Our research shows that loss of initiative is one of the most distressing parts of Alzheimer's disease for families. It can also be distressing to patients, but commonly those who lose initiative also lose the insight that their initiative is less. Most of the burden is borne by families who see that the person that they care for now "just sits around" and is no longer "engaged" or "switched on." Importantly, recovery of initiative is one of the changes caused by drug treatments that families appreciate the most. Unfortunately, this important treatment response is often not captured by the standard ways we test drugs, which is why we are targeting it here - to give people a voice in how the drugs work.
This issue is described in more detail in two papers in the International Journal of Geriatric Psychiatry:
Rockwood K et al., Potential treatment effects of donepezil not detected in Alzheimer's disease clinical trials : a physician survey. Int J Geriatr Psychiatry. 2004 Oct;19(10):954-60
Rockwood K, Joffres C. Improving clinical descriptions to understand the effects of dementia treatment: consensus recommendations. Int J Geriatr Psychiatry. 2002 Nov;17(11):1006-11.