Using Occupations to Improve Quality of Life, Health and Wellness, and Client and Caregiver Satisfaction for People With Alzheimer’s Disease and Related Dementias

Lori Letts; Mary Edwards; Julie Berenyi; Kathy Moros; Colleen O’Neill; Colleen O’Toole; Colleen McGrath

doi:10.5014/ajot.2011.002584

Abstract

An evidence-based review was undertaken to answer the question, “What is the evidence for the effect of interventions designed to establish, modify, and maintain activities of daily living (ADLs), instrumental activities of daily living (IADLs), leisure, and social participation on quality of life (QOL), health and wellness, and client and caregiver satisfaction for people with Alzheimer’s disease and related dementias?” A systematic search of electronic databases and application of inclusion and exclusion criteria guided the selection of 26 articles. Limited high-level evidence on ADL interventions was identified. IADL interventions for people living in the community showed promise. Tailored and activity-based leisure interventions were common and seemed to have positive impacts on caregiver satisfaction, and some interventions had positive results for client well-being and QOL. Social participation interventions focused on people with dementia still able to engage in verbal social interactions; these interventions had at least short-term positive effects.

The objectives of this review were to systematically search the literature and then critically appraise and synthesize the applicable evidence to address the focused question, “What is the evidence for the effect of interventions designed to establish, modify, and maintain activities of daily living (ADLs), instrumental activities of daily living (IADLs), leisure, and social participation on quality of life (QOL), health and wellness, and client and caregiver satisfaction for people with Alzheimer’s disease (AD) and related dementias?”

Background and Statement of Problem

People with AD or related dementias frequently experience challenges in maintaining their abilities to participate in occupations that contribute to their QOL, their health and wellness, and their own and their caregivers’ satisfaction (Egan, Hobson, & Fearing, 2006). Occupational therapy practitioners organize their understanding of occupations into eight main areas: ADLs, rest and sleep, IADLs, education, work, play, leisure, and social participation (American Occupational Therapy Association [AOTA], 2008). Of these, five are most relevant to the population of people with AD or related dementias, most of whom are older adults, retired from paid work. Relevant areas of occupation include ADLs, which consist of caring for oneself through such activities as bathing, toileting, eating, and dressing; rest and sleep; IADLs, which include household management and community activities such as meal preparation, cleaning, driving, and banking; leisure, which includes the free-time activities in which people engage for pleasure; and social participation, which includes engaging with family, friends, and others in community contexts. Family and other caregivers provide a high degree of support as AD or related dementias progress, frequently assisting the person with dementia in the completion of tasks or assuming responsibility for activities that the person can no longer manage even with assistance.

Because AD and related dementias have a major impact on the occupations of people with dementia and their caregivers, occupational therapy practitioners are often asked to assess and provide interventions to optimize occupational performance. Referrals may come to community-based occupational therapy practitioners for services to people with AD or related dementias who continue to live in their own homes with primary support from informal caregivers. Other referrals may come via residential or long-term care facilities, with a focus on people with AD or related dementias, their families, and formal caregivers in the facilities. Occupational therapy practitioners work to maintain or modify occupations to promote health, QOL, and client and caregiver satisfaction. The effectiveness of these interventions has not been clearly established.

Method for Conducting the Evidence-Based Review

Arbesman and Lieberman (2011; this issue) summarized the method for this review. We initially completed the search in 2005; however, during the process of appraising and synthesizing the evidence for the review, we monitored the occupational therapy literature for new publications with direct relevance to the topics of the search. When the original search was conducted, the Occupational Therapy Practice Framework (AOTA, 2002) did not include sleep and rest as distinct areas of occupation; they now appear in the second edition of that document (AOTA, 2008). Therefore, this review is focused on only four types of occupations: ADLs, IADLs, leisure, and social participation. Sleep and rest are considered ADLs.

Results

The 2005 literature search and application of the inclusion and exclusion criteria resulted in 24 articles selected for the review. During the review process, we identified 2 other studies from the occupational therapy literature (1 in 2007 and 1 in 2008) that had direct relevance to the topic, and we decided to include them in the review, resulting in a total of 26 articles included in the review.

Articles reviewed included 7 Level I (systematic reviews, meta-analyses, and randomized controlled trials [RCTs]), 1 Level II (two-group, cohort, or case–control studies in which assignment to a treatment or a control group is not randomized), 11 Level III (one group, nonrandomized, before and after, or pretest and posttest studies), 7 Level IV (single-case experimental design, sometimes reported over several participants), and no qualitative reports.

Supplemental Table 1, which contains information about each of the studies (objectives, design, interventions, outcomes, results, and limitations), is available online at www.ajot.ajotpress.net (navigate to this article, and click on “supplemental materials”).

Activities of Daily Living

No Level I or II studies and only 5 Level III studies on ADL interventions were available for review. One study focused on direct individual treatment that modified or improved ADLs through the prescription of assistive devices for residents in the early stages of dementia (Nochajski, Tomita, & Mann, 1996; Level III, N = 20). This pretest–posttest study (reported in two publications) focused on the use of assistive devices with training in their use. Participants were more likely to receive and adopt physical devices (e.g., bathroom aids, mobility aids), with 68% receiving them, than cognitive devices (e.g., cue cards, speed-dial telephones), used by 48% of participants. However, participants reported higher satisfaction with cognitive devices. A follow-up study 1–2 yr after the intervention noted that device use and satisfaction had declined, as did overall function (Yang, Mann, Nochajski, & Tomita, 1997; Level III, N = 10). However, only half of the original sample could be located for follow-up, and of those, only 7 people with dementia were still living.

As the disease progresses and people with dementia experience more decline, the focus for occupational therapy seems to shift to providing training and support to residents with dementia and staff to prevent excess disability and to enable remaining abilities. In particular, the focus has been on the occupation of feeding and eating with the outcome of maintaining health through weight maintenance. In one study, a behavioral intervention was adopted to prevent people with probable AD from wandering from the table at mealtime (Beattie, Algase, & Song, 2004; Level III, N = 3). All 3 participants had significant improvements in the amount of time sitting at the table (ps = .0005, .0009, and .0600); 2 showed significant improvements in food intake (ps = .969, .000, and .000). Although no significant difference in body weight occurred, Beattie et al. (2004) found evidence of weight maintenance during the study. This weight maintenance may be clinically important because all 3 participants were on a weight-loss trajectory before the study. In a second feeding intervention study, Van Ort and Phillips (1995; Level III, N = 8) compared a contextual and a behavioral intervention, both of which were designed to increase self-feeding behaviors. Although Van Ort and Phillips reported that both groups maintained body weight as a proxy for health, their article did not report statistical data, making it difficult to appraise the degree of behavioral change. Finally, a repeated-measures study examined the impact of changing food textures on food intake and weight maintenance (Boylston, Ryan, Brown, & Westfall, 1995; Level III, N = 14). The findings suggested that when people show a behavioral intolerance for food texture, softening the diet can increase intake and result in maintaining weight. In addition, adjusting food texture (from regular to soft or puree) may assist with weight maintenance, which is an indicator of health outcome; however, this finding was not statistically significant (p = .19).

One study focused on the impact of family-style meals to improve participation and communication during mealtime (Altus, Engelman, & Mathews, 2002; Level III, N = 6). The intervention resulted in modest increases in participation (from 10% to 64%) and communication (from 6% to 18%) during mealtimes, but only when staff training in prompting and praising was added to the intervention.

In summary, ADL interventions are most prevalent in the area of feeding, with food intake and weight as common outcomes. Although assistive devices are interventions likely to be frequently used by occupational therapy practitioners, we identified only one study reported in two publications that examined use of and satisfaction with assistive devices for people with AD or related dementias and their family caregivers.

Instrumental Activities of Daily Living

Three Level I and 2 Level III studies focused on interventions using IADLs. Of those, 2 Level I studies and 1 Level III study focused on home-based interventions for people living in the community. The remaining studies reported on participants living in residential care settings.

Graff et al. (2007; Level I, N = 135) demonstrated the effectiveness of a community-based occupational therapy intervention for people with mild to moderate dementia. The intervention group of clients and their caregivers received 10 home-based occupational therapy visits over 5 wk. People with dementia reported significantly better QOL (effect size = 1.3, p < .0001) and general health status (effect size = 0.8, p < .0001) at 6 wk, and the findings were maintained at 12 wk. Similar findings were reported for caregiver QOL and health status. The intervention included identifying occupational performance issues, goal setting, and helping participants implement compensatory and environmental strategies. These results built on those of a previous single-group pilot study (Graff, Vernooij-Dassen, Hoefnagels, Dekker, & de Witte, 2003; Level III, N = 12) that implemented a 7-wk intervention (maximum of 10 home visits) and demonstrated positive outcomes in satisfaction with performance for clients and caregivers (p = .002).

Dooley and Hinojosa (2004; Level I, N = 40) suggested that an occupational therapy home assessment followed by written recommendations and one follow-up visit to discuss the implementation of the recommendations may improve QOL and decrease caregiver burden more than only an initial home assessment and receipt of recommendations by mail. In comparing outcomes between the two groups, they found significant group effects for positive affect, activity frequency, self-care status, and caregiver burden (p < .001).

In a study conducted in a dementia care unit, Fitzsimmons and Buettner (2003; Level I, N = 12) found that a regular (daily) therapeutic cooking group for residents had a significant positive impact on behavioral outcomes (reduced agitation and passivity). In addition, blood pressure (as a proxy for health) increased as engagement increased and decreased as agitation decreased (p < .067), suggesting health benefits from the intervention.

Avila et al. (2004; Level III, N = 5) pilot tested a neuropsychological rehabilitation intervention (including errorless learning, memory training, and IADL training). They noted modest improvements on most scales after treatment. QOL improved for patients and caregivers, but the changes were not statistically significant (for patients, p = .60; for caregivers, p = .83). Similarly, they found a trend toward improved cognition and ADL function. However, participants also received pharmacological interventions, and attributing the findings to the neuropsychological rehabilitation interventions alone is difficult.

In six descriptive case studies, Topo, Jylha, and Laine (2002; Level IV, N = 6) showed that an easy-to-use telephone (with identifying photos and preprogrammed numbers) resulted in clients’ slightly improved ability to use the phone. Family caregivers reported increased satisfaction with clients’ telephone use. However, the findings are based on a family questionnaire developed by Topo et al.

In the area of IADLs, the evidence related to home-based occupational therapy interventions for people with AD or related dementias and their caregivers has shown significant promise. Two RCTs and a single-group pilot study have demonstrated positive findings in caregiver and client satisfaction. However, the two interventions have major differences between them, with one involving 10 visits over 5 wk and the other involving a total of 2 visits. Other IADL interventions that have shown some promise include therapeutic cooking groups in a nursing home setting and adapted telephones.

Leisure

Two Level I studies and 4 Level III studies focused on leisure interventions. All but one study were conducted in nursing homes or other long-term care facilities; one was conducted in clients’ own homes in the community with informal caregivers.

A randomized controlled pilot study evaluated a tailored activity program as a way to involve people with dementia in activities (often but not exclusively leisure based) to reduce behavioral disturbances and caregiver burden while improving activity engagement (Gitlin et al., 2008; Level I, N = 60). The home-based intervention included six home visits by an occupational therapist who used assessment with the client and caregiver to design activity prescriptions. The intervention was grounded in client-centered occupational therapy practice, with emphasis on activity analysis and modification. After 4 mo, Gitlin et al. (2008) found no statistically significant differences between the intervention and control group participants in QOL (p = .095); however, in examining outcomes with the intervention group, the program was readily accepted by people with dementia and rated positively by caregivers (indicating high client and caregiver satisfaction). Although QOL outcomes were not improved, studying this intervention further with outcomes such as caregiver burden, activity, and participation may be worthwhile.

One study compared the impact of a kit-based activity intervention with a time and attention control group on reducing apathy and improving QOL of people in a long-term setting (Politis et al., 2004; Level I, N = 37). Both groups had significant improvements in all outcomes, including QOL, but Politis et al. (2004) found no significant differences between groups, suggesting that informal interactions are as effective as expensive activity kits in improving outcomes.

Two related studies focused on the effect of introducing sensorimotor recreational items to family and other visitors in nursing homes. In the first study (Buettner, 1999; Level III, N = 149), the items were developed and tested at two sites, with satisfaction with visits improving significantly during the intervention period compared with the nonintervention period (Site 1, p < .011; Site 2, p < .000). In a second study, satisfaction with visits again improved significantly with the introduction of the structured activities (Colling & Buettner, 2002; Level III, N not reported). However, without a description of the sample or sample size in this second study, it is difficult to interpret or generalize the findings.

A cross-sectional study looked at the types of leisure activities in which nursing home residents engaged and their relationship to well-being (Chung, 2004; Level III, N = 43). Positive relationships were shown between well-being and activities that had potential for social interaction (p < .001) across three levels of cognitive impairment experienced by nursing home residents in Hong Kong. The study sample was small for the analyses conducted, and the analyses were cross-sectional, making it impossible to assume that activity differences between groups were linked to the progressive nature of dementia. However, the findings suggested that activities that encourage social interaction might have a positive relationship to well-being.

Another study introduced music therapy to residents of residential care homes while family members were visiting, which resulted in a significant change in caregiver satisfaction with visits (p = .017; Clair & Ebberts, 1997; Level III, N = 15). Caregivers’ measures of depression, burden, positive and negative affect, and self-reported health did not change. Occupational therapy practitioners may be able to suggest music as one part of a leisure program for clients with AD or related dementias if the goal is to improve caregiver satisfaction with visits.

Three Level IV studies were identified related to leisure. Two studies involved the introduction of specific kits or activities to residents of nursing homes with AD or related dementias. Crispi and Heitner (2002; Level IV, N = 29) developed 10 activity kits. Family members who used the kits during visits reported that they improved the quality of visits and residents’ QOL. Rentz (2002; Level IV, N = 41) reported on the development and pilot evaluation of an art intervention for people with early and midstage dementia. The results suggested positive outcomes in well-being in terms of activity engagement. Pool (2001; Level IV, N = 30) described the development of a person-centered model of care based on implementation of individualized meaningful activities. Positive results in well-being were reported for 57% of residents.

The findings on leisure interventions suggest that leisure activities that involve social interaction may be the most promising for occupational therapy practitioners to recommend for people with AD or related dementias and their caregivers, especially in the context of long-term care. Although many of the studies did not demonstrate positive outcomes in QOL, they did have positive findings for outcomes such as activity engagement and caregiver satisfaction with visits. Limitations in the conceptualization and measurement of QOL for this population may be challenging.

Social Participation

Two Level I studies, 1 Level II study, and 2 Level IV studies focused on social participation. These studies included a variety of interventions, such as a volunteer intervention, a life-story approach to reminiscence, and drama. Most involved people in the early or middle stages of dementia.

An RCT provided some evidence for caregiver satisfaction outcomes resulting from a volunteer intervention program that consisted of walking when able, crafts, conversation, or cognitive stimulation compared with a wait-list control group (Wishart et al., 2000; Level I, N = 24). The intervention involved volunteer visitors making weekly home visits to people with dementia. The satisfaction data were collected only from caregivers in the intervention group; no comparison group data exist. Because caregivers might possibly be satisfied with any intervention that involved trained volunteers, further study comparing a volunteer intervention program with an attention control intervention is warranted. Other data presented in the article suggest that this intervention may provide benefits in relation to caregiver burden; data on care recipient or caregiver health outcomes would be valuable.

A second RCT compared well-being outcomes in a reminiscence group with those in a group participating in general discussions and a control group receiving no intervention (Lai, Chi, & Kayser-Jones, 2004; Level I, N = 101). Although the reminiscence group showed significant improvements in well-being (p = .014), Lai et al. (2004) found no statistically significant differences between groups over time. Thus, although well-being appears to have improved as a result of the reminiscence intervention, the improvements were not significantly different from those resulting from engaging people with AD or related dementias in general conversations or no intervention at all.

In another study, people with dementia in a psychiatric day hospital were enrolled in a drama group and their health outcomes were compared with those of people not selected for the group. The drama group experienced deterioration in general health compared with those not involved; the difference was reported as not statistically significant, although p values were not reported (Wilkinson, Srikumar, Shaw, & Orrell, 1998; Level II, N = 16). Because the sample size was small and group allocations were not random, reaching any conclusions about this intervention as a form of social participation or about its potential harm is difficult.

Two descriptive studies were also identified that examined interventions using social participation. In one single-case design study, volunteers reported increased satisfaction in social interactions with day care clients with dementia when a memory wallet intervention was introduced (Bourgeois & Mason, 1996; Level IV, N = 4). The memory wallets were individualized and used by volunteers and family visitors to guide conversations. In a repeated-measures study, well-being was higher for day hospital participants with AD or vascular dementia engaged in a reminiscence activity than in structured group activities or unstructured time (p < .001; Brooker & Duce, 2000; Level IV, N = 25). However, carryover between group interventions was possible. Well-being was measured during the activities, but changes in overall well-being after the intervention were not examined.

In summary, evidence exists regarding social participation interventions for people in the early to middle stages of AD or related dementias; many types of interactions may have positive outcomes in terms of well-being and satisfaction with this population. No specific intervention stands out as most effective.

Summary and Discussion

We examined interventions that engaged people with AD or related dementias in the occupations of ADLs, IADLs, leisure, and social participation, with outcomes related to health, well-being, and client and caregiver satisfaction. Thus, occupation is the means through which the examined interventions were offered rather than the outcome of interest. A future review may find considering occupational outcomes from these types of interventions worthwhile; however, including those types of studies was beyond the scope of this evidence-based review.

In the area of ADLs, we found it surprising that no high-level studies were available to guide occupational therapy practitioners to assess, plan, and implement interventions for people with AD or related dementias in an area of function that is significantly affected by the condition. Most of the evidence available on ADL interventions has a focus on feeding in mid- to late stages of AD and related dementias. Several strategies can be used to address self-feeding and food intake, with outcomes such as behavior or weight as a proxy for health status. Some promising strategies have been reported, but these strategies require further testing using more rigorous designs to establish their effectiveness.

For IADL interventions, promising evidence exists on the effectiveness of home-based community occupational therapy interventions for people with AD or related dementias and their caregivers in the early stages of dementia. An assessment in the home followed by environmental and compensatory strategies appears to improve health and QOL for people with dementia and their caregivers. However, more study is needed to establish the minimum number of visits required to have positive, long-term effects. In long-term care facilities, a therapeutic cooking group and an adapted telephone showed promise, although more rigorous research is also needed to test these interventions.

In leisure interventions, several kit-based or activity interventions were reviewed. Many of them were developed for family or informal caregivers to use to structure visits with nursing home residents with AD or related dementias. Although the findings from these studies did not indicate a significant improvement in QOL, other outcomes such as caregiver satisfaction were noted to be positive. Together, these studies suggest that offering caregivers structured leisure activities to use during visits with people with AD or related dementias may be appropriate, which appears to be in line with a more recent trend to use Montessori-based activities with people with AD or related dementias (e.g., Jarrott, Gozali, & Gigliotti, 2008). Interventions that incorporate both leisure and social interactions do appear to overlap; the most promising leisure interventions also involve people with AD or related dementias in social interactions.

The social participation interventions included in this review tended to be designed for people in the early to middle stages of AD or related dementias, which may be linked to the people’s verbal abilities in the early stages of their condition. Such interventions may provide valuable structure to guide social interactions. However, occupational therapy practitioners may want to consider the ways in which the occupation of social participation could be maintained even when verbal abilities decline in the later stages of the disease. Little evidence is available that describes or evaluates such interventions, even though social participation is an important occupation for people with limited verbal abilities.

Exemplars for Practice, Education, and Research

On the basis of this evidence-based review’s findings, the following exemplars provide summaries of the ways in which the evidence can be applied in practice and education.

Exemplars for Practice

Assistive devices that are either physical or cognitive can be considered to support ADLs in people with AD or related dementias, but their usefulness may need to be monitored as the condition progresses.
In the community, a home-based occupational therapy intervention that includes IADL assessment and recommendations to promote abilities may be beneficial in improving QOL and health of clients with AD and related dementias and their caregivers.
Leisure interventions that are individually tailored or selected from a range of activity kits may promote improved satisfaction for caregivers of people with AD or related dementias. Occupational therapy practitioners could be involved in designing such activities or kits.
Social participation interventions that structure conversations may be useful for people with AD or related dementias who continue to be verbal.

Exemplars for Education

Occupational therapy students need to have a good understanding of the ways in which occupations change over the course of AD and related dementias and the impact that these occupational changes have on caregivers.
Skills in home assessment and IADL activity modification may be valuable for students in occupational therapy programs to acquire.
A good understanding of leisure and social participation as occupations is needed; understanding activity and occupational analysis would be beneficial to optimize the ability of future occupational therapy practitioners to design and modify occupational interventions for people with AD and related dementias.

Exemplars for Research

Studies of higher-level design are needed to guide occupational therapy practitioners in assessing, planning, and implementing interventions in the area of ADLs.
More study is needed to establish the minimum number of community-based or home visits required to have positive, long-term effects.
Therapeutic cooking groups and adapted telephones showed promise in skilled nursing facilities, although more rigorous research is needed to test these interventions.
Research is needed on how social participation can be maintained when verbal abilities decline in the later stages of AD. Little evidence is available that describes or evaluates such interventions even though social participation is an important occupation for people with limited verbal abilities.

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*Studies included in the review.