Journal of Gerontological Nursing

Older Adults and Their Caregivers: The Transition to Medication Assistance

Vicki S Conn, PHD, RN; Susan G Taylor, PHD, RN, FAAN; Catherine J Messina, MSN, RN

Abstract

Many older adults manage multiple medications. Some older adults with physical or cognitive limitations rely on caregiver assistance with medication management. Although considerable attention has been devoted to the caregivers of impaired older adults, very little work has examined the transition of older adults from independent management of medications to caregiver assistance for older adults. The purpose of this study was to examine primary caregivers' perceptions of the transition to providing medication assistance to older adults experiencing cognitive and/ or physical impairment.

LITERATURE REVIEW

Older adults experience many chronic illnesses requiring long-term management of medications (Ebersole & Hess, 1990). Effective selfmanagement of medication includes not only administering medication as prescribed, but also diverse actions and decisions from obtaining medications to monitoring for side effects of medications. Low adherence to prescribed medication regimens is thought to be a common problem affecting health outcomes (Stewart & Caranasos, 1990). Cognitive and physical impairments are increasingly common with advancing age and these impairments are often suggested as causes of nonadherence to medication regimens among older adults (Edwards & Pathy, 1984; Fillenbaum, 1985; Kafonek, Ettinger, Roca, Kittner, Taylor, & German, 1989; Loewenstein et al. 1989; Moore, 1983; Stewart & Caranasos, 1990). Most cognitively or physically impaired older adults reside in the community (Brody, 1981; Shanas, 1977), with caregivers providing assistance with activities such as medication management.

Recently, research literature about caregivers for elderly persons has increased dramatically. However, most studies have focused on identifying caregivers, caregiver stress or burden, the relationship between informal (caregivers) and formal (paid) services, and, on a superficial level, the content of caregiving (Noelker & Bass, 1989; Stone, Cafferata, & Sangl, 1987; Tennstedt, McKinlay & Sullivan, 1989). The caregiving literature does document the importance of the primary caregiver because the primary caregiver usually provides much more assistance than secondary caregivers (Noelker & Bass, 1989; Tennstedt et al.; Stone et al., 1987). Primary caregivers are more likely to provide assistance requiring continuous involvement, such as many aspects of medication assistance (Tennstedt et al., 1989). Medication management requires many decisions, such as whether to take a medication in the presence of possible side effects. The decision-making and judgment aspects of caregiving for older adults have been almost ignored (Townsend & Poulshock, 1986).

Gaps in the published literature are apparent. Caregiving research has not examined the transition from independent older adult to recipient of care. Changes in physical and cognitive functioning necessitating caregiving may occur dramatically or be characterized by subtle changes. Functional changes may occur rapidly or gradually. Physical and cognitive changes may occur independently and the transition to caregiving for a physically impaired older adult may be very different from the transition when cognitive impairment is found. Information is needed about the observations made and criteria used by caregivers when making decisions about caregiving needs. Judgments about the nature of the assistance to be provided have not been described. As the numbers of old-old adults (age 85 and over) increase, knowledge about the transition to caregiving will become more important. Information is a significant factor when considering the adequacy of care at home, the need for institutionalized care, and the kind and amount of additional support needed.

THEORETiCAL FRAMEWORK

The theoretical framework for the study was a general model of selfcare/self-management (Orem, 1991). Management of medications is deliberate self-care behavior required when people experience diseases (Orem, 1991). Performing self-care, such as managing medications, involves both estimative /transitional operations (those requiring knowledge of medication doses and leading to decisions about how many pills to take) and productive operations (those involving me action of administering medications). Limitations in ability to perform self-care can occur…

Many older adults manage multiple medications. Some older adults with physical or cognitive limitations rely on caregiver assistance with medication management. Although considerable attention has been devoted to the caregivers of impaired older adults, very little work has examined the transition of older adults from independent management of medications to caregiver assistance for older adults. The purpose of this study was to examine primary caregivers' perceptions of the transition to providing medication assistance to older adults experiencing cognitive and/ or physical impairment.

LITERATURE REVIEW

Older adults experience many chronic illnesses requiring long-term management of medications (Ebersole & Hess, 1990). Effective selfmanagement of medication includes not only administering medication as prescribed, but also diverse actions and decisions from obtaining medications to monitoring for side effects of medications. Low adherence to prescribed medication regimens is thought to be a common problem affecting health outcomes (Stewart & Caranasos, 1990). Cognitive and physical impairments are increasingly common with advancing age and these impairments are often suggested as causes of nonadherence to medication regimens among older adults (Edwards & Pathy, 1984; Fillenbaum, 1985; Kafonek, Ettinger, Roca, Kittner, Taylor, & German, 1989; Loewenstein et al. 1989; Moore, 1983; Stewart & Caranasos, 1990). Most cognitively or physically impaired older adults reside in the community (Brody, 1981; Shanas, 1977), with caregivers providing assistance with activities such as medication management.

Recently, research literature about caregivers for elderly persons has increased dramatically. However, most studies have focused on identifying caregivers, caregiver stress or burden, the relationship between informal (caregivers) and formal (paid) services, and, on a superficial level, the content of caregiving (Noelker & Bass, 1989; Stone, Cafferata, & Sangl, 1987; Tennstedt, McKinlay & Sullivan, 1989). The caregiving literature does document the importance of the primary caregiver because the primary caregiver usually provides much more assistance than secondary caregivers (Noelker & Bass, 1989; Tennstedt et al.; Stone et al., 1987). Primary caregivers are more likely to provide assistance requiring continuous involvement, such as many aspects of medication assistance (Tennstedt et al., 1989). Medication management requires many decisions, such as whether to take a medication in the presence of possible side effects. The decision-making and judgment aspects of caregiving for older adults have been almost ignored (Townsend & Poulshock, 1986).

Gaps in the published literature are apparent. Caregiving research has not examined the transition from independent older adult to recipient of care. Changes in physical and cognitive functioning necessitating caregiving may occur dramatically or be characterized by subtle changes. Functional changes may occur rapidly or gradually. Physical and cognitive changes may occur independently and the transition to caregiving for a physically impaired older adult may be very different from the transition when cognitive impairment is found. Information is needed about the observations made and criteria used by caregivers when making decisions about caregiving needs. Judgments about the nature of the assistance to be provided have not been described. As the numbers of old-old adults (age 85 and over) increase, knowledge about the transition to caregiving will become more important. Information is a significant factor when considering the adequacy of care at home, the need for institutionalized care, and the kind and amount of additional support needed.

THEORETiCAL FRAMEWORK

The theoretical framework for the study was a general model of selfcare/self-management (Orem, 1991). Management of medications is deliberate self-care behavior required when people experience diseases (Orem, 1991). Performing self-care, such as managing medications, involves both estimative /transitional operations (those requiring knowledge of medication doses and leading to decisions about how many pills to take) and productive operations (those involving me action of administering medications). Limitations in ability to perform self-care can occur if physical or cognitive impairments interfere with knowledge, decisions, or the physical act of performing self-care. Dependent care is provided by caregivers to persons, such as older adults with cognitive or physical impairments, who are unable to provide their own self-care.

PURPOSE

The purpose of this research was to study impaired older adults' caregivers' perceptions of the transition to caregiving. The aim was to describe the perceptions of primary caregivers related to determining mat an impaired older adult needed assistance with medication management.

METHODS

The project was a descriptiveexploratory study of the transition to caregiving for impaired older adults. In-depth interviews with 20 primary caregivers of impaired older adults provided the source of data. The criteria for inclusion are listed in Table 1.

INSTRUMENTS

Because the knowledge base regarding self-care and caregiver management of medication needs is uncertain, a qualitative approach with both structured and unstructured data collection strategies was used (Brink & Wood, 1989). First, a general question was asked about the transition to encourage subjects to describe the transition to caregiving assistance, "Tell me about what was happening when you first started helping __ with medications/ ' This general question was followed by more specific probes:

How did you know __ needed help with medications?

What did __ do that led you to believe he or she needed help with medications?

Was there a particular incident or situation that helped you know when it was time to help?

How did __ react when you started to help with medications?

Has there been a time when __ did not need help with medications? How did you know?

The last two questions were used to encourage the subjects to provide more detail about the transition to caregiving assistance. Any information about times when the care recipients began managing their medication independently would provide further detail about the criteria the caregiver used to determine the need for medication assistance.

Information about the ability of the impaired older adult to provide selfcare was provided by the Biggs' Elderly Self-Care Assessment Tool (Biggs, 1990). The Biggs' Elderly Self-Care Assessment Tool (BKCAT) measures the ability of an older adult to provide self-care to meet universal needs such as for food or rest and to provide self-care in the presence of illness. Typical items from the BESCAT are:

* Does the elder have any trouble moving arms and legs?

* Is the elder able to see well enough for usual activities?

* Does the elder talk with you or others about current events in the family?

* Does the elder tell you of symptoms that would require health care assistance?

The BESCAT was especially appropriate for this study because it was intentionally designed for caregivers to provide information about older adults who have impairments. Previous research with the BESCAT found good correlation between caregiver assessment of elder self-care ability and nurses' assessment of elder self-care ability (Biggs, 1990).

The entire BESCAT contains items addressing breathing (12), water intake (S)7 food intake (16), bowel and bladder functioning (12), balancing activities and rest (32), balancing social interaction and solitude (27), safety and prevention of injuries (33), promotion of normalcy (32), and health deviation self-care requisites (8). Many items address capacities that require both cognitive and physical functional ability. Eleven items that assess physical capacity independent of cognitive ability and 24 items that address cognitive capacity separately from physical capacity were used in this study.

PROCEDURE

Potential subjects were identified from among the case load of a home health agency serving a small city in the Midwest and surrounding rural areas. Potential subjects were contacted by phone to solicit participation. Consenting subjects were interviewed at a location of convenience, typically the subjects' or care recipients' home. The interviews began with some general discussion to attempt to establish rapport. The interviewer began the data collection portion of the interview by asking the general question about the transition to medication assistance. Probe questions followed to elicit more detail about the transition. Interviews were audiotaped, with the consent of each subject. The tapes were transcribed by a secretary and each transcription was checked for accuracy.

Table

TABLE 1Inclusion Criteria tor Subjects

TABLE 1

Inclusion Criteria tor Subjects

RESULTS

The characteristics of the 20 caregivers and 20 care recipients are found in Table 2. Four of the 20 care recipients were African-American, the remainder were Caucasian.

Changes in Care Recipients That Prompted Caregiving

The caregivers described many different observations they made that led to their decision to begin caregiving. The most commonly mentioned criteria are described here.

Cognitive changes leading to caregiving. Most of the criteria used related to cognitive functioning and the ability of the elder to engage in the mental operations necessary for self-care (14 of the 20 cases). Many of these criteria were not related directly to managing medications, but were reflective of changed cognitive functioning that could affect medication management. For example, two caregivers described elders' difficulties with managing money as their impetus to begin assisting the elder with medication. Three others noted that the elder was forgetful about a variety of things, besides medications. Observations related to cognitive functioning included both abilities required for estimative operations (knowledge related to when medication should be taken) and abilities related to transitional operations (decision-making ability such as whether to take a medication at a particular time).

Physical changes leading to caregiving. Subjects infrequently described changes in physical capacity that prompted the initiation to caregiving. Two subjects described evidence that the elder had inadequate strength or control of body parts to open containers or obtain liquid. Only one subject described sensory impairment as affecting the elder's ability to take medications.

Table

TABLE 2Characteristics of the SO Caregfvers and 2O Care Recipients

TABLE 2

Characteristics of the SO Caregfvers and 2O Care Recipients

Health crises leading to caregiving. Among this sample, hospitalisation was associated with major changes in ability to provide independent care among these older adults. Eight of the caregivers described major health crises requiring hospitalization that precipitated the transition to medication assistance. Only three of the seven described a change in physical health state that would of itself likely change the elder's ability to manage medication, those elders had strokes. In one situation, the elder was hospitalized for an instance of inadequate medication management (hypoglycemia secondary to inappropriate insulin dose). The other four situations involved precipitous alterations in cognitive capacity during hospitalizations for physical problems.

Relationship Between Impairment and Nature of Caregiving

An attempt was made to compare the nature of impairment as measured by the BESCAT with the type of caregiving assistance the subjects described. Nine of the 10 subjects with cognitive BESCAT scores lower than the sample mean were receiving medication assistance from the caregiver that would compensate for cognitive impairment. For example, caregivers of cognitively impaired care recipients reported checking medication lists with the care recipients, preparing a medication box, putting medications in front of elders, handing medications to elders, making decisions about whether to administer medications after checking pulse rates, and prefilling insulin syringes.

All of the subjects with physical BESCAT scores lower than the sample mean were receiving medication assistance that probably compensated for their physical impairment. Typical caregiver assistance for these individuals included administering insulin, crushing medications, conducting the home glucose monitoring, and driving to get medications. Seven of the 20 caregivers described assisting with medication in ways that would compensate for both physical and cognitive impairment. This finding is not surprising given the multiple health problems common for these older adults.

Care Recipient Responses to Caregiving Transition

Elder receptivity to the transition to caregiving assistance varied considerably. Although most caregivers reported little difficulty with the transition, several care recipients (n = 7) were observed to be frustrated, depressed, or angry about requiring assistance with medications and other changes in role responsibilities. These reactions were described as being in response to declining functional status, rather than specifically aimed at medication assistance. For two of the caregiver-care recipient dyads, assistance with medication was a longestablished pattern, prior to any changes in the care recipients' ability to manage their own medications. One subject reported that he had been assisting the elder with her medications long before physical or cognitive changes necessitated that she receive assistance.

DISCUSSION

These caregivers had little difficulty describing their experience in beginning assistance with medication for the elders. Although the nursing literature often mentions physical impairments that prevent older adults from seeing medication containers and opening bottles, this sample predominantly dealt with cognitive impairments as the impetus to medication assistance from caregivers.

An interesting finding from the study was that the caregivers described using criteria that would require considerable familiarity with the older adult to observe, such as the caregiver who said she first suspected some cognitive impairment when the older adult began getting parking tickets. These types of behaviors often are not observed by professional health providers. Although health care providers do counsel families to assist older adults, most families probably make decisions about assistance independent of professional wisdom.

The congruence between BESCAT scores and type of medication assistance provided by the caregivers suggests that caregivers were able to make sufficiently fine distinctions in functional capacity to match care recipients' limitations without unnecessarily performing medication management activities that the elders could perform. For example, caregivers who filled timed pill boxes, and then checked to see that medications were removed, were providing cognitive assistance for elders who could physically manage taking medications. These findings also suggest that managing medications is a complex activity with components that can be performed by different individuals.

Although not its purpose, the study revealed that caregivers changed assistance over time. For example, one caregiver put red paint on the container of heart medications as a color cue when medication assistance began but began removing pills and administering them to the elder as impairment increased. The data revealed situations where caregivers provided only cognitive assistance, only physical assistance, or a mixture of cognitive and physical assistance. Also, not all changes in functional ability were declines.

Limitations of the study include the focus exclusively on medication management, reliance on the recall of the primary caregiver, and depending on caregivers to provide all information. Future research could remedy these limitations by collecting data from subjects other than caregivers, such as care recipients and other members of the care recipients' family. It also would be valuable to investigate the changes in caregiving that occur over time. As older adults' functional abilities change, the nature of caregiving assistance probably changes as well and this has not been studied.

NURSING IMPLICATIONS

Nurses should not assume that they know when older adults need assistance with medications. Questions to the caregiver, or family, about how the older adult manages money or cooks could reveal deficits in cognitive ability that would affect medication management. Questions about real life tasks, such as managing money, probably are related more closely to medication management capacity than are scores on tests that ask older people to count by sevens. The predominance of cognitive changes precipitating assistance in this sample suggests that nurses should be sure to include some assessment of cognitive capacity when determining if an older adult needs medication assistance, even if the older adult is under health care for a physical problem.

These findings suggest that nurses working with older adults and caregivers should consider medication management a complex activity. The nursing practice implications are that specific questions about different aspects of managing medications should be asked and specific suggestions for assisting with medication be provided instead of general comments about "helping" the impaired older adult with medications. For example, the caregiver of a care recipient with cognitive impairment who is alone for some of the times that medications should be administered could be asked how the medications are prepared for the elder to administer, if there are any cues to remind the elder to administer the medications, and if any system is in place to determine if the elder consumed the medications. In addition, nurses should frequently reassess the adequacy of medication management as the older adult's functional capacity changes.

Nurses also should expect some caregivers and care recipients to experience difficulties in their relationship as the caregiver begins assisting, even with a fairly limited activity such as medication management. Elders and caregivers should be encouraged to express their feelings about these transitions in role relationships. The nurse should assist the caregiver to specify the type of limitation the elder is experiencing to ensure that frustration is not resulting from unnecessary assistance provided by the caregiver. For example, an older adult with the physical inability to open pill bottles could be offended by assistance that implied cognitive inability to remember which medication to administer. Nurses providing care to community-dwelling older adults often are responsible for determining whether the elder is managing medication appropriately. This study documented the criteria that caregivers use to determine if assistance is needed. Future research should attempt to identify criteria nurses could assess that would predict which elders need assistance.

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TABLE 1

Inclusion Criteria tor Subjects

TABLE 2

Characteristics of the SO Caregfvers and 2O Care Recipients

10.3928/0098-9134-19950501-08

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