Helping Caregivers Cope

Caring for a person with AD presents unique challenges, and considerable research has explored the physical, emotional, and mental stresses on AD caregivers. This area of research is an important component of NIH’s overall AD research effort. Investigators supported by NIA, NIMH, and NINR continue to study ways to understand better the effects of caring for a loved one with AD and to find improved methods of caregiving.

• An emerging body of findings suggests that chronic stress has a negative impact on the immune system. A study by NIA intramural investigators compared the immune cells of AD caregivers and a control group. They found strong evidence that the chronic stress of caregiving adversely affected the caregivers’ immune function (Damjanovic et al., 2007). In addition, the investigators found negative effects on the regulatory processes controlling cell replication and aging.

An ultimate goal of AD research is to find ways to reduce stress and burden on caregivers. For example, agitation, psychosis, and disruptive behaviors can be difficult for caregivers to cope with. Investigators are exploring a diverse array of treatment approaches to help both the person with AD and the caregiver by reducing psychiatric and behavioral symptoms through drug therapies and other means.

• A clinical trial is examining whether the drug valproate can delay or prevent agitation and psychosis in people with mild to moderate AD. Researchers also are interested in seeing whether valproate’s possible neuroprotective properties can slow the rate of cognitive decline.
• A clinical trial supported by NIMH has tested the safety and effectiveness of two medications to treat psychosis in people with dementia (Pollock et al., 2007). One group received the antidepressant citalopram and the other group received the second-generation, or “atypical,” antipsychotic risperidone, which is commonly prescribed to treat agitation and psychosis in people with dementia. The trial, conducted by scientists at the Rotman Research Institute in Toronto, found that the number of patients who completed the treatment protocol did not differ between the two groups. Symptoms declined similarly in the two groups. However, the group treated with risperidone reported more side effects than the citalopram group. This trial suggests that antidepressants may be better tolerated and possibly safer than atypical antipsychotic medications in people with dementia. Before definitive conclusions can be made about treating behavioral and psychotic symptoms in people with AD, these findings need to be replicated in a larger group with a broader array of antidepressants and antipsychotic medications.
• Managing agitation is a major priority in AD treatment, but nondrug options have limited effectiveness. Several drug options have been explored, but findings for anticonvulsants, antipsychotics, and cholinesterase inhibitors have been disappointing or associated with questionable risk-to-benefit ratios. Better drug options are needed. Selective serotonin reuptake inhibitors show promise as a treatment for agitation in AD, based on evidence of a link between agitation and serotonin abnormalities in people with AD. Also encouraging are preliminary clinical data from a single-site trial in which the selective serotonin reuptake inhibitor citalopram proved superior to perphenazine (an anti-psychotic drug) and a placebo. NIA and NIMH recently co-funded the Citalopram for Agitation in AD (CITAD) trial, which brings together investigators who have collaborated successfully in the ongoing Depression in Alzheimer’s Disease Study (DIADS-2) and the completed Clinical Antipsychotic Trials of Intervention Effectiveness–Alzheimer’s Disease (CATIE–AD). CITAD will examine the efficacy and safety of citalopram as a treatment for clinically significant agitation in 200 people with AD. The 9-week, eight-site trial also will investigate pharmacogenomic, genetic, and clinical predictors of response to citalopram therapy in outpatients and nursing-home and assisted-living residents. Using state-of-the-art clinical ratings and novel weekly caregiver telephone ratings, CITAD will examine the effects of citalopram on agitation, other neuropsychiatric symptoms, cognition, quality of life, and daily functioning.
• NIMH-supported investigators at the University of Southern California and the Veterans Administration Connecticut Health Care System conducted a cost-benefit analysis of the use of atypical antipsychotic drugs to treat psychosis, agitation, and aggression in people with AD (Rosenheck et al., 2007). Using data from a large clinical trial on the effectiveness of treatment with antipsychotics, the investigators found that in some instances treatment with these drugs was no more effective than “watchful waiting,” which involves general medical management and support but no treatment with antipsychotics. They also found that drug treatment was significantly more expensive.

Other investigators are exploring ways of managing psychiatric and behavioral problems through interventions that do not involve drugs.

• An NIMH-supported study by researchers at Pennsylvania State University showed that adult day care services may help caregivers manage some behavioral and psychological symptoms, such as nighttime sleep disturbances (Femia et al., 2007).
• Scientists at the Research Institute on Aging of the Charles E. Smith Life Communities in Rockville, Maryland, developed and tested an algorithm for nursing home staff to use in providing individualized, non-drug interventions for residents with agitation (Cohen-Mansfield et al., 2007). The algorithm helped staff identify the type of agitation and the particular needs of the resident. It also helped them design responses that reduced the resident’s agitation in a way that matched his or her cognitive, physical, and sensory abilities and lifelong habits and roles. Use of the algorithm significantly decreased agitation in the test group, and use of the individualized interventions increased residents’ pleasure and interest in life.
• NINR supported a clinical trial, conducted by a research team at Rush University Medical Center, to test a skill-building intervention with a group of caregivers who were coping with severe behavioral symptoms in a family member with AD (Farran et al., 2007). Compared with a basic information and support intervention, the skill-building program more effectively reduced caregivers’ emotional distress. The reduced stress level persisted during an 18-month period.
• NINR-supported researchers at the University of California San Francisco conducted a clinical trial that tested the effect of 1 hour of daily light therapy on the frequency and severity of disruptive behaviors in nursing home residents with AD (Dowling et al., 2007). Residents who received light therapy showed a small but statistically significant reduction in levels of agitation, depression, eating disorders, and abnormal motor behavior.

Many people who develop AD must eventually move from their homes or an assisted living facility to a nursing home where they can receive more intensive care. A major clinical goal is to maximize the person’s ability to function independently and to continue living in the least restrictive environment for as long as possible. A number of researchers are investigating ways to achieve this goal.

• Placing a loved one in a nursing home may relieve some of the burden of caregiving but does not necessarily reduce caregiver stress or emotional distress. Investigators at New York University School of Medicine tested the effects of an enhanced counseling and support program on nursing home placement and caregiver health (Mittelman et al., 2006; Mittelman et al., 2007). This program for AD caregivers consisted of six sessions of individual and family counseling, support group participation, and on-demand telephone counseling. Participants showed less of a decline in how they rated their own health over time than did other caregivers who did not participate in the program. Participants also were able to delay placing their loved ones in nursing homes by about 18 months. Researchers attributed these results to improved caregiver well-being, which was demonstrated by greater tolerance for the loved one’s memory and behavior problems, improved satisfaction with the support provided by family and friends, and fewer symptoms of depression.
• In an ongoing NIMH-supported study, investigators at Johns Hopkins University followed 198 people for 18 months to estimate the association between dementia and the length of time in an assisted living facility before death or placement in a nursing home (Lyketsos et al., 2007). Preliminary findings showed that the length of residence for people with dementia was, on average, 209 days shorter than for other residents. The researchers found that a lack of treatment for dementia and the presence of other serious medical conditions predicted the shorter stays of residents with dementia. To a lesser extent, impairments in mobility and limited participation in activities at the assisted living facility also played a role.

<< Back | Next >>