A Seat at the Table: Supporting Persons with Severe Dementia in Communicating Their Preferences

ABSTRACT

Objective: Persons with severe dementia are less likely to have a role in preference assessment due to communication challenges associated with the disease. Research is limited on how to support preference communication while using existing preference assessment tools (e.g., the Minimum Data Set 3.0).

Methods: This study examined the effect of two assessment conditions (standard verbal; visual-and-text supported;) on residents’ (N = 21) social and leisure preference consistency over 1-week and utterance types (acknowledgment, elaboration, off-topic, request for clarification) in response to preference questions. Residents with severe dementia were recruited from four nursing homes (n = 11) and three assisted living facilities (n = 10). As a preliminary measure of provider acceptability and social validity, a sample of 10 naïve judges (University students) listened to the interviews and rated residents’ communication clarity and their confidence with understanding residents’ preferences.

Results: Neither assessment condition promoted significantly greater levels of consistency (i.e., the same preference rating at Time 1 and Time 2). Residents expressed significantly fewer requests for clarification in the visual-and-text supported condition. Naïve judges rated residents’ communication positively, with no significant differences between conditions.

Conclusions: This study addresses a gap in current research and holds important implications for enhancing care planning participation by residents with severe dementia.

Clinical Implications: Residents with severe dementia can successfully participate in activity preference discussions without proxy participation. Residents may comprehend interview questions better when provided in a supported format.

KEYWORDS:

• Dementia
• aging
• long-term care
• nursing home
• assisted living facility

Acknowledgments

We would like to thank R. Michael Barker, Harleah Buck, Ph.D., Howard Goldstein, Ph.D., and Kathryn Hyer, Ph.D. for the time, expertise, and resources they dedicated to this project. We would also like to thank the administrators, staff, families, residents and students who participated in this project.

Disclosure statement

The authors of this publication have no relevant conflicts of interests to declare.

Supplementary material

Supplemental data for this article can be accessed on the publisher’s website.