A patient’s experience in dementia care

Objective To give FPs an understanding of the “lived experience” of dementia via the words of a person with dementia (PWD)— Faye Forbes, a 64-year-old Anglican priest with Alzheimer disease who provides her perspectives on living with dementia—and to use these thoughts to improve care and outcomes.

Sources of information Ovid MEDLINE was searched from January 2005 to February 2015 using subject headings for dementia, caregiver, perspectives, and quality of health care. Articles geared toward FPs were selected. Relevant review articles and original research articles were used when appropriate and if they were applicable to PWDs and their caregivers.

Main message There are several frameworks that organize the main experiences described by patients and caregivers. We used a review of the qualitative literature to provide the framework to summarize Faye’s experience under the following headings: seeking a diagnosis, accessing supports and services, information needs, disease management, and communication and attitudes.

Conclusion Physicians should consider these themes when developing a management plan for PWDs. Trying to understand the experiences and perspectives of PWDs and their caregivers is important in providing optimal care.