A recent study conducted by researchers in England reports that over half of family members taking care of a loved one suffering from dementia admit to abusive behavior toward the afflicted family member. While physical abuse was rare, over 50% of the 220 caretakers in the study said that they had acted abusively, with just over 33% acknowledging “significant” abusive behavior. The abuse consisted mainly of verbal attacks and threats to send the patient to a care facility. The study can be seen as a reflection of the incredibly stressful and emotional toll taken by those who care for loved ones who are progressively losing their memory and other cognitive abilities.
As dementia progresses, patients can become aggressive and difficult to interact with, particularly for those who love them and are personally affected by such behavior. For those caretakers in the study who admitted to abusive behavior, most said they regretted it. Guilt is already a major component for caretakers, for many feel they are not doing enough or should be able to “cure” their loved one. Given the progressive nature of such diseases as Alzheimer’s as well as the lack of a cure, such care can last anywhere from a few years up to 20 years, often overtaxing the loved one who is the primary caretaker. The British government is now considering putting in place policies to safeguard such vulnerable adults, looking into such options as paid caretakers.
While emotional stress is a major component to caretaker stress, financial burden can be as well, for many must give up paying jobs in order to care for a family member. In the United States, it has been estimated that approximately 80% of long-term care is provided without compensation, and often this involves around the clock care. The frequency of abuse by such caretakers in the United States is unknown, for such studies have not been conducted. However, the numbers are thought to be similar to those found in the English study.
Past studies have shown that caretakers of family members with Alzheimer’s Disease are at greater risk for depression, hypertension, fatigue, alcoholism, and other stress-related illnesses. Those caretakers between the ages of 66 and 96 experiencing emotional stress related to their role as caretaker have a 63% higher risk of dying than people in that age group who are not caretakers.
So what can be done to deal effectively with this crisis of caretaker stress? Taking advantage of such resources as respite care, adult day care facilities geared toward patients afflicted with dementia, support groups as well as counseling can have a major impact on reducing stress and increasing overall health for both patient and caretaker. Recent studies that shed light on the impact of specific models that can improve both caretaker and patient outcome include the following:
- A 2006 study conducted by the New York University School of Medicine found that caregivers who received intensive counseling by specialists trained to deal with memory loss and behavioral changes related to Alzheimer’s were able to avoid placing the patient in a nursing home by a year and a half; some patients avoided nursing homes altogether. Caregivers were better able to understand and tolerate the stress of memory loss and agitation that accompany advanced stages of the disease and were less likely to suffer from depression and happier with support they received from family members.
- In another study conducted in 2006 by the Indiana University Center for Aging Research and the Regenstrief Institute, Inc., a collaborative care model composed of a primary care physician as well as an advanced practice nurse who served as case manager, providing educational information, help navigating the health care system, as well as help for day-to-day issues of care found a significant decrease in patient agitation which directly correlated to lower caregiver stress and depression.
Overall, researchers have found that the reasons for caretaker burnout generally include the stress of role reversal, such as when the child must become the parent; unrealistic expectations given the progressive nature of the disease as well as lack of a cure; the lack of control associated with watching a loved one lose memory and cognitive function; and the unreasonable demands put upon the caretaker, including such issues as medication management, preparing living wills, and becoming a healthcare provider when one’s background may not include such experience.
For further information regarding resources to help assist caretakers, the Alzheimer’s Association in the United States offers a 24-hour phone line at (800) 272.3900 as well as a caretaker stress test at www.alz.org/stresscheck as well as the National Institute on Aging site at http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm. Alzheimer Europe at www.alzheimer-europe.org provides resources for caretakers in Europe, and in Canada resources can be found at the Alzheimer Society of Canada at http://www.alzheimer.ca/english/resources/weblinks.htm.
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