This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Interactive Journal of Medical Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.i-jmr.org/, as well as this copyright and license information must be included.
This review focused on how sexual consent ability was determined, managed, and enhanced in people with cognitive disabilities, with the aim of better understanding the recurring themes influencing the design and implementation of these approaches. If a person’s consensual ability becomes compromised, owing to either an early or late-onset cognitive disability, the formal systems involved must establish plans to balance the individual’s rights and restrictions on sexual expression. This review identified these plans, focusing on how they promoted the intimacy rights of the individual.
This study aims to identify approaches that determine sexual consent ability in people with cognitive disabilities, identify the means of managing and enhancing sexual consent ability in people with cognitive disabilities, and note the recurring themes that influence how these approaches and management systems are designed and implemented.
A systematic literature review was performed using EBSCOhost (Social Gerontology, CINAHL Plus, MEDLINE, and SocINDEX), Embase, PsyInfo, and Scopus to locate reports on terms expanded on sexual consent and cognitive disability.
In all, 47 articles were identified, featuring assessment practices, legal case studies, and clinical standards for managing sexual consent capacity in people with cognitive disabilities. A total of 8 studies (5/8, 63% qualitative and 3/8, 38% quantitative) were included out of the 47 articles identified. Approaches for determining sexual consent included functional capacity and person-centered, integrated, and contextual approaches. Management of sexual consent ability included education, attitude, and advanced directives and support networks. The recurring themes that influenced these approaches included the 3 legal criteria of consent, American Bar Association and American Psychological Association Model, Lichtenberg and Strzepek Instrument, Ames and Samowitz Instrument, Lyden approach, Mental Capacity Act of 2005, and Vancouver Coastal Health Authority of 2009.
Determining sexual consent takes a holistic approach, with individuals judged in terms of their adaptive abilities, capacities, and human rights. The attitudes of those using this holistic approach need to be balanced; otherwise, the sexual rights of assessed people could be moved either in favor or against them. The ideal outcome, after person-centered considerations of those living with cognitive disabilities includes the people themselves being involved in the process of personalizing these approaches used to facilitate healthy intimate relationships.
Cognitive disabilities are defined as long-term mental impairments, including those of intellectual and developmental order. The terms
Sexuality is a holistic concept encompassing sex, gender identity, orientation, eroticism, intimacy, and reproduction [
In the United States, the legal definition of consent is rooted in the 3 legal criteria of consent as reported by Stavis [
Knowledge—recognition of the other person in the relationship, including who, what, where, and when and safety aspects of the sexual activity in question, such as the ability to identify body parts.
Intelligence—also known as rationality or understanding, which includes awareness of potential risks (pros and cons) of sexual engagement, appropriateness, consequences, correct familiarity of partner identity, and the ability to discriminate among fantasy, reality, lies, and truth.
Voluntariness—decisional capability to engage or refrain from sexual activity and the ability to take self-protective measures against abuse and exploitation or other unwanted advances. This includes the ability to say “no,” either verbally or nonverbally and the ability to remove oneself from the situation when either they or their partner indicates stopping sexual behavior.
These 3 legal criteria of consent are quite controversial, because thresholds vary from basic to complex levels of acceptability, depending on differences in state laws [
The capability of people to satisfy sexual consent criteria is often determined by either medical professionals or neuropsychological experts in the judicial system. Common paradoxes have emerged, owing to the philosophical arguments surrounding people’s ability to give consent. These paradoxes include whether people can demonstrate rudimentary versus contextual understanding of the sexual relationship [
Rudimentary requirements that check for consent capacity may fail to understand the contextual reason to
Complex knowledge of consent may have assessments and protocols that are too difficult for even the general population to pass [
The
Assessments of consent capacity often place the burden of proof on the person with a cognitive disability rather than putting the onus on others to prove otherwise. Having individuals provide predetermined comfort with various levels of intimacy carries an unfair standard, because even the general population may not know what levels of intimacy they are comfortable with before engaging in such behaviors [
There is no clear definition, criteria, or standard for determining a person’s sexual consent capacity [
In the late 1960s, the United States Supreme Court declared constitutional rights for people with cognitive disabilities, who were cared for under the powers of the state governments. These constitutional rights were created to protect vulnerable people from harm related to sexual exploitation and abuse, while also upholding their rights to sexual expression. These rights include several categories, including those related to family matters [
Sexual abuse occurs when one person forcefully or covertly performs nonconsensual sexual acts, including touching, kissing, oral sex, and anal or vaginal intercourse [
People with cognitive disabilities have a greater risk of being sexually abused [
Most of the perpetrators were men.
A percentage (n=66) of the perpetrators had a cognitive disability.
In all, 24% (n=28) of the perpetrators were relatives.
In all, 9% (n=11) of the perpetrators were agency staff members.
In all, 8% (n=9) of the perpetrators were familiar people.
The remaining perpetrators were either volunteers, strangers, or unknown.
The
Hypersexual—
Asexual—
Deviant—in the last 20 years of research on the well-being of people who are lesbian, gay, bisexual, transgender, or queer (LGBTQ), there is evidence of victimization among such sexual and gender minorities in both youth and adults [
The moral aesthetic to control how people with cognitive disabilities express their sexuality are bound to clinical, ethical, and legal issues [
Social acceptability struggles to find a balance between sexual acts that are safe versus unsafe, normal versus deviant, and legal versus illegal and what role sexual functioning has in the first place [
Clinical policies in a LTC facility could be undeveloped or inconsistent with those living with cognitive disabilities and their sexual expression, resulting in the facility facing repercussions if sexual expression is allowed to continue [
Sterilization is the process of inhibiting a person’s reproductive ability. It inflicts physical and moral injuries to those who do not consent to it [
The justification for sterilization was often influenced by the eugenics movement, which believed that
There have been major changes in legislation regarding the practice of nontherapeutic sterilization [
There are psychological and physical benefits of safe sexual expression. Improved self-esteem, cognitive functioning, social relationships, mood, and feelings of independence have been reported as potential benefits [
This review aims to uncover the used approaches of clinical, legal, and residential systems to determine and manage the sexual consent abilities of people with cognitive disabilities. Recurring themes influencing the shape of these approaches were also identified. Specific audiences for this review include human ecologists, sexuality experts and therapists, forensic neuropsychologists, occupational therapists, sexual educators, health care professionals, service providers, and caregivers.
The objectives of this review are as follows:
Identify approaches used to determine sexual consent ability in people with cognitive disabilities.
Identify means of managing and enhancing sexual consent ability in people with cognitive disabilities.
Note the recurring themes affecting how such approaches and management systems are designed and implemented.
This report presents a systematic review of the literature, based on consultation with human ecology and rehabilitation medicine experts, to create the following research question: What are the approaches for determining, managing, and improving sexual consent ability in people with cognitive disabilities?
After discussing the research question with a university librarian, the following bibliographic databases were searched: EBSCOhost (abstracts in Social Gerontology, CINAHL Plus, MEDLINE, and SocINDEX), Embase, PsyInfo, and Scopus. The search strategy included a combination of subject headings and keywords to combine the concepts of consent in sexuality and cognitive disability.
A total of 2 researchers performed the screening process for each article (BJC and recruited researcher, Lyndsay Pinder). Differences among the researchers in terms of accepted and rejected articles were resolved through discussion. All articles indicating topics of sexuality and consent within their titles or abstracts were reserved to complete the first pass of the search process (BJC and Lyndsay Pinder). For the second pass, all reserved reports from the first pass had their full texts screened to confirm the context of the subject (BJC, SE, and Lyndsay Pinder). The methodological quality of the reports featuring experimentation was not formally assessed. There were no data limits.
Article stated a topic, discussion, or approach to determine the consent capacity of people with cognitive disabilities.
All articles featuring qualitative, quantitative, legal, descriptive, and review reports were accepted.
Reports were accepted in all languages and in article, dissertation thesis, review, or book format.
Topic was about physical disability or did not indicate a potential compromise in a person’s consensual ability.
The article briefly mentioned
consent to sexuality
or a similar phrase; however, further details were not provided.
Conference papers, public opinions and non–peer-reviewed articles.
([sex* or intima*] adj10 [consent or consensual]) AND ([(intellectual* or mental* or cognitive*) adj4 (impair* or disab* or deficit*)] or long term care or longterm-care or nursing home* or alzheimer* or dementia or autis* or Down* Syndrome).
These terms were entered into the databases mapped to the following fields: title, abstract, subject heading word, and keyword heading word.
The search resulted in 439 articles being identified, of which 2 (0.5%) articles were recommended for inclusion in the peer-review process [
PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram of search results [
The 47 reports included in this review featured assessment practices, legal case studies, and clinical standards for managing sexual consent capacity in people with cognitive disabilities. Most reports were in the form of expert opinions (36/47, 77%). There were 8 studies (5/8, 63% qualitative and 3/8, 38% quantitative) included in this study. The qualitative studies included the following:
A survey with vignettes to check the ability of residential facility staff to properly identify safe or unsafe sexual behaviors (nonconsensual sexual behavior) in people with cognitive disabilities and respond accordingly [
A survey of members of the American Psychological Association to determine which criteria were considered the most important when determining sexual consent capacity in people with cognitive disabilities [
A survey to determine factors that increase the risk of SDMs to decide an
Semistructured interviews in residential mental health treatment facilities to determine what conceptualizes consent to sexual expression from the point of view of administrators, clinical staff, and former clients [
Semistructured interviews with directors of nursing to identify challenges in managing sexual expression [
Quantitative studies focused on educational interventions for the improvement of sexual consent ability in people with cognitive disabilities [
Themes affecting the approaches for determining sexual consent capacity in people with cognitive disabilities.
Theme | Key components | References |
Lichtenberg and Strzepek Instrument | Interdisciplinary characteristics. Client is assessed (MMSEa), followed by a same-sex interview to determine these three main criteria: Awareness of the relationship—patient aware of intent, partner identity, and intimacy comfort level. Ability to avoid exploitation—patient behavior consistent with former beliefs and able to say no. Awareness of potential risks—consequences of relationship and awareness of relationship duration. Interview relayed to interdisciplinary team (nurses, occupational therapists, psychiatrists, etc). |
[ |
3 legal criteria of consent | Legal characteristics; client is required to demonstrate ability in the following: Knowledge—basic recognition of the other person, relationship, and sexual activity in question. Intelligence—(rationality and understanding) aware of potential risks in the sexual relationship. Voluntariness—ability to resist or stop the sexual activity and identify willingness to continue. |
[ |
Ames and Samowitz instrument | Legal and clinical characteristics based on 3 legal criteria of consent; has 2 categories, A and B; consent determined by communication and behavior. Category B determines client consent ability based on their behavior showing the following: Voluntariness. Safety and avoidance of harm. No exploitation. No abuse. Ability to say no. Socially appropriate time and place. |
[ |
Mental Capacity Act 2005 | Legal characteristics; based in England and Wales; section 1 of the Act assumes the people have capacity to consent unless proven otherwise; knowledge and resources to aid the person’s decisions are encouraged; Includes rules for SDMsb. Is there understanding of the decision that needs to be made and why? Does the individual understand the probable consequences when making the decision? Is the individual capable of understanding, remembering, deliberating, and using information that pertains to the decision? Is the individual able to communicate his or her decision in any way? |
[ |
Lyden approach | Legal and clinical characteristics; endorses the 3 legal criteria of consent; encourages person-centered and integrated approaches; has important points for individualizing the assessment process, especially for communication. Review the relevant records (including info on reproductive ability and other disabilities). Create discussions, including those who know or work with the person being assessed. Conduct a personal interview to determine knowledge and voluntariness, supplemented with a mental status evaluation. |
[ |
ABA/APAc model | Legal and clinical characteristics; based on 3 legal criteria of consent, Lyden approach and Lichtenberg and Strzepek Instrument; expands on above models to include steps on how to enhance consent capacity and form comprehensive neuropsychological testing components; recommends LTCd facilities to develop policies and procedures for sexual relations that are consistent with state statutes. | [ |
Vancouver Coastal Health Authority 2009 | Clinical characteristics; downloadable manual. Provides recommendations for homecare staff and nurses such as the following: Respect the rights of persons with the capacity to consent to sexual activity. Do not reveal confidential specifics about the person’s sexual activity to those not directly involved in their care (including family members), without the person’s expressed consent, if the person has capacity. Remember that people who do not have capacity to consent to sex are still sexual beings with intimacy needs. Remember that not every person is heterosexual. Address one’s own attitudes and behavior toward older adults and general sexuality. |
[ |
aMMSE: Mini-Mental State Exam.
bSDM: substitute decision maker.
cABA/APA: American Bar Association and American Psychological Association.
dLTC: long-term care.
The approaches used to determine and manage sexual consent abilities for people with cognitive disabilities.
Approach, type, and details | References | ||||
|
|||||
|
|
||||
|
|
|
|||
|
|
|
[ |
||
|
|||||
|
|
||||
|
|
|
|||
|
|
|
I-teama discussion, client assessments, enforcing client rights and education. | [ |
|
|
|
|
Reduce |
[ |
|
|
|
|
|||
|
|
|
I-team, person-centered, interval checkups, and review policy with SDM. | [ |
|
|
|
|
I-team, person-centered, emphasis on client limits and their context. | [ |
|
|
|
|
|||
|
|
|
Client screening process, semistructured interview, and I-Team discussion. | [ |
|
|
|||||
|
|
||||
|
|
|
|||
|
|
|
Holistic case-by-case, based on needs and policy, and client and staff education. | [ |
|
|
|
|
|||
|
|
|
The 4 Ps: prioritize people, practice effectively, preserve safety, and promote trust. | [ |
|
|
|
|
Committee approach—staff, family, friends, residents, and client discussion. | [ |
|
|
|||||
|
|
||||
|
|
|
|||
|
|
|
Teach awareness of normal sex behavior to both clients and staff. | [ |
|
|
|
|
Client education checked by SCEAc, VABSd, or IQ tests. | [ |
|
|
|
|
|||
|
|
|
Consult certified sexuality educators or experts such as AASECTe or OWLf. | [ |
|
|
|
|
Increase client sex-related knowledge, based on 3 legal criteria of consent. | [ |
|
|
|
|
|||
|
|
|
Training for professionals and LGBTQg toolkits (info packages) for them. | [ |
|
|
|||||
|
|
||||
|
|
|
|||
|
|
|
Policy feminist disability theory, consent culture, and rely less on assessment. | [ |
|
|
|
|
Positive liberty, client proactive education, and attention to LGBTQ issues. | [ |
|
|
|
|
Social reframing. Recognize ability without facilitating pity. | [ |
|
|
|
|
|||
|
|
|
Request and consult national resources to train teams for clientele. | [ |
|
|
|
|
|||
|
|
|
Psychological, social, and facility improvements over drugs. Staff education. | [ |
|
|
|||||
|
|
||||
|
|
|
|||
|
|
|
Consent-Plus with committee input, MMSEh (or similar), and interviews. | [ |
|
|
|
|
|||
|
|
|
SSASi assessment, based on the 3 legal criteria of consent. | [ |
|
|
|
|
Focus on client act-specific action (not partner choice) based on MCA 2005j. | [ |
|
|
|
|
Adaptive capacity—correlate client’s other abilities to sexual consent. | [ |
|
|
|
|
Sex consent requires basic, consequential knowledge. | [ |
|
|
|
|
|||
|
|
|
Assessments (MMSE and IQ), coupled with witness statements and context. | [ |
|
|
|
|
|||
|
|
|
Communicate situational and internal understanding. | [ |
|
|
|||||
|
|
||||
|
|
|
|||
|
|
|
Cognition-plus. Determines consent, managed with family, staff, and SDM. | [ |
|
|
|||||
|
|
||||
|
|
|
|||
|
|
|
Consent assessment is kept the same among people and based on context. | [ |
aI-Team: interdisciplinary team.
bSDM: substitute decision maker.
cSCEA: Sexual Consent and Education Assessment.
dVABS: Vineland Adaptive Behavior Scale (Interview Edition).
eAASECT: American Association of Sexuality Educators, Counselors, and Therapists.
fOWL: Our Whole Lives.
gLGBTQ: lesbian, gay, bisexual, transgender, transsexual, and queer.
hMMSE: Mini-Mental State Exam.
iSSAS: Social Sexual Awareness Scale.
jMCA 2005: Mental Capacity Act, 2005.
Studies on sexual consent and education for people with cognitive disabilities.
Study type | Approach | Aim | Key findings | References |
Qualitative | Integrated | Interview facility staff and residents to determine factors that increase risk of SDMsa deciding |
Wording of legislation, lack of resources for SDMs and relational dynamics between them and staff increase risks of |
[ |
Qualitative | Attitude and education | Semistructured interview needs assessment of directors of nursing to identify challenges to sexual expression management in LTCb setting. | Directors of nursing requested sexual expression to be addressed in a top-down manner, with national organizations’ support in resources and training. | [ |
Qualitative | Functional capacity | Interview facility staff and residents to determine key components of sexual consent. | Three key themes participants defined for consent: communication—includes all involved in sexual relationship either verbal or nonverbal, situational understanding—includes ability for all involved to interpret assent of partners, and internal understanding—includes personal understanding of desire for sexual relationship. | [ |
Qualitative | Education and attitude | Survey with vignettes to check residential staff ability to properly identify safe or unsafe sexual behaviors and respond accordingly. | Staff could generally identify the difference between abusive and safe sexual behavior. Increased age of staff correlated with less accuracy in identifying safe or unsafe behavior. | [ |
Qualitative | Functional capacity | Survey of APAc to determine important criteria to determine key components of sexual consent. | Key themes defined for consent: basic sexual knowledge, knowledge of the consequences of sexual behavior, and aptitudes related to self-protection. | [ |
Quantitative | Education | Education intervention— |
SCEAd scale showed improved scores after education. Retention showed only slight decay after 6-month follow-up. | [ |
Quantitative | Education and functional capacity | Functional approach cohort study compared sexual consent ability of people living with cognitive disabilities to presumed normal people. | Some people with cognitive disabilities scored high on all measures, including the Sex-Ken-IDe. Recommended ongoing education instead of single inoculation model. | [ |
Quantitative | Functional capacity | Cross-sectional validity measure used SCEA to compare neuropsychological tests with IQ, adaptive behavioral age, and sex education on consent ability. | Neuropsychological test battery, especially those measuring executive measures, were found to be more accurate in predicting competency than IQ, adaptive behavior age, and sex education. | [ |
aSDM: substitute decision maker.
bLTC: long-term care.
cAPA: American Psychological Association.
dSCEA: Sexual Consent and Education Assessment.
eSex-Ken-ID: Sex Knowledge, Experience, and Needs Scale for People with Intellectual Disabilities.
Most reports (n
With the 3 legal criteria of consent being based in the United States, some international reports described the Mental Capacity Act of 2005 as their main approach (n=4). The Mental Capacity Act of 2005 uses rules reminiscent of the 3 legal criteria of consent and contains the prefix assumption that a person has the default capacity to consent unless proven otherwise. The Mental Capacity Act of 2005 also contains prefix rules to ensure that knowledge and resources are available for assisting a person to make a consensual decision. Some reports introduced white papers and guides for assisting adult sexual health in LTC facilities (n=2), the most recommended guide being from the Vancouver Coastal Health Authority 2009. This guide provides important reminders to nurses and homecare staff regarding the rights of people under their care, while also recommending support to healthy sexual behavior by providing the means to do so (eg, provision of private spaces to reduce public sexual activity) [
Approaches endorsing the use of functional capacity have shifted away from diagnostic-based assessments (eg, IQ and mental age scores) of decision-making ability to alternative identifiers. There was an overall emphasis in the literature to rely less on mental assessment outcomes when determining the sexual decision-making capacity of people with cognitive disabilities [
Despite the shortcomings of mental assessments, reports vouching for functional capacity approaches recommended to either expand the assessment’s ability to check for adaptive behavioral domains [
The person-centered approach is philosophically driven to promote ethical integrity when working with people to determine their consent capacity [
Open communication—this factor begins with individualizing the communication process with clients, following key components of the Lichtenberg and Strzepek Instrument, Ames and Samowitz Instrument, Lyden approach, ABA/APA model, and Vancouver Coastal Health Authority themes [
Committee approach—following open communication, this factor can
Capacity assumed—a client’s sexual decision-making capacity needs to be assumed intact unless proven otherwise [
Withhold Bias—people’s attitudes, including those of staff members and caregivers, may inadvertently be against a client’s sexual preferences and deny them their rights to sexual expression [
Tracking—a client’s sexual preference and decision-making ability is expected to change over time; thus, person-centered approaches should track a client’s progress, reconfirming that they retain the capacity to both understand and refuse a sexual interaction when necessary [
One report presented a system for nurses to use, which adheres to some of the previously mentioned philosophical components. The system comprises the 4 themes of the code, Professional Standards of Practice and Behavior for Nurses and Midwives [
This is perhaps the most comprehensive approach in terms of providing a detailed care plan for determining sexual consent capacity in people with cognitive disabilities, while also discussing plans for enhancing consent capacity if necessary. The key features of the integrated approach include an interdisciplinary team discussion process, using aspects of a person-centered approach, complete with other holistic considerations. With the service user’s permission, the interdisciplinary team can be comprised an array of practitioners including physicians, occupational therapists, psychologists, social workers, nurses, and legal guardians of the person involved in the discussion [
The 3 legal criteria of consent—for legally defining the terms of consent [
ABA/APA model—for blueprinting the overall assessment and care plan design process, endorsing person-centered considerations of the evaluated person’s sexual values, which endorses the Lichtenberg and Strzepek instruments for both functional capacity and ethical considerations [
Lyden approach—for individualizing the communication and assessment process, encouraging person-centered aspects to the approach [
Lichtenberg and Strzepek Instrument—assuming that the assessment aspect of the process is performed with an MMSE [
Friends and family of the evaluated person are encouraged to play a role in the discussion process [
The contextual approach was aimed at individuals with mild cognitive disabilities and has 2 components [
The first component becomes especially important when consent definitions require an understanding of tests involving the nature, consequences, and moral dimensions of sexual acts [
There was a pattern in the reports explaining how education could improve the sexual decision-making ability of people living with cognitive disabilities. The pattern starts by mentioning the 3 legal criteria of consent components (knowledge, understanding, and voluntariness), followed by a defined set of basic skill checks to determine whether such people could address these components. Note that the 3 legal criteria of consent have a knowledge component, which defaults to being improved by sex education; however, its other components, such as understanding, may benefit from education as well [
Knowledge of body parts and sexual relationships and acts.
Knowledge of consequences from sexual relationships.
Understanding of appropriate sexual behavior and context for it.
Understanding of the voluntary nature of a sexual relationship.
Ability to recognize abusive situations.
Ability to be assertive in such situations to reject unwanted advances.
The reports endorsing educational approaches described measures that check for these areas, such as the Sexual Consent and Education Assessment [
In addition to people with cognitive disabilities, it was encouraged for staff in LTC facilities to receive education to better identify the difference between healthy and unhealthy sexual behaviors and how to resolve such situations accordingly [
Criminal justice systems were encouraged to use education and training programs to increase the awareness of communication disorders, while also considering alternative communication platforms and multidisciplinary collaborations with relevant disciplines [
There were 3 articles that argued for both disability and feminist rights movements to overcome negative attitudes within communities [
Negative cultural attitudes, such as rape culture, should be countered by plans using lifelong sexuality education and policy change with
The attitude approach also discussed how a person with cognitive disabilities and their external factors such as government, legal systems, administration, practitioners, staff of LTC facilities, and family could be influenced. A study by Syme et al [
Advanced directives are contingency plans that allow people to consent to specific sexual acts ahead of time or grant decision-making power to an SDM for an applicable future context [
A person’s ability to consent to sex can change over time, varying across situations in terms of capacity and sexual preference [
Using the cognition-plus test, this approach contains three steps [
If step 1 is unfulfilled, the test ends. Individuals who cannot determine an intimate relationship cannot qualify as sexual agents. If steps 1-2 are fulfilled, the individual is deemed to have consent capacity without the need for assistance. Step 3 becomes active only if step 2 is unfulfilled. The determination of an individual’s support network is contextual-based, guided by the fiduciary law [
This review focused on the approaches used to determine and manage sexual consent abilities in people with cognitive disabilities, noting the recurring themes influencing how these approaches were implemented. The literature assumes that such people are capable of having the capacity to desire and consent to healthy intimate relationships; however, some situations may ignore or suppress these capabilities [
Review of the literature has established that determining consensual abilities requires a holistic approach, with individuals being considered in terms of their adaptive abilities, capacities, and human rights. An abridged description of such a holistic approach includes identification of the person’s sexual identity, beliefs and values, opinions from friends and family, medical records and clinical interviews (person-centered), neuropsychological testing, and functional capacity measures involving adaptive capability skill checks, followed preferably by an interdisciplinary discussion and action plan [
The functional capacity report by Harris [
Critical requirements of consent culture, which states that “people can have sex only when everyone agrees it is OK” [
The key aspects to consider when managing and enhancing consensual ability in people with cognitive disabilities starts with attitude change. Some of the recurring attitudinal barriers identified in the literature include internal factors, such as those inflicting the individuals themselves as explained by script theory and external factors, peripheral to the individual affecting their consent ability and rights, examples being care providers, legal systems, family, friends, and supportive decision makers [
For internal factors, script theory explained that people with cognitive disabilities may show unhealthy sexual behaviors because of unlearned scripts [
External factors influencing sexual expression in people with cognitive disabilities include both formal and local situations. A report by Arstein-Kerslake and Flynn [
To check and address internal and external factors in the local situation, attitude checks using tools such as the staff attitudes about intimacy and dementia survey were recommended to give a general idea about potential staff, family, and caregiver biases toward sexual preferences in people with cognitive disabilities [
The attitude approach is arguably the most important approach to consider, because all efforts to realize a person’s sexual consent ability can be lost, should the final decision fall onto someone who does not agree with the sexual preference in the first place. The comprehensive aspects of the integrated approach are not immune to this. The Hillman report [
Advanced directives have evolved to a point where they may play a role in sexual decision-making. They are best established within third-party systems, especially those equipped to monitor their use, such as those in LTC settings [
There are philosophical arguments that may prefer either the individual’s past or future self to take precedence over the final decision of the advanced directive. It is important for evidence of both the past and future self to show some form of communication to consent, be it verbal or nonverbal. If the past self had a contingency to consent to a sexual relationship and the future self showed a token of interest, such as overtly wanting to hold hands with someone they like, this may show an overlap in interests between the past and future selves. The noticeable overlap in consensual interests between past and future selves is known as the Consensus of Consents [
This review used a systematic method to identify approaches for determining and managing sexual consent capacity in people with cognitive disabilities. There was an emphasis on recognizing the patterns of themes, each influencing how consent-determining and enhancement programs were implemented. Although the literature on the subject may have a diverse array of ideas, acknowledging the views and rights of those who desire intimate relationships, this review emphasizes a convergent style to bring these ideas together. With this review’s emphasis on pattern recognition for noting recurring themes, there is a strong possibility that emergent ideas may have been downplayed or missed entirely. This review did not include ideas from conference papers, public opinions, or non–peer-reviewed articles. This may have shifted this review’s focus to a stronger understanding of already-established sexual consent themes; however, it could be that newer ideas may change these already-existing themes. Future research may provide emergent ideas with a greater consideration of the subject. In addition, although this review featured reports from both clinical and legal sources, this review predominantly used a clinical search protocol to locate the literature. The search process was not dedicated to the legal databases. Future research on this topic should be performed with a legal background, incorporating the necessary legal databases and journals.
The desire to have an intimate relationship is one of the core elements of sexuality, which is part of what it is to be human. Healthy sexual relationships are driven by consent, which is commonly defined by people’s capability to demonstrate sexual knowledge, intelligence, and voluntariness. However, if a person with a cognitive disability has a compromised consent ability, the involved legal, clinical, or ethical systems must determine the balance between permitting and restricting sexual activity to reduce the risk of unhealthy or harmful sexual behavior. It is important for the attitudes of those involved in this process to be balanced; otherwise, the sexual rights of such assessed people could be moved either in favor or against them. The means for determining the sexual consent ability of people with cognitive disabilities include functional capacity and person-centered and integrated approaches. Management of consent ability includes education, attitude, and advanced directive approaches. These approaches seek the ideal outcome where person-centered considerations of those living with cognitive disabilities are understood and they themselves are involved in the process of personalizing the approaches used to facilitate healthy intimate relationships.
Search strategy.
American Bar Association and American Psychological Association
long-term care
Mini-Mental Status Exam
substitute decision maker
United Nations Convention on the Rights of Persons with Disabilities
The authors wish to acknowledge the contributions of the librarian in residence from the Rehabilitation Research Center, Faculty of Rehabilitation Medicine, University of Alberta, who lent their support for the search protocol used in this systematic review.
BJC and SE coconceptualized this review. SE contributed to the design of the sexual consent research question and search parameters. BJC led the manuscript writing process. SE contributed to the writing process and the revisions. All the authors approved the final version of the manuscript.
None declared.