Patients with dementia and their caregivers 3 years after diagnosis. A longitudinal study

To document caregivers' perceptions of the deterioration in functional ability of persons with dementia over time, to identify the most problematic behavior for caregivers at two stages of dementing illness, and to compare the perceived informational needs of caregivers at diagnosis and 3 years later.

Single cohort. Surveys were mailed at time 1 and respondents were followed up after 3 years (time 2).

Midwestern hospital dementia assessment clinic with a family physician director. Continuing care was by community physicians.

Thirty elderly patients with dementia who were evaluated at the dementia clinic. Data were provided by their caregivers.

Patients' scores on the Activities of Daily Living section of the questionnaire declined (bathe self, P = .03; transfer from bed or chair, P = .03; and groom self, P = .06). Significant deterioration in behaviors over time was found in incontinence (P = .04). Fewer patients were depressed at time 2 (P = .02). The patient behaviors found most troublesome at time 1 were worrying about memory loss, losing or hiding things, feeling blue, experiencing restlessness, having difficulty calculating, experiencing a lack of interest, and having false ideas. At time 2, the greatest problems were having a short attention span, failing to recognize persons or things, experiencing a lack of interest, experiencing restlessness, repeating himself or herself, forgetting where he or she is, speaking incoherently, and being incontinent. Questions caregivers most wanted answered at time 1 concerned possible treatment, the future course of illness, and the cause of the symptoms. At time 2, the concerns were the future course of illness, possible treatment, and disease inheritance. There was significantly more interest in family agreement about care (P = .004) and the need for legal guardianship (P = .001) at time 2.

Caregivers' perceptions of the most frequent and troublesome behaviors of patients with dementia were documented at different stages of the disease. The importance caregivers attached to their requests for information reflected changing but continuing needs for reassurance about the patient's diagnosis and treatment and for help with the psychosocial consequences of dementia. Physicians must be aware of caregivers' needs at different stages of the disease process and be equipped to help them appropriately.