Views of people living with dementia and their families/care partners: helpful and unhelpful responses to behavioral changes

Objectives: This study investigated the views of people living with dementia and their families/care partners on (i) what they find helpful or unhelpful regarding behavioral changes, i.e. which coping strategies they used for themselves and/or which responses from others, and (ii) what they consider to be appropriate terminology to describe behavioral changes. Design & setting: One-on-one semi-structured interviews were conducted with people living with dementia and families/care partners face to face, online, or over the telephone. Measurements: Data from open-ended questions were analyzed inductively. Common themes were derived from the data using an iterative approach. Results: Twenty-one people living with dementia and 20 family members/care partners were interviewed. Four main themes were derived for helpful responses, and three main themes for unhelpful responses. Helpful responses included providing clear professional support pathways and supportive environments where people living with dementia can engage in physical, cognitive, social, and spiritual activities. Unhelpful responses included discriminatory treatment from others and use of medicalized terminology. Views toward terminology varied; people with lived experience most favored using "changed behaviors" over other terminology. Areas for improvement included targeting dementia stigma, societal education on dementia, and building confidence in people living with dementia by focusing on living well with dementia. Conclusion: Knowledge of the views of people living with dementia may assist healthcare professionals to provide more appropriate care for people living with dementia.