see Table 4), this analysis of necessity was restricted to identifying predictors of any IADL need and any PADL need. A stepwise logistic procedure [7] was used to eliminate redundant or irrelevant predictors in order to better estimate effects for the remaining predictors. The models for unmet need at baseline were developed for both the full sample of 329 disabled elders and the subsample of 235 disabled elders who were still residing in the community at followup. The models for unmet need at followup were developed only for the 235 community residing elders since comparable outcome measures were not available for the 94 elders who had been admitted to nursing homes. Because these models excluded baseline respondents who had died in the community, became nondisabled, or were lost to further study, these models were repeated for the entire baseline sample of 632 to determine if the subsample investigated here was representative of the original group of disabled elders. The rates, types and predictors of unmet need for the entire sample were similar, suggesting that the subsample used here is representative of the entire baseline sample. Then, to determine if change in the elder’s status

SHARON TENNSTEDT

918

(i.e. functional or caregiving arrangement) over time was related to development of unmet need(s) at followup, similar stepwise logistic procedures were used relating any IADL unmet need and any PADL unmet need at followup to the elder’s gender, age, and the status change measures described above. These models were developed for the 210 community residing disabled elders who had no unmet need at baseline. Finally, to determine if unmet need(s) at baseline was associated with admission to a nursing home in the four-year interval between baseline and followup, the rate of unmet need at baseline among disabled elders subsequently admitted to nursing homes was determined. In the four year period between baseline and followup (1984-I 988) 94 (28.6%) of the community residing disabled elders were admitted to nursing homes. Of this number, 45 or 48% were still alive at followup. Descriptive data about these respondents are presented. Further multivariate analyses were precluded by the small number with unmet needs in this group as presented below.

and alive at followup four years later, almost threequarters were still residing in the community; 28.6% had been admitted to nursing homes. At baseline, the sample was predominantly female, aged 70-84, and not married. The respondents reported substantial functional disability yet almost half lived alone. For almost 80% of these elders, informal care was their primary source of help. Most elders had several caregivers; only 5% reported having no informal caregiver. Offspring predominated as primary caregivers, followed by spouses, other relatives, and non-relatives. In comparison to those remaining in the community, elders admitted to nursing homes between bascline and followup were older and more disabled at baseline. There were slightly more males and nonmarried elders admitted to nursing homes. Baseline caregiving arrangements did not differ significantly between the two groups. Types and extent of unmet need Looking first at unmet need among the 235 disabled elders continuing to reside in the community, data regarding the extent of unmet need are presented in Table 3. The vast majority (85592%) of community residing disabled elders reported their needs for IADL and PADL assistance as being met, both at baseline and followup. There was a 5% increase in the rate of unmet IADL need at followup but no increase in the rate of unmet PADL need. Unmet

RESULTS Sun?~ple

characteristics

Salient baseline characteristics of the disabled elder sample are reported according to their residence status at followup (community vs nursing home) in Table 2. Of those elders who were disabled at baseline

Table

I. Codmg

et al.

of predictor

variables Coding

Variable Basrhe

rrnd

folio wup 0 = female.

I = male

Baseline

72 = 70-74;

77 = 75~ 79: 82 = x0-x4;

FOllOWUp

range:

Elder

gender

Elder

age

Level

of drsablhty

Living

arrangement

Annual

income

I = mimmal.

2 = moderate,

0 = not with

caregiver,

I’

Income

2: > $10.000

<$5,000

income

0 = no.

I = yes

0 = no.

I = yes

(followup):

no.

= yes

0 = no.

= yes

SpOW

0 = no,

= yes

Offsprmg

0 = no.

= yes

Non-relatwe

0 = no.

= yea -1.3=24.7=5-Y.

Income

I:

Income

2: >$I000

Relationship

0 =


of caregivers

o=o.

Primary

source of care: formal

0 = no.

Level

chouye

I

I2110

= yes

roriuhlc,.r

of disability

Disabllily

I

0 = no changqimprovement.

Disabihty

2

0 = no change,‘decline,

Number

of caregivers

0 = no change/increase.

Primary

caregiver

0 = no,

Primary

caregiver

km

from

to non-munediate

Primary

source

I = declme

I = improvemrnt I = decrease

I = yes

close km

0 = no. I

= yes

of care

Source

I

0 = otherwise.

I = informal

source

2

0 = otherwise.

I = formal

0 = otherwse.

I = with

Livmg Live

to formal to mformal

arrangement I

baseline LlW

carrglver

of caregIver

Number Slaru.r

3 = sewe

I = with

(baseline):

Income Monthly

Y? >- x5

77-Y4

2

0 = otherwise, baseline

caregiver

at

but not at followup

I = not with

but with

caregiver

caregivrr at followup

al

Unmet need among disabled eiders Table

2. Sample

characteristics

at baseline

according

to followup

Status at Community Total Baseline

characteristics

Gender:

female

919

status (community

vs nursing

home)

Followup Nursing

(n = 235)

Home

(n = 94)

x= kommunitv king

vs

ho-me)

n

%

n

%

n

%

273

83.0

202

86.0

71

75.5

x2 = 5.17’.

249

75.7

I91

81.3

58

61.7

x2 = 19.37’**,

80

24.3

44

18.7

36

38.3

93

28.3

72

30.6

21

22.3

66

20.1

55

23.4

II

I I.7

df = I

Age: 7c-84 85f Marital

status:

married

Level

of disability

x

Minimal

I

37.9

33

35. I

38.7

50

53.2

46.8

51

54.3

x 2 = I .49,

df = I

49

20.9

22

23.4

x

2= 0.52.

df = I

21.1

45

22.6

IO

16.1

128

49.0

96

48.2

32

51.6

46

17.6

33

16.6

I3

21.0

32

12.3

25

12.6

37.

42.8

161

48.9

71

21.6

55

arrangement:

Major

source

alone

of care: formal

Other

x2=15.79**,

relative

Non-relative Number

I I.3

17

5.2

I2

5.1

55

16.7

40

17.0

I5

16.0

2-2

192

58.4

132

56.2

60

63.8

>5

65

19.7

51

21.7

I4

14.9

‘n = 261 elders

with

caregivers.

lP < 0.05; **P < 0.01; l**P

IADL needs were more common than unmet PADL needs. At baseline most elders (95-96%) with unmet need had only one need, although those with multiple unmet IADL needs increased by about 5% at followup. Rates for various types of unmet need at baseline and followup are displayed in Table 4. At baseline the most common types of unmet need were with housekeeping and personal care (bathing, grooming, toileting, eating) tasks. The rate of instrumental unmet needs increased at followup, particularly for housework, meals, and transportation. It is noteworthy that very few people (l-2%) reported both unmet IADL and PADL needs at either baseline or followup.

3. Extent

of unmet

needs among

community-residing

elders by

status at followup Nursing Community

Home

Baseline

by type

Follow-up

Baseline

%

n

%

n

%

210

89.4

199

84.7

90

95.7

I

24

10.2

25

IO.6

3

3.2

2 3

I

0.4 -

9 2

3.8 0.9

I

215

91.5

85

90.4

20

8.5 -

9

9.6 -

I.1 -

PADLs 0

214

91.1

I 2

20

8.5 0.4

I

-

5.3

Persistence

of unmet needs over time

Although data in Tables 3 and 4 suggest some increase in rates of unmet need over time, we do not know if unmet needs persist and increase for the same elders over time, or if different elders report unmet need at followup than at baseline (i.e. that unmet needs are transitory and eventually get met). Results of the investigation of change in unmet need status, displayed in Fig. 1, shed some light on this question. We see that very few people (n =9; 3.8%) have persistent unmet need(s) over the four-year period. While two-thirds of the community-residing elders had no problems with unmet need at either time points, about one-third had experienced unmet need at one point or the other. Of this latter group, similar proportions had resolved prior unmet needs (n = 35; 14.9%) or developed new unmet needs (n = 42; 17.9%). The vast majority (n = 35; 84.2%) of elders with new unmet need had only one.

(n = 94)

(n = 235)

n

-

5

~0.001

Predictors Number

IADLs 0

7

df=3

of caregivers:

None

Table

II0

caregiver:”

Spouse Offspring

df = 2

89

122 141

Living

2= 8.00*,

df = I

91

Moderate Severe

Primary

x ’ = 2.28,

df = I

of unmet need: baseline and follonwp

Table 5 presents the results of the logistic regression models to identify predictors of unmet need, both PADL and IADL, at baseline and followup. Looking first at unmet IADL need at baseline, different sets of predictors emerge when the full sample (including those subsequently admitted to nursing homes) is considered as compared to the subsample of elders remaining in the community. That is, unmet IADL need in this latter group is more likely for

920

less disabled elders who report fcwel younger, caregivers providing help. and whose primary caregiver is either an otfspring or non-relative. Prcdictars of unmet IADL need in the full sample. on the other hand, include younger apt. fewer caregivers. not living with a caregivcr. and other than formal services as primary source of cart (i.c. informal cu.2. combined formal:‘informal. or no care). With the exception of nonsignificance of disability lcvcl in the full sample, the predictors, although diff‘erent. present a similar picture of an cldcr in earlier stages oi disability who has not yet mnbilizcd an involved caregiving system. The fact that unmet r~eeds arc subsequently met for n~ost people lends support to this profile (Fig. I). Predictors of UIII~P~ P.-II)L UCV~/c/f htr.~~/i/~, arc similar in both groups. That is. unmet PADL need is predicted only by higher level of functional disability. The adjusted odds of unmet need for personal care arc more than three times higher for severely disabled elders than for modcratcly disabled elders. None of the characteristics of the caregiving arrangement arc related to unmet needs for personal care. Unmet IADL rwed rrf fi~llon~~rpwas eaamincd on14 for the community rcsibing subsample, since it wah assumed that the needs of the cider respondents in nursing homes were being met. Predictors of unmet

Fig.

1. Changes

in unmet need over four years for community residing frail elders 01 = 235).

IADL for disabled elders still living in the community related only to their caregiving arrangement. The lack of an involved caregiving system. as indicated by fewer informal caregivcrs (marginally significant) and a primary caregiver who was not a close kin. continucs to predict unmet IADL needs. In contrast to baseline. having an offspring caregiver reduced hkelihood of unmet need. reflecting mobilization of I caregiving system previously less involved. Age and disability level no longer predicted unmet need probably because of their correlation with having a closekin caregivcr. No significant predictors were identified for u/z~?~ef P.l n1. IlLWi (If fi~llowrl[l.

The results of the two logistic regression models are displayed in Table 6. Again. still focusing on community residing disabled elders, tk~.elol~n?rrzr of’ /UI~ICJ~ lADL rzccd at followup was predicted only by the relationship of the current primary caregiver. That is. having a primary caregiver who was not a spouse or offspring increased the likelihood of unmet need. None of the variables representing change in status that might indicate a decrease or withdrawal of informal cart (e.g. decrease in number of caregivers. change in primary caregiver, change in living arrangemcnt) cntcrcd the model to support the premise that dccreascd availability of informal care over time rcsuhs in unmet IADL need. However, looking at the ~/~~~Y~/o~~~I~v~~ o/ UMMJ[ /‘:I DL /Scot/. change in caregiving arrangcmcnt does predict development of unmet need. That is, those elders whose primary source of care changed from informal to formal in the four year period were almost !ive times as likely to have new unmet need for personal care. This change in primary source of care could reflect decreased availability of informal care-or unavailability of the appropriate type of care from informal sources--to meet these personal care needs. Since very few people reported both IADL and PADL unmet need (II = 5). the needs for IADL

Unmet need among disabled elders Table 5. Predictors”

of any unmet

need in IADL

and PADL

at baseline

for frail

921

elders (n = 329) and at followup

for community

residing

elders (n = 235) Baseline

Followup ___-PADL

IADL Slgniticant

Community

Community

predictors

All

Only

Elder

ageh

0.36 (0.16.0.X1)

Level

of disability

0.45 (0.25.0.84)

Number

of careglvers

Caregiver

All

Only

0.35 (0.17.0.74) 3.16(1.42.7.01)

3.25 (I .64,6.67) 0.71 (0.50,

0.74 (0.57,0.95)

0.75 (0.5X. 0.96)

0.09 (0.0 I, 0.69)

Otfspring

3.11 (1.11,X.73)

Non-Relative

6.35(1.61,25.0)

Primary

1.01)

relationship

Spouse

Living

PADL

IADL

0.25 (0. IO, 0.62)

arrangement source

0.27 (0.10, 0.70)

of care: formal

“Odds

ratios

(95%

Confidence

hOdds

ratios

are calculated

0.21 (0.05.0.80) Intervals):

comparing

for age increases

higher

to lower

assistance for those elders with unmet PADL need were likely being met by informal or formal sources. Unmet need und subsequent

6. Predictors”

of development community

Significant

predictors

Caregiver

relationship

to admission answer.

of any unmet

residing

elders lADL

0.18 (0.075.0.45)

I

need in IADL

and PADL

(n = 210)

0.04 (0.005,0.34)

ratios

to provide a more definitive

Longitudinal data from a representative sample of disabled older persons in Massachusetts were used to investigate both type and extent of unmet need, change in unmet need over time, predictors of unmet need, and the relationship between unmet need and likelihood of nursing home admission. In contrast to previous work [l-3], our data show that, while the extent of any unmet need in the population of disabled older persons is sizeable enough to raise concern, it represents a smaller proportion of the population than previously reported. Further, the virtual non-overlap of IADL and PADL needs (i.e. only l-2% had both types) means that different groups experience the two types of unmet need. Therefore, in our sample, about 18% of the disabled elders experienced some type of unmet need-or less than one-half of the number estimated by the GAO [I]. The data available in this study regarding the number and types of unmet need, as well as the change in unmet need over time, provide further information to assess the seriousness of this situation, Most elders with unmet need reported only one such need, most frequently in the area of housekeeping tasks. In addition, most elders with unmet need at

Spouse

Source

are required

DISCUSSION

Offspring

“Odds

variables.

nursing home admission

Referring to Tables 3 and 4, we do not see a higher rate of unmet need, either IADL or PADL, in the group of respondents admitted to nursing homes than for those disabled elders who continued to live in the community. In fact, the extent of unmet IADL need is actually less than for those remaining in the community, suggesting more extensive caregiving involvement especially since these elders were more impaired than those not later admitted to a nursing home (Table 2). While the small numbers of subsequent nursing home admissions with unmet need (n = 4 for IADLs and n = 9 for PADLs) did not permit further multivariate analysis to determine if unmet need contributed to likelihood of nursing home admission, the low rates argue against any major influence. However, it should be pointed out that unmet need was measured at baseline with nursing home admission occurring at a time up to four years later. It is possible that an elder experienced a major decline in functional status with the resulting emergence of unmet needs that did contribute to the likelihood of admission. Therefore, while these data do not support a major influence of unmet need on admission, examination of data regarding unmet need just prior

Table

values of predictor

of IO year increments.

PADL

4.90 (I .47. 16.40) (95%

confidence

intervals).

in

one point of contact did not have unmet need at the next point of contact, suggesting that unmet need is temporary rather than persistent for most people. Predictors of unmet IADL needs at the two points of contact lend additional support to the temporary nature of unmet need. At both points. specific predictors of unmet IADL needs indicate a lack of involved carcgivers. However, at baseline, these elders were younger and less disabled. Since the amount of informal care is directly related to the level of disability. increasing substantially for the severely disabled [8], it may very well be that the informal care system had not yet been mobilized to meet emerging needs for help. Similarly. because they were less disabled, this group of elders was probably not eligible on the basis of disability for the statewide. publicly funded home care services in Massachusetts designed to meet needs for IADL assistance. Therefore. the group most likely to have had unmet IADL need at baseline appears to be those in the early stages of disability not yet well linked to a care system either informal or formal. At followup. those elders with unmet I.4DL need5 were older and, related to their age. more disabled. However. the extent of unmet IADL need beyond the singular area of housckceping tasks found for the group at baseline was not major. Thcreforc. despite advanced age and disability, similar types 01 unmet need emerged that were not yet addressed bq informal or formal caregivcrs. However. there is nothing in these data to suggest that these elders wcr-e dramatically different from elders with unmet IADL need at baseline and, thcreforc, that their needs would not also bc subsequently met. The situation with unmet PADL needs appear’s different. Unmet PADL needs arc experienced a1 a later stage of disability. The vcrq low rate for both IADL and PADL unmet need (1 -So/;) suggests that a caregiving system has already been tnobilizcd to meet the likely concomitant IADL needs. but that the system (informal. formal, or combination) is inadequate to meet personal care needs. An elder might have very involved informal caregivers who meet all needs for IADL assistance. yet this predominantI> informal caregiving arrangement might actually conLributc to their likelihood of unmet PADL needs. Personal care is an area for which caregivcrs might not have the skills or prefer to provide. Providing personal care for a parent. especially of the opposite sex, could gcneratc intrapersonal conflicts for the carcgiver. Similarly. providing this type of help lo an cldcr not related. or not closely related. might not bc socially acceptable to either the caregivcr or GII-c recipient. Help from a professional or paraprofcssional might be preferred by all. However. ;~cccss to formal services may be problematic, i.e. general unavailability of the services or eligibility restrictions related to third party reimbursement. Thcrcforc. UIImet PADL needs may result from constraints in either or both the formal and informal care systems. This analysis focused on surviving respondents.

While respondents who died between baseline and followup differed on social characteristics, their type and extent of unmet riced at baseline was similar to that of the survivors. However. data were not available to determine if their unmet riced status changed prior to death. Given that these elders were older and more disabled at baseline than surviving respondents. tt is possible that their needs for care. and quite possibly their unmet needs. increased in the month(s) hefore death. These findings point o11t the importance of differcntiating types of unmet need since they appear to surface at different ages and points in the course of disability. This has implications for interventions to address specific arc;15 of unmet riced.. Since elders with unmet IADL needs III;I~ be ineligible for formal scrviccs, an intervention to identify and engage informal caregivers seems appropriate. For unmet PADL needs. on the other hand. increased availability of formal ser\-itch appears indicated. Both approaches make best use of the Icsourccs and capabilities of each system of’care in a complementary fashion, i.e., formal scr\,iccs focus on routinirrd. skilled care while informal carcgivcrs provide help in arcas requiring Hexihility of response ;lnd intimate knowledge of the cider. The GAO [I] in pi-cdlcting future problems with access to long-term CXC, made much of the opinion that informal cart. if currently not eroding, will be less available in the future [Ye 1 I] contributing to increased unmet needs of the growing number of dcpendcnt cldcrlq. This has been related to often cited trends. such as smaller f’amily size [I?]. increuscd participation of women in the Lvorkforce [ 13, 141. and increasing rates ofdiborce and marital disruption [II] that are thought to rcsuI1 in fcwcr potential caregivcrc a$ \+ell a5 decreased a\ailabili~q of these caregivers to provide assistance in the I‘uturc. Hnuc\e1-. data from the burgconing number- of cros+scclionat studies of informal cart from the tQ7Os to the present time indicate that informLit c;ii-c is flourishing. not diminIshing (cl‘. [5, IS] for rcvie\vs). That is. not onI> has the cxtcnt of infbrmat cart not changed over the past IS 20 years. hut ;IIW rcccntty 1eported data from two longitudinal studies in Massachusetts [16] reveal remnrkablc stabllit! of 111l’ormat cart over a period of t1p to ten years. In addilion. the consistently reported finding t11at most of‘ the CXI-creceived by an cider is provided by oiic pcrjon r-i. 6. I’7 211 argues against the trend

tov.ard

snlaller

of c81.c. Thai

l’ilmit~ si~c clccrcasing

avail-

matlcr if feuer otfspring arc aiailahlc II\ long ;is thci-e i:, at least one offspring. And last, \\h1tc the data regarding assistabilit>

i4. II ~toesn‘t

ancc by empto>ed

caregivei-s

era1 studies

reported

;Inlouilt

of’ care provided

cornpar-cd c2regivcr

to those is fcinalc

‘P!lcrcforc. projected

ha\,e

whiii

xi-c tcss consistent. no nla.ior

hq c;lrcgi\ers

whet do not.

xv-

diffcrenceb

in

who work

txtrticularty

as

if the

[I I. 22 241. rhc societal

Impac( on :.[I?clder’x

trends

are real, their

access IO informal

care

Unmet

need among disabled elders

and consequently on rates of unmet need are not supported by empirical evidence. In addition, little attention has been paid to several countervailing trends that might actually serve to facilitate the caregiving role. For example, the trend toward smaller family size might decrease any competing child care responsibilities for a caregiver of a disabled elder. In addition, despite decreasing size of families Crimmins and lngegneri [25] have found that the proportion of older people with a surviving direct descendent had increased from 1962 to 1984. The increasing proportion of unmarried women might result in a group of potential caregivers who also have fewer competing responsibilities and therefore, as has been shown [8, 151 are more available to provide care. The pattern of adult children returning to the parental home (i.e. ‘refilling’ the empty nest) could contribute to increased availability of potential caregivers. And finally, the plethora of technological products that facilitate communication and household management now make it possible to perform many tasks simultaneously and much more quickly than in the past. Therefore, frequently cited societal trends might not have the entirely negative effect on caregiving involvement that has been projected. In conclusion, the important point to be drawn from these longitudinal data is that even with increasing age and disability, there was no major increase in unmet need for a cohort of functionally disabled elders remaining in the community. The implications of the findings for projecting need/demand for community-based long-term care services are that at any one point in time, about 20% of disabled elders will experience some unmet need, and usually just one area of need. For the majority of elders, this need eventually will be met, most likely by family caregivers. Appropriate targets for formal services are those elders with unmet need(s) who lack available close kin or who report unmet need with personal care in the presence of an informal care system. The size of this group most likely represents a more accurate estimate of the number of elders with unmet need for whom community-based long-term care services are critical to decrease the risk of institutionalization. Clearly, more work in this area is warranted. If prevalence of unmet need continues to be used as an indicator of need/demand for long-term care, investigators should use a consistent definition of the concept, examine the same areas of PADLs and IADLs, and include sufficient PADL/IADLs to represent the range of functioning. Otherwise, overall rates are misleading, and rates for PADL or IADL need become useful only in the context of the specific activities of daily living examined. Further, investigations to date of unmet need, including this one, have been limited to need in the absence of any assistance, but not in excess of formal or informal care received. It is likely that assistance provided to some elders in this sample was insufficient to meet all

923

of their needs. Whether the rates, types, and predictors of this kind of unmet need are similar to findings reported here is not known and should be investigated. Acknowledgemenrs-This Institutes on Aging

study was supported by National Grant No. AG07182. The authors gratefully ackno&dge the statistical assistance of Sybil Crawford and Lisa Sullivan and the helnful comments of

Alan Jette.

REFERENCES

I. General Accounting Office. Long-term Cure fiw the Elderlv: Issues of Need Access. and Cosr. (GAOIHRD89-4).‘Washingion, DC, 1988. 2. Manton K. Epidemiological. demographic, and social correlates of disability among the elderly. Milbank Memorial Fund Q. 67, Suppl. 2, 13-58, 1989. 3. Montgomery R. and Hirshorn B. Current and future family help with long-term care needs of the elderly. Res. Aging 13, 171-204, 1991. 4. Morris J., Sherwood S. and Mor V. An assessment tool for use in identifying vulnerable persons in the community. The Gero&o& 24, 373-319, 1984. 5. Tennstedt S. and McKinlav J. Informal care for frail older persons. In Aging and-Health Care (Edited by Ory M. and Bond K.). Routledge, New York, 1989. 6. Tennstedt S., McKinlay J. and Sullivan L. Informal care for frail older persons: The role of secondary caregivers. The Gerontologist 29, 677-683, 1989. 7. Hosmer D. and Lemeshow S. Applied Logistic Regression. Wiley, New York. 1989. 8. McKinlay J. and Tennstedt S. Social Networks und rhe Cure qf Frail Elders (Final report to the National Institute on Aging, grant no. AG03869). Boston University, Boston, 1986. 9. Day A. We Can Manage. Institute of Family Studies, Melbourne, 1985. 10. Hanley R. and Weiner J. Use of paid home care by the chronically disabled elderly. Res. Aging 13, 310-332, 1991. I I. Soldo B. and Myllyluoma J. Caregivers who live with dependent elderly. The Geronrologisr 23, 60741 I. 1985. 12. U.S. Bureau of the Census. Detailed Popularion Churuclerisfics, purl 1. United States summary (March 1980). 1984. 13. U.S. Department of Labor. Employmen/ Projections fbr 1995(Bulletin 21973). Bureau of Labor Statistics. 1984. 14. Shank S. E. Women and the labor market: The link grows stronger. Monthly Labor Rev. March. 3-8, 1988. 15. Horowitz A. Family caregiving to the frail elderly. In Annuul Retiew of Gerontology and Geriurrics. (Edited by Lawton M. P. and Maddox G.). Springer, New York.

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18. 19. 20.

S. and Branch L. Stability of informal care over time. J. Aging Hlth. 4, 193-21 I. 1992. Cantor M. The informal support system: Its relevance in the lives of the elderly. In Aging and Society (Edited by Borgotta E. and McClusky N.). Sage. Beverly Hills. CA, 1980. Frankfather D., Smith M. and Caro F. Fumi!, Cure of the Elderly. D.C. Heath and Co., Lexington. MA. 198 I. Johnson C. Dyadic family relations and social support. The Gerontologisr 23, 377-383. 1983. Horowitz A. and R. Dobrof. The Role o/ Funlilies in Proaiding Long-Term Cure to the Fruil and Chronicull> III Elder!,: Lioing in the Communi!_vy (Final Report to the Health Care Financing Admmlstration. USDHHS grant no. 18-P-97541/2-02). Hunter College. New York. 1982.

924

SHARON

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21:Stoller E. P. and Earl L. L. Help with activities of everyday life: Sources of support of the noninstitutionalized elderly. The Gerontologist 23, M-70, 1983. 22. Brody E. M., Johnsen P. T., Fulcomer M. C. and Lang A. M. Women’s changing roles and help to elderly parents: Attitudes of three generations of women. J. Geront.38, 597407, 1983. 23. Cantor M. H. Strain among caregivers: A study of

experience in the United States. The Gerontologist 23, 597-604, 1983. 24. Staller E. P. Parent caregiving by adult children. J. Marriage Fam. 45, 851-858, 1983. 25. Crimmins E. M. and lngegneri D. G. Interaction and living arrangements of older parents and their children: Past trends, present determinants, future implications. Res. Aging 12, 3-35. 1990.