Purpose: The purpose of this White Paper is to provide a context for approaching the challenge of evaluating the capacity for consent for sexual activity by persons with dementia residing in long-term care (LTC) facilities. This area of LTC practice is still poorly understood and inadequately researched. A 2013 survey found that only 26% of 91 Kansas nursing homes had a policy on sexuality.1 Also in 2013, a survey of 175 AMDA medical directors found that only 13% said their facilities provide staff training addressing sexual behavior in the facility.23 Only 23% were certain their facility had a policy on intimacy and sexual behavior. Only 20% said their facility had a policy addressing capacity for sexual consent. The most helpful resources preferred by respondents would be a staff training manual (71%), samples of documents and forms related to sexual consent capacity and sexual behavior (63%), creation of specific policies regarding sexual behavior (57%), multimedia educational resources (56%), and online continuing education offerings (52%).
Consensus around standard of care on this issue is limited at best. There are limitations in knowing how to determine sexual consent capacity in dementia. In addition, there is irreducible ethical diversity within our society, particularly in the area of sexual values. Given the lack of a widely accepted standard to identify capacity for sexual consent, this paper is primarily descriptive of a current overview of the topic. The conclusions reached are necessarily modest, but intended to motivate further progress.
This paper begins with a brief statement of the contrasting but complementary rights at play in this dilemma. These rights point to the need for clarity on what constitutes capacity for sexual consent in dementia. Second, the perspective of the American Psychological Association and American Bar Association is reviewed from their joint work on a monograph devoted to formal assessment of older adults with diminished capacity, including capacity for sexual consent. The third section reviews the research literature on perspectives of other disciplines involved more directly in the care of older adults with dementia and sexual expression. Fourth, the literature on family perspectives is sampled. Fifth, examples of proposals for LTC policy formation are examined. Sixth, three sample cases are discussed, followed by concluding remarks. The focus of this paper is on ethical, clinical and administrative aspects of this issue. Legal standards vary from state to state and should be consulted for particular LTC settings before policies are enacted.
Introduced On: March 2016