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American Journal of Alzheimer's Disease and

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DOI: 10.1177/153331750301800208

2003 18: 97AM J ALZHEIMERS DIS OTHER DEMENJoseph E. Gaugler, Sarah B. Wackerbarth, Marta Mendiondo, Frederick A. Schmitt and Charles D. Smith

The characteristics of dementia caregiving onset

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This study examined the characteristics of entry intothe caregiving role for family and friends of older adultssuffering from dementia. Using data from a large com-munity survey of informal caregivers of patients who vis-ited the University of Kentuckys Alzheimers DiseaseResearch Center (n = 1055), respondents were classifiedinto one of four onset sequences: recognition-diagnosis,care provision, recognition-care, and diagnosis depen-dent. A multinomial logistic regression identified severalcharacteristics (i.e., caregiver income, time since onset,care recipient gender, care recipient living status, andprimary caregiver identification) that were significantlyassociated with various caregiving onset patterns. Thefindings describe the complexity of the entry process andits potential association with health-related transitionsin the caregiving career.

Key words: Alzheimers disease, caregiving, dementia,onset patterns

Research on dementia caregiving has grown consider-ably over the past two decades. Much of this effort has

focused on describing family caregivers of Alzheimerspatients and the burdens associated with care provision.1

Many early studies were cross-sectional in design, butthere was still recognition that family caregiving oc-curred over long periods of time, often several years ormore.2 Consequently, recent prospective longitudinalstudies have found that caregiving is a dynamic processinfluenced by a number of key transitions, such as insti-tutionalization and bereavement.3-7 Fewer studies exam-ine onset or entry into the caregiving role. The purposeof the present study is to describe sequences of caregiv-ing onset among an Alzheimers clinic population ofpatients and their informal caregivers (i.e., unpaid familymembers and friends). Specifically, associations wereexplored between caregiving onset, sociodemographiccharacteristics, care provision, caregiver health, and carerecipient status (i.e., in the community, institutionalized,or deceased). By determining how different aspects ofdementia caregiving are associated with patterns ofentry, this study will help to extend our understanding ofcaregiving onset and refine conceptual models of care-giving.

Seminal early research8 suggested that the acquisitionof caregiving roles within aging families is based on ahierarchical compensatory model; the closest andmost accessible person provides the bulk of assistance.Thus, spouses would be the first choice as family care-givers, followed by adult children (usually daughters),friends, and, if necessary, formal sources of support. Theliterature has long emphasized the identification of a pri-mary caregiver, although recent research has challengedthis notion.9

Other studies have examined how the transition from

97American Journal of Alzheimers Disease and Other DementiasVolume 18, Number 2, March/April 2003

Joseph E. Gaugler, PhDSarah B. Wackerbarth, PhD

Marta Mendiondo, PhDFrederick A. Schmitt, PhD

Charles D. Smith, PhD

Joseph E. Gaugler, PhD, Sanders-Brown Center on Aging, TheUniversity of Kentucky, Lexington, Kentucky.

Sarah B. Wackerbarth, PhD, Sanders-Brown Center on Aging, TheUniversity of Kentucky, Lexington, Kentucky.

Marta Mendiondo, PhD, Sanders-Brown Center on Aging, TheUniversity of Kentucky, Lexington, Kentucky.

Frederick A. Schmitt, PhD, Sanders-Brown Center on Aging, TheUniversity of Kentucky, Lexington, Kentucky.

Charles D. Smith, PhD, Sanders-Brown Center on Aging, TheUniversity of Kentucky, Lexington, Kentucky.

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noncaregiver to caregiver (or from providing no assis-tance at one point to providing help with at least oneactivity of daily living at a later interval) affects stressand negative mental health. The transition to caregivingappears to exert a more negative emotional impact ondaughters than wives and caregiving husbands than non-caregiving husbands.6,10 However, when comparing newcaregivers to veteran caregivers who provided assis-tance for six months or more, several studies found littledifference in stress or negative mental health out-comes.11,12 For many new caregivers, elderly relativesacute health needs precipitated the onset of care (e.g., astroke) and caused distress initially, followed by a senseof stabilization over time.

Additional analyses of entry into caregiving arederived from retrospective approaches. Some studieshave found that family members can readily indicatewhen actual provision of care began, but have difficultyrecognizing when they thought of themselves as care-giver.13,14 A longitudinal study of dementia caregivingused three baseline measures to assess the beginning ofintensive family care3: (1) symptom recognition, or timesince the caregiver realized that the elderly relatives

functioning deviated significantly from normal; (2)duration of care, or the length of time caregivers reportedhelping the elderly relative when he or she could nolonger do things for himself or herself; and (3) the lengthof time elapsed since the relative first saw a doctor forhis or her memory problems. Considerable variabilityoccurred in the sequencing of these events, suggestingthe dynamic nature of caregiving onset. Other workfound that most respondents (over 50 percent) dated thestart of caregiving prior to the onset of a care recipientsimpairment,15 implying that many caregivers defined thestart of their roles when care recipients were still fairlyindependent, or perhaps confounded caregiving withordinary exchanges within families.

The acquisition of the caregiving role is complex, anddifferent patterns of entry are likely to have variousimplications for caregivers and their care receivers. Priorresearch suggests that family members tend to adapt tothe caregiving role following an acute-care episode.11,12

However, in a progressive degenerative illness such as

98 American Journal of Alzheimers Disease and Other DementiasVolume 18, Number 2, March/April 2003

Recognition-care (n = 367)

Diagnosis dependent (n = 187)

Recognition-diagnosis(n = 221)

Care provision(n = 280)

Symptom recognition occurred prior to or at the same time of care provision.

These events were followed by diagnosis.

Care provision occurred prior to symptom recognition and diagnosis.

Symptom recognition occurred, then diagnosis.Both of these events were followed

by care provision.

Diagnosis occurred prior to or at the same time symptom recognition and the

provision of care occurred.

Figure 1. Sequences of onset.



Alzheimers disease, the onset process may be morevariable. For some, the onset of care could begin with acrisis (the relative wanders and is lost), whereas for oth-ers entry into the caregiving role occurs gradually, per-haps indiscernibly.

In order to ascertain the complexity of the entryprocess in dementia caregiving, multiple indices of onsetmust be used such as when a professional diagnosis wasobtained, when care provision began, and when the fam-ily member first recognized something wrong with therelative.3,16 Using these three indices, we developedtypologies to determine the various pathways to caregiv-ing entry. The sequencing of these three events couldlead to several distinct typologies, and the goal of thepresent study is to describe differences in backgroundcharacteristics, caregiver identification (i.e., primaryor secondary), care provision, caregiver subjectivehealth, and care recipient living status among these var-ious entry patterns. By exploring the underlying processof caregiving onset, the present study will extend priorresearch in several ways: we will ascertain why andhow certain family members assume primary careresponsibilities, and we will also determine how thesevarious patterns of entry are related to caregiver well-being and care recipient living status (two importantoutcomes of interest in caregiving research). Suchinformation can help community-based respite providerspromote more effective and earlier use of services forcaregiving families.17,18

Data were collected from listed contacts of patientswho visited the University of Kentucky AlzheimersDisease Research Clinic since 1989 (UK-ADRC). Priorto a clinical assessment, the names and contact informa-tion of up to two caregivers for each patient were iden-tified. Patient contacts could include family members,friends, or other individuals deemed important to thecare of patients at home. As of April 2001, the UK-ADRC maintained a database of 2,743 contacts.

The Community Care Survey (CCS), a brief surveycollecting data on background characteristics of the care-giver, care recipient living status, caregiver subjectivewell-being, caregiving onset, and range of care providedwas mailed to patient contacts in May 2001. The CCS waslimited to one two-sided page, and follow-up queries weremailed in June 2001 to ensure a good response rate.Information on care recipient background characteristics(i.e., type of diagnosis, date of diagnosis, age, gender, edu-cation) was available from the UK-ADRC.

Of the 2,743 surveys mailed, 1,055 were returnedcompleted. Of the 1,055 respondents, 59 were individu-als who were not listed on the original UK-ADRC con-tact list (i.e., often additional family members whoassumed responsibility for the patient). There were sev-eral reasons surveys were not returned: the contact infor-mation maintained by the UK-ADRC was out of dateand a correct mailing address could not be located (n =603), the contact or patient was deceased (n = 54), or thesurvey was sent to an address but not returned (n =1,090). Limited information was available from thosewho received a survey but did not return it. The onlyconsistent data collected for all contacts during an initialvisit to the UK-ADRC were relationship to the patientand gender. Chi-square analyses found that contacts whodid not return a survey were more likely to be men (40.6percent versus 31.5 percent; p < 0.05) and less likely tobe a spouse of the patient (30.4 percent versus 35.1 per-cent; p < 0.05).

The CCS included participants who institutionalized acare recipient or cared for a loved one who died, andthese individuals were included in subsequent analyses.A significant segment of the literature tends to ignore theramifications of caregiving following a loved ones insti-tutionalization or death. However, feelings of emotionaldistress, depressed mood, and guilt related to care re-sponsibilities tend to persist after these events.3,5,7,19

Because the implications of the caregiving career aremanifest long after a loved one dies or is institutional-ized, the inclusion of these respondents was deemed rel-evant to the objectives of this study.

Table 1 presents background information for the sam-ple. As indicated, almost 90 percent of respondents caredfor a loved one suffering from a diagnosed form ofdementia (n = 945; 89.6 percent). The majority ofpatients not receiving a formal diagnosis of dementiawere classified by the UK-ADRC as having mild cogni-tive impairment.20 For comparison purposes, individu-als who cared for nondiagnosed loved ones wereincluded. A covariate representing formal diagnosis ofdementia was incorporated in subsequent analyses.

Three indicators measured onset of caregiving in theCCS. Symptom recognition was determined by askingcaregivers, How long ago did you realize somethingwas wrong with your loved one? (M = 64.57 months;SD = 37.97). The second indicator, duration of care, wasmeasured by asking respondents, How long ago did youfirst have to start helping (her/him) do things that




(she/he) was no longer able to do for (herself/himself)?(M = 49.96 months; SD = 37.97). Diagnosis was collect-ed from UK-ADRC records and represented the firsttime a loved one saw a doctor at the University ofKentucky Memory Clinic for an in-depth assessmentand diagnosis (M = 44.02 months; SD = 37.97).

In the most prominent sequence of onset, caregivers

recognized symptoms before or at the same time helpwas provided. Symptom recognition and the provision offamily care were mobilized prior to a diagnosis. Thesecaregivers were referred to as the recognition-care onsetgroup (n = 367). In the second most prevalent sequence, theprovision of help occurred prior to symptom recognition oractual diagnosis. In this care provision group (n = 280),


Table 1. Background and descriptive data for the sample (N = 1055)

Variable n Mean (SD) Percent

Caregiver background characteristics

gender (female) 722 68.4

race (Caucasian) 1011 95.8

marital status (married/living with partner) 790 74.9

work status (working full-time job) 374 35.5

relationship to care recipient (spouse or partner) 376 35.6

age (median) 59.84 (13.30)

education (1 = did not complete junior high; 8 = graduate degree) 5.21 (1.99)

annual income (1 = less than $5,000; 10 = $80,000 or over) 7.65 (2.14)

Caregiver well-being (self-rated: 1= poor; 4 = excellent) 2.98 (0.75)

Care recipient background characteristics

gender (female) 695 65.9

diagnosed with dementia 945 89.6

age 77.92 (8.91)

education (years) 12.47 (3.54)

Care provision

ADLa assistance (range 1 6) 2.03 (2.32)

IADLb assistance (range 1 6) 4.27 (2.14)

Transition length (months) 36.46 (28.26)

Time since onset (months) 34.76 (23.94)

Care recipient status in the community 516 48.9

Primary caregiver identification 639 60.6

a ADL = activities of daily living; b IADL = instrumental activities of daily living.



respondents already appeared well entrenched in theirroles once the recognition or confirmation of cognitiveimpairment occurred.

For 221 caregivers, symptom recognition occurredprior to the provision of care and diagnosis. These partic-ipants were referred to as the recognition-diagnosisgroup. Individuals in the recognition-diagnosis groupturned to a medical professional for diagnosis and fur-ther advice after the recognition of symptoms. Followinga formal diagnosis, the caregiver began to provide moreintensive help. In the final onset sequence, caregiverssought diagnosis prior to or at the same time that symp-tom recognition and/or the provision of help occurred.This group was the diagnosis-dependent group (n =187). For some caregivers, the onset of dementia symp-toms is abrupt and requires the consultation of a physi-cian. More commonly, family members ignore or denypreliminary signs of cognitive decline but respond byseeking professional help when a critical event occurse.g., disruptive behaviors or activities of daily living(ADLs) impairments. After the diagnosis is made, thecaregiver assumes primary care responsibilities.

Figure 1 illustrates caregiving onset groups and theirassociated sequences of symptom recognition, diagno-sis, and duration of care.

In addition to background characteristics, the CCScollected information on other aspects of the caregivingsituation, including caregivers subjective health, careprovision, and care recipient status. Table 1 presentsdescriptive information on these variables for the sample.

Caregiver subjective health. One item was includedthat asked caregivers: In general, would you describeyour physical health as? Response categories included(4) excellent, (3) good, (2) fair, and (1) poor.Since the length of the CCS was limited to ensure a goodresponse rate, more extensive measures of caregiveremotional and psychological distress were not possible.However, as past research has indicated, the one-itemsubjective rating is a potent predictor of important healthoutcomes in various populations.21

Care provision. Six yes/no items determined whetherthe caregiver ever provided ADLs assistance (e.g., helpeating/drinking, dressing/undressing, bathing/shower-ing, using the toilet/changing diapers or pads, getting inand out of bed, getting around the house). In addition, sixyes/no items measured whether caregivers assisted withinstrumental activities of daily living (IADLs) such astaking medications, cooking/preparing food, housekeep-ing/cleaning, doing laundry, transportation, managingfinances. ADL/IADL tasks were summed, respectively,

to represent the range of assistance provided to lovedones.

Transition length. The time that elapsed betweenduration of care, symptom recognition, and diagnosis foreach respondent was included in subsequent analyses.

Time since onset. The time that elapsed from the mostrecent measure of caregiving onset (i.e., duration of care,symptom recognition, or diagnosis) to the time of thesurvey was included for each caregiver.

Care recipient status. A dummy variable was createdto capture care recipients living status (i.e., the relativeremained in the community, was placed in a nursinghome, or died) at the time of the CCS survey.

Primary caregiver identification. A single yes/noitem identified whether the participant was ever a prima-ry or secondary caregiver for the loved one: Were/areyou the person who spent/spends the most time helpingyour loved one?

The analysis determined whether caregiver and carerecipient characteristics, ADL/IADL provision, caregiversubjective health, transition length, time since onset,care recipient status, and primary caregiver identifica-tion were associated with membership in the four care-giving onset sequences. A multinomial logistic regressionwas used to explore those variables that were significant-ly associated with caregiving onset. A multinomiallogistic regression is used to predict a multiple discreteoutcome based on a set of predictor variables that arecontinuous, dichotomous, discrete, or all three.22 Be-cause this analysis included independent variables thatare both continuous and discrete as well as a dependentvariable that has four discrete and conceptually distinctlevels (recognition-care, diagnosis dependent, recogni-tion-diagnosis, care provision), a multinomial logisticregression was an appropriate approach for the analysis.

Several steps were taken to limit collinearity amongpotential predictor variables. First, each variable wasanalyzed alone as a single predictor of caregiving onset;if the variable was significant at the p < 0.05 level, it wasretained in subsequent analyses. Then, bivariate correla-tions were conducted among those covariates that weresignificant predictors. If a covariate was correlated at ther >= 0.70, p < 0.05 level with one or more selectedcovariates (r >= 0.70 is a rule of thumb when determin-ing two variables are collinear23), then a decision wasmade whether to keep that covariate in the model.

The results of the multinomial logistic regression are





Table 2. Characteristics of caregiver onset

Variable B SE Wald Exp (B) p

Recognition-diagnosis

Caregiver annual income 0.12 0.06 3.93 1.12 0.05

Time since onset 0.01 0.00 3.90 1.01 0.05

ADLa dependency -0.01 0.05 0.04 0.99 0.83

Care recipient is male -0.39 0.24 2.54 0.68 0.11

Caregiver is not married 0.14 0.29 0.21 1.14 0.65

Care recipient lives in the community 1.28 0.29 19.89 3.61 0.00

Care recipient is institutionalized 0.57 0.36 2.58 1.77 0.11

Caregiver is secondary 0.10 0.28 0.12 1.10 0.73

Recognition-care

Caregiver annual income 0.05 0.05 0.96 1.05 0.33

Time since onset 0.01 0.00 7.75 1.01 0.01

ADLa dependency -0.03 0.05 0.38 0.97 0.54


Caregiver is not married -0.10 0.28 0.14 1.55 0.71



Caregiver is secondary -0.08 0.28 0.09 0.92 0.77

Care provision

Time since onset -0.01 0.01 0.02 1.00 0.88

ADLa dependency -0.01 0.05 0.00 1.00 0.99


Caregiver is not married 0.25 0.28 0.80 1.29 0.37



Caregiver is secondary 0.60 0.26 5.56 2.68 0.02

a ADL = activities of daily living. Diagnosis dependent is the reference category.



presented in Table 2, with the diagnosis-dependentsequence as the reference group. The model accountedfor a small amount of variance in the caregiving onsetvariable (Cox Snell pseudo R2 = 0.10). Caregivers in therecognition-diagnosis group reported a lengthier timesince onset (B = 0.01, p < 0.05) and greater income (B =0.12, p < 0.05). Caregivers in the recognition-diagnosisgroup were also more likely to care for loved ones wholived in the community (B = 1.28, p < 0.001).Participants in the recognition-care sequence reportedgreater time since onset (B = 0.01, p < 0.01). Moreover,individuals in the recognition-care sequence were morelikely to be secondary caregivers (B = 0.60, p < 0.05) andless likely to care for men (B = -0.54, p < 0.05).Individuals in the recognition-care group were also morelikely to care for loved ones who lived in the community(B = 1.29, p < 0.001) or in a nursing home (B = 0.99, p

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