Shared activities of older adults with dementia and their caregivers, The

shared activities of older adults with dementia and their caregivers, The

Voelkl, Judith E

Little is known about the breadth and quality of shared activities among community dwelling older adults with dementia and their caregivers. In order for TR practitioners to respond to the call for the design and implementation of in-home recreation programs for older adults (Lawton, Moss, & Duhamel, 1995; Wilhite, 1992), it is necessary to identify methods to assess and evaluate in-home activity engagement. Therefore, the purpose of this exploratory study was twofold: (1) to pilot the use of time budget methods to measure shared activities and (2) examine the activities engaged in and affect experienced during shared activities. Twelve people (i.e., six dyads, each consisting of an older adult with dementia and his/her primary caregiver) participated in the study and reported on a total of 367 daily activities. Fifty-five percent of daily activities were shared, engaged in jointly by the caregiver and care-receiver. In addition, the levels of happiness of the caregiver and the older adult with dementia were found to significantly vary in relation to the type of shared activity. Implications for program development/evaluation and future research are discussed.

KEY WORDS: Older Adults, Dementia, Caregivers, Shared Activities, Time Budget Methods

In recent years there has been a call for TR practitioners to be involved in the design and implementation of in-home recreation programs for community dwelling older adults with dementia and their caregivers (Buettner, 1996; Lawton, Moss, & Duhamel, 1995; Wilhite, 1992). The growing number of community dwelling older adults with dementia (Evan, Funkenstein, Albert, Sherr, Cook, Chown, Herbert, Hennekens, & Taylor, 1989) and difficulties caregivers face in fostering recreation in the lives of older adults with dementia (Buettner, 1996; Lawton, Moss, & Duhamel, 1995) attests to the need for in-home recreation programs. Such programs may foster family recreation experiences that strengthen relationships and provide enjoyable interactions for the older adult with dementia and the caregiver (Orthner & Mancini, 1991).

The caregiving literature is replete with articles reporting on the stress and burden experienced by caregivers (e.g., Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1996; Rabins, 1997), as well as articles pertaining to the relationship among caregivers’ stress, burden, and leisure (e.g., Bedini & Guinan, 1996; Brattain-Rogers, 1997; Keller & Tu, 1994; Sneegas, 1988). Few studies, however, report on the breadth and quality of shared activities among older adults with dementia and their caregivers. Given the potential that shared recreation activities have for fostering positive family interactions (Orthner & Mancini, 1991), it is important to begin to understand the type of shared activities engaged in by caregivers and care-receivers. Furthermore, if TR specialists are to effectively design and evaluate in-home recreation programs, then identifying methods to assess the time use and quality of shared experiences should advance our understanding of shared activities. Therefore, the purpose of this exploratory study was twofold: (1) to pilot the use of time budget methods to measure shared activities and (2) examine the activities engaged in and affect experienced during shared activities.

Background Literature

Daily Activities of Caregivers and CareReceivers. Several studies have investigated the hassles and uplifts caregivers experience in daily life (Kinney & Stephens, 1989; Wallsten, 1993; Wallsten & Snyder, 1990). Typically, caregivers are asked to respond to a questionnaire containing a list of daily events/tasks by indicating whether each daily event is perceived as a hassle or uplift and the degree of hassle or uplift. More specifically, Wallsten (1993) found that older adults’ identification of 112 daily events as uplifts, hassles, routines, or challenges to be significantly influenced by whether or not they were a caregiver. Caregivers were significantly more likely to identify daily activities to be hassles than non-caregivers. In particular, caregivers were significantly more likely to identify “no time to relax” and “thinking about responsibilities” as hassles than non-caregivers. Non-caregivers were significantly more likely to identify “eat with spouse” and “engage in hobbies” as uplifts in daily life than caregivers.

In similar work by Kinney and Stephens (1989), 60 caregivers were asked to rate 110 caregiving events/tasks as to whether they were daily hassles or daily uplifts and degree of hassle or uplift. The items rated were representative of events pertaining to the care-receiver’s limitations in ADLs, carereceiver’s cognitive status, care-receiver’s behavior, and logistical aspects of caregiving. Two-thirds or more of the sample identified two items related to the care-receiver’s cognitive status as daily hassles (i.e., “care recipient being confused,” “care recipients’ forgetfulness”) and three items related to care-receivers’ behavior as daily uplifts (i.e., “seeing care recipient calm,” “pleasant interactions between care recipient and family,” and “seeing care recipient responsive”).

One of the only studies designed to specifically document the time use of caregivers, including recreation, used “yesterday interviews” to examine how caregivers were spending their time the previous day (Moss, Lawton, Kleban, & Duhamel, 1993). The same research group interviewed caregivers using “yesterday interviews” to assess the daily time use of older adults (Lawton, Moss, & Duhamel, 1995). These studies have found that caregivers living with older adults with dementia spend approximately 10 to 15% of their time in direct caregiving tasks, 50% engaged in other obligatory activities, and 35% in discretionary activities. Caregivers’ reports on the daily time use of older adults with dementia found that 62% of the day involved discretionary activities consisting primarily of resting and television viewing, 12% obligatory activities, 9% perseverative behavior, and 17% help from the caregiver. When caregivers were asked to identify an activity during the past month that their relative with dementia had found pleasurable, only one-half could identify an activity (Lawton, 1995). When identified, these pleasurable activities tended to be either eating or recreation.

Although the studies reviewed do not report on the shared daily activities of carereceivers and caregivers, they do provide insights as to the individual time use of both parties and the uplifts and hassles experienced by caregivers. It seems that several of the uplifts identified by caregivers (Kinney & Stephens, 1989) would most likely occur during shared activities, such as pleasant interactions and responsiveness of the care-receiver. The studies by Lawton and his colleagues indicate that both the caregiver and care-receiver engage in discretionary recreation activities during a typical day. However, questions remain as to whether recreation constitutes a shared activity and as to the quality of these experiences for the caregiver and care-receiver.

Measurement of Care-Receivers’ Quality of Life in Daily Experience. Quality of life is multidimensional, including the dimensions of physical, emotional, and cognitive functioning (Lawton, 1991; 1994; Spitzer, 1987; Ware, 1987). Quality of life measures typically include objective measures of physical and cognitive functioning and subjective self-report measures of affective or emotional functioning (Lawton, 1991; 1994). It is difficult to measure many of these aspects of quality of life in individuals with dementia. While a number of studies have reported the physical and cognitive functioning of older adults with dementia (e.g., Cohen-Mansfield, Marx, & Werner, 1992; Teri, Larson, & Reifler, 1988; Teri, Hughes, & Larson, 1990), little is known about the occurrence or range of affective experiences exhibited by older adults with dementia. Several researchers have examined the negative aspects of affective experiences, including depression (Lazarus, Newton, Cohler, Lesser, & Schweon, 1987) and agitation/ anger (Cohen-Mansfield, 1986; CohenMansfield & Billig, 1986; Teri, Larson, & Reifler, 1988). However, there is an identified need for information on the occurrence of positive affect in relation to daily experiences (Lawton, 1994; Mace, 1989; Whitehouse & Rabins, 1992).

Measurement of the affective domain of quality of life of individuals with dementia has posed difficulty given their cognitive impairment and inability to report on their experiences. Therefore, researchers have asked family members to serve as surrogate or proxy reporters on behalf of their relatives with dementia (e.g., Albert, Castillo-Castaneda, Sano, Jacobs, Marder, Bell, Bylsma, Lafleche, Brandt, Albert, & Stern, 1996; Lawton, Van Haitsma, & Klapper, 1996; Logsdon & Teri, 1995). Logsdon & Teri (1995) reported that family members who lived with their relative with dementia were able to accurately report on symptoms of depression using modified scales (e.g., Hamilton Depression Scale, Geriatric Depression Scale). Lawton, Van Haitsma, and Klapper (1996) found that family members’ ratings on a six item observational measure (Affect Rating Scale) of affect were significantly related to those of activity staff. The findings of these studies support the use of family members as proxy reporters of their relatives’ affect and daily activity engagement.

Methods for Measuring Time Use and Quality of Experiences. Several approaches, including interview, observational, and time budget methodologies, are typically used to measure the time use of older adults. For instance, Lawton and his colleagues have used “yesterday interviews” that constitute the older adult being interviewed regarding his or her activities and degree of liking for each activity engaged in on the previous day (Moss & Lawton, 1982). Difficulty with accurate recall in regard to amount of time spent in activities speaks to the problems inherent in this approach (Romsa & Blenman, 1989). Furthermore, findings of “yesterday interviews” conducted with caregivers have resulted in separate reports of time use for the caregiver (Moss, Lawton, Kleban, & Duhamel, 1993) and care-receivers (Lawton, Moss, & Duhamel, 1995), with no data on degree of liking or whether activities were shared (i.e., engaged in jointly by the caregiver and care-receiver). Within the context of yesterday interviews, it seems that the degree of difficulty in gathering valid data would be increased when investigating the time use and affect of both the caregiver and care-receiver.

In other work, Lawton and his colleagues have focused on measurement of time use and affect of institutionalized older adults with dementia using observational methods (Lawton, Van Haitsma, & Klapper, 1996). Although data on the validity and reliability of the affect data is promising, this approach does not lend itself for use with community dwelling caregivers and care-receivers. The method would be extremely intrusive due to the need for a researcher to observe behavior in the home environment over an extended period of time.

A third methodological approach to examining daily activity engagement is time budget methodology. Time budgets involve participants reporting on how they use time during 24-hour periods. The flexibility provided caregivers in terms of when they complete the forms increases the usability of this method. Due to the tasks inherent in caregiving, a caregiver may not be able to complete the form following the passage of each half hour time block. Rather, upon completing a caregiving task a caregiver may complete information on two to three half hour time blocks.

Although it has been acknowledged that time budget data typically does not provide data on participants’ perception of quality of time use (Robinson, 1985), researchers have been successful in including items pertaining to the quality of time use (e.g., Hultsman & Russell, 1988; Neulinger, 1981). In addition to gathering the traditional information on time usage, time budget methods allow researchers to include items to gather data on caregivers’ and care-receivers’ affect experienced during reported time use and whether or not the activity was shared (i.e., same activity engaged in by both the caregiver and care-receiver at the same time). A modified time budget provides a promising method for researchers interested in examining the daily experiences of caregivers and care-receivers.

Method

Participants. Six participant dyads, older adults with dementia and their primary caregivers, were recruited for participation in this study (see Table 1). Three of the caregivers were spouses and three were adult daughters. One caregiver was male (also a spouse) and the remaining caregivers were female. The average age of the caregivers was 68 (st.dev. = 11.3). Four of the older adults with dementia were female and two were male; average age was 83.8 years (st.dev. = 14.1). On the Mini-Mental Status Exam (Folstein, Folstein, & McHugh, 1975) scores of the older adults with dementia ranged from 4 to 21 with a mean score of 11.5 (st.dev. = 7), indicating severe to moderate level cognitive impairment (Teri, Larson, & Reifler, 1988). The Katz Index of Activities of Daily Living (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963) uses a dichotomous format (independent = 0, dependent = 1) to rate performance in six activities (i.e., bathing, dressing, toileting, transfer, continence, feeding). The older adults with dementia were dependent in one to six activities of daily living, with five adults dependent in each of the following: dressing, bathing, continence.

Data Collection Process. Caregivers completed two days of a modified time diary reporting their daily experiences as well as those of the older adult with dementia. Entries were for each half hour time block during the day. Each entry contained data on current activity of caregiver and older adult, if the activity was shared (i.e., same activity engaged in by both the caregiver and older adult at the same time), and degree of happiness-unhappiness. The degree of happinessunhappiness experienced by the caregiver and observed in the older adult with dementia were measured using 7-point semantic differential scales. The caregivers reported the older adults’ time use and level of happiness only when they were in the same location. Previous studies have established the reliability of observational ratings of older adults with dementia’s affect through statistically significant correlations between family and staff ratings of affect (Lawton, Van Haitsma, & Klapper, 1996; Logsdon cSr Teri, 1995).

Data Analyses. Based on the activity categories established in previous time budget studies (Hill, 1985; Voelkl, 1990), the activity data were coded into five categories (i.e., daily tasks, self-care, recreation, television, and other). Data on level of happiness were standardized to control for individual response bias and allow for analyses to be conducted on an experience level (i.e., half hour time blocks). Correlations were used to examine the relationship between caregivers’ and care-receivers’ happiness during shared and non-shared activities. The differences on happiness scores in relation to type of shared activity were examined using ANOVAs. Bonferroni method for multiple comparisons was used to compare happiness scores in shared recreation activities to happiness scores in each of the other types of shared activity (i.e., daily tasks, self-care, television, other).

Results

The completed time diaries contained information on 367 half hour time blocks for the older adults with dementia and 362 half hour time blocks for the caregivers (see Table 2). Caregivers spent their time engaged in daily tasks/caregiving (28.5%), self-care (26.5%), recreation (25%), television (16%), and paid work/other (4%). The older adults with dementia spent their time engaged in television (37%), self-care (34.5%), recreation (25.5%), and daily tasks (3%).

Caregivers reported that 55% (n = 196) of the activities were shared and 45% (n = 163) were engaged in independently of the older adult with dementia (see Table 3). Approximately one-quarter of the shared experiences involved self-care activities (24%), followed by television/passive recreation (23%), combined activities (19%), recreation (18%), the caregiver aiding the older adult in a daily task (12%), and daily tasks (4%). The correlations of the caregivers’ and older adults’ happiness scores were statistically significant for both shared activities (r = .51, p

Findings of the ANOVAs indicated that the levels of happiness experienced by caregivers (F(5, 180) = 4.29, p = .001) and older adults with dementia (F(5, 171) = 5.37, p

Discussion

The time diary data generated by the caregivers who participated in this exploratory study have implications for TR practitioners involved in designing and implementing inhome recreation programs for caregivers and care-receivers. A majority of caregivers’ and care-receivers’ time was found to consist of shared activities and their levels of happiness varied significantly in relation to the type of shared activity. More specifically, shared recreation activities were related to high levels of happiness on the part of the caregiver and older adult and these experiences significantly differed from the negative experiences associated with the caregiver assisting the care-receiver with daily tasks. Older adults’ highest level of happiness, however, occurred in daily tasks. The low frequency (i.e., 4%) and novelty of the older adults’ participation in daily tasks may have resulted in high levels of happiness. Involvement in television or combined activities was related to average levels of happiness for both the caregiver and older adult. These `middle of the road’ happiness scores may be related to the passivity inherent in television viewing and the lack of a common focus or purpose in combined activities. Overall, these findings speak to the importance of service providers supporting shared recreation pursuits in the daily lives of older adults with dementia and their caregivers. The positive nature of recreation interactions may be essential to quality of life given the negative nature of activities involving assistance with daily tasks.

The implications for practice must be considered with caution given the small number of caregivers and care-receivers who participated in this study (n = 12 individuals, 6 participant dyads). Continued investigation with a larger number of participant dyads will result in a more comprehensive understanding of shared activities. Data from a larger number of dyads will allow for investigation into the multidimensional nature of quality of life (Lawton, 1991, 1994), including relationships among the care-receivers’ degree of cognitive impairment, physical impairment, and the frequency and quality of shared activities for both the caregiver and care-receiver. There is also a need for continued investigation into the validity and reliability of caregivers’ data on the activity and affect of the older adults with dementia (Lawton, Van Haitsma, & Klapper, 1996).

Further research may also be undertaken to examine the context of “combined” shared activities. When examining activities that the caregivers had identified as “shared,” it was found that a majority (72%) were comprised of the same reported activity for the caregiver and care-receiver (i.e., television, self care, recreation, daily tasks) or involved the caregiver assisting the care-receiver with daily tasks (12%). The category of “combined activities” contained different activities that were engaged in simultaneously on the part of the caregiver and care-receiver, such as meal prep and TV, reading and TV, and cleaning and reading. The context of these shared activities may be similar to how some groups of women have traditionally identified family leisure as containing a variety of activities engaged in simultaneously (Henderson, Bialeschki, Shaw, & Freysinger, 1996).

The compliance of all six caregivers in completing the diaries for two days indicates the promise of this method for assessing the shared activities of caregivers and older adults with dementia. The use of the modified time diary as an assessment and evaluation tool allows TR practitioners to understand the type of activities engaged in and the perceived quality of that engagement, as well as differences in the amount of time spent in shared and unshared activities. As the in-home experiences of caregivers and care-receivers are better understood, practitioners and researchers may also examine the use of event diaries to measure only shared activities (e.g., Nezlek, Wheeler, & Reis, 1983; Wheeler & Reis, 1991). Continued refinement of diary methods to measure the quality of shared activities will benefit TR specialists who are seeking to evaluate the impact of in-home recreation programs on the leisure functioning of the older adults with dementia and their caregivers.

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Voelkl is with the Department of Sport, Health, Leisure, and Physical Studies, University of Iowa. This research was supported by a University of Iowa Old Gold Fellowship.

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