Caregiver Burden in Alzheimer's Disease: Italy vs. USA

Introduction: Comparing Two Studies on Caregiver Burden

The following is a comparative analysis of two research articles on the burden of caregivers. Both articles address the same general subject, yet they differ in tone, methodology, and conclusions. Both demonstrate the enormous responsibility and unmitigated burden that caregivers carry, which results in significant stress and hardship. One study was conducted on a population in Italy, while the other was carried out on a sample in America.

It is striking to note that, although both studies concluded that caregivers needed more support, the American study recommended ways that individuals could create this support for themselves, while the Italy-based study placed the responsibility on the community and the social work profession. The tone of the articles also differed: the American-based study took a far more active stance, advising caregivers to aggressively improve their own situation. Together, the two studies serve as commentary on the way that science in general — and social work in particular — is influenced by cultural nuances. The European study is far less inspired by beliefs of self-responsibility and self-actualization than the American researchers of the second study were.

Summary of Sansoni et al. (2004): Italian Alzheimer's Caregivers

Italy has a large population of patients with dementia, calculated at approximately 6%, of whom 57% suffer from Alzheimer's disease (AD). Being a family-oriented culture, Italy also has approximately 80–90% of this population receiving care from family members, and the caregivers are predominantly women. Many prior studies had evaluated the problems that caregivers experience, but none had used a repeated-measures design — that is, a study repeated on the same population using various instruments. To that end, and in order to investigate the levels of anxiety and depression in female caregivers caring for AD patients, Sansoni et al. (2004) surveyed a sample of 34 female Italian Alzheimer's caregivers who lived in three major Italian cities and who were the principal caregivers of patients living in their homes. The average age of the caregivers was 59, and most of them cared for their husbands.

The researchers surveyed the caregivers over a total of nine weeks using instruments that included the following: a General Questionnaire about Caregiving, Mini Mental State Examination (MMSE) scores, the Spielberger State-Trait Anxiety Inventory, and the Geriatric Depression Scale. Participants spent three days completing the various reports. The patients were tested with the MMSE in order to verify their state of dementia.

Results showed that caregivers suffered high levels of anxiety (76%) and depression (42%), and that these were positively correlated with long hours of care. Additionally, 56% of caregivers reported suffering from physical illnesses, while 32% reported psychological illnesses. Statistical data showed a positive association between depression and anxiety and both physical and psychological illness, indicating that one was linked to the other. Researchers also found that depression and anxiety were negatively correlated with level of education and time for leisure activities: caregivers who had received more education and were more involved in leisure activity were less likely to become depressed or showed lower levels of depression. No correlation, however, was found between MMSE scores and depression or stress, indicating that the extent of caregiver burden had nothing to do with the degree of the patient's mental impairment — the burden was large regardless of the severity of dementia.

The researchers concluded that caregivers needed to be given more social and communal support, and that this support should extend to educational services as well as enhanced respite and healthcare support. They ended with a list of eight recommendations for nurses on how to support caregivers in their demanding role, and emphasized that more studies needed to be conducted to identify the specific problems that caregivers in Italy experience when caring for their patients.

Hayslip et al. (2008) conducted their study in America and examined similarities and differences between children and spouses who cared for a relative with Alzheimer's (active caregivers) and children and spouses who cared for elderly relatives who did not yet have Alzheimer's (not-as-yet caregivers). Eighty community residents from the Dallas–Fort Worth metropolis, Austin, and San Antonio in Texas were recruited: 42 were active caregivers and 37 were not-as-yet caregivers. The active caregiver group comprised 34 females and 8 males, including 25 children and 17 spouses. The not-as-yet caregiver group consisted of 29 females, 9 males, 23 children, and 15 spouses. Approximately 82% of the not-as-yet caregiver participants were married, compared with about 88% of the active caregiver group. The income levels of both groups were comparable.

Summary of Hayslip et al. (2008): American Alzheimer's Caregivers

Participants completed a background information form covering relevant demographic information and were compensated for their participation. The measures used included the following: the Expressive Support Scale (ESS), used to measure the caregiver's subjective perception of burden; the Alzheimer's Disease Knowledge Test (ADK); the Facts on Aging Quiz (FAQ); the Personal Anxiety toward Aging Scale (PAA); the Locus of Control Scale (LCS); and the NEO-Five-Factor Inventory (NEO-FFI), a personality test. The Geriatric Depression Scale–Short Version (GDS-S) and the Caregiving Burden Scale (CB) were also used to measure depression. Regression analysis was conducted.

Researchers discovered that both caregiver groups suffered from depression and anxiety, but that while fear of aging and personality factors — mainly extraversion — were the primary sources of depression among active caregivers, the not-as-yet caregiver group primarily suffered from lack of social support, which was the main contributor to their depression.

Caregiver burden was also measured, and the dominant factors that contributed to a perceived high level of burden were lack of social support, fear of one's own aging, and guilt. These factors held consistent across both groups.

The researchers concluded that this research is helpful in enabling people who may face the prospect of becoming caregivers to build their social support networks, learn active self-care skills, and educate themselves about what is meaningful in growing older. Part of the benefit of doing so, the researchers observed, would lie in a reduction of costs that would otherwise be spent on improving physical and emotional health. The researchers also noted that personality attributes contributed more to depression — or to the alleviation of depression — than did lack of social support. Younger individuals were found to be more prone to depressive characteristics such as fear of aging, anxiety, and guilt. Stress management skills would therefore be a prerequisite for them, as would learning how to manage their emotions.

Conclusion: Culture's Influence on Social Science Research

Not surprisingly, the American study also placed its focus on cost — arguing that teaching stress management skills to caregivers would reduce the expense of interventions and treatment — while the Italian study focused on relieving the physical and psychological health of caregivers and did not address financial considerations.

Together, these two studies illustrate how cultural bias can shape the design, measurement, and conclusions of social science research. Even when researchers are studying the same phenomenon — the burden experienced by Alzheimer's caregivers — the cultural lens through which they work leads them to ask different questions, use different instruments, and arrive at recommendations that reflect the values of their respective societies. Awareness of this dynamic is essential for critically evaluating research across national and cultural contexts.