The Caregiver Role In Managing Ad

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The efficient diagnosis and successful management of AD depends on identifying a caregiver. Typically, family members and friends take on some part of the role and self-identify at the time of the initial presentation by providing a history of the cognitive problem. At this early stage, it is important to establish permission to speak openly with the caregiver to acknowledge and reinforce the notion that the caregiver is the advocate for the patient. Caregivers may be spouses of affected individuals; however, in many instances, they are other family members or friends. Because AD is a long, progressive illness, many may be unprepared for the difficulties associated with caring for the demented patient. In addition, because many caregivers maintain and implement interventions for patients, their health status can become the concern of the patient's doctor (Lucero, Pearson, Hutchinson, Leger-Krall, & Rinalducci, 2001). Caregiver burden can be described in emotional, physical, and social terms. Help for caregivers may be offered in a variety of ways, including offering education and training, caregiver support groups, and counseling. Providing information and education serve to decrease depression and caregiver burden and increase coping skills (Hepburn, Tornatore, Center, & Ostwald, 2001; Logsdon, McCurry, Moore, & Teri, 1997). Mittelman et al. (1993) reported that when care-givers and their families were offered a comprehensive intervention, including family counseling sessions and caregiver support groups tailored for individualized needs, time to nursing home placement was significantly postponed or reduced as compared to caregivers in a control group. Counseling sessions should attempt to provide education and information to family members for the behavioral symptoms present in AD patients and emphasize skills and techniques that may be used in the home. Increasing communication and understanding between family members and the care-giver may alleviate family conflicts. Providing increased support is a way of mitigating the emotional burden of caregivers and families and can help reduce stress and depression in caregivers (Mittelman et al., 1995).

The Alzheimer's Association is a national organization that offers education, support, and information to caregivers and patients. Many states have local chapters, which offer a variety of information and services to families. Brochures are available on AD diagnosis and treatment, and services available include caregiver support groups, early stage patient support groups,

Table 2.4 Internet Resources for Alzheimer's Disease Information

Name

Web Site

Description

National Alzheimer's Association

www.alz.org

Information about AD for care-givers and professionals.

Alzheimer's Disease Education and Referral Service

www.alzheimers.org

NIA Site—Information about AD and related disorders.

ElderCare Online

www.ec-online.net

Caregiver support and information.

Alzheimer's Disease Centers

www.alzheimers.org/pubs /adcdir.html

Directory of U.S. AD Centers.

Ageless Design

www.agelessdesign.com

Caregiver support and information.

Children of Aging Parents

www.caps4caregivers.org

Caregiver support and information.

National Alliance for Caregiving

www.Caregiving.org

Caregiver support and information.

National Hispanic Council on Aging

www.nhcoa.org

A variety of information and support for the Latino/ Latina community.

workshops, and educational meetings. Workshops and educational meetings are available on topics such as understanding and coping with stress, Medicaid services, legal /financial issues, anticipatory grief, and end-of-life issues. The Alzheimer's Association offers a service called ASafe [email protected], a national identification registry that assists in locating missing AD patients. With the ever-growing number of individuals who have access to computers and the World Wide Web, a number of Internet sites provide information and support to caregivers. Resources available through the Internet include listserve support groups, access to information in English and Spanish, and information for ethnic minorities. A full range of materials, which includes aspects of diagnosis, treatment, and clinical trials, is available. Select local and national sites that provide helpful resources are listed in Table 2.4.

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