SPOUSE CAREGIVERS ATTITUDES TOWARD OBTAINING A DIAGNOSIS OF A DEMENTING ILLNESS

OBJECTIVES: To examine attitudes of spouse caregivers about the proces s of obtaining a diagnosis of a dementing illness, including perceived benefits and obstacles to obtaining a diagnosis and suggestions for i mproving the process. DESIGN: A mail survey of spouse caregivers of de mentia patients followed by the Michigan Alzheimer's Disease Research Center. PARTICIPANTS: The 233 spouse caregivers of dementia patients w ho returned a completed questionnaire. RESULTS: More than three-fourth s of the sample rated the following benefits of obtaining a diagnosis as very or extremely important: ruling out other causes of memory or b ehavior problems, allowing family members to get information about dem entia, may qualify my spouse for drug treatment, and will allow me to plan for the future. Primary obstacles included the time required to o btain a diagnosis, the cost of procedures, lack of access to physician s trained to diagnose dementing illnesses, and not receiving a referra l from a primary care physician (41.6%, 41.0%, 40.8%, and 24.1% of the sample, respectively, agreed or strongly agreed that the factor posed a barrier to obtaining a diagnosis). Content analysis of responses to two open-ended questions identified problematic or stressful aspects of obtaining a diagnosis and suggestions for making the process easier for the patient and family. CONCLUSION: Results suggest the need to p rovide an orientation to the diagnosis and assessment process for pati ents and family members, develop a training session for physicians to better prepare them to address the emotional needs of patients and fam ilies and to disclose the diagnosis in an informative and compassionat e manner, and provide outreach education to primary care physicians to increase knowledge and awareness of dementing illnesses and to increa se referrals to community-based services and health professionals able to address the concerns of family members.