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Keywords:

  • Alzheimer's disease;
  • primary care physicians;
  • caregivers;
  • dementia;
  • diagnosis;
  • disclosure

OBJECTIVES: To examine potential benefits of and barriers to diagnosis from the perspective of black and white adults directly affected by Alzheimer's disease (AD).

DESIGN: Telephone survey.

SETTING: Convenience sample recruited from two U.S. metropolitan areas.

PARTICIPANTS: One hundred seventy-eight family members of people with AD, including current and former AD caregivers and immediate blood relatives of someone with AD.

MEASUREMENTS: Respondents were asked to rate the importance of eight benefits of and 16 barriers to obtaining a diagnosis.

RESULTS: Family members strongly endorse several benefits of obtaining a diagnosis, including getting information, finding out what is wrong with their relative, and prompting future planning. A majority of survey respondents did not endorse any barriers examined. Lack of a cure for AD and the belief that little can be done for someone with AD were the most frequently endorsed barriers. Black respondents endorsed five of the eight benefits more frequently than white respondents.

CONCLUSION: Black and white adults with a family member who has received an diagnosis of AD perceive a range of benefits and few barriers to the diagnostic process examined in this study. Their positive experiences might be instructive to families considering pursuing a diagnosis and to physicians who may be reluctant to offer screening or referral because of the belief that families have little to gain.