CARE-GIVING FOR FAMILY MEMBERS WITH ALZHEIMER’S DISEASE

Perhaps one of the greatest costs of Alzheimer’s disease is the physical and emotional toll on family, caregivers and friends.  As Alzheimer’s disease makes inroads into a person’s memory and mental skills, it also begins to alter his or her emotions and behaviors.  Patients can experience extreme agitation and feelings of anger, frustration and depression. They can begin to exhibit bizarre behaviors such as pacing, wandering, screaming, and physical or verbal aggression. These changes in a loved one’s personality, the need to provide constant, loving attention for years on end, and the physical demands of bathing, dressing and other care-giving duties are major reasons for caregiver exhaustion and depression and for placing AD patients in nursing homes.

A recent study analyzing data from more than 1,500 caregivers who participated in the 1996 National Caregiver Survey provides details on the physical and other costs of care-giving (Ory et al., 1999). These data show that dementia caregivers spend significantly more time on care-giving tasks than do people caring for those with other types of illnesses.  In addition, they report that this type of care-giving has a greater impact in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict than do other types of care-giving.

Other research shows that the information and problem-solving needs of caregivers evolve over time as the disease progresses and care-giving issues shift.  These findings point to a need for programs and support services tailored to the unique and evolving challenges faced by AD caregivers.  This suggestion is supported by a recent study conducted by researchers at Thomas Jefferson University, in Philadelphia.  These investigators examined particular characteristics of caregivers that might predict whether they would start and stick with an intervention designed to help them with care-giving (Gitlin et al., 1999).  Knowing these characteristics may help in the future to create better ways of assisting family members and other caregivers to care for persons with AD.  The researchers found that being older and female predicted participation in the intervention.  Those who found it easier to adhere to the intervention were older, were less depressed and had a less dependent person to care for.  Caregivers who reported depressive symptoms were unable to adhere to strategies that involved behavioral change or manipulations to the physical environment, and the authors suggest that these caregivers should be treated for their depression before they are asked to learn environmental modification techniques.

Research focusing on the safety of the home environment as an important component of caring for persons with dementia has recently been reported by this same team from Thomas Jefferson University (Gitlin et al., 2000).  Persons with dementia living alone or with a family caregiver must deal with six basic safety concerns: injury from falls, injury from ingesting dangerous substances, leaving the home and getting lost, injury to self or others from sharp objects, fire or burns and inability to respond rapidly to crisis situations.  A wide range of environmental strategies can be introduced to maximize home safety.  As everyday competencies decline with memory loss, persons with dementia may have increasing difficulty navigating physical spaces and processing and interpreting environmental cues and stimuli.  As a result, caregivers may need periodically to reevaluate the physical safety of the home and introduce new strategies for keeping the home safe.

In 1995, the NIH established a major five-year initiative to carry out social and behavioral research on interventions designed to help caregivers of patients with AD and related disorders.  Resources for Enhancing Alzheimer’s Caregiver Health (REACH) is co-sponsored by NIA and the National Institute of Nursing Research (NINR).

REACH projects focus on characterizing and testing the most promising home- and community-based interventions for helping caregivers, particularly in minority families.  The interventions include support groups, behavioral skills training programs, family-based interventions, environmental modifications, and computer-based information and communication services.  Information about the project is available on the REACH Web site (www.edc.gsph.pitt.edu/reach/).

A recent study supported by REACH concerns clinical trials recruitment, an issue vital to the continuing success of AD research.  Researchers often experience difficulty in recruiting adequate numbers of participants, and this can add to the cost of the study, the time necessary to complete it and the usefulness of the results.  Recruiting older participants and their caregivers, particularly those in minority communities, presents a special set of challenges for AD researchers. Unfortunately, recruitment outcomes are not routinely reported in the literature and the documentation of recruitment costs is rare.  This REACH study compared the cost-effectiveness of methods used by the project’s Boston site at the Hebrew Rehabilitation Center for the Aged to recruit participants for a study of AD caregivers (Tarlow et al., 2000).  The results of this study indicate that a well-planned, multi-pronged, and flexible recruitment plan is the most productive for recruiting AD caregivers.  Effective planning includes budgeting for enough personnel, materials, and time to conduct the recruitment process; using realistic estimates of the potential pools; and establishing contingency plans for under-enrollment.

If you would like more information regarding this topic, please call the Civilian Employee Assistance Program Counseling and Referral Service (CEAP C/RS) at (202) 433-0087 or outside the local dialing area you may use 1-800-995-9791.

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