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The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 61:970-974 (2006)
© 2006 The Gerontological Society of America

Informal Caregiver Involvement and Illness Detection Among Cognitively Impaired Nursing Home Residents

Cynthia Lindman Port

Department of Epidemiology and Preventive Medicine, University of Maryland School of Medicine, Baltimore.

Address correspondence to Cynthia Lindman Port, PhD, 660 West Redwood Street, Baltimore, MD 21201. E-mail: cport{at}epi.umaryland.edu


   Abstract
Top
 Abstract
Methods
 Results
 Discussion
 References
 
Background. The participation of informal caregivers in the care of nursing home (NH) residents has the potential to positively impact care, especially for cognitively impaired residents whose own ability to advocate for their care is often limited. This study examined relationships between the level of informal caregiver involvement (ICI) in the NH and the degree to which residents' common medical conditions were detected by facility staff.

Methods. One hundred pairs of cognitively impaired residents and their primary informal caregivers were enrolled from three facilities in the Baltimore, Maryland area. Data collection involved interviews with informal caregivers and facility staff, as well as a medical evaluation and chart review of residents. A measure of illness detection was created by comparing a medical examination of the resident with chart review information. ICI was measured via staff rating and informal caregiver self-report.

Results. Correlations between illness detection and ICI were significant, with r = –.46 (p <.001) and r = –.39 (p <.001), for staff rating and self-reports, respectively. In regression models taking into account resident characteristics (age, race, gender, comorbidities, payment status, duration of stay, and cognitive impairment) and facility differences, higher ICI and being female predicted higher rates of illness detection.

Conclusions. Though the cross-sectional nature of the study prevents the analysis of causal relationships, the involvement level of informal caregivers in the NH care of cognitively impaired residents was statistically related to higher rates of illness detection. Ramifications for the role of informal caregivers in long-term care are discussed.

WITH the majority of nursing home (NH) residents receiving at least weekly visits from family and friends (1,2), informal caregiving has the potential to be an important component of long-term care. In addition to providing social and emotional support, care monitoring is viewed by informal caregivers as one of the most important reasons for involvement (3–5).

The influence of informal caregiver involvement (ICI) within NHs and other direct care settings has received minimal research attention, though ICI appears to positively influence care and well-being. Within psychiatric NHs, the use of mental health services beyond pharmacological treatment (psychological therapies) was positively related to family visitation (6). Higher ICI has been positively linked to psychosocial and psychological well-being among NH residents (7,8) and to increased life satisfaction among assisted living residents (9). In inpatient pediatric settings, parental involvement is related to shorter stays and to patients spending less time alone, crying, or sleeping (10,11).

A central aspect of good care in any NH is the early detection and treatment of medical conditions, and there are several ways ICI might improve illness detection. Caregivers may ensure that routine visits by primary doctors and specialists take place or, based on personal knowledge of a resident's medical history, advocate for specific evaluations and treatment. Participation in hands-on care may result in earlier detection of symptoms. The knowledge that an informal caregiver is actively involved in monitoring care may lead staff to spend more time with a resident or conduct more thorough evaluations. Finally, the caregiver's efforts toward "preservative care," (3) or maintaining the identity of an institutionalized elderly person, may lead staff to provide more personalized and attentive care.

In the current study, it was hypothesized that greater ICI would be related to higher rates of detection of common medical conditions among NH residents. ICI was measured via staff ratings and caregiver self-report. Caregiver self-report is the most common measure of caregiver involvement (12). Staff awareness of involvement can be limited by such factors as shift changes, large case loads, and rotating assignments. However, staff impressions of involvement may be critical for understanding the impact of ICI on care. An informal caregiver who visits daily but rarely interacts with staff may have less influence than one visiting weekly but communicating regularly with staff. Diagnostic care was evaluated in relation to eight common medical conditions: hypertension, respiratory problems, oral health problems, skin integrity, weight loss, fever, vision problems, and pain. Because characteristics of the resident have the potential to influence care, regression analyses were conducted to evaluate whether such factors as age, race, gender, duration of stay, comorbidity, Medicaid status, and cognitive impairment affected the relationship between diagnostic care and ICI. Finally, because cognitively impaired residents are the least able to advocate for their own care needs and thus may benefit the most from ICI (13), the study focused on residents with some degree of cognitive impairment.


   METHODS
Top
 Abstract
 Methods
Results
 Discussion
 References
 
Enrollment
Data collection occurred in three facilities (one for-profit, two non-profit) in the Baltimore area during 2001–2002. NH residents and informal caregivers (family members, friends, or guardians) were enrolled in pairs. Facilities provided the names of all residents 60 years old or older with some cognitive impairment and a minimum 1-month stay. The primary contact person in the resident's chart served as the informal caregiver except in the few cases in which he or she indicated that a second person was more involved in care. Residents who obtained a score >25 on the Mini-Mental State Examination (MMSE; 14) were excluded. The University of Maryland Institutional Review Board approved the research protocol, and written consent was obtained for all resident and caregiver participants.

Measures
Undetected illness.-- Eight medical conditions were evaluated (see Table 1). Medical conditions needed to be common, detectable during a brief noninvasive examination, and have the potential for an informal caregiver to be aware of and influence diagnostic care. A master's level nurse researcher with a clinical specialty in geriatric care who was blind to the level of ICI conducted a medical examination of each resident, noting the presence or absence of the conditions. The nurse researcher then conducted a review of the resident's chart for documentation of the eight conditions. An "undetected condition" occurred when a condition identified during the examination was not documented at any time during the preceding 3 months. Chart documentation could include written diagnosis and/or treatment for a condition (including medications). Evidence of administration of pain medications, not merely a standing order, was required to document pain treatment. Similar approaches have been used previously in NH and other medical settings (15–17).


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  		Table 1. Medical Conditions and Criteria.

 
To account for underlying resident health differences, a measure of "undetected illness" was calculated as the ratio of the number of undetected conditions to the total number of conditions a resident had (e.g., all conditions found via medical examination and/or chart review). Lower detection of illness is indicated by a larger ratio and higher detection of illness by a smaller ratio. Although a simple count of undetected illness could be used, the ratio accounts for the fact that residents with more underlying comorbid illness have more opportunity for diagnoses to be missed.

Staff-rated ICI.-- Two staff persons (nursing assistant with primary responsibility for the resident's care and the designated "medication giver" on the unit) were separately provided the name and relation to the resident of each caregiver, and rated his or her involvement on a 1–6 scale (1 = Do not know who this person is, 2 = very low, 3 = low, 4 = average, 5 = high, 6 = very high). These ratings were averaged to obtain the staff-rated ICI.

Self-reported ICI.-- During telephone interviews, informal caregivers were asked how frequently they visit in person. Answers were given as the number of times per day, week, month, or year, whichever was appropriate, and from which a yearly rate was calculated. Twenty-eight caregivers were reinterviewed after delay to assess test–retest reliability.

Resident characteristics.-- Age, race, gender, duration of stay (in days), and Medicaid status (funded in some part vs not funded) were obtained from the Minimum Data Set (MDS; 18). Comorbidity was the number of conditions determined via chart review from the following 12: angina, coronary artery disease; congestive heart disease; cerebrovascular disease; chronic obstructive pulmonary disease/emphysema, chronic bronchitis; liver disease; arrhythmia; peripheral vascular disease; psychiatric illness, substance use disorder; seizure disorder; peptic ulcer disease; arthritis; and cancer. For cognitive impairment level, an MMSE was administered to 84 (84%) of residents, and an MMSE score was estimated from the resident's most recent MDS–COGS (MDS Cognition Scale) score (19) for the remainder (20).

Analytical Method
Zero-order correlations, conducted separately for staff-rated and self-report ICI, were used to examine the relationship between ICI and undetected illness. For comparison's sake, correlations were also calculated for a simple count of undetected conditions. To examine the potential influence of resident characteristics on this relationship, two separate simultaneous multiple regression analyses were conducted. In each model, undetected illness was regressed onto ICI (e.g., staff-rated or self-report) along with characteristics of the resident. Because an analysis of variance (ANOVA) indicated that one of the facilities (Site 2) had lower undetected illness, the effect of this facility was also included in each model. Prior to performing regressions, zero-order correlations were examined to insure absence of collinearity. Self-report ICI, duration of stay, and undetected illness were transformed via square root prior to analysis to correct for skewing.


   RESULTS
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 Methods
 Results
Discussion
 References
 
Participants
Participants included 100 residents and their 100 informal caregivers. Of 241 resident/informal caregiver pairs approached for consent, 46% consented, 24% declined, and 30% could not be contacted. Due to the deaths of consented residents, a final participation rate of 42% was obtained. Self-report ICI was available for 98 of the 100 resident/informal caregiver pairs.

Residents were mostly female (73%) and white (61%) with a mean age of 82.3 years (standard deviation [SD] = 9.05; range 63–101). Most utilized Medicaid (71%). Mean facility stay was 987.7 days (SD = 932.59; range 61–5201). The mean MMSE score was 9.2 (SD = 8.35; range 0–26), and mean number of comorbidities was 2.7 (SD = 1.64; range 0–8). Informal caregivers were mostly female (72.4%) and white (56.1%) with a mean age of 58.5 years (SD = 13.19; range 24–84) and mean education of 14.5 years (SD = 3.16; range 4–20). Most were daughters (32%), sons (17%), or spouses (13%), with the remainder friends (7%), guardians (7%), and other relatives. Staff were primarily female (88%) and black (84%) with a mean age of 38.2 years (SD = 9.21; range 21–54), and their mean time working at the facility was 74.9 months (SD = 66.04; range 4–318).

Primary Study Variables
Informal caregivers reported visiting the resident a mean of 132.2 times per year, with a median frequency of 52 (SD = 170.53; range 0–730). Test–retest reliability for self-report ICI was very good at.95 (mean time interval = 85 days). Both mean and median staff-rated ICI were 4.0 (SD = 1.47; range 1–6) or "average." The correlation between the two measures of ICI was moderate to high at r =.66 (p <.001). Ninety-seven undetected conditions (identified during the medical examination but not indicated in the chart) were found, for a mean of.97 and median of 1 (SD =.92; range 0–3). Undetected conditions occurred in oral health (27), vision (18), pain (17), respiratory problems (16), hypertension (11), and skin problems (8), with 0 in weight loss or fever. The total number of conditions residents had (as per medical examination or chart review) ranged from 1 to 8 with a mean of 4.16 and a median of 4 (SD = 1.69). Undetected illness (the ratio of undetected to total conditions) ranged from 0 to 1, with a mean of.24 (SD =.24) and a transformed mean of.38 (SD =.31).

Undetected Illness and ICI
The zero-order correlation between undetected illness and staff-rated ICI was significant (r = –.46, p <.001), as was that between undetected illness and self-report ICI (r = –.39, p <.001). Thus for both ICI measures, residents with fewer undetected conditions had higher levels of caregiver involvement. Using a simple count of undetected conditions, correlations were similar at –.36 (p <.01) for self-report ICI and –.50 (p <.001) for staff-rated ICI.

Table 2 provides the mean proportions of undetected illness at differing levels of staff-rated and self-reported ICI. Staff-rated ICI is partitioned into 6 groups (do not know the caregiver, very low, low, average, high, and very high). Self-reported ICI is partitioned into 6 levels of visit frequency (never, monthly, bimonthly, weekly, 2–7 times per week, and >7 times per week). For both ICI measures, undetected illness decreases as ICI increases.


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  		Table 2. Mean Proportion of Undetected Illness (Range 0–1.0) per Informal Caregiver Involvement (ICI) Rating.

 
Resident and Facility Characteristics and the Relationship of ICI to Undetected Illness
The regression models are shown in Table 3. Undetected illness is regressed onto ICI (staff-rated or self-report) along with resident characteristics (gender, race, age, duration in facility, Medicaid status, comorbidities, and cognitive function) and facility. Both models show that ICI and resident gender were significant predictors of undetected illness whereas other resident characteristics and the facility were not. Females and residents with higher ICI had lower undetected illness. Both models accounted for a moderate amount of variance (33% for staff-rated and 31% for self-reported ICI).


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  		Table 3. Simultaneous Multiple Regression Results (Standardized Betas) Regressing Informal Caregiver Involvement (ICI), Resident Variables, and Facility Onto Illness Detection.

 

   DISCUSSION
Top
 Abstract
 Methods
 Results
 Discussion
References
 
Although this cross-sectional study prevents analysis of causal relationships, higher involvement by informal caregivers of cognitively impaired NH residents was statistically related to higher rates of illness detection. This result occurred using two separate measures of involvement and after taking resident characteristics and facility differences into account. The informal caregiver sample in this study was typical in terms of demographics and involvement level (1,21–25). Residents had typical lengths of stay, age, comorbidity, and Medicaid funding rates (1,2,21,26–28).

The most common undetected conditions were in oral health and vision, conditions for which specialist treatment is generally used. One possibility then is that informal caregivers play a role in insuring that specialist treatment is available to residents. Undetected conditions also occurred for conditions for which specialist care is generally not relied on, including respiratory problems, hypertension, skin integrity, and pain. This finding might suggest that informal caregivers can influence basic as well as specialist-based diagnostic care. The lack of undetected illnesses for fever or weight loss likely attests to the effectiveness of mandated MDS monitoring of these conditions, leaving little room for improvement related to informal caregiver influence. Although NHs may be faulted for not providing equal diagnostic care to all residents, the level of NH staff burden due to low staff/resident ratios and high turnover rates is well known; it is perhaps not surprising that additional care and monitoring by an informal caregiver might have some positive effect.

Being female was also related to lower rates of undetected illness. However, women did not differ from men in terms of comorbidities or their total number of conditions. This finding would suggest that female residents receive more thorough diagnostic care despite similar baseline levels of illness, although the reason for this is not clear.

Caution in the interpretation of these findings should be taken due to the study's use of a small convenience sample of facilities, moderate participation rate, and correlational design. Although the relationship of ICI to undetected illness remained despite facility differences in illness detection, future research should include a larger and more representative facilities sample. The 42% participation rate, although somewhat low, is unfortunately comparable to other studies of NH informal caregivers (3,29,30). In addition to precluding causal statements, the correlational design makes it impossible to control for unmeasured variables. The low to moderate variance accounted for in the regression models suggests that additional variables may be important, such as staff training in illness detection. Another important goal for future research would be to link more clearly the knowledge and actions of informal caregivers to staff care processes. To this end, a follow-up article based on the current study will examine the relationship between illness detection and the specific caregiving activities and characteristics of informal caregivers. A longitudinal approach examining resident outcomes at differing baseline levels of involvement would also be feasible, because involvement levels change relatively little over time (31).

At a minimum, these preliminary results support the need for more research examining the impact of informal caregiving on care quality, in terms of both nontechnical aspects of care (which have been previously acknowledged) (32,33) and medical care quality. Although not all informal caregivers may be able to take an active role in care, most maintain good involvement (34) and express interest in taking on additional care tasks (30,35). Research also indicates that staff prefer families to be involved rather than simply periodic visitors (29,30,36). Facilities whose policies support involvement have a higher level of family integration (37) and are rated by families as providing better care (4) than facilities whose policies are less supportive of involvement. Yet tensions and role ambiguities between families and staff are well documented (4,38,39), with NH administrators ranking relations with families as a primary job stressor (40). Focusing on developing collaborative family/staff processes is more likely to be successful than creating an agreed upon division of labor (3,4). Furthermore, a minimum level of care quality in which families trust staff and the basic safety of the resident is prerequisite for collaborative relationships (4). In many cases, a paradigmatic shift in the thinking of administrators, staff, and families is needed to increase recognition for the important role played by the informal caregivers of institutionalized elderly persons.


   Acknowledgments
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 Methods
 Results
 Discussion
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This research was funded by a grant from the Alzheimer's Association of America through a Hatfield Award for Clinical Research in Alzheimer's disease and through the Maryland Long-term Care Project under the direction of Dr. Jay Magaziner.

Additional assistance was provided by Dr. Mona Baumgarten, Christine Schmitt, and Nancy Stadler.


   Footnotes
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 Results
 Discussion
 References
 
Decision Editor: Darryl Wieland, PhD, MPH

Received May 26, 2005

Accepted January 18, 2006


   References
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 Results
 Discussion
 References
 

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