Primary Care Interventions for Dementia Caregivers:
Two Year Outcomes from the REACH Study
Robert Burns, MD 1
Linda O. Nichols, PhD 2
Jennifer Martindale-Adams, EdD3
Marshall J. Graney, PhD4
Allan Lummus, MA5
1MEDSenior Connection, Regional Medical Center, Memphis, TN, Departments of Preventive Medicine and Internal Medicine, University of Tennessee Health Science Center, Memphis, TN. 1726 Poplar Avenue, Memphis, TN 38104; Phone: (901) 725-0872, Fax (901) 278-6934, E-Mail:
2 Veterans Affairs Medical Center, Departments of Preventive Medicine and Internal Medicine, University of Tennessee Health Science Center, Memphis, TN. VAMC (11-H), 1030 Jefferson Avenue, Memphis, TN 38104; Phone: (901) 523-8990* 5082, Fax: (901) 577-7439; E-mail:
3 Department of Preventive Medicine, University of Tennessee Health Science Center, Memphis, TN. VAMC (11-H), 1030 Jefferson Avenue, Memphis, TN 38104; Phone: (901) 523-8990 *5080, Fax: (901) 577-7439; E-mail:
4 Department of Preventive Medicine, University of Tennessee Health Science Center, Memphis, TN. 66 North Pauline, Memphis, TN 38163; Phone: (901) 448-5191, Fax: (901) 448-7641; E-mail:
5 Department of Preventive Medicine, University of Tennessee Health Science Center, Memphis, TN. VAMC (11-H), 1030 Jefferson Avenue, Memphis, TN 38104; Phone: (901) 523-8990 *5080, Fax: (901) 577-7439; E-mail:
This research was supported through the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) project, which is supported by the National Institute on Aging and the National Institute of Nursing Research (Grant: U01-AG13313). It was supported in part by the Office of Research and Development, Department of Veterans Affairs, and the Memphis VA Medical Center.
Our thanks to Ann Kirkpatrick, MSW, for her excellent assistance with the manuscript.
Correspondence should be addressed to Robert Burns, VAMC (11-H), 1030 Jefferson Avenue, Memphis, TN 38104; Phone: (901) 523-8990 Ext. 5082; Fax: (901) 577-7439; E-mail:
1
Abstract
Purpose. This study developed and tested, over 24 months, two primary care interventions to alleviate Alzheimer’s caregivers’ stress. The interventions, using targeted educational materials, were patient behavior management only, and patient behavior management plus caregiver stress/coping management. We hypothesized that the addition of the stress/coping component would improve caregiver outcomes.
Designand Methods. A randomized clinical trial of 245 caregiver-care recipient dyads (115 active caregivers completed the study).
Results. At 24 months, caregivers who received the stress/coping component with the patient behavior management component compared to those who only received patient behavior management had significantly better outcomes for general well-being (GWB) and depression (CES-D), but not for the bother associated with care recipient behaviors (RMBPC).
Implications. Our data suggest that brief, primary care based interventions are effective in reducing caregiver stress and burden in the long-term management of the dementia patient. They further suggest that interventions that focus solely on care recipient behavior, without addressing caregiving issues, may not be adequate for reducing caregiver stress.
KeyWords: Alzheimer’s disease, frail elders, memory disorders
Introduction
Although primary care providers are usually the first contact with the health care system for patients with Alzheimer’s disease and related dementias (ADRD) and their families, physician-based, or primary-care-based, interventions to assist patients and caregivers are rare. The goal of this research was to explore the effectiveness of brief, targeted interventions for ADRD caregivers in the primary care setting.
At least nine separate consensus statements and practice guidelines have emphasized the importance of physicians in the treatment of ADRD patients in recent years (American Medical Association, 1999; Department of Veterans Affairs 1997; Fillit, Knopman, Cummings, and Appel, 1999a, b; Small et al., 1997). The primary focus of these consensus statements and practice guidelines ranges from diagnosis to management, but all documents include the importance of the family caregiver and the role of the physician in providing support and education for the caregiver. Unfortunately, physicians who are oriented in the medical model are often uncertain or do not know what to do for the patient and family after a dementia diagnosis (Brotman and Yaffe, 1994; Fortinsky, Leighton, and Wasson, 1995).
Although families want the involvement and assistance of their physicians (Silliman, 1989), there are mismatched expectations around dementia (Miller, Glasser, and Rubin, 1992), with caregivers and physicians having different perspectives on what is important (Levine and Zuckerman, 1999; Bogardus et al., 1998; Boise, Camicioli, Morgan, Rose, and Congelton, 1999). Caregivers want more concrete and practical information and assistance than physicians offer (specifically about the nature of the disease, medications, guidance, and training in how to manage behavioral symptoms) and referrals to community agencies (Levine and Zuckerman, 1999; Glasser et al., 1989; Fortinsky and Hathaway, 1990; Boise et al., 1999; Connell and Gallant, 1996; Cohen, 1991; Haley, Clair, and Saulsberry, 1992). Caregivers also want more emotional support and attention than physicians may be able to offer (Brotman and Yaffe, 1994), including recognition of their anxiety (Levine and Zuckerman, 1999; Fortinsky and Hathaway, 1990).
Physicians are often frustrated with the expectations of families, the inadequacy of what the medical system has to offer patients, and their ability to manage dementia patients (Miller, Glasser, and Rubin, 1992; Boise, et al., 1999). Physicians have reported being uncomfortable giving advice about behavioral symptoms. This reluctance may reflect the physician’s lack of information on how to manage dementia (Miller et al., 1992; Boise et al., 1999), or lack of information about community resources to serve Alzheimer’s patients and families (Fortinsky, 1998; Fortinsky et al., 1995; Haley et al., 1992). With multiple medical problems, physicians are less likely to spend time on cognitive problems, especially those that appear to be “untreatable” (Boise et al., 1999; Burns, Nichols, Martindale-Adams, and Graney, 2000). The issue of time may be exacerbated by the lack of reimbursement for family counseling (Brotman and Yaffe, 1994; Burns et al., 2000).
The failure of primary care physicians to provide the needed family caregiver support has forced caregivers to seek assistance outside of the formal medical care system. However, integration of family caregiving into the formal medical/health care system is an important clinical and policy issue. For most people the formal medical care system serves as the portal of entry into other formal and informal systems. For many areas of the health and social service system, such as home health care, physician involvement may be a requirement for entry. The primary care setting is an ideal place to develop interventions specifically to manage dementia and decrease family caregivers’ burden. This setting combines the formal and informal systems of providers and caregivers in a real-life scenario and it is the first and continuing access point in the health care system for the patient and caregiver.
In addition, in the primary care setting, continued long-term management of the dementia patient and the caregiver is possible. Mittleman and her colleagues (1995, 1996) have shown that long-term behavioral intervention to caregivers is effective. Long-term management has proved successful in maximizing and then maintaining the health status of frail older adults who are not demented through continuous reassessment and ongoing educational and preventive measures (Burns et al., 2000). The long-term nature of dementing illnesses suggests that the primary care management model may be efficacious in assisting caregivers to manage the illness, if primary care physicians have the information and tools they need to provide care.
The intent of this intervention, part of the REACH (Resources for Enhancing Alzheimer’s Caregivers Health) project, was to develop and test simple, standardized, and systematic approaches for physicians and/or their staffs to guide their interactions with caregivers and patients. The interventions would provide the information Alzheimer’s caregivers seek from their physicians – techniques to manage patient behaviors, and strategies to alleviate caregiving stress. Given the time constraints in primary care, any intervention needed to be brief to be sustainable in this setting in the long-term management of the dementia patient. This paper examines two of the three groups randomized at the Memphis site to address our hypothesis that the management of patient behavior alone is not sufficient to alleviate caregiver stress and burden.
These two active, primary care-based caregiver interventions were parallel in structure and format with one focusing only on education about patient behavior management; and the other adding education about caregiver stress and coping management to patient behavior management. The addition of caregiver stress and coping to the primary care setting changes the focus of the physician’s care from the patient to the patient/caregiver dyad. We hypothesized that burden and stress, as measured by depression, general well-being and the amount of bother that caregivers experience dealing with care recipient behaviors, would decrease with the addition of the caregiver stress and coping component. Given the brief nature of these interventions, we also hypothesized that maximum benefit would be seen with long-term management, over a 24-month period.
Methods
This research analyzes data collected at the Memphis site of the national NIA/NINR project Resources for Enhancing Alzheimer’s Caregivers Health (REACH). REACH was a six-site study examining various intervention strategies targeting caregivers of patients with Alzheimer’s disease. The Memphis study was approved and monitored by the University of Tennessee and VA Medical Center Institutional Review Boards.
Intervention. The design for this Memphis REACH study was a 24-month randomized clinical trial with two active interventions: Behavior Care and Enhanced Care. The interventions, conducted within a primary care setting, were designed to aid caregivers in the management of dementia patients at home, with the assistance of the primary provider/network. During the regularly scheduled primary care visit for the patient, a health educator/interventionist provided the intervention, with phone calls between visits. Education materials were developed to standardize the interactions. The groups included:
Behavior Care: The Behavior Care intervention provided education sessions on behavior management of the patient. The intervention focused on ADL tasks and specific behavior issues such as aggressive behavior or wandering. The interventionist and caregiver assessed the caregiver’s current knowledge and identified areas of concern about the patient’s functioning. After problem identification, using the educational materials developed for the project, the interventionist and caregiver a) discussed possible causes of the problems and actions that could be taken; b) arrived at the most feasible solutions to individual issues; c) discussed implementation of behavior management strategies; and d) identified, modified, and reinforced resources to assist the CG in managing behaviors in the home. The CG also received the educational materials used to identify the specific problems, as shown in Table 1. These comprehensive materials, written at a fifth-grade reading level, provided information on possible triggers for behavior and specific suggestions for dealing with the behavior. The 21 behavior-focused pamphlets were used to target the caregiver’s specific patient behavior concerns.
-Insert Table 1 about here-
Enhanced Care: The structure of the Enhanced Care intervention was the same as that of the Behavior Care intervention, with a component on stress/behavior management for the caregiver added to the care recipient behavior management component. The intervention included specific stress/behavior management sessions for the caregiver focusing on such topics as communication and anger. However, the targeted education extended behavior management to include instruction/education in intrapersonal efforts to change how the CG thought or felt to reduce emotional distress in situations where the course of events could not be changed. The specific nature of the cognitive-behavioral skills training included such concepts as relaxation training and strategies to help cope with negative thoughts and feelings, such as grief and guilt. The intervention was structured like the Behavior intervention, with at least one patient behavioral issue and one caregiving issue discussed each visit, with caregivers receiving the appropriate educational materials for the problems identified. The 12 caregiver-focused pamphlets (shown in Table 1) served as the focus for the caregiver’s stress/coping concerns.
In keeping with the primary care-based nature of these interventions, the face-to-face portion of each was designed to be short. Each Behavior contact was designed to be no more no more than 30 minutes and each Enhanced contact no more than 60 minutes. The groups also included telephone contacts between visits. During the first six months, these groups received phone calls of no more than 10 minutes twice a month, decreasing to monthly thereafter.
Currently, there are no guidelines for frequency of clinical re-evaluation of dementia patients. Based on recommendations from local geriatricians, the interventions were scheduled every three months, based on four primary care visits per year for a relatively healthy, but demented, patient. This timetable was followed by the geriatrician providers in the study. General internal medicine, family practice, and neurology providers did not always routinely schedule their demented patients as frequently, but did so for the course of the study.
Participants. Memphis caregivers and care recipients (patients) were recruited from their physicians’ offices. Caregivers were eligible for study participation if they were over the age of 21, lived with a relative with ADRD and provided a minimum of four hours of supervision or direct care per day for at least the past six months. Caregivers were excluded if they were involved in another caregiver study. Caregivers were also excluded if they or their care recipients had a terminal or severe illness or disability that would prohibit them from participating in the study.
Care recipients had to have a medical diagnosis of probable ADRD or attain a score less than 24 of 30 points on the Mini-Mental State Exam (MMSE) (Folstein, Folstein, and McHugh, 1975). Additionally they had to have at least one limitation in basic activities of daily living (ADL) (Katz, Ford, Moskowitz, Jackson, and Jaffe, 1963) or two dependencies in their instrumental activities of daily living (IADL) (Lawton & Brody, 1969) as reported by the caregiver. These participation criteria were designed to ensure that caregivers were involved in daily tasks that were potentially burdensome. Subjects were telephone screened for eligibility by a trained data collector.
Data Collection. REACH baseline data included both caregiver (CG) and patient data, although only MMSE data were collected directly from the patient. Informed consent was obtained from each participating caregiver prior to administering the REACH interview. The caregiver granted permission to allow the MMSE to be administered to the patient. All data were collected at the physician’s office during a visit by the patient. Data were collected at baseline and at six-month intervals for the 2-year duration of the active intervention.
Caregiver and patient demographic data analyzed here included age, sex, race, education, income, duration of caregiving, and relationship. A four question Health Status Scale (Archbold, Stewart, Harvath, and Lucas, 1986) was used to assess caregivers’ perceived physical health and anticipated changes in health. All four questions are scored on a 5-point scale producing a composite score ranging from 4 (poor) to 20 (excellent).
The General Well-Being Scale (Brook, Ware, Davies et al., 1979), as modified by Graney and Elam (Burns et al., 2000) was used as a global measure of caregiver well-being. The 22-item scale produces a composite score or seven subscale scores, including positive well-being, anxiety, general health, vitality, depression, self-control, and mental health. Each item is scored from 1 to 5 with higher scores indicating greater well-being.
Caregiver affect was assessed with the Center for Epidemiological Studies Depression (CES-D) scale (Radloff, 1977). The CES-D is a 20-item measure that asks about the frequency with which respondents have experienced depressive symptoms within the past week. Items are scored from 0 (rarely or none of the time) to 3 (most or almost all of the time). Items are summed for an overall score of 0-60, with higher scores indicating greater depressive symptoms. A score of 16 or more has been clinically associated with a greater risk of depression (Radloff and Teri, 1986).
To obtain information on how the dementia was manifested for the patient and affected the caregiver, information was collected using the 24-item Revised Memory and Behavior Problems Checklist (RMBPC) (Teri et al., 1992). For each patient behavior reported, caregivers respond in terms of how much they are bothered on a 5-point scale, from 0 (not at all) to 4 (extremely bothered). Average bother scores were calculated among all behaviors assigning no upset to behaviors that were not manifested. Scores range from 0 to 96 with higher scores indicating greater bother.
The cognitive status of the patient was assessed at entry into the study using the Mini-Mental State Examination (MMSE) (Folstein et al., 1975). The MMSE is a 30-point scale used to assess a person’s orientation to time and place, short-term memory, visual construction, and language skills. Higher MMSE scores indicate better cognitive functioning. Care recipient functional status was assessed using the 6-item Katz Activities of Daily Living Scale (ADL) (Katz et al., 1963) and the 8-item Lawton and Brody Instrumental Activities of Daily Living Scale (IADL) (Lawton and Brody, 1969). Each item was scored 0 (no help needed) or 1 (help needed). ADL and IADL scores were created by summing scores across the items, with higher scores indicating greater functional impairment.