Skills2Care (f/k/a Environmental Skill-Building Program


PRINCIPAL INVESTIGATOR:
Laura N. Gitlin, Ph.D., Director
Center for Applied Research on Aging and Health Jefferson College of Health Professions
130 S. 9th Street, Suite 513
Philadelphia, PA 19107
Office: (215) 503-2896
Fax: (215) 923-2475
Email: Laura.Gitlin@jefferson.edu

Intervention Title: A Randomized, Controlled Trial of a Home Environmental Intervention: Effect on Efficacy and Upset in Caregivers and on Daily Function of Persons With Dementia

OVERALL SNAPSHOT OF CAREGIVER INTERVENTION/PROGRAM: This is a home-based environmental intervention designed to help family caregivers of persons with dementia learn specific strategies through education, skill-building, and environmental strategies. These strategies are designed to help caregivers so that they can modify their living space so that they develop a more supportive environment such that the person with dementia will exhibit fewer disruptive behaviors and experience a slower rate of decline and dependence in instrumental and basic activities of daily living (IADLs and ADLs). This intervention is based upon a competence-environmental press framework and personal control theory. In general, the intervention involves 5, 90-minute home visits by an occupational therapist who evaluates the home environment, observes performance of the person with dementia and the caregiving and communication style of the caregiver. Based on this assessment of an in-depth interview with the caregiver regarding their specific daily issues, concerns and challenges, the interventionist provides basic education about dementia and the stressors of caregiving, and trains caregivers in specific strategies to help caregivers cope with daily care challenges. Strategies provided reflect simple modifications to the physical environment (e.g., removal of hazardous objects, use of a memory board or daily calendar) and social environment (e.g., communication techniques, cueing and approaches to simplifying everyday tasks) to more resource dependent recommendations (e.g., installing grab bars or handrails), as well as basic problem solving and stress management techniques.

Evidence supporting the impact of the program has been well-documented. The environmental program appears to have a modest effect on dementia patients’ IADL dependence and also among certain subgroups of caregivers, the program improves self-efficacy and reduces upset in specific areas of caregiving. There is also evidence showing that caregivers are receptive to and utilized environmental strategies offered by occupational therapists. Both six and 12-months after the start of the study, care-recipients in the intervention group were better able to perform everyday tasks and take care of themselves. They were also more likely to use problem-solving strategies to make tasks easier and also less frightened of falling than the adults in the non-intervention group (e.g., control group). Furthermore, compared to controls, caregivers in the intervention group reported less upset with memory-related behaviors, less need for assistance from others, and better affect. Intervention spouses reported less upset with disruptive behaviors; men reported spending less time in daily oversight; and women reported less need for help from others, better affect, and enhanced management ability, overall well-being, and mastery relative to control group counterparts.

BRIEF BACKGROUND RELATED TO THE DEVELOPMENT OF THE INTERVENTION:

Older adults with heart disease, arthritis or other chronic health conditions often have difficulties with everyday activities such as bathing or walking. Among other things, these difficulties can contribute to reduced quality of life and to fear of falling, which may cause anxiety, depression, isolation, and even falls. As a result of difficulties with daily activities, older adults may need help in their homes, or need to move to a family member's home or a nursing home or other facility.

This innovative caregiver intervention was designed to be a home environmental approach. The rationale for using the home environment as a therapeutic modality is based in a competence-environmental press framework and recent advances in control theory. A competence-environmental press framework suggests that as competency declines in persons with dementia, an unchanging physical and social environment presents substantial demands or press on an individual that may result in negative behavioral and functional outcomes. In other words, with the progression of dementia, the person becomes unable to navigate the home environment and may ignore or misinterpret cues and environmental information that would otherwise support adaptive behavior. Therefore, modifying and simplifying aspects of the environment to match reduced competency may minimize excess disability in persons with dementia.

In a model offered by Barris and colleagues (1985) and extended by Cororan and Gitlin (1991), the environment is conceptualized as consisting of four hierarchically arranged and interacting layers: objects (physical tools or items in the home), tasks that compose daily life routines (dress, bathing, toileting), social groups and their organizations (household composition and other social resources) and culture (values and beliefs that shape the provision of care in the home). It is thought that each layer may be modified to balance the demands of the environment with the individual’s level of competency or abilities. Thus, during the intervention, strategies are introduced that target three layers of the environment: objects, tasks, and social groups. For example, at the object layer, recommendations may include assistive devices for bathing or toileting, reducing clutter, or posting reminders. At the task layer, recommendations may include simplifying activities, learning effective communication techniques, or using tactile or verbal cueing. Strategies for social group modification may consist of expanding and/or supporting the network of paid and unpaid helpers. The culture layer was not designed to directly be manipulated or targeted for change in the intervention. Rather, culture informs the process of delivering this intervention and developing environmental strategies that fit the household context. Strategies introduced in a household must fit the cultural dimension or the specific value context in which a caregiver provides care.

Personal control theory provides the rationale for why an environmental approach may also benefit caregivers. According to this theory, maintaining control is a universal imperative achieved by using primary mechanisms such as changing the immediate environment (e.g., objects), secondary mechanisms such as changing cognition/thoughts or emotions or a combination of both. Therefore, the unsuccessful application of these mechanisms to achieve control may result in negative affective consequences such as emotional distress and lowered self-efficacy. In terms of caregiving, family members may be motivated to use an environmental strategy, a primary mechanism, as part of their repertoire of coping strategies to achieve personal control over overwhelming and unpredictable situations. As such, maintaining control may reduce distress and enhance self-efficacy beliefs among caregivers.

TARGETED CAREGIVER POPULATION (AGE, ETHNICITY, CONDITION/DISEASE):

The primary targeted caregiver population studied to date with this intervention has been for family caregivers of persons with Alzheimer’s disease. The majority of the literature evaluating this intervention has been on predominantly adult, Caucasian female family caregivers who provide care for a non-spouse.

INTERVENTION/PROGRAM RESOURCES:
Interventionists provide caregivers with a list of strategies specific to their care challenges. Caregivers are also provided education materials from the Alzheimer’s Association and/or Mace and Rabins, 36 Hour Day, when appropriate.

MANUAL OF PROCEDURES: Contact PI to determine availability.

INTERVENTION/PROGRAM SPECIFIC OUTCOME MEASURES: Various evidence-based outcome measures have been used to evaluate the efficacy of this intervention in randomized controlled trials (RCTs), two of which were specifically developed by Gitilin and colleagues (2002) (Home Environmental Assessment Protocol: HEAP and the Task Management Strategy Index and Perceived Change Index). Below is a brief description of these measures. For more detailed information, please contact the PI.

Intervention-Specific Measure
The Home Environmental Assessment Protocol (HEAP) is an investigator-developed tool to assist with examining dimensions of the physical in environment of homes of persons with dementia. It relies on both structured observation and self-report from family members to derive ratings, and raters are provided definitions and guidelines for each observation (see Gitilin, Schinfeld, et al., 2002 for a detailed list of hazard items and definitions as well as detailed description and scoring procedure). The measure appears to provide a systematic and consistent approach to observing home environments on four key dimensions (hazard, adaptation, clutter, and comfort) related to the well-being of persons with dementia. Research suggests adequate psychometric properties (inter-rater reliability and convergent validity). The findings from Gitilin, Schinfeld, et al. (2002) suggest that it is feasible to make reliable observations of physical dimensions of home environments of persons with dementia. Professional and non-professionals who receive training in the tool administration can use the HEAP. The dimensions of the HEAP appear to be related to illness characteristics of dementia patients such that households caring for persons with reduced competencies have more adaptations in place and fewer observed home hazards.

The Task Management Strategy Index (Gitlin et al., 2003) was also developed by the PI and colleagues to assess skill enhancement. This 19-item scale measures the extent to which positive caregiving strategies are used to manage ADL dependence and problem behaviors. Caregivers indicate how often they use strategies such as visual and tactile cuing, simplifying routines, or short instructions, using a 5-point Likert format (1 = never to 5 = always). An average strategy use score is calculated, with high scores indicating greater use of such strategies.

Based off of the Perceived Change Index by Machemer et al. (2000), Gitlin et al. (2003) also developed a 13-item scale to assess caregiver well-being. For each item, caregivers rated on a 5-point scale whether things have become worse (1) or improved a lot (5) over the past month. Using an exploratory factor analysis, three factors emerged which correspond to affect (Cronbach’s alpha = .85), somatic feelings (Cronbach’s alpha = .81), and management abilities (Cronbach’s alpha = .76) and together accounted for 53.7% of the variance.

Main Reference: Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M.,Schinfeld, S.& Hauck, W. (2003). Effects of the Home Environmental Skill-Building Program on the caregiver-care recipient dyad: Six-month Outcomes from the Philadelphia REACH Initiative. The Gerontologist, 43(4), 532-546.  

WORKBOOK/WORKSHEETS: Contact PI to determine availability.

OTHER INTERVENTION RESOURCES: Contact PI to determine availability.

TOTAL LENGTH OF INTERVENTION/PROGRAM: Active treatment occurs over 6-months and maintenance treatment occurs over the subsequent 6 months (12-months total).

NUMBER OF SESSIONS: Active treatment consists of five 90-minute sessions and one 30-minute telephone contact over 6-months. Maintenance treatment consists of 1 home visit and 3 brief telephone sessions to reinforce strategy use and obtain closure.

LENGTH OF EACH SESSION: Approximately 90-minutes per home session spaced approximately every other week over 3 to 6 months; 30-minutes per telephone contact.

DESCRIPTION OF SESSION CONTENT:
Overview of the Intervention Sessions:

Session 1: During the initial session, caregivers are oriented to the service within the caregiver’s home environment. An occupational therapist meets with the caregiver to develop a targeted plan that addresses the specific aspects of daily care (e.g., bathing, dressing, activity engagement, caregiver fatigue) that were problematic and for which the caregiver wants to learn new strategies. Education is provided about interactions between the disease process and the environment (physical and social), and problem-solving. Caregivers are asked to identify up to three problem areas to address in the course of the intervention. For each area addressed, the therapist and the caregiver set behavioral goals, examine environmental influences on behaviors, and design environmental strategies to resolve problems. Strategies that are acceptable to the caregiver re then practiced between occupational therapy sessions. At each subsequent session, strategies are modified, refined, and reinforced.

Session 2: The occupational therapist uses role-play, direct observation, paper and pencil exercises, practice, and interviewing to explore the ways in which the caregiver handles problem areas and conceptualizes or cognitively frames their situation. Continuation of education about dementia and the role of the physical and social environment is presented in relation to the specific care difficulties reported by caregivers. The occupational therapist engages caregivers in mutual problem-solving to identify alternate care strategies using an environmental perspective. Environmental simplification and task breakdown strategies are introduced, and caregivers are asked to practice their use prior to the next home visit. Within this session, one problem is addressed by identifying environmental influences, helping the caregiver set goals for self and loved one with dementia, developing and practicing environmental solutions, and lastly, planning a general approach and daily environmental strategies for the upcoming week.

Sessions 3-5: In each subsequent home visit, the occupational therapist reviews the previous week assignment/homework, reinforces education about dementia through written materials and discussion, addresses a targeted problem area, observes the caregiver using previously recommended strategies, provides refinements to those strategies, and or offers new recommendations. The occupational therapist helps the caregiver generalize the process to newly emerging problem areas. In the process of providing verbal instruction and training, the therapist uses cognitive restructuring and validation to instill greater perceived control and confidence in the caregivers own abilities to manage the problem and to develop more realistic appraisals of the caregiving situation, dementia-related behaviors, and expectations. According to Gitlin, Corcoran, Winter, Boyce, and Hauck (2001) helping caregivers reframe attributions and explain events is important to enable behavioral change and the use of environmental strategies. Occupational therapists serve as coaches and provide ongoing validation and reinforcement of the caregivers’ use of environmental strategies.

In the final session, the occupational therapist reviews previously introduced strategies and how they might be applied to future potential problems.

METHOD OF ADMINISTRATION/DELIVERY: The primary method of delivery is within the home environment along with telephone contact.

TRAINING:
Given the observation of performance between both the caregiver and person with dementia required for this intervention, it represents a skilled level of service delivered by occupational therapists. Licensed occupational therapists with home care or dementia care experience are preferred for training in the delivery of the intervention.

Approximately 25 to 30 hours of training specific to the intervention is needed and includes readings, didactic, and experiential learning in the elements of the intervention. Training is conducted by the study investigators. During training, interventionists learn: 1) how to effectively collaborate with the caregiver, 2) how to understand the cultural tenets of the caregiver-patient dyad that structure and inform caregiving in the home environment, 3) how to develop strategies that are tailored to individual problems and which resonate with cultural values of the dyad, 4) how to validate caregiver efforts and reinforce use of strategies, and 5) a range of strategies for specific problem areas. Therapists are also introduced to the intervention protocol, specific strategies, and treatment documentation.

During the randomized controlled trial, occupational therapists were monitored throughout the study using several techniques to ensure treatment fidelity---that is, that the intervention was being delivered in the way it was intended to be delivered. Monitoring included formal case reviews, on-site observation of randomly selected sessions, and follow-up interviews with caregivers to evaluate their satisfaction with the intervention process.

COST AND TIME CONSIDERATIONS:
Licensed occupational therapist to deliver intervention
30-hours of training (includes readings, didactic and experiential components)
Intervention training materials
Transportation to homes for delivery of intervention (gas, time for personnel to travel)
Development of action plans (written 2-3 page documents that outline specific strategies to address a targeted problem area)
Paper for recording weekly sessions/strategies used and recommended

VIDEO CLIP OF INTERVENTION/PROGRAM: Contact PI to determine availability.

KNOWN TRANSLATIONAL EFFORTS:
Fox Rehabilitation
St. Johns County Council on Aging

DOWNLOADABLE FACT SHEETS: Contact PI to determine availability.

PODCAST OF DR. GITLIN DISCUSSING THE ESP INTERVENTION


BRIEF DESCRIPTION OF EVIDENCE: Several studies have shown evidence supporting the impact of this intervention on family caregiver functioning of persons with dementia (e.g., Corcoran et al., 2001; Gitlin et al., 2001; Gitlin et al., 2003; Gitlin et al., 2005). Specifically, from the original randomized controlled trial (RCT) with 202 dementia caregivers, Gitlin et al. (2001) found that at 3-month follow-up, intervention environmental recommendations resulted in improvements for both caregivers and care-recipients. Caregivers who received the intervention, compared with caregivers in usual care, reported less decline in instrumental activities of daily living, a trend toward fewer declines in self-care, dependency, and fewer behavior problems at 3-months post-intervention. Additionally, spouses who received the intervention reported less upset with behavioral manifestations, women reported enhanced self-efficacy in managing troublesome behaviors, and women and African American caregivers reported enhanced self-efficacy in managing functional dependency compared with their counterparts in the control group. Other research has shown that the intervention helps sustain caregiver affect for those enrolled for more than 1 year. Lastly, Chee and colleagues (2007) found that modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention and suggest that efforts, including instruction in preventative care and allocating time to attend to their own health care needs, be directed towards improving their health.

As part of the Philadelphia REACH study, Gitlin and colleagues (2003) more recently expanded upon the initial 3-month ESP caregiver intervention involving more occupational therapy time in the home, as well as the actual implementation of special equipment and other low-cost environmental strategies that had been recommended but not actually provided in their initial intervention. Compared with controls (n = 101), caregivers in the intervention group (n = 89) reported less upset with memory-related behaviors, less need for assistance from others, and better affect. Intervention spouses reported less upset with disruptive behaviors; men reported spending less time in daily oversight; and women reported less need for help from others, better affect, and enhanced management ability, overall well-being, and mastery relative to control group counterparts. Benefits from the intervention are apparent at both 3 and 6 month-follow-up. Caregivers have also been shown to be receptive and willing to try strategies offered during the intervention (total of 1,068) and subsequently use them independently post-intervention (869 strategies). Moreover, caregivers tended to use a greater number of strategies that modified the task and social environments than the objects layer of the environment. Of the problem areas facing these family caregivers, the most frequently identified as problematic included caregiver-centered concerns, catastrophic reactions, wandering, and incontinence. More recently, Gitlin and colleagues (2005) examined the impact of the program at 12-months and found that caregiver affect improved and there was a trend for maintenance of skills and reduced behavioral occurrences, but not on other outcome measures.

REPRESENTATIVE PUBLICATIONS/REFERENCES:
Barris, R., Kielhofner, G., Levine, R. E., & Neville, A. (1985). Occupation as interaction with the environment. In G. Kielhofner (ed.), A model for human occupation. Baltimore: Williams & Wilkins.

Chee, Y. K., Gitlin, L. N., Dennis, M. P., & Hauck, W. W. (2007). Predictors of adherence to a skill-building intervention in dementia caregivers. Journal of Gerontology: Medical Sciences, 62A(6), 673-678.

Corcoran, M. A., & Gitlin, L. N. (1992). Dementia management: An occupational therapy home-based intervention for caregivers. The American Journal of Occupational Therapy, 46, 801-808.

Corcoran, M., & Gitlin, L. N. (2001). Family caregiver acceptance and use of environmental strategies in occupational therapy intervention. Physical & Occupational Therapy in Geriatrics, 19(1), 1-20.

Cornman-Levy, D., Gitlin, L. N., Corcoran, M., & Schinfeld, S. (2001). Caregiver aches and pains: The role of physical therapy in helping families provide daily care. Alzheimer’s Care Quarterly, 2, 47-55.

Gitlin, L. N., & Corcoran, M. (2000). Making homes safer: Environmental adaptations for people with dementia. Alzheimer’s Care Quarterly, 1, 50-58.

Gitlin, L. N. & Corcoran, M. (2005). Occupational therapy and dementia care: The home environment skill-building program for individuals and families. American Occupational Therapy Association.

Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A., & Hauck, W. W. (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 4-14.

Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A., & Marcus, S. (1999). Predicting participation and adherence to a home environmental intervention among family caregivers of dementia patients. Family Relations, 48, 363-372.

Gitlin, L. N. & Gywther, L. P. (2003). In-home interventions: Helping caregivers where they live. In D.Coon, D. Gallagher-Thompson, D., Thompson, L. (Eds.) Innovative interventions to reduce caregiver distress: A clinical guide (pp. 139-160). New York: Springer Publications.

Gitlin, L. N., Hauck, W. W., Dennis M. P., Winter, L., Hodgson, N., & Schinfeld, S. (2009). Long-term effect on mortality of a home intervention that reduces functional difficulties in older adults: Results from a randomized trial. Journal of the American Geriatrics Society, 57, 476-481.

Gitlin, L. N., Hauck, W. W., Winter, L,. et al. (2006). Effect of an in-home occupational and physical therapy intervention on reducing mortality in functionally vulnerable older people: Preliminary findings. Journal of the American Geriatrics Society, 54, 950-955.

Gitlin, et al. (2006). A randomized trial of a multi-component home intervention to reduce functional difficulties in older adults. Journal of the American Geriatrics Society, 54, 809-816.

Gitlin, L. N., Schinfeld, S., Winter, L., Corcoran, M., & Hauck, W. (2002). Evaluating home
environments of person with dementia: Interrater reliability and validity of the home environmental assessment protocol (HEAP). Disability and Rehabilitation, 24, 59-71.

Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M., Schinfeld, S., & Hauck, W. (2003). Effects of the Home Environmental Skill-Building Program on the caregiver-care recipient dyad: Six-month Outcomes from the Philadelphia REACH Initiative. The Gerontologist, 43(4), 532-546.

Gitlin, L. N. Winter, L., Dennis, M., Corcoran, M, Schinfeld, S., & Hauck, W. (2002). Strategies used by families to simplify tasks for individuals with Alzheimer's disease and related disorders: Psychometric analysis of the task management strategy index (TMSI). The Gerontologist, 42, 61-69.

Gitlin, L. N., Winter, L., Dennis, M. P., & Hauck, W. W. (2006). Assessing perceived change in the well-being of family caregivers: Psychometric properties of the perceived change index and response patterns. American Journal of Alzheimer’s Disease and Other Dementias, 21(5), 304-311.

Toth-Cohen, S., Gitlin, L. N., Corcoran, M., Eckhardt, S., Johns, P., & Lipsett, R. (2001). Providing services to family caregivers at home: Challenges and recommendations for health and human service professions. Alzheimer’s Care Quarterly, 2, 23-32.

KEYWORDS/SEARCH TERMS: environment, home modification, home care, caregivers, Alzheimer’s disease, dementia, daily functioning, occupational therapy