Care challenges related to lack of awareness in people with dementia.

Introduction: Person-centered care can be difficult to provide where people with dementia lack awareness of dementia-related changes. They may appear reluctant to discuss changes or unable to recognize care needs. Lack of awareness can contribute to worse outcomes for people with dementia and caregivers. However, little is known about how to manage care challenges arising from lack of awareness. Methods: Stakeholder perspectives were sought about experiences around lack of awareness in people with dementia living at home. Discussion groups informed content of an online survey for informal caregivers, clinicians and homecare professionals. Additional information came from secondary analysis of interviews with people with dementia. Data were analyzed descriptively, with content analysis used to categorize qualitative information. Results: The survey was completed by 54 people involved in dementia care. Most had encountered lack of awareness, with 75% encountering it often or extremely often. Lack of awareness led to delays in referrals, diagnosis and starting care packages, with disagreements commonly experienced, both at home and in clinical settings. There were concerns about safety and safeguarding, and in some cases complete breakdown of care at home. Management involved a flexible and patient approach, avoiding confrontation where possible. Interview transcripts from people with dementia demonstrated how awareness affects strategies used and thinking about the future. Discussion: The consultation highlighted the importance of this topic and implications for care provision. More information for the general public and educational resources for informal caregivers and professionals would improve understanding of awareness issues and sharing of effective strategies.