Impacts of Care

The care of disabled older adults can be burdensome, but caregiving stress is not universal.

For many caregivers of elders with dementia, caregiving is emotionally and physically stressful. Yet, data from studies of caregivers of elders with functional disabilities indicate that, other than the shared restrictions on personal and leisure time, caregiving is not generally perceived as stressful by most caregivers. From a policy perspective, it is important not to generalize the findings from studies of dementia caregivers to non-dementia caregivers and vice versa. Doing so would likely result in over- or under-estimates respectively of the need for support and services. The strains and needs of both groups of caregivers should be acknowledged yet clearly distinguished for at least two reasons:

1) to accurately identify how best to assist caregivers in each group since their stressors, perceived stress, and resulting needs may differ.

2) to more accurately estimate the demand for long-term care and caregiver support services, both types and amount.

A second point –

I strongly caution about accepting research findings to date that minority caregivers are less burdened than White caregivers, that they are more resilient and have more resources to meet caregiving demands. Researchers must evaluate the sensitivity and cultural appropriateness of commonly used measures of caregiver distress to ensure that these measures are not underestimating the stress experienced by minority caregivers.

Physical and emotional well-being of caregivers is influenced not by the type and amount of care they provide but rather by their appraisal of that care.

If caregivers feel overwhelmed or overloaded by their caregiving responsibilities, they are more likely to experience physical and especially emotional problems. It should not be assumed that all caregivers providing extensive care to severely disabled elders are burdened, or that services to offer respite are the only answer. The assessment of at-risk caregivers should be directed at their feelings about their caregiving responsibilities – their ability to manage multiple demands, their confidence in their caregiving skills, their organizational and time management skills – rather than on what they do.

Caregiver well-being is enhanced by a sense of mastery, the quality of the relationship with the care recipient, and feeling supported in the role.

Caregivers use a wide variety of coping mechanisms. Interventions that take a salutogenic approach – develop caregiving skills and coping skills and mobilize sources of informal support – are likely to show more therapeutic benefit than ones taking a pathogenic approach of trying to relieve burden.

Dementia caregiving should be distinguished from non-dementia caregiving.

Dementia care, particularly at advanced stages of disease, is undoubtedly stressful. The manifestation of problem or disruptive behaviors is particularly stressful. Developing interventions to specifically address these behaviors by changing the elder’s behavior or by developing the caregiver’s skills to manage the behaviors is indicated (Schulz et al., 1995). Intervention protocols, some of which are now underway and being evaluated, include skills training, education, and counseling. As pointed out by Schulz et al. (1995), since the dementia patient is usually the contact person with the service system, patient assessments offer an opportunity for assessment of the caregiver’s status as well.