Understanding the world of dementia. How do people with dementia experience the world?

There is growing awareness that the subjective experience of people with dementia is important for understanding behavior and improving quality of life. This paper reviews and reflects on the currently available theories on subjective experience in dementia and it explores the possibility of a knowledge gap on the influence of neurological deficits on experience in late stage dementia.

A literature review on current commonly used theories on experience in dementia was supplemented with a systematic review in PubMed and Psychinfo. For the systematic review, the terms used were Perception and Dementia and Behavior; and Awareness and Dementia and Long term care.

Current models emphasize the psychosocial factors that influence subjective experience, but the consequences of neurological deficits are not elaborated upon. The systematic literature search on the neuropsychological functioning in dementia resulted in 631 papers, of which 94 were selected for review. The current knowledge is limited to the early stages of Alzheimer's disease. Next to memory impairments, perception of the direct environment, interpretation of the environment, and inhibition of own responses to the environment seem to be altered in people with dementia.

Without knowledge on how perception, interpretation and the ability for response control are altered, the behavior of people with dementia can easily be misinterpreted. Research into neuropsychological functioning of people in more severe stages and different forms of dementia is needed to be able to develop a model that is truly biopsychosocial. The proposed model can be used in such research as a starting point for developing tests and theories.