A telephone helpline for Alzheimer 's disease: Information,referral,and support

Abstract

Alzheimer's disease is a progressive, degenerative terminal disease. It has been the fourth leading cause of death among adults during the past decade, taking more than 100,000 lives annually. Approximately 10 percent of people age 65 and over have probable Alzheimer's disease and 47 percent of those over age 85 suffer from the disease. The National Institute of Aging predicts that there will be 14 million people with Alzheimer's disease by the year 2050.

This study examined the helpline of the Alzheimer's Association of Eastern Massachusetts. Its stated mission is to provide access to comprehensive services as well as provide support to callers who are caring for someone with dementia. How information is provided and perceived may impact upon a caller's overall satisfaction with the helpline and their consequent decision tofollow through on referrals.

Helpline staff identified callers who sought information regarding a specific family member or patient during November 1991. About 70 percent (100) of the callers consented to afollow-up telephone interview by a social work graduate student in January 1992. Approximately 63 percent of the calls regarded someone who was post diagnosis. Memory loss, confusion, and repetitive questioning were the major problem behaviors noted. The mostfrequent inquiries regarded nursing home placements, family support groups, and diagnostic referrals. Over 75 percent of the callers were not affiliated with the Alzheimer's Association or with a family support group.

While overall satisfaction with the helpline was high, callers who received follow-up information through the mail tended to report greater satisfaction. The majority (87 percent) noted they would call the helpline again as concerns arose in the future.

The study highlighted the need for professionals to be better informed about Alzheimer's disease and its impact on families. It also emphasized the lack of knowledge concerning available resources. The Alzheimer's Association through its network of helplines can provide valuable information to both informal and professional caregivers regarding the progression of the disease and its management. The Helpline should be recognized as a resource that may provide ongoing support through the duration of the disease.

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10. Silverstein NM , Bassak A , Bosco A , Colley J , Donovan P , Drake K , Kennedy K , McCornick D , Neelon E , Seelon G , Shattuck S , Zinnes A : A telephone helpline for Alzheimer's disease: Information, referral and support, Boston, MA, Simmons College, 1992