American Journal of Alzheimer's Disease & Other Dementias®

Families of persons with Alz-heimer's disease oftentimes face the difficult decision ofplacing their loved one in a care facility. This article addresses some of the predominant stresses involved in this process, and looks at how the long-term care industry can assist families in lessening the burden of such placement

Given the frequent attention and focus on Alzheimer's disease by the mass media over the recent decades, it is assumed that the American public is fairly well-informed and knowledgeable about the disease. However, what the public actually knows about Alzheimer's disease and the characteristics of those persons most informed have generally remained a mystery as only afew aspects of disease awareness have been sporadically measured. Thus, this study explicitly explores the level of overall public knowledge about Alzheimer's disease measured through survey research based on a nationally representative sample of 1498 persons age 45 and over. The Alzheimer's Disease Awareness Test (ADAT) was developed and utilized with 17 items dealing with disease etiology, symptoms, and misconceptions. While almost everyone (91 percent) has heard of AD, there are wide gaps in disease knowledge among a significant portion of the public. Two tiers of knowledge arefound to exist indicating the different types of information known:

The Easy/General Knowledge Tier is comprised of eight items tapping disease aspects that are less technical in nature, require little conceptual sophistication and tend to be facts widely disseminated by the mass media; and

The Hard/Specific Knowledge Tier is comprised of nine items requiring more complex understanding and deal with more scientific disease aspects.

Most persons score moderately high on the Easy/General Index while few do well on the Hard/Specific Index. Correlates of a high level of knowledge on both tiers are education, age, knowing someone with AD as well as the closeness and relationship of the effected person, and having parents who are living

This study examined how 70 caregiving spouses of Alzheimer patients varied in their reports of depression and burden, and how these reports were associated with the nature and severity of patient behavior problems, in particular memory-related, depressive, and disruptive behaviors. Depression and burden were found to be overlapping, but separate constructs, with about half of the variance unshared. Caregivers were divided into subgroups according to high and low levels of depression and burden, with the three most common groups being low depression/low burden (46 percent), high depression/high burden (26 percent), and low depression/high burden (23 percent). Only 6 percent of caregivers reported high depression/low burden. The level of patient behavior problems varied significantly among the remaining depression/burden classifications. Caregivers in the high depression/high burden and low depression/high burden categories reported greater numbers of disruptive behaviors and greater reactivity to memory-related and disruptive behavior problems, compared to the low depression/low burden group. The implications of these findings as they pertain to further elaboration of individual differences in caregiving experiences and interventions are discussed

There is an increasing need to provide interventions which offer opportunities for individuals who care for spouses and other family members to decrease their loneliness and increase their self-esteem. This pilot study, which included four caregivers and their spouses, was a joint effort including music therapy and social work services. It was designed to determine if caregivers who had no prior musical experiences could be trained to use music with their care recipients. It was also designed to determine if caregivers' participation with other care giving and care receiving couples in a social gathering with music therapy programming would affect changes in their measure of loneliness and self-esteem. The results indicated that three of the four caregivers who participated in this study had changes in their selfes-teem scores which indicated improved self-esteem. These changes were not significant, but approached significance at the .05 level of confidence of two subjects. One subject showed little to no change in self-esteem. None of the spouses had significant changes in their measure of loneliness, although The American Journal of Alzheimer's Disease and Related Disorders & Research, January/February 1993 24 two of the four subjects showed trends for less loneliness while one remained about the same and one increased slightly. Additional research is required to further establish the effects of music therapy on self-esteem and loneliness in caregivers offamily members diagnosed with probable Alzheimer's disease

A one-day retreat focusing on spiritual renewal for caregivers was offered in conjunction with a concurrent dementia day care program. Postretreat questionnaire responses indicated positive attitudes overall toward the spiritual retreat, but many caregivers expressed a desire for greater informational content and more time for interaction with other caregivers. All were satisfied with the level of care patients received in the day program. Although there was no significant change in mean level of depression in caregivers following the retreat, the concurrent respite-retreat experience appeared to motivate several caregivers to try a group support service for thefirst time.