January 24, 2004

Caring for a loved one with Alzheimer’s disease is among the most stressful of all life situations. But a comprehensive program of counseling and support that targets how caregivers react and respond to difficult situations can ease the burden of care, a new report shows, making it a win-win situation for caregivers and those with the mind-robbing ailment alike.

Researchers at the Silberstein Aging and Dementia Research Center at New York University Medical School enrolled 406 men and women who were caring for a spouse with Alzheimer’s disease at home in a randomized controlled trial, and interviewed them regularly to find out how they were coping with caregiving. Many of those being cared for were in the moderate to moderately severe stages of Alzheimer’s, when stressful problem behaviors such as agitation and wandering become increasingly common.

One group of caregivers received standard support and care, which included counseling and support when requested. The others received enhanced counseling and support that was targeted at helping them cope with the major problem behaviors that contribute to caregiver stress. The comprehensive support consisted of three main components:

1) Counseling. At the start of the study, all caregivers were given two one-on-one counseling sessions with a counselor, as well as four counseling sessions that included the whole family. The counseling sessions were tailored to the needs of each family. The sessions could focus on such issues as learning about the illness, promoting communication and reducing conflict and disagreement among family members, and boosting support (both emotional and physical) for the main caregiver. Counselors also provided information about where to go for additional assistance, including financial planning.

Caregivers were also taught effective coping strategies for problem behaviors. For instance, if a person with Alzheimer’s became agitated, caregivers learned to distract them or redirect them to calmer activities. In addition, caregivers learned to size-up different behaviors and to adjust their reactions appropriately. They might, for example, learn not to become too upset if their loved one engaged in a behavior that might be annoying but not threatening, such as asking the same question over and over again. Instead, they could learn to focus their energies on situations that could be truly dangerous, as when a person with Alzheimer’s wanders.

2) Support groups. All caregivers agreed to enroll in weekly support groups four months after entering the study. These support groups allowed people to share common concerns with other caregivers and provided emotional, educational, and social support.

3) Ad hoc counseling. Caregivers and their family members were able to call the counselor for additional counseling, support and information as needed, for as long as they were enrolled in the study.

The researchers found that those caregivers who received the enhanced counseling and support rated themselves as less troubled by the problem behaviors than those who received standard care for as long as four years after enrolling in the study. In general, the longer they received the comprehensive care, the less depressed and better able to cope they became, even when the problem behaviors in those they cared for became more frequent.

The results, published in the January 2004 issue of the Journal of Gerontology, suggest that a regular program of comprehensive support and counseling can provide caregivers with effective coping strategies in caring for a loved one with Alzheimer’s disease. This and previous research also suggests that, in addition to feeling less depressed and overwhelmed, many caregivers who receive the comprehensive support program developed at NYU are able to keep their loved ones at home longer, rather than having to put them in a nursing home.

These findings make a strong case that counseling and support offers a multitude of benefits for those caring for someone with Alzheimer’s disease. Disturbing behaviors such as depression, agitation, wandering, and incontinence are all too common among those with dementia and can lead to great stress in those who care for them. As stress builds, caregivers may feel increasingly overwhelmed and feel they have no choice but to place their loved one in a nursing home. Comprehensive counseling and support, like that offered at New York University’s Silberstein Institute, seems to offer an antidote to stress by improving coping skills and restoring a sense of control.

Earlier research has demonstrated that individual and family counseling, education, support groups, and daily skills training offer many advantages for people with Alzheimer’s and those who care for them. Although comprehensive counseling did not decrease problems behaviors among those being cared for in the NYU study, it greatly limited their impact as caregivers came to feel less threatened and distressed by them.

If you are caring for someone with Alzheimer’s, help is at hand. To find out more about services in your area, search the resource locator and see more caregiving tips, in the “Continuing Care” section of www.ALZinfo.org.

By www.ALZinfo.org. Reviewed by Dr. Mary S. Mittelman, Silberstein Aging and Dementia Research Center, New York University Medical School, and Editorial Advisory Board, Fisher Center for Alzheimer’s Research Foundation. Dr. Mittelman is the author of The Alzheimer’s Health Care Handbook: How to Get the Best Medical Care for Your Relative with Alzheimer’s Disease, In and Out of the Hospital, as well as Counseling the Alzheimer’s Caregiver: A Resource for Health Care Professionals.