Effectiveness of Interventions Designed to Modify the Activity Demands of the Occupations of Self-Care and Leisure for People With Alzheimer’s Disease and Related Dementias

Matching Client Skills and Interests

Evidence from 4 Level I studies (Dooley & Hinojosa, 2004; Gitlin et al., 2008; Kolanowski, Buettner, Costa, & Litaker, 2001; Spector et al., 2003) and 1 Level III study (Rogers et al., 1999) suggests that selecting or modifying activities that match the person’s highest level of retained skills can improve participation in ADLs and other occupations. Most of these studies had small samples and relied on subjective or observational outcome measures, which limit the generalizability of results. However, the consistency of results among the studies suggests that preliminary evidence exists that modifying activities to match them to the client’s skills and interests is a useful intervention strategy.

Gitlin et al. (2008; Level I, N = 40) provided a tailored activity program to people with AD after completing a semistructured clinical interview and the Pleasant Event Schedule with caregivers to identify previous and current activity interests. They also observed dyadic communication and home environmental features and assessed dementia patients using the Dementia Rating Scale and Allen’s observational craft-based assessments. Three activities per patient were then developed on the basis of assessments that identified cognitive capacities in areas of memory, language, conceptualization, attention, construction, and initiation and also evaluated cueing requirements, ability to follow directions and problem solve, and prior interests and roles (e.g., homemaker, carpenter). Caregivers were instructed in stress-reducing techniques (deep breathing) to establish a calm emotional tone. Caregivers were also instructed in strategies to simplify the setting of the activity (e.g., removing unnecessary objects, placing materials in the patient’s line of sight), simplify the activity itself (e.g., providing one part of a project at a time, extending time for completion of task), and enhance participation (e.g., drawing on the patient’s past interests, monitoring for frustration) and effective communication (e.g., using encouraging remarks; providing short, clear instructions). At the end of nine sessions over 4 mo, the main outcomes included a reduced number of problematic behaviors (shadowing, repetitive questioning, agitation). Caregivers reported a significant enhancement in the ability of patients with dementia to derive pleasure and engage in activities.

Similarly, Kolanowski et al. (2001; Level I, N = 10) tested the utility of theory-based activity selection for addressing behaviors such as screaming, wandering, and physical aggression that commonly occur with people who have dementia. The basis of the theory is that leisure behavior is continuous over time and that satisfaction with leisure is dependent on self-selection of activities. However, because people with dementia have difficulty with structuring their own activities and communicating their desire for specific activities, informant reports of premorbid personality must be used to identify engaging activities. Kolanowski et al. argued that dementia behaviors result from the interplay of stable background factors (such as neurological condition, cognitive and physical abilities, and premorbid personality) and more changeable proximal factors (such as physiological and psychological needs and qualities of the social and physical environment). The intervention targeted these later factors for manipulation. First, activities were matched to current cognitive and physical abilities so that they afforded the opportunity for participation. Then they were matched to premorbid interests and personality along a scale of extroversion and openness. Kolanowski et al. reported the intervention to be effective for increasing mean time spent on task, although it did not result in a significant difference in the degree of participation between intervention and control groups.

Spector et al. (2003; Level I, N = 209) tested an intervention program based on theoretical concepts of reality orientation and cognitive stimulation. This program included use of money, word games, famous face recognition, and present-day orientation accompanied by multisensory stimulation. A range of activities were adapted to match ability using cognitive stimulation therapy to emphasize use of information processing rather than factual knowledge. Cognitive stimulation therapy consisted of the use of a personalized orientation board with identifying information as well as reminders of the topic of the current session (money management, word games, present day, and faces). Spector et al. found that the intervention resulted in significant improvements in cognition and quality of life for people with dementia compared with control groups engaging in typical daily activities. The outcomes for functional ability, communication, anxiety, or depression were modest, and they found no differences in that regard between patients receiving cognitive stimulation therapy and usual care.

Dooley and Hinojosa (2004; Level I, N = 40) derived individualized occupational therapy recommendations for people with AD living in the community by using the Assessment of Instrumental Function. Specific recommendations included caregiver approaches (such as cueing to break down tasks, giving step-by-step instructions, structuring daily routines, and suggesting activities when the client is not occupied), environmental modifications (such as changes in the physical surroundings through use of visual cues, labeling drawers and cabinets), and community-based assistance (such as support groups, home-delivered meals). After a short orientation, caregivers implemented the recommendations, and the researchers conducted follow-up assessments. This short occupational therapy intervention resulted in significant improvements in quality of life, positive affect, and independence in self-care of the people with AD. In addition, caregivers had significantly lower feelings of burden.

Rogers et al. (1999; Level III, N = 40) implemented a skill elicitation (SE) program to ascertain the task skills retained by nursing home residents with probable or possible AD. The program consisted of an individualized three-category, five-level hierarchy of assists (actions initiated by the caregiver to further task completion) and task analysis. Assists were hierarchically arranged from least aid (nonphysical and nondirective) to most aid (physical support and help). Dressing, bathing, toileting, oral hygiene, and grooming were divided into chains of smaller discrete task skills. Assists were provided during these activities, beginning at the lowest level and increasing until the older adult was able to demonstrate the task skill. Once the assist level needed was identified, it—or a lower-level assist—was used to facilitate continued use of the skill during morning care. Other procedures involved positioning the older adult appropriately for task participation, modification of task methods or materials, and training in the use of adaptive equipment when necessary. Compared with participants receiving usual care, SE participants exhibited greater independence in performing dressing tasks, participated more in assisted dressing, and asked more appropriately for assistance with ADLs. The SE intervention was followed by a period of habit training, during which Rogers et al. expected that assist would be reduced because subtask skills were recovered. However, during this period skills were maintained, and the goal of achieving even greater gains was not accomplished. The researchers concluded that SE was effective in supporting skill retention.

Use of Cues

One Level I and 2 Level III studies were designed to test the effectiveness of verbal or visual cues, although most of the other reviewed studies included some discussion about this intervention. For example, Gitlin et al. (2008) evaluated participants’ cueing requirements to develop activity prescriptions that matched the older adults’ capabilities. The skill elicitation intervention tested by Rogers et al. (1999) relied on an assist hierarchy to identify older adults’ skill level in accomplishing self-care occupations. All levels included some form of verbal cues on a continuum from neutral statements to verbal requests to initiate, continue, or terminate an action; to step-by-step instructions; to gestural cues such as tapping the knee. In their program, Spector et al. (2003) used a reality orientation board that displayed both personal and orientation information to provide some form of continuity for older adults with AD. Dooley and Hinojosa (2004) developed individualized programs that included methods for caregivers to cue the person with AD to perform at the highest level possible. Examples include breaking down the task to give directions one step at a time, suggesting activities to the person when he or she is not occupied, and gently reminding the person to use visual cues and adaptive equipment. Such cues contributed to the overall effectiveness of the program, which also included environmental modifications and structured daily routines.

Coyne and Hoskins (1997; Level I, N = 24) specifically set out to determine the effect of directed verbal prompts and positive reinforcement on the level of eating independence of nursing home residents with dementia. They used standardized, directive phrases that matched subtasks of eating (such as “pick up the fork,” “put the food on the fork,” and “move the fork to your mouth”) and verbal praise (such as “good” or “that’s right”) for successful completion of the subtask. The experimental group demonstrated significantly improved performance after the treatment, although retention decreased, indicating that such cues afforded opportunities to maximize functioning.

In addition to developing individualized interventions that matched meaningful occupations with the client’s motor and process skill strengths and deficits, Chard, Liu, and Mulholland (2009; Level III, N = 5) tested the effectiveness of caregiver training to provide verbal cues and reinforcement with residents of an assisted living facility who had AD. Rather than action commands, caregivers were to use circumlocution (or talking around the problem) when participants had difficulty proceeding with a task. For example, if the participant asked a question such as “Where is the bread?” the caregiver was to facilitate progress by responding, “Where do you usually keep it?” or “Have you looked in the cupboard?” Verbal reinforcements were used to strengthen verbal cues by repeating the messages. Together with environmental modifications, cues were effective in helping all participants make significant gains in processing abilities, and some participants showed improvement in motor skills during ADLs and other occupations.

Finally, Cevasco and Grant (2003; Level III, N = 26) studied the effect of adding verbal and visual cues to exercise with music for clients with AD. They tested the effect of two methods of cueing (verbal cues at the beginning, followed by visual cues, and verbal cueing throughout the exercise). They also compared the effect of these methods of cueing on participation in exercise while the clients produced music with instruments or vocally. Cevasco and Grant concluded that continuous cueing elicited significantly more participation. They found little difference between continuous verbal cueing and initial verbal cueing followed by visual cues. They also reported that participation in exercise was greater during instrumental music than during vocal music. They concluded that perhaps clients in the later stages of AD are not capable of attending to multiple auditory stimuli or performing multiple tasks simultaneously.

Again, the results of these studies can only be considered preliminary because they all had small samples. The use of convenience (Cevasco & Grant, 2003) and nonrepresentative (Chard et al., 2009; Coyne & Hoskins, 1997) samples were additional methodological limitations that reduced the generalizability of these studies’ results.

Compensatory and Environmental Strategies

Several studies used compensatory or environmental modifications as part of the overall intervention, although only 3 Level I studies (Dooley & Hinojosa, 2004; Graff et al., 2006; Watson & Green, 2006) and 1 Level III study (Chard et al., 2009) specifically set out to evaluate their effectiveness. Some of the other studies included environmental modifications, training with any newly prescribed adaptive equipment (e.g., extended handles), or both if an individualized patient program required it (Kolanowski et al., 2001; Rogers et al., 1999; Spector et al., 2003).

Dooley and Hinojosa (2004; Level I, N = 40) incorporated environmental modifications into the caregiver strategies they used in their occupational therapy intervention with people with AD living in the community. This category was broad because such modifications were individualized to each participant. The most commonly recommended modifications were visual cues such as posting emergency telephone numbers or labeling drawers and cabinets. Other environmental modifications included bells and baby monitors at the front door of the home so the person with AD would not wander, adaptive devices such as pill reminder boxes, and so on. As noted earlier, the intervention resulted in significant improvements in quality of life, positive affect, and independence in self-care of the people with AD and lower feelings of caregiver burden.

Graff et al. (2006; Level I, N = 135) assessed the daily function of patients with dementia and caregiver burden before providing occupational therapy, including cognitive and behavioral intervention to train patients in the use of aids to compensate for cognitive decline and to train caregivers in coping behaviors and supervision. An occupational therapist evaluated the patient’s home and environment and observed the patient’s ability to perform daily activities and use of compensatory and environmental strategies. Compensatory strategies were described as the adaptation of ADLs to patients’ disabilities, and environmental strategies were described as adaptation of the patients’ environment to their cognitive disabilities. Graff et al. found the intervention to be effective in improving patients’ daily function and decreasing caregiver burden, and the effect was sustained at follow-up.

In a systematic review of research literature published between 1993 and 2003, Watson and Green (2006; Level I, N = 13) appraised 13 studies related to the effectiveness of interventions to promote oral intake of older people with dementia. Quiet music was the most common intervention used, but other environmental changes were also studied, such as changes from preplated to self-serve meal systems, feeding by multiple caregivers at meal time, change of meal setting, and changes in food texture and appearance. All interventions were reported to be effective in improving nutritional intake, although Watson and Green noted that none of the studies addressed confounding factors well.

As noted earlier, Chard et al. (2009; Level III, N = 5) found that statistically significant improvements in ADL ability resulted when individualized interventions were developed and meaningful occupations and cues were matched to the client’s motor and process skill strengths and deficits. Environmental modifications designed to ensure facilitation of performance rather than telling participants what to do or doing it for them supported greater independence in ADLs and were an integral part of these programs. Such modifications included placing labels on drawers and closets, setting up the workstation with items visible, removing distracting items from work spaces before tasks were initiated, and providing ADL equipment. Chard et al. concluded that an enabling approach (rather than providing direct assistance or caregiver intervention) was critical in maintaining participants’ engagement.

These studies used small and somewhat nonrepresentative samples, which limited the generalizability of results. The heterogeneity of interventions and difficulty in accounting for confounding factors such as comorbidities, use of medications, and participation in other therapies reduce the confidence with which the results can be applied to intervention with people with AD. The studies highlight the difficulty of carrying out research in this area. Randomized trials are difficult to carry out in a controlled manner in settings in which people with dementia are cared for, particularly in light of the need to individualize intervention. However, the interventions tested in these studies hold promise, and further testing is needed.