Background: Decreased initiation of activities is a common symptom in Alzheimer's disease (AD) and creates significant burden for carers, yet little is known about how patients, carers and treating physicians describe this problem.
Methods: This is a secondary, qualitative analysis of video-recorded, semi-structured and open-ended interviews with the 130 community-dwelling patients with mild-to-moderate AD from the Video-Imaging Synthesis of Treating Alzheimer's Disease (VISTA) study – a four-month, randomized, placebo-controlled trial of galantamine. Interviews were coded and organized using Atlas.ti. By applying a framework analysis approach, patient/carer descriptions of dementia-related decreased initiation of usual tasks and activities were categorized and summarized.
Results: Decreased initiation of instrumental activities of daily living (IADLs) and/or leisure and social activities was reported in 85/130 patients at baseline, 71 (84%) of whom specifically targeted increased initiation as a goal of treatment. The most common manifestations of decreased initiation were initiating only with prompting (55%), and no longer initiating but willing to engage in the activity (42%; note that these groups can overlap). Many patients were also described as having less interest (44%) or impaired performance (34%) in the activity in which decreased initiation was noted. Coping strategies were employed by 69/85 carers, most commonly verbal prompts to begin an activity.
Conclusion: Decreased initiation is a common and problematic symptom in people with mild-to-moderate Alzheimer's disease who seek treatment for dementia. Information offered voluntarily about interest in or ability to perform activities which are initiated less often gives additional data compared with routine questioning about initiation of function. This is a potentially rich area for the elucidation of disease and treatment effects.