Patients with dementia and their caregivers 3 years after diagnosis. A longitudinal study
G. O. Williams, C. L. Gjerde, S. Haugland, D. Darnold, L. J. Simonton and P. J. Woodward
Department of Family Practice, University of Iowa, Iowa City, USA.
OBJECTIVES: 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. DESIGN: Single cohort. Surveys were mailed at time 1 and
respondents were followed up after 3 years (time 2). SETTING: Midwestern
hospital dementia assessment clinic with a family physician director.
Continuing care was by community physicians. SUBJECTS: Thirty elderly
patients with dementia who were evaluated at the dementia clinic. Data were
provided by their caregivers. RESULTS: 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. CONCLUSIONS: 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.
