Dementia care is a growing concern as our population ages and more people live longer with Alzheimer’s and other forms of dementia, particularly in nursing homes. The widespread, inappropriate use of antipsychotic drugs on people with dementia compounds these concerns. Close to 20% of nursing home residents are given powerful and dangerous antipsychotics, despite a “Black-Box” warning that they are associated with increased risk of death in the elderly. Importantly, these drugs are not clinically indicated for “dementia-related psychosis.”

This toolkit was developed to help residents, families and those who work with them meet and overcome the challenges to accessing good care and life with dignity. Each of the following fact sheets and resources provide information that can be used to support resident-centered advocacy for better care.

The toolkit is the product of a two-year project, supported by a generous grant from The Fan Fox & Leslie R. Samuels Foundation, in which we worked with family councils and LTC ombudsmen to provide education and engagement on some of the issues most relevant to good dementia care and the reduction of inappropriate and dangerous antipsychotic drugging. We thank the Foundation and the residents, families and ombudsmen with whom we worked for making this Toolkit possible.