Language-enriched exercise plus socialization for older adults with dementia: translation to rural communities.

Asenath La Rue, Ph.D.,1 Kristen Felten, M.S.W., A.P.S.W.,2 Kathie Duschene, B.S.,3 Dana MacFarlane, B.S.,4 Susan Price,5 Suanne Zimmerman, B.S.,6 and Stephanie Hafez, B.S.6

ABSTRACT

Interventions that stimulate and engage individuals with dementia physically, cognitively, and socially offer promise for improving health and well-being and for potentially slowing functional losses with disease progression. We describe a volunteer-based intervention that combines physical exercise, cognitive-linguistic stimulation, and social outings for older persons living with dementia in rural communities. One-year followup data, although clearly preliminary (n ¼ 8), suggest stability in global cognition, mood, and aspects of physical fitness. Challenges to implementing dementia interventions in rural areas are discussed. KEYWORDS: Dementia, exercise, cognitive stimulation,

socialization

Learning Outcomes: As a result of this activity, the reader will be able to (1) list benefits of physical exercise and cognitive-linguistic stimulation for individuals with dementia; (2) identify benefits and limitations of volunteer-assisted interventions for individuals with dementia.

T

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he Wisconsin Department of Health Services (DHS), in collaboration with univer-

sity and community partners, has recently implemented an evidence-informed intervention

1 Wisconsin Alzheimer’s Institute, School of Medicine and Public Health, University of Wisconsin–Madison, Madison, Wisconsin; 2Office on Aging, Wisconsin Department of Health Services, Madison, Wisconsin; 3Greater Wisconsin Agency on Aging Resources, Madison, Wisconsin; 4 Alzheimer’s Support Center of Rock County, Janesville, Wisconsin; 5Aging and Disability Resource Center of Eagle Country, Richland Center, Wisconsin; 6Aging and Disability Resource Center of Southwest Wisconsin, Monroe, Wisconsin. Address for correspondence: Asenath La Rue, Ph.D., Wisconsin Alzheimer’s Institute, School of Medicine and

Public Health, University of Wisconsin–Madison, 7818 Big Sky Drive, suite 215, Madison, WI 53719 (e-mail: [email protected]). Early Intervention for Acquired Neurological Disorders; Guest Editor, Lyn S. Turkstra, Ph.D. Semin Speech Lang 2013;34:170–184. Copyright # 2013 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 5844662. DOI: http://dx.doi.org/10.1055/s-0033-1358370. ISSN 0734-0478.

This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.

Language-Enriched Exercise plus Socialization for Older Adults with Dementia: Translation to Rural Communities

called Language-Enriched Exercise plus Socialization (LEEPS) for older adults with dementia. LEEPS is patterned after original research by Arkin,1 with several adaptations designed to increase the appropriateness of the intervention for rural and minority persons. We briefly review the scientific literature in support of psychosocial interventions for older adults with dementia, describe the rationale for LEEPS and its procedures, and report preliminary findings from the first 15 months of data collection.

BACKGROUND Alzheimer disease (AD) and related dementias (ADRD) present a major challenge to health care systems and society as a whole. Dementia is prevalent among older adults; symptoms are usually progressive and of long duration, there are no disease-modifying therapies at this time, and medical and community care systems are poorly equipped to deal with the complex functional, emotional, physical, and social consequences of dementing conditions. According to World Health Organization estimates,2 35.6 million people age 60 years and older were living with dementia worldwide in 2010. This number is expected to nearly double every 20 years, rising to an estimated 64.7 million in 2030 and 115.4 million in 2050. In the United States, the most recent estimate is that 4.7 million persons 65 years and older are currently living with AD, including 3% of persons ages 65 to 74 years, 17.6% of those ages 75 to 84 years, and 32.3% of persons ages 85 years and older.3 The total number of persons with AD dementia in the United States is expected to nearly triple by 2030, to 13.8 million, with 7.0 million individuals age 85 years or older. Individuals with AD can expect to live 8 to 20 years after onset of symptoms and 4 to 8 years, on average, after diagnosis.4 Over time, a growing number of cognitive, behavioral, and social functions are affected, leading to increased dependence and disability. In addition to early and prominent deficits in learning and recall of new information (secondary memory), people with AD show numerous changes in language and communication skills. Individuals with mild AD often complain about for-

getting names or word-finding problems and are likely to make errors on tasks such as object or picture description or confrontation naming.5 Semantic verbal fluency is also affected, to the extent that brief tasks such as animal naming can be useful in screening for mild AD.6 Important aspects of language are preserved in mild AD, including auditory comprehension, reading, writing, and conceptual knowledge.5,7 As dementia advances to moderate severity, auditory and reading comprehension may still be near normal levels for some individuals, but most other aspects of language are impaired, and by late stage AD, all language skills are severely compromised and often no language is produced.5 Medications currently approved for the treatment of AD symptoms (cholinesterase inhibitors and Namenda) (Forest Pharmaceuticals, Inc., New York, NY) may have modest benefits in slowing losses in cognitive performance,8,9 but the benefits are often too small to have a clinically significant impact on overall well-being or everyday functioning,10 and there can be significant side effects.11,12 There are currently no Food and Drug Administration–approved medications for treatment of dementias other than AD that are common in older persons, including vascular dementia, dementia with Lewy bodies, or frontotemporal dementia. Further complicating this picture is the fact that 30 to 60% of cases of ADRD go undiagnosed and untreated in primary care.13,14 As a result, the burden of care falls on nonmedical systems and supports, chiefly spouses and other family members who provided an estimated 17.5 billion hours of unpaid help to persons with ADRD in 2012.4 As the demand for dementia-related services has grown, there has been a resurgence of interest in nonpharmacological interventions aimed at strengthening or maintaining cognition, or improving mood, everyday function, physical fitness, or well-being of persons living with dementia. Cognitive skills training has been shown to improve memory or other aspects of cognitive performance for persons with mild cognitive impairment (a common precursor to ADRD) or memory problems,15,16 and techniques such as spaced retrieval training have proved useful for improving memory for

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LANGUAGE-ENRICHED EXERCISE PLUS SOCIALIZATION/RUE ET AL

SEMINARS IN SPEECH AND LANGUAGE/VOLUME 34, NUMBER 3

specific, functionally relevant skills in persons with dementia,17 including face–name associations.18 Randomized controlled trials of an inhome program in which caregivers were trained to provide cognitive stimulation for their spouses with dementia produced gains in verbal fluency, memory, and global cognitive function immediately after training and a reduced rate of cognitive decline 9 months later.19,20 The latter interventions provided 60 minutes of cognitive stimulation activities 6 days per week; in addition to memory and problem-solving exercises, this program also included conversational activities designed to elicit facts, opinions, and reasoning from the persons with dementia. In addition to research on direct cognitive interventions, there is a growing literature on exercise interventions for persons with dementia. One of the best-known exercise interventions is the Reducing Disability in Alzheimer’s Disease (RDAD) protocol developed by Linda Teri and colleagues.21,22 This program combines physical exercise and behavioral management training through in-home sessions conducted by home health workers. Compared with persons receiving usual medical care, participants in the RDAD program showed higher weekly exercise rates, less disruption of usual activities due to physical health problems, and fewer depressive symptoms at the end of training.21 At a 2-year follow-up, persons with dementia in the RDAD group continued to show better physical functioning than those with usual medical care, and there was a trend for reduced institutionalization for behavioral disturbances among RDAD participants compared with the usual care group. Other randomized controlled trials have shown that community-residing persons with early stage memory impairment can adhere to simple exercise regimes like walking with modest amounts of education and support, and that increased exercise is associated with measurable gains in physical activity levels and small cognitive benefits.23 The best approach to intervention for individuals with ADRD may be multimodal programs, which aim to increase activity and engagement in more than one way (e.g., combining cognitive stimulation and physical exercise with social activities). There is evidence that

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individuals with high levels of engagement in multiple dimensions of leisure activity (cognitive, physical, and social) have the lowest risk of developing ADRD,24 and cognitively healthy older adults who enroll in programs that make demands on cognitive, physical, and social skills have shown numerous benefits.25 For persons with dementia, a majority of multimodal intervention programs have employed a daycare model, in which the older person participates in small-group activities tailored for individuals with memory impairment.20,26,27 A few multimodal programs, however, have been developed for individualized delivery, and of these, one of the most thoroughly studied is the Elder Rehab program developed by Arkin and colleagues.1,28–31

ELDER REHAB PROGRAM The Elder Rehab program was a longitudinal intervention program for older adults diagnosed with AD that combined three main intervention components: physical exercise, language and memory stimulation, and social outings plus volunteer work.1 This program was an outgrowth of an earlier intervention program (Volunteers in Partnership).32 A unique feature of both programs was that all activities were delivered by undergraduate student volunteers who were trained by project staff and exercise physiologists and paired with an older person with dementia. Physical exercise in the Elder Rehab program included aerobic activity, strength training, and flexibility and balance exercises performed at a university rehabilitation gym. Treadmill walking or stationary bicycle pedaling were the usual aerobic activities. Participants used machines to exercise large-muscle groups for strength training and performed stretching and balancing activities to improve flexibility. Language stimulation exercises were designed to engage the participant in sustained attention, deep processing of language and semantic content, and production of verbal responses on demand. Specific structured activities included picture description, object description, category fluency, and several new tasks developed specifically for the program


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(e.g., controversial advice and opinion questions, and pros and cons of controversial topics). A memory-training activity involved quiz questions about participants’ lives and families drawn from personal tape-recorded narratives. In addition to providing concentrated practice in the use of communication skills, the language stimulation exercises incorporated principles shown to enhance memory and communication performance of persons with AD,7,18 such as engaging preserved conceptual knowledge, using concrete stimuli to cue performance, adding tasks with high emotional content, and cueing memory retrieval through a series of questions rather than free recall. Physical exercise and language stimulation were combined in weekly 1.5- to 2.5-hour sessions. Participants performed simple language and memory exercises when they were on the treadmill or stationary bicycle, and more difficult exercises during rest breaks between physical exercises. Students were required to complete 10 exercise plus language stimulation sessions with their study participant each semester. Caregivers of study participants were encouraged to do an additional weekly session of physical exercise with the study participant, but this did not always occur. In a second weekly session, the participant and student volunteer engaged in social or volunteer outings. The volunteer accompanied the participant to a cultural or recreational activity (e.g., attending a concert, hiking, or walking in a mall) or to volunteer work at a community agency (e.g., food bank, library, or humane society). Volunteer outings generally alternated with social outings. The Elder Rehab program was studied in a sample of 24 older adults (54 to 88 years, mean ¼ 78.8) diagnosed with AD. Mini-Mental State (MMSE) scores ranged from 15 to 29 (mean ¼ 23.2) at baseline, suggesting dementia of mild severity in most cases and some individuals with moderately severe disease.33 Baseline measures of cognition and mood included the neuropsychological test battery from the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) study,34 the Arizona Battery for Communication Disorders of Dementia (ABCD),35 selected subtests from the Wechsler Adult Intelligence Scale-Revised (WAIS-R),36

a detailed discourse battery,30 and the Geriatric Depression Scale.37 Physical fitness indicators included distance walked in 6 minutes, duration per session of treadmill or stationary bicycle exercise, and mean amount of weight pressed on leg and chest press machines. Cognitive performance and mood indicators were evaluated annually, whereas physical exercise indicators were assessed more frequently. Outcomes have been reported in detail elsewhere.28–31 Participants showed significant increases over time on all physical fitness indicators, and two-thirds of participants achieved their best aerobic exercise durations after only one or two semesters in the program.31 A significant decrease in depression symptoms was observed for participants who remained in the program for four or more semesters (i.e., 2 or more years).31 To assess effects on cognitive performance, the authors compared change scores on selected cognitive measures to annual change data from the CERAD registry,38 a large cohort of persons with AD who were not enrolled in any systematic intervention programs. There were no differences between Elder Rehab program participants and the CERAD comparison sample on cognitive measures from the CERAD test battery after participation in Elder Rehab for two semesters (i.e., 1 year), as the 1-year completers (n ¼ 24) declined from baseline on all but two cognitive measures. By contrast, participants who stayed in the program for four to eight semesters (2 to 4 years) showed stable performance on most cognitive measures, suggesting greater benefit with longer participation. All groups declined significantly each year on the MMSE, except the 4-year completers (n ¼ 8), who did not decline. After the first year, however, MMSE scores declined less in Elder Rehab participants than the CERAD comparison group. The Elder Rehab program is best categorized as evidence-informed practice. Although the program lacked a randomized control group for comparison, intervention methods were based on a large body of literature suggesting potential benefits from physical, cognitive, and social stimulation, and there were several methodological strengths, including careful screening procedures, use of sensitive and appropriate

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outcome measures, a structured intervention protocol with rigorous fidelity tracking, and relatively long-term longitudinal reassessments. The main messages of the study for clinical researchers and care providers are that: 1. Individuals with dementia can increase their levels of aerobic exercise and muscle strength within a few weeks, given appropriate instruction and support; 2. Benefits in mood and cognition may take longer to develop, and with cognition, the benefit is likely to be maintenance of skill rather than improvement; and 3. A multimodal intervention can be successfully implemented by trained volunteers. TRANSLATING THE ELDER REHAB PROGRAM TO RURAL AND MULTIETHNIC COMMUNITIES Why We Chose to Study the Elder Rehab Program in Wisconsin As is the case nationwide, Wisconsin is facing escalating long-term care costs as the number of older persons with dementia grows. As a result, the state DHS has been exploring approaches to make community-based services more available and accessible to persons with dementia and their caregivers. The DHS has also recognized the need to develop new services to support the emotional, cognitive, and physical well-being of persons with dementia. To that end, the DHS obtained funding from the U.S. Administration for Community Living’s Alzheimer’s Disease Supportive Services Program to test the effectiveness of the Elder Rehab program for rural and minority communities in Wisconsin. To our knowledge, the Wisconsin LEEPS translation protocol is the first to implement the Elder Rehab program in a community setting. We considered several factors when choosing the Elder Rehab program. The first factor was the potential to deliver services to rural residents. Wisconsin is a largely rural state, and any program that aims to be statewide must address the challenges faced by local agencies in rural areas. Health and long-term care workforce shortages, although present statewide, are intensified in Wisconsin’s rural areas, and can

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severely limit a family’s choices when informal caregivers begin to struggle in their efforts to meet the needs of a person with advancing ADRD. Recent research suggests a very high level of depression in both persons with dementia and spousal caregivers in rural populations.39 Group programs such as early stage daycare are often not appropriate for rural areas, because of distances required to travel and difficulty recruiting enough individuals at similar stages of illness to form a viable group. Minority elders are another high-risk population in terms of dementia-related disability. Wisconsin’s largest minority population is African-American, making up 6.5% of the state’s total population,40 and African-American elders are estimated to be more than twice as likely as older whites to have cognitive impairment or ADRD.4,41 For both rural and minority populations, an individualized program like Elder Rehab, if it slowed dementia progression, could help persons with ADRD stay in their homes and be as independent as possible. The fact that the Elder Rehab program was multimodal, combining exercise with cognitive stimulation and meaningful social engagement, was also a major factor in our choice. The combination of physical and cognitive intervention would allow us to enroll a broad range of individuals, and research suggested that it would benefit participants more than a singlefocus program. We also appreciated the emphasis on sustaining language and communication, as these often are not core elements of dementia intervention, despite evidence that declines in communication pose significant challenges for the person with dementia and caregivers.42,43 Another attractive feature of Elder Rehab was its use of volunteers to deliver the intervention. Use of volunteers would not only compensate for the lack of certified professionals in rural areas, but also keep costs low, thus increasing sustainability and generalization beyond the grant funding period. The consistent pairing of a volunteer with a person with dementia would expand the social network of the person with dementia and provide the volunteer with an opportunity to make a positive difference for a person in need and for the community.


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Providing relief for the primary caregiver was another priority. The 3 to 4 hours each week that volunteers would spend with the person with dementia in Elder Rehab would be a valuable time-out for the caregiver. In a recent study,44 periods of respite care had a major positive influence on quality of life of informal caregivers: 93% said they felt invigorated after a period of respite from providing care. In addition, caregivers in Elder Rehab were encouraged to exercise with the person with dementia at least once a week, which research suggests would lead to improved health, ability to handle stress, and lessen depression in the caregiver.45,46 Caregivers might also benefit from new ideas for social outings and volunteer work tailored for the person with dementia that the program is likely to identify. A final consideration was that the program would be interesting and enjoyable for participants. The fact that all of Elder Rehab’s participants remained in the program for at least a full year, and a substantial proportion for 2 or more years, suggested that it was perceived as worthwhile by participants and caregivers alike. Given that there are no quick fixes for the symptoms of dementia, selecting a program with potential staying power was a priority.

Planned Adaptations From the outset, we knew we needed to modify Elder Care program procedures to fit rural and minority communities in Wisconsin. We planned the following adaptations:

Exercise plus language stimulation sessions could be administered in participants’ homes if they so preferred, or in other familiar locations (e.g., walking in malls) outside of gymnasiums or health clubs. This was necessary because many rural communities lacked a gym or health club, and there was little standardization in exercise equipment across health clubs where they existed. The intervention was implemented on an ongoing basis, rather than on a semester-bysemester schedule. Volunteers were not restricted to students. Instead, volunteering for LEEPS was open

to any interested adult who met study criteria (see below) and could commit to the time required. Study enrollment was open to older adults diagnosed with ADRD and to those without a formal diagnosis whose history and symptoms were consistent with ADRD based on a structured interview with a close informant (see below). We did not require a formal diagnosis because many cases of dementia go undiagnosed in our area, so many people who could benefit would be excluded. All participants not previously diagnosed were encouraged to obtain a diagnostic evaluation at a memory clinic after enrolling. Although the Elder Rehab program enrolled only individuals with AD, LEEPS enrollment was expanded shortly after study onset to include individuals with other types of progressive dementia, including vascular dementia and dementia with Lewy bodies. This was done to increase the pool of potential participants in sparsely populated areas, and because the intervention procedures were potentially beneficial to individuals with non-AD types of dementia. Persons with frontotemporal dementia were excluded, because the intervention was not designed for the challenging interpersonal behaviors and language changes that often occur in dementia of this type. Other procedural modifications are noted in relevant sections below. Leeps Study Area The project was implemented in an eightcounty southwestern section of Wisconsin, to capture as many participants as is possible in a rural area. Sixty-two to 100% of residents of these counties live in rural areas,47 and between 16 and 19% are age 65 years or older.40 Adjacent to these eight rural counties is Rock County, which differs from the rest of the region in having a significant low-income and AfricanAmerican population. Rock County has the state’s third-highest concentration of AfricanAmericans among older people. In total, therefore, a nine-county region was the recruitment area for the LEEPS.

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Participant Recruitment and Screening Descriptions of the project were distributed to area hospitals, medical clinics, memory diagnostic clinics, health and human services programs, senior housing sites, and organizations serving older adults. Articles or advertisements about the project appeared in aging-related newsletters and local newspapers, and study personnel presented on LEEPS to a wide range of community organizations and on local radio stations. Potential participants and their closest companion or caregiver were interviewed to assess their understanding of LEEPS, appropriateness for the study, and availability and willingness to participate. Participants were given two standardized subtests (speech discrimination and following commands) from the ABCD battery to verify adequate hearing for conversational speech and ability to follow simple commands.35 In addition, each participant’s primary care provider was contacted for medical clearance to participate in physical exercise and for any recommended restrictions on type or amount of exercise. For potential participants who had not already been diagnosed with ADRD, the caregiver was interviewed about the participant’s dementia symptoms using the Dementia Questionnaire,48 a scale with established validity and reliability for estimating presence and type of dementia in epidemiological research.48,49 For all potential participants, the caregiver was asked about the severity of the participant’s problems with everyday function related to dementia using the Global Deterioration Scale and the Functional Assessment Staging of Alzheimer’s Disease.50,51 Results of the Dementia Questionnaire were reviewed by a licensed psychologist with a background in geriatric neuropsychology to determine if symptoms and history were consistent with probable AD, vascular dementia, dementia with Lewy bodies, or other relevant dementia. To enroll, participants were required to have a physician’s diagnosis of ADRD or Dementia Questionnaire results consistent with probable ADRD and Global Deterioration Scale ratings of 3 (mild cognitive impairment to very mild dementia) or 4 (mild dementia). Enrollment was restricted to relatively mild

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levels of cognitive impairment for two reasons: it allowed the participant to independently consent to study enrollment and maximized the length of time that participants might be able to participate in the interventions. All study procedures were approved by the Institutional Review Board of the University of Wisconsin–Madison.

Volunteer Recruitment and Training Volunteers were recruited through contacts with area colleges and volunteer programs, presentations to community groups and organizations serving older adults, articles and ads in area newspapers, radio broadcasts, community health and job fairs, and posting a description of the opportunity on area volunteer Web sites. Participation as a LEEPS volunteer was open to anyone over the age of 18 years who passed a background check, provided appropriate personal references, expressed willingness and ability to transport LEEPS participants on social outings, and had sufficient time to commit to an ongoing volunteer position. Volunteers were asked to commit a minimum of 3 months to the program and twice-weekly sessions with a LEEPS participant. Most volunteers participated for at least 6 months. A few volunteers were available only once per week, and in those cases a second volunteer was recruited to work with the participant or the LEEPS volunteer coordinator filled in as needed. LEEPS volunteers were trained in intervention procedures by volunteer coordinators hired for the project. At the study outset, volunteer coordinators were trained in cognitive assessment procedures by a geriatric neuropsychologist; in language and memory stimulation intervention procedures by a clinical speech-language pathologist; and in fitness assessment and exercise techniques by a consulting physical therapist. To insure consistency in training of volunteers, videotapes of the initial training sessions were used for all subsequent training, along with a detailed volunteer training manual developed for the project. Language and memory stimulation procedures closely paralleled those in a procedural manual developed by Arkin.52 Physical exercise procedures also followed the Arkin manual wherever


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LEEPS Participants and Volunteers In the first 15 months of LEEPS data collection, 42 older adults with ADRD completed baseline assessments. Table 1 shows the characteristics of these participants. Nearly all were age 70 years or older (94.8%) and non-Hispanic white (95.2%), 60% were female, and most (76.3%) had obtained at least a high school diploma. On a Global Deterioration Scale, participants were rated as having either mild cognitive impairment/very mild dementia or mild dementia. Although nearly one-half the sample (45.9%) reported that they exercised at least once a week at the study outset, 47.6% were using a cane or walker for ambulation, and there was a wide range of self-perceptions of current health (Table 1). The LEEPS sample to date is comparable to the Elder Rehab sample in age range (95% 70 years for LEEPS; 92% 70 for Elder Rehab), gender composition (60% female for LEEPS; 67% for Elder Rehab), racial/ ethnic composition (95% white for LEEPS; 100% for Elder Rehab), and MMSE range (9 to 30 for LEEPS; 15 to 29 for Elder Rehab). LEEPS had slightly fewer participants with some college or college degrees than the Elder Rehab program (21.5 versus 37.5%, respectively). At the time of this publication, 19 volunteers (all women) had been recruited and trained to work with LEEPS participants. Nine (47%) were undergraduate students attending area colleges, 8 (42%) were retired older adults, and 2 (11%) were still employed (one as a certified nursing assistant, the other as a fitness assistant). Eight (42%) were ages 18

Table 1 Characteristics of LEEPS Participants (n ¼ 42) n

%

Age (y) 40–59

1

2.4

60–69

2

4.8

70–79 80 and older

14 25

35.3 59.5

25 17

59.5 40.5

40 2

95.2 4.8

8 y or less Some high school

6 4

14.3 9.5

High school graduate

23

54.8

Some college or technical school B.A. degree

7 1

16.7 2.4

Graduate degree

1

2.4

17

40.5

25

59.5

Gender Female Male Race/ethnicity Non-Hispanic white African-American Education level

Global Deterioration Scale score 3. Mild cognitive impairment 4. Mild dementia Self-rated health (n ¼ 41) 1. Excellent

6

14.6

2. Very good

9

22.0

3. Good 4. Fair

30 6

48.8 14.6

Exercising once/wk at baseline (n ¼ 37) Yes No Using cane or walker at baseline Yes No

17

45.9

20

54.1

20

47.6

22

52.4

Abbreviation: LEEPS, Language-Enriched Exercise plus Socialization.

to 25 years, 7 (37%) were ages 26 to 59 years, and 4 (21%) were age 60 years or older. Two worked with more than one LEEPS participant. In 18 cases, there were difficulties finding a volunteer who lived within reasonable driving distances of participants, and in these cases, volunteer coordinators provided the interventions while waiting for a suitable volunteer. In a few cases, there were trained volunteers in a given area, but no LEEPS participants who lived close by.


possible, with adaptations as needed to allow for in-home exercise and to accommodate participants with balance problems or other physical limitations. Volunteer coordinators maintained active supervision of volunteers as they began their work with LEEPS participants. Monthly activity summaries were monitored by volunteer coordinators and an in-person observational fidelity check was conducted for each participant–volunteer pair after 1 to 2 months of intervention.

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Assessment Tools PARTICIPANT WITH DEMENTIA

Volunteer coordinators administered all questionnaires and tests according to standard procedures at baseline and at annual follow-ups. An enrollment form inquired about participants’ demographics, living situation, physical health, use of services, current activities, and preferences for exercise and volunteering. Depression symptoms were assessed with the Geriatric Depression Scale,37 and a global rating of sense of value and fulfillment in life was measured with the Quality of Life in Alzheimer’s Disease scale (Qol-AD).53 Cognition was assessed with the following standardized tasks: the MMSE33; the verbal fluency, picture naming, and word list learning subtests from the CERAD neuropsychological battery34; the similarities subtest from the WAIS-R36; and the concept description subtest from the ABCD battery.35 In addition, participants’ responses to two open-ended questions were audiotaped to provide discourse samples. The LEEPS cognitive battery is a shortened version of that used in the Elder Rehab program (e.g., only one subtest from the ADCD instead of the complete battery and only three subtests from the CERAD battery instead of seven). Volunteer coordinators administered three brief tasks from the Senior Fitness Test to assess physical fitness at baseline and annual followups: the chair-stand test (lower body strength), arm curl test (upper body strength), and a 6minute walk test or 2-minute step in place test (aerobic endurance).54 These tasks were developed specifically for older adults and require little equipment and a minimum of space to administer. COMPANION/CAREGIVER

In addition to being interviewed at screening about the participant’s dementia symptoms, the companion or caregiver (generally a spouse) was also interviewed at baseline and at annual follow-ups. Volunteer coordinators requested basic demographic information, as well as information about physical health, current activities, and preferences for assisting with exercise routines for their family member with demen-

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tia. Companions also completed the Geriatric Depression Scale and a questionnaire about stress or burden related to caregiving (Burden Interview).37,55

Intervention Methods Following baseline assessment, each participant was introduced to a volunteer from his or her area in an initial session organized by a volunteer coordinator. The intervention schedule called for each participant and his or her volunteer to meet on a twice-weekly basis, once for exercise plus language stimulation and once for a social outing or volunteer work. Illness, vacation, or scheduling difficulties reduced the number of visits on some occasions. Volunteers logged activities completed at each session, including minutes spent on different physical exercise activities, language stimulation tasks performed, and social outings or volunteer work. PHYSICAL EXERCISE PROCEDURES

Exercise training was embedded in weekly exercise plus language stimulation sessions lasting an average of 1.5 hours. Each session began with a linguistic exercise (see below) followed by checking of resting pulse. For exercise to proceed, the participant’s resting pulse had to be 100 per minute or less, or in the range recommended by his or her physician. Warm-up activities (e.g., arm rolls) were followed by flexibility exercises (e.g., seated hamstring, neck, arm, wrist, and calf stretches, followed by standing calf raises when appropriate), followed by strength training. Strength training targeted major muscle groups with the goal of 5 minutes per group. When exercises were performed at home, resistance bands or free weights were used, and in gyms or health clubs, weight training machines were used. A 5- to 10-minute rest period with a second resting language exercise was followed by endurance training. An endurance activity protocol was developed for each individual through consultation with a physical therapist, taking into account any restrictions specified by the person’s physician. For individuals with balance problems or difficulty with standing or ambulation, endurance exercises were performed in a


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LANGUAGE AND MEMORY STIMULATION

LEEPS used the language and memory tasks developed for the Elder Care program, which are described in detail elsewhere.29 Tasks suitable for use during exercise rest periods included proverb interpretation, picture description from Norman Rockwell prints, advice and opinion scenarios (e.g., What would you do if you found out your best friend was cheating on their spouse?), object description, story recall, naming pictured objects, and singing along with familiar songs. Tasks for use during seated exercise included discussing pros and cons of activities such as watching TV, proverb completion exercises, listing similarities and differences between things, word association, and sentence completion. SOCIAL OUTINGS AND VOLUNTEER WORK

Volunteers transported and accompanied participants on social outings or volunteer work once per week. Selection of outings and volunteer opportunities varied with participant preferences and local availability. The aim was for approximately equal frequency of social and volunteer work outings, but for most LEEPS participants

there were more social outings than volunteer work sessions. Examples of social outings included fishing, visiting a llama farm, going to the library, and having a meal in a restaurant. Examples of volunteer work included helping at a school fundraiser, reading to school children, and serving as a greeter at church.

PRELIMINARY RESULTS At the end of the first 15 months of the study, 24 participants were still enrolled and 18 had withdrawn for a variety of reasons. There were no significant differences in baseline demographics, Global Deterioration Scale scores, or physical fitness measures (see below) between the continuing cases and those who withdrew. Compared with those still enrolled in LEEPS, there were trends for those who withdrew to have a lower mean MMSE score at baseline (22.54 versus 19.47), and a higher percentage of those who withdrew rated their health as only “fair” (22.8 versus 8.7%). LEEPS is only at the midpoint of the 3-year period of data collection, and follow-up data were available for only eight individuals at the time of this report. These eight individuals, described in Table 2, were similar to the full LEEPS baseline sample. Four were female, 7 of 8 (87.5%) were age 80 years or older, and 7 of 8 (87.5%) had at least a high-school degree. Seven were non-Hispanic white (87.5%), and one was African-American. Seven had a Global Deterioration Scale score consistent with mild dementia, and one scored in the mild cognitive impairment or very mild dementia range. One-half reported exercising at least once a week at the start of the study, and one-half were using a cane or walker. Table 3 summarizes baseline and 1-year follow-up scores for these eight participants on measures of global mental status, depression, quality of life, and physical fitness. The small number of cases limits statistical power of baseline to 1-year comparisons, and observed trends must be considered very preliminary. There were no statistically significant differences in baseline versus 1-year mean scores on the measures shown in Table 2. There was a marginally significant (p ¼ 0.10) improvement on the MMSE and arm curls and a marginally significant decline (p ¼ 0.06) on quality of life ratings.


seated position (e.g., using arm- or foot-pedaling equipment). Ambulatory participants with no recent history of falls walked in their neighborhood, at a mall, or on a treadmill at home or in a gym or cycled on a stationary bicycle at home or at a gym. For participants with low initial fitness, plans generally began with only 5 minutes of continuous activity, increasing by 1 minute per week thereafter. Simple language activities requiring little effort (e.g., discussing pros and cons of activities such as watching TV) were incorporated into endurance exercises when performed in a seated position, and casual conversation was offered during walking for exercise. Aerobic exercise was followed by a cool-down phase and an additional resting linguistic exercise was given if the participant was not too fatigued. Companions/caregivers were encouraged to do a second weekly exercise-only session with the participant, and those who were interested were given the same training provided to volunteers to maximize safety; however, most caregivers did not do this additional exercise.

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Table 2

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LEEPS Participants with 1-Year Follow-up Data

Subject Age (y) Gender Race

Education

Lives With

Exercised At Social Activities

1

80

F

White

Some college Spouse

Home

Meals out, library, lecture

2

80

M

White

Some high

Spouse

Home

Meals out

White

school High school

Spouse

3

70–79

M

Home and

Meals out, shopping,

senior center

sightseeing, events

Home

Meals out, shopping, sightseeing, events,

4

80

F

White

5

80

F

AfricanSome college Other family Home American

Meals out, shopping, sightseeing

6

80

M

White

High school

Alone

senior center

7

80

M

White

High school High school

Spouse

Home and

Meals out, sightseeing,

Spouse

senior center Home

fishing, farm tour Meals out, sightseeing, card games

8

80

F

White

High school

Other family Home

with volunteer Meals out, shopping, sightseeing, art gallery, winery tour

Abbreviation: LEEPS, Language-Enriched Exercise plus Socialization.

Table 3

Baseline and 1-Year Follow-up Scores for Eight LEEPS Participants

Mini-Mental State Geriatric Depression Scale

Baseline, Mean (SD)

Follow-up, Mean (SD)

% Same or Improved

21.75 (4.80) 6.63 (3.16)

22.13 (5.72) 6.63 (5.18)

62.5 62.5

Quality of Life–AD

41.25 (4.86)

39.38 (6.50)

37.5

Chair stand (no. in 2 min), n ¼ 7 Arm curls (no. in 2 min)

7.57 (2.76) 14.63 (5.01)

7.14 (3.13) 17.63 (5.15)

71.4 75.0

Step in place (no. full steps in 2 min), n ¼ 7

45.71 (26.76)

41.14 (27.30)

28.6

Abbreviations: AD, Alzheimer disease; LEEPS, Language-Enriched Exercise plus Socialization; SD, standard deviation.

Scores on the 2-minute step test were highly variable, and in two cases, the values are prorated based on less than 2 full minutes. One participant was unable to complete either the chair-stand or 2-minute step tests due to instability and fear of falling.

DISCUSSION AND IMPLICATIONS FOR APPLIED RESEARCH As a group, the first LEEPS participants with 1-year evaluations are holding their own in global cognitive function, mood, and physical

fitness indicators. This in itself is a noteworthy outcome, given the progressive nature of AD and related dementias included in the LEEPS sample. The slight trend toward improvement in MMSE scores is encouraging. In the Elder Rehab program, MMSE scores declined an average of 2.9 points ( 3.6), from a baseline average of 23.4 (4.0) to a mean of 20.5 (5.3) at 1 year. The larger CERAD sample (n ¼ 245) used for comparison in the Elder Rehab program study also declined in MMSE performance from baseline to 1 year, by a similar


180

amount as in the Elder Rehab sample, and in both studies, the decline in MMSE scores was statistically significant.29 The eight LEEPS participants with follow-up data had slightly lower mean MMSE scores at baseline than the participants in Elder Rehab, which may have contributed to the absence of decline over time in LEEPS. Nonetheless, a lack of decline, on average, is not the usual longitudinal outcome for persons with ADRD. The fact that depression symptoms have not increased on average for the cases with follow-up data is also a positive outcome, given the challenges presented by the disease. In the Elder Rehab program, mean depression scores also stayed stable at the 1-year follow-up, and a decline in depressive symptoms was noted in persons who stayed in the program for a longer time (2 or more years). Although global cognitive status and depressive symptoms stayed stable on average for LEEPS participants at 1 year, there was a trend toward lower quality of life ratings at the follow-up. Five of the eight follow-up participants (62.5%) had scores that were either identical to their baseline values or a single point lower, but two individuals reported QolAD ratings that were 5 or 6 points below baseline, which accounted for the slight downward trend for the group as a whole. It will be important to reexamine this trend as additional follow-up data are acquired. Because LEEPS participants exercised in a variety of ways, some with equipment, some without, we used performance on the three standardized physical fitness tests as our primary physical outcomes. A trend toward improvement was observed on arm curls for the eight LEEPS participants with follow-up data, although there was no change on the sitting-tostanding test or stepping in place. As several LEEPS participants were doing their exercises in a seated position, the latter two tests may not have provided optimal estimates of changes in muscle strength or aerobic fitness. When follow-up data are more complete, we will examine additional indicators of exercise changes, including duration of aerobic exercise (individualized per mode of exercise) and repetitions or weights used on repetitive strength tasks such as arm curls.

LEEPS is not a replication of the Elder Care program, but rather a translation. We adapted procedures to local circumstances and needs, while retaining as much of the original assessment and intervention methods as possible. The LEEPS sample is larger than that of the Elder Rehab program, largely rural as opposed to urban, and includes a wider range of progressive dementias than Elder Rehab, which was limited to persons with AD. The great majority of LEEPS participants have elected to exercise at home, whereas exercise sessions in the Elder Rehab program were conducted at a university rehabilitation gym with standard equipment. Whereas all volunteers in the Elder Rehab program were undergraduate students who received course credit for participating, LEEPS has engaged a more diverse set of volunteers, including retired persons and working adults in addition to students. Each of these procedural differences can potentially affect outcomes. Nonetheless, LEEPS preserves the multifaceted, volunteer-assisted intervention model of the Elder Rehab program, uses a majority of the same assessment tools, and is reproducing the intervention procedures as closely as possible, especially with respect to language stimulation and social outings. In the early months of LEEPS covered by this report, the main challenges to implementation have involved difficulties in recruiting enough volunteers and problems with location matching of volunteers and LEEPS participants. Sparking the interest of community residents in new volunteer opportunities can take time in rural and minority communities, which often rely on familiarity and personal contacts as a basis for becoming involved. As LEEPS continues to operate in these communities, more potential volunteers are stepping forward to express an interest. Having a larger number of volunteers is likely to increase the odds that new participants can be promptly paired with trained volunteer partners. Other additional ongoing challenges are to enroll more participants from minority populations and identify more options for volunteer work that are meaningful and appropriate for LEEPS participants.

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SUMMARY Conclusions about the clinical efficacy of LEEPS are necessarily limited by the lack of a control group or comparison interventions. Thus, if LEEPS participants remain stable in important areas of function such as global mental status and depressive symptoms as suggested by these very preliminary results, we will not know for certain if this is due to the particular features of the LEEPS intervention. For individuals with ADRD, however, maintaining function for periods of as long as a year is a positive outcome, and programs such as LEEPS that are community based and staffed primarily by volunteers offer promise as models for counties and states considering new ways to support older persons with cognitive impairments. ACKNOWLEDGMENTS

This project was supported in part by grant number 90AE0346 to the Wisconsin DHS from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy. We thank the following individuals and organizations for their advice on study procedures or assistance with recruitment: Sharon Arkin, Ph.D.; Lyn Turkstra, Ph.D.; Todd Nierman, P.T., D.P.T., C.S.C.S.; Becky Dahl, B.S., C.S.W.; Mary Mezra, B.S.; Mary Frederick, B.S., M.S.; the Aging and Disability Resource Centers of Eagle Country and Southwest Wisconsin; the Alzheimer’s Support Center; the Wisconsin Alzheimer’s Institute at the University of Wisconsin-Madison; the Greater Wisconsin Agency on Aging Resources; and the Alzheimer’s and Dementia Alliance of Wisconsin. We especially thank LEEPS participants and their caregivers for their time and efforts.

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