Spouse caregivers' attitudes toward obtaining a diagnosis of a dementing illness

Abstract

Objectives: To examine attitudes of spouse caregivers about the process of obtaining a diagnosis of a dementing illness, including perceived benefits and obstacles to obtaining a diagnosis and suggestions for improving the process.

Design: A mail survey of spouse caregivers of dementia patients followed by the Michigan Alzheimer's Disease Research Center.

Participants: The 233 spouse caregivers of dementia patients who returned a completed questionnaire.

Results: More than three-fourths of the sample rated the following benefits of obtaining a diagnosis as very or extremely important: ruling out other causes of memory or behavior problems, allowing family members to get information about dementia, may qualify my spouse for drug treatment, and will allow me to plan for the future. Primary obstacles included the time required to obtain a diagnosis, the cost of procedures, lack of access to physicians trained to diagnose dementing illnesses, and not receiving a referral 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 provide an orientation to the diagnosis and assessment process for patients and family members, develop a training session for physicians to better prepare them to address the emotional needs of patients and families and to disclose the diagnosis in an informative and compassionate manner, and provide outreach education to primary care physicians to increase knowledge and awareness of dementing illnesses and to increase referrals to community-based services and health professionals able to address the concerns of family members.