Report Describes Dementia's Toll on Caregivers
Caregiving is something that sneaks up on you. The stress of taking care of someone with dementia can not only last a long time, but it can take a tremendous toll on the caregiver.
The Alzheimer’s Association’s 2011 Alzheimer's Disease Facts and Figures reported that caregivers of people with Alzheimer’s or other types of dementia often provide care for a longer amount of time than caregivers of other older people. “They are more likely to have provided care for 1 to 4 years than are their other caregiver counterparts (43 percent versus 33 percent), and somewhat more likely to be providing care for five or more years (32 percent versus 28 percent),” the report’s authors state.
Caregivers’ stress remains at high levels during this period. Sixty-one percent of family caregivers of those with dementia said that the emotional stress caused by caregiving was high or very high. About one-third of family caregivers also were experiencing symptoms of depression. They reported caregiving strain about financial issues (56 percent) as well as family relationships (53 percent).
The stress caused by a loved one’s behavioral symptoms caused by dementia often is associated with placement in a nursing home. However, even after this placement, caregivers had high levels of emotional and physical stress. Additionally, 59 percent of caregivers said that during the year prior to the death of people with dementia, they felt they were on-call 24/7. Many caregivers described this time as extremely stressful; furthermore, 72 percent of family caregivers said they were relieved when the person with dementia died.
This stress can lead to poorer health for the caregiver. The Alzheimer’s Association warned, “Caregivers may become potential ‘secondary patients’ because of the negative impact that providing care may have on their general health and risk for chronic disease, health-related physiological changes, healthcare utilization and even death.” One study projected that the physical and emotional impact of this type of caregiving is $7.9 billion in increased healthcare costs in the United States.
Caregivers also were more likely than noncaregivers to report having fair or poor health and to say that caregiving made their health worse. “Caregivers of people with Alzheimer’s and other dementias may also have difficulty maintaining healthy behaviors, as only 3 percent reported using physical activity as a way of getting relief from their caregiving responsibilities,” the report’s authors noted. “High body mass index (BMI), known to be associated with chronic illnesses, was noted in approximately 66 percent of family caregivers, who were either overweight or obese. Functional status (as assessed by walking speed) was found to decrease in older women caregivers who had the most stressful caregiving situations and had more indicators of metabolic syndrome (i.e., hypertension, diabetes, high cholesterol and high BMI), suggesting that these caregivers may experience greater decline in health.” Additionally, these caregivers were more likely to experience physiological changes, including high stress levels, reduced immune function, slow wound healing, new hypertension, new coronary heart disease, and impaired endothelial function (which may lead to increased risk of cardiovascular disease).
As we continue to have the debate about health care in this country, I hope that policymakers will take into account not only the toll that Alzheimer’s and dementia cause on the person who has the disease, but also on those who step into the caregiving roles.