M Cody, Central Arkansas Veterans Health Care System

Objectives: With the advent of new pharmacologic agents that appear to slow the progression of AD, experts and advocacy groups such as the Alzheimer’s Association recommend early diagnosis of AD. Early diagnosis allows for the detection of potentially reversible illness, enhancement of management, proactive education, psychosocial support (including support groups), and financial and legal planning. Caregivers of persons with dementia concur that these are important issues. However, physicians do not always agree that early diagnosis is important. They find it difficult to diagnose and are reluctant to tell the patient they suspect a problem. They report that it is easier to tell a caregiver than the patient when dementia was suspected. Given this finding, we wanted to investigate what caregivers understood from the physician about the patient’s diagnosis.

Methods: In a study evaluating outcomes of care for patients with dementia, we asked, "What has the doctor told you [the caregiver] about the patient’s memory problem?" The outcomes of care study uses a cross-sectional design. Subjects (patients and caregivers) are recruited from three clinic sites, two primary care geriatric clinics (one VA and one university-based) and a specialty neurology and psychiatry practice. Inclusion criteria consist of an ICD-9 recorded diagnosis of dementia and a scheduled clinic visit at the time of recruitment. Exclusion criteria are age less than 65, nursing facility resident, no identified caregiver, or MMSE score less than 13. Data for this analysis were obtained from the caregiver in a self-report questionnaire. The question was open-ended and data were coded post-hoc.

Results: Three major categories were identified by 84 caregivers completing the questionnaire: diagnostic terms, prognosis, and lack of information. Forty caregivers (47.6%) stated that the physician told them a medical diagnosis for the memory problem. The most common was Alzheimer’s disease (23%) followed by "mini-strokes or stroke" (10.7%). Thirteen (15.4%) said the doctor used terms such as memory loss or problem, an "age" problem, or early senility. Nineteen caregivers (22.6%) reported that the doctor talked to them about the prognosis. Twelve said they were told the memory loss was progressive or would get worse with time. Three indicated they were told it was incurable or that nothing would help. Finally, eighteen (21%) stated they were told very little or nothing.

Conclusions: The majority of caregivers are being told and heard the medical cause for memory loss. However, a substantial proportion still expressed a lack of information. Few mentioned receiving specific suggestions for management of memory related problems. While sharing the diagnosis has become more common, continued efforts are needed to assist caregivers in the specifics of day-to-day management of this difficult disease.

Impact: Veterans and their caregivers need to share in the management of chronic disorders such as dementia. Sharing the diagnosis and prognosis of memory-related disorders is just the first step in engaging veterans and caregivers in ongoing management of their disease. Understanding the caregivers view can help in framing policies and programs to provide ongoing social support - one of the key elements in the VA’s mission statement.