Public perspectives toward long-term care staff's interventions in the sexual relationships of residents with dementia

Abstract

Background and objectives

Sexual expression is an essential component of older adults’ quality of life, including those with lower cognitive functioning. Issues have been raised with long-term care facility policies related to aspects of staff intervention, permissibility of degree of intimacy, and how involved partners of residents with cognitive decline may be in decision-making processes.

Research design and methods: This study used a multiple segment factorial vignette to explore the attitudes of the public toward a dementia-caused non-spousal sexual relationship in a long-term care facility. Specific elements examined included the degree of intimacy, obligation of long-term care staff to intervene in the relationship, and the healthy spouse’s disposition. Respondents (N = 318) were contacted using a list-assisted random-digit dialing method and read a version of the vignette with the independent variables randomly generated. Two logistic regression models and one ordinal regression model were used to analyze the main effects of the independent design variables and respondent characteristics.

Results

The majority of respondents report the need for long-term care staff to intervene in sexual relationships and an obligation to inform the healthy spouse of a resident’s sexual relationship. Results suggest differences of opinion exist based on respondent characteristics of education and religiosity.

Discussion and implications: Public opinion is in favor of long-term care facilities incorporating spousal involvement into decisions regarding a cognitively impaired resident’s ability to engage in an intimate relationship. Implications for long-term care policy focusing on staff training about sexual expression and intervention in addition to incorporating the spouse into decision-making processes are discussed.

Keywords

dementia healthcare policy sexuality

Individuals in later life continue to engage in various forms of sexual activity, which contributes to relationship satisfaction (DeLamater & Moorman, 2007; Gott & Hinchliff, 2003), physical and psychological well-being (Brody, 2010; Ganong & Larson, 2011), quality of life (American Association of Retired Persons, 2010; Flynn et al., 2016), and the absence of loneliness (Miles & Parker, 1999) and depression (Krohn & Bergman-Evans, 2000). Although one’s sexual desires and behaviors may shift over the lifespan (Ginsberg, Pomerantz, & Kramer-Feeley, 2005; Gott & Hinchliff, 2003), many older adults still actively engage in some degree of sexual activity (Lindau et al., 2007) despite the onset of dementia-like symptoms (Di Napoli, Breland, & Allen, 2013; Katz, 2013) or admission to a long-term care (LTC) facility (Frankowski & Clark, 2009; Hubbard, Tester, & Downs, 2003). Although lower cognitive functioning in older adults tends to be associated with lower instances of sexual behavior (Hartmans, Comijs, & Jonker, 2014), studies still suggest that neither sexual drive (Miller, Darby, Swartz, Yener, & Mena, 1995) nor satisfaction (Diamond et al., 2009) are affected by cognitive status. In fact, 22% of married couples with at least one partner having dementia reported continuing to engage in a satisfying sexual relationship (Ballard et al., 1997), while 75% indicated that sexual satisfaction was directly related to sexual intercourse (Dourado, Finamore, Barroso, Santos, & Laks, 2010).

Partnered sexual activity when one individual has dementia is not always limited to a spousal relationship, however, as married individuals with dementia may create an unknowingly adulterous relationship, particularly when residing within close proximity to other aging adults in an LTC facility. The term adulterous is not used without pause, as debate continues whether such relationships should be considered adulterous (e.g. Singal, 2015). In fact, Tenenbaum (2009) suggested that various legal arguments could be made against the semantic labeling of adultery, one of which is based on the likelihood that “…demented residents who do not know they are violating their marriage vows are probably not adulterers” (p. 697). Contextually, Tenenbaum outlines the complexities of evaluating these delicate situations, citing a need to consider elements of capacity to consent, the resident’s family, and the LTC facility’s care of the well-being of the resident. Conversely, the sexual activity of caregiving partners with a demented spouse also raises challenges to the consideration of adultery in partnered relationships that include a spouse with dementia (Mundy, 2009).

Examination of these types of situations such as when a married resident with dementia engages in sexual activity with a non-spouse, conjures up questions not just pertaining to legality, but also ethics and morals, which are areas some LTC facilities have thus far been hesitant to address. The public, however, has offered polarizing views on sexual expression among older adults with dementia (e.g. Syme et al., 2017); yet, a review of the literature highlights major disagreements between what the public views as acceptable and what scholars cite to be the most beneficial for the resident (e.g. Wilkins, 2015). Attempts to reconcile these views have thus far been few as well as tend to neglect what may be in the best interests of the spouse with dementia. Thus, despite the continued interest in and ability to engage in sexual relationships after a dementia diagnosis, differing views toward training, policy, and legal and ethical concerns can delay further advancement in this area.

Training and policy

More broadly, job strain in LTC staff has been shown to be a result of number of factors including the LTC work climate, staff education level, and the potential for engaging in difficult ethical situations with dementia residents (Edvardsson, Sandman, Nay, & Karlsson, 2009). In particular, a well-trained LTC staff has important implications for dementia resident care and well-being. For example, Zimmerman, Williams, et al. (2005) found that ongoing training opportunities increased the likelihood of LTC staff exhibiting dementia-sensitive attitudes. Additionally, improvements in dementia-resident quality of life has been tied to ongoing LTC staff training, a specialized worker approach, and increased opportunities for LTC staff-resident and LTC staff-resident family communication (Zimmerman, Sloane, et al. 2005b), which resulted in better LTC staff attitudes toward aging residents with dementia (Kada, Nygaard, Mukesh, & Geitung, 2009).

A lack of understanding about the sexual health, sexual ability, and sexual desires of aging adults has notable implications, including for those individuals who work within LTC facilities. The complexity and sensitivity that emerges from caring for those with chronic disease, cognitive decline, and/or disability within a controlled environment necessitates an educated staff and policies that reflect developmentally appropriate interventions.

Despite being engaged in the day-to-day care of LTC residents, many healthcare professionals still possess negative and restrictive attitudes (Bouman, Arcelus, & Benbow, 2007; Gott, Hinchliff, & Galena, 2004) and are suspect to misinformation about sexuality and older individuals (Rheaume & Mitty, 2008). The common lack of understanding and acceptance of the continued sexual and intimate needs of older adults present among professional caregivers substantially impact their ability to provide unbiased, person-centered care. Further, according to the American Medical Directors Association (AMDA, 2013), 45% of LTC administrators report not providing staff with training on sexual behavior of residents, while another 39% were uncertain if training on those topics occurred. Also concerning is the fact that less than one-quarter reported having a policy on intimacy and sexual behavior for residents. Another review of LTC facilities revealed that even though there is ample evidence about the prevalence of sexual activity among older adults in these specific contexts, 63% of LTC facilities do not maintain active policies with regard to sexuality or sexual activity (Lester, Kohen, Stefanacci, & Feuerman, 2016).

In surveys of LTC facilities, there is evidence to suggest that LTC staff feel discomfort and ambiguity about how to respond to the sexual behavior of residents (Lester et al., 2016). The discomfort tends to arise from negative or restrictive personal beliefs about the sexuality of older adults, while the ambiguity stems from an uncertainty about what organizational policies may permit in the realm of sexual expression. Syme, Lichtenberg, & Moye (2016) suggest it prudent to take proactive measures focused on policy and education that inform LTC administrators, employees, and the family members of those under the auspices of LTC facilities about sexuality and sexual activity in older adults. G. M. Doll (2013, p. 36) states,

It is clear that having some guidelines that address sexual expression are better than having none at all. Without policies, staff members are left to blunder through situations as best they can, and residents are not afforded the privacy or respect they deserve in sexual expression.

Legal issues

Systematic recommendations advocating for the creation of policy and ongoing education within LTC facilities regarding sexual expression are becoming more prevalent in the literature (e.g. Frankowski & Clark, 2009; White, 2009; Wilkins, 2015), particularly regarding an individual’s capacity to consent. In fact, the AMDA (2016) has suggested that LTC facilities make substantive additions to policies that address potentially problematic issues arising from sexual activity as well as make sense of how to understand the element of capacity to consent to sexual activity among residents with diminished cognitive capacity. Issues surrounding these topics have begun to cause a challenge for legislators and in turn for LTC facilities contemplating how to internally manage sexual expression and consent in residents with lower cognitive functioning. For these reasons, a case is made for implementing a standardized measure to evaluate a resident’s capacity to consent (Tang, 2015). However, no collective, agreed upon standard across the nation exists but rather a variety of criteria that differs from state-to-state (Lyden, 2007; Tang, 2015). These substantive additions are a direct result of the growing number of publically polarizing legal cases stemming from the ambiguous policies on sexual expression, consent, and residents with lower cognitive functioning residing within LTC (e.g. Belluck, 2015). In one instance, a 78-year-old man was charged, though ultimately acquitted, with raping his wife whom had dementia and resided in an LTC facility (Jaffe, 2015). Similar cases are raising important questions about how LTC facilities handle these issues, which has ultimately drawn considerable public attention (Belluck, 2015; Syme et al., 2017).

Ethical issues

Sexual activity in LTC facilities not only summons legal considerations but also raises ethical questions, especially when considering disparate beliefs between the resident, the resident’s partner and/or family, and the LTC facility and its staff. This is compounded when a resident’s cognitive status is in decline, and when there does not exist a formalized mechanism for consenting to sexual activity or for the reporting of such events observed by LTC staff (see Boni-Saenz, 2016). Kamel and Hajjar (2004) argue that in such cases “ethical considerations go beyond the concepts of autonomy, beneficence, and nonmaleficence” (p. S51).

Ethical issues also arise when considering the perspectives of the resident’s partner, family member(s), or power of attorney representative, including whether or not to inform those individuals of sexual relationships and/or behaviors. G. M. Doll (2013) reports that LTC staff generally agree upon the need to notify family members of sexual relationships, though in practice are hesitant to do so and can be easily persuaded to not report if asked by the resident. Attitudes and beliefs of family vary, and even within a family unit, differences of opinion exist about what is and is not acceptable sexual activity. In the most personal of relationships, the resident’s partner is often the most impacted by, and can have the most input regarding, a resident’s ability to engage in sexual activity (Evans & Lee, 2014). Ranging from comfortability of their resident-partner engaging in new relationships to a stance that engagement in sexual activity is equivalent to adultery, a partner’s beliefs about the acceptableness of sexual activity can have implications for staff intervention or non-intervention (Frankowski & Clark, 2009; Tenenbaum, 2009).

The degree of intimacy in which residents engage is also of interest, as LTC staff attitudes vary; staff are generally more approving of flirting and hand holding compared to other more explicit sexual acts such as viewing pornographic materials and sexual intercourse (Hajjar & Kamel, 2003). Although interest and engagement in sexual activities persist, sexual proclivities generally range in degree of intimacy from flirting, cuddling, and kissing to masturbation and sexual intercourse (Ginsberg et al., 2005; Gott & Hinchliff, 2003).

With a burgeoning aging population, there is a growing need for LTC facilities to shift toward a more standardized set of policies regarding the sexual expression of its residents. The legal and ethical dimensions point to the need for comprehensive, research-informed standards of training for staff of LTC facilities. Since these personnel serve in direct-care roles, it is prudent that more directive action is undertaken to address the precarious, sensitive situations staff encounter with residents’ sexual expression. Additionally, considering the roles and perspectives of the public are necessary, too, as these individuals have significant influence on the development of LTC policy and may likely be the family member or spouse of an LTC resident in the future. Thus, the intent of this paper is to explore attitudes of the general public toward a dementia-caused, non-spousal sexual relationship in an LTC facility. Specifically, the obligation of LTC staff to intervene in the relationship, with degree of intimacy and the healthy spouse’s disposition being considered, will be explored.

Methods and design

Procedure and design

Respondents were contacted using a list-assisted random-digit dialing method that gave all household telephone exchange in a southern state an equal probability of being contacted. Although respondents were not compensated for their participation, this procedure resulted in a cooperation rate of 34%, which is comparable to identified telephone response rates (Chang & Krosnick, 2009).

The vignette

In order to assess the expectation of LTC staff intervention in opposite-sex residents’ sexual relationships, a multiple segment factorial vignette was designed. Prior to being read the vignettes for the current study, two separate vignette segments were read to respondents. Although these vignettes were a part of the larger study, they were analyzed and disseminated previously (E. Yelland & Hosier, 2015; E. L. Yelland, Cless, Mallory, & Cless, 2017), and thus those results will not be included. For contextual understanding, the prior vignettes indicated that a resident of an LTC facility had developed dementia and desired to engage in a sexual relationship with their spouse who did not reside in the LTC facility.

In the first vignette segment analyzed for the current study, a non-spousal relationship as a result of dementia was introduced, and one independent variable—degree of intimacy—was randomly manipulated (independent variables are italicized).

Due to dementia, David no longer realizes that he is married and has developed an intimate relationship with another resident of the nursing home who also has dementia. The two have been seen having intimate physical contact or overheard engaging in flirtatious conversation.

Respondents were then asked, “Given this information, do you think the nursing home staff should or should not attempt to stop the new relationship?” and “How obligated are nursing home care staff to inform the spouse of the new relationship: would you say highly obligated, somewhat obligated, slightly obligated, or not at all obligated?” Then, respondents were prompted to provide the rationale for their responses.

In the second segment of the vignette analyzed in the current study, an additional independent variable was revealed: spouse’s disposition (comfortable or distressed; independent variables are italicized).

The nursing home care staff explain to Amy that it is common for people with dementia to develop new intimate relationships even if they were happily married for many years. Nevertheless, Amy is distressed about David having a new intimate relationship or After learning this, Amy is comfortable with David having a new intimate relationship.

Following this segment, respondents were asked, “Given the spouse’s response, do you think the nursing home staff should or should not attempt to stop the new relationship?” and “Briefly explain in your own words why you chose this answer.”

Analytic approach

Two logistic regression models and one ordinal regression model were created to analyze the main effects of the independent design variables and respondent characteristics. The closed ended, dichotomous response option questions served as the dependent variables for the logistic regression, and degree of obligation served as the dependent variable for the ordinal regression analysis. Age and gender of the individual portrayed in the vignette were incorporated into the model, as they proved to be a statistical predictor of attitudes in previous studies (E. Yelland & Hosier, 2015; E. L. Yelland et al., 2018). The independent variables included age, sex, degree of intimacy, and spousal disposition. Respondent demographics—age, sex, education, religiosity, importance of sexual intimacy, and knowledge of a person with dementia—were also incorporated into the model to determine how much sway these characteristics had on a respondent’s decision. Finally, respondents’ open-ended rationales were typed verbatim and coded inductively. All of the responses were coded by a second coder to test for inter-rater reliability, which resulted in near perfect agreement (kappa = .86) between the two coders (Landis & Koch, 1977).

Results

Sample

The sample consisted of 318 respondents, ranging in age from 18 to 94 years (M = 55.9, SD = 16.1). The majority of respondents were female (69.5%), married (57.8%), White (92.5%), and had children (81.4%). The level of formal education was diverse: 34.5% received a high school diploma or less, 26.4% completed some college, 22.3% had a bachelor’s degree, and 16.8% had a post-bachelor’s degree. The most commonly reported religious affiliations were non-Baptist Protestant (43.3%), Baptist (33.5%), and Catholic (15.1%). Overall, 48.3% indicated they were very religious, 38.1% classified themselves as somewhat religious, 7.3% were slightly religious, and 6.2% were not very religious. The median annual household income was between $30,000 and $50,000. When asked, “At this point in your life, how important is sexual intimacy to you?” 39.7% said very important, 29.7% said it was somewhat important, 11.0% said not very important, and 19.7% said not at all important. Finally, 66.5% of respondents indicated currently knowing or having known someone with a dementia-related disease.

Degree of intimacy

After hearing about the new relationship, 78% of respondents indicated that LTC staff members should attempt to stop the relationship between two opposite-sex residents with dementia whom are not married to each other, regardless of whether the couple was engaged in flirtatious conversation or intimate physical activity. The independent variable, degree of intimacy, had no statistical bearing on attitudes, thus suggesting, perhaps, that the non-spousal nature of the relationship itself was the basis for respondents’ decisions rather than the degree of the intimacy being displayed. The two independent variables introduced in previous segments—age and sex—also had no statistical impact on respondents’ attitudes.

Respondent characteristics

Of the respondent characteristics analyzed for this segment, two proved to have an impact on respondents’ opinions—education and religiosity. Specifically, for each unit decrease in a respondent’s attained education, respondents were nearly 1.5 times as likely to say that LTC staff members should intervene in an attempt to stop the relationship; the less educated a respondent was, the more supportive they were of staff intervention. Further, for each unit increase in reported religiosity, respondents were 66% more likely to say that the staff should intervene (see Table 1).

Table 1.

Logistic regression predicting whether long-term care staff should intervene to stop the non-spousal relationship: segment 1 (n = 284).

Predictor	B	SE	P	OR	95% CI
65⁽⁹⁵⁾	0.15	0.30	.622	1.16	[0.64, 2.09]
Male^(female)	0.01	0.30	.977	0.96	[1.01, 1.82]
Flirtatious conversation^{(intimate physical contact)}	0.13	0.30	.666	1.14	[0.63, 2.05]
Respondent characteristics
Age	0.02	0.01	.155	1.02	[0.99, 1.04]
Male^(female)	0.53	0.36	.138	1.70	[0.84, 3.44]
Importance of sexual intimacy	−0.03	0.15	.824	0.97	[0.72, 1.30]
Education	−0.38	0.14	.007	0.68	[0.52, 0.90]
Never had children^{(has had children)}	−0.12	0.39	.758	0.88	[0.41, 1.93]
Religiosity	0.40	0.17	.018	1.50	[1.01, 2.10]
Does not know someone with dementia^(does)	0.31	0.33	.360	1.36	[0.71, 2.61]

Note: Reference category is in parentheses. CI = confidence interval for odds ratio (OR). Should = 78.2%. SE: standard error.

Obligation of staff to inform the spouse

Overall, 53% of respondents indicated that LTC staff members were highly obligated to inform the spouse of the relationship and 84% of respondents indicated that LTC staff had at least some degree of obligation to inform the spouse. Of those who said that the relationship should not be stopped by LTC staff, 77% of respondents still indicated that staff members were obligated to inform the spouse of the relationship. Among those who said that the staff should intervene, 86% indicated that staff members were obligated to tell the spouse. Regardless of the degree of obligation reported by respondents, the majority always supported stopping the relationship. The three independent variables analyzed in this segment—age, sex, and degree of intimacy—had little bearing on attitudes (see Table 2).

Table 2.

Ordinal regression predicting degree of obligation for staff to inform spouse of non-spousal relationship (n = 290).

Predictor	B	SE	P	OR	95% CI
65⁽⁹⁵⁾	0.29	0.23	.217	1.33	[0.85, 2.09]
Male^(female)	0.04	0.23	.877	1.04	[0.66, 1.62]
Flirtatious conversation^{(intimate physical contact)}	0.00	0.23	.998	1.00	[0.64, 1.56]
Respondent characteristics
Age	−0.00	0.01	.745	1.00	[0.98, 1.01]
Male^(female)	−0.01	0.26	.957	0.99	[0.60, 1.65]
Importance of sexual intimacy	0.10	0.11	.366	1.11	[0.89, 1.38]
Education	−0.81	0.11	.465	0.92	[0.74, 1.15]
Never had children^{(has had children)}	0.41	0.33	.205	1.51	[0.80, 2.86]
Religiosity	−0.02	0.15	.892	0.98	[0.73, 1.31]
Does not know someone with dementia^(does)	−0.09	0.25	.722	0.92	[0.57, 1.48]

Note: Reference category is in parentheses. CI = confidence interval for odds ratio (OR). SE: standard error.

Qualitative rationales

The qualitative responses (see Table 3) generally substantiated the quantitative results in that most respondents did not cite the vignette character’s degree of intimacy as a rationale for their opinion. Instead, the largest proportion of those who said that the relationship should be stopped simply cited that the spouse had a right to know (16%). Of those who gave this rationale, all respondents indicated that the LTC staff were obligated to some degree to tell the spouse. One respondent said, “She is his wife and she should be told.” Next, 15% of respondents cited that the LTC staff should stop the relationship because the person “is married and should abide by that.” Nearly 12% of respondents cited that individuals with dementia lack the mental competency to have intimate or sexual relationships. One respondent said, “I just know when you lose your mind you don’t know what you are doing. I mean…it’s just not right,” and another said, “They [persons with dementia] lose their ability to think rationally.” In regard to how respondents believe LTC staff should respond, 13% said staff should attempt to discontinue the relationship, 10% said they were obligated to tell the spouse about the relationship, and only 6% said staff should not tell the spouse about the relationship.

Table 3.

Most common rationale for whether LTC staff should stop the non-spousal relationship and degree of obligation to inform healthy spouse.

Rationale	n	%
Should
Spouse has the right to know	55	15.9
Person is married and is committing adultery	52	15.0
LTC staff should attempt to discontinue relationship	45	13.0
Persons with dementia lack competence to have an intimate relationship	41	11.8
LTC staff is obligated to tell the healthy spouse	34	9.8
LTC should not inform the spouse; they could get upset	20	5.8
Relationship is morally wrong	10	2.9
Spouse is paying for care, and therefore has the right to know	8	2.3
Intimate relationships for a person with dementia are a health and safety risk	7	2.0
Should not
Spouse has the right to know	15	16.1
Person is married and is committing adultery	12	12.9
Persons with dementia lack competence to have an intimate relationship	12	12.9
Adult autonomy	10	10.8
LTC is obligated to tell spouse about the relationship	9	9.7
LTC should not inform spouse because they could get upset	6	6.5
Depends on LTC policy	4	4.3
Dependent upon degree of relationship	4	4.3

The majority (63%) of those who cited adult autonomy indicated that the LTC staff was obligated to some degree to inform the spouse of the relationship. Among those who said the LTC staff should not stop the relationship, a large proportion of respondents still focused on the need for LTC staff to tell the spouse (26%), and many cited that the relationship was adulterous and/or inappropriate for persons with dementia (26%). Only 11% of those who said the staff should not stop the relationship cited adult autonomy as a rationale for their response.

Spousal disposition

After hearing about the spouse’s disposition, 64% of respondents indicated that LTC staff should attempt to stop the non-spousal relationship; prior to hearing the spouse’s disposition, 78% of respondents gave the same response. Spousal disposition had a statistical impact on respondents’ opinions, as respondents were nearly seven times more likely to say staff should intervene after hearing that the cognitively healthy spouse was distressed by the new, non-spousal relationship. Overall, 83% of respondents who heard about a distressed spouse said that the staff should intervene. Conversely, only 46% of respondents said that staff should attempt to stop the relationship after hearing about a supportive spouse.

Respondent characteristics

Of the respondent characteristics analyzed for this segment, one was a statistically significant predictor of respondent’s attitudes; respondent education was positively associated with stating that LTC staff should not intervene to stop the new relationship. Specifically, for each unit increase in a respondent’s achieved education level, respondents were nearly 1.5 times more likely to say that the LTC staff should not attempt to disrupt the non-spousal relationship. Notably, knowing or having known another individual with a dementia diagnosis did not statistically affect respondents’ opinions in either vignette segment analyzed for the current study (see Table 4).

Table 4.

Logistic regression predicting whether long-term care staff should intervene to stop the non-spousal relationship: segment 2 (n = 284).

Predictor	B	SE	P	OR	95% CI
65⁽⁹⁵⁾	−0.41	0.29	.150	0.66	[0.38, 1.16]
Male^(female)	0.01	0.29	.996	1.00	[0.57, 1.76]
Flirtatious conversation^{(intimate physical contact)}	−0.52	0.28	.069	0.60	[0.34, 1.04]
Comfortable^(distressed)	−1.88	0.30	<.001	0.15	[0.09, 0.27]
Respondent characteristics
Age	0.01	0.01	.461	1.01	[0.99, 1.03]
Male^(female)	0.19	0.32	.564	1.20	[0.64, 2.26]
Importance of sexual intimacy	−0.21	0.14	.133	0.81	[0.62, 1.07]
Education	−0.33	0.14	.018	0.72	[0.55, 0.94]
Never had children^{(has had children)}	0.33	0.38	.386	1.39	[0.66, 2.93]
Religiosity	0.27	0.17	.114	1.31	[0.94, 1.82]
Does not know someone with dementia^(does)	−0.28	0.30	.353	0.76	[0.42, 1.37]

Note: Reference category is in parentheses. CI = confidence interval for odds ratio (OR). Should = 64.4%. SE: standard error.

Qualitative rationales

The qualitative rationales (see Table 5) among respondents who said the staff should stop the relationship were generally consistent with those in the previous segment. The majority of respondents (40.8%) cited that the relationship was adulterous and immoral, or that persons with dementia are incapable of sustaining intimate or sexual relationships. The qualitative responses also aligned with the quantitative results in that 17% of respondents cited the healthy spouse’s disposition in their rationale.

The responses among those who said the staff should not stop the relationship generally substantiated the quantitative results; the largest proportion (43%) indicated that their response was based on the spouse’s positive disposition toward the relationship. The next largest proportion of responses (23%) cited rationales of adult autonomy. One person even said, “Anything that makes people happy in those poor nursing homes.” Finally, 6% of respondents indicated that it was not the responsibility of the LTC facility or staff members to stop the relationship; one person said, “It is not their responsibility. They are there to take care of health not the moral laws.”

Table 5.

Most common rationale for whether LTC staff should stop the non-spousal relationship.

Rationale	n	%
Should
Relationship is adulterous and immoral	59	25.9
Persons with dementia lack competence to have an intimate relationship	34	14.9
If spouse is upset, LTC should attempt to stop the relationship	24	10.5
If spouse is comfortable, LTC should not attempt to stop the relationship	15	6.6
Should not
If spouse is comfortable, LTC should not stop relationship	51	42.5
Adult autonomy	27	22.5
Not the responsibility of LTC to stop the relationship	7	5.8

LTC: long-term care.

Discussion and implications

The purpose of this study was to understand public perspectives toward whether LTC staff members should intervene in a dementia-initiated non-spousal relationship within an LTC facility. The results indicated that LTC facilities must incorporate spousal involvement into decisions regarding the resident’s engagement in an intimate relationship—regardless of the degree of intimacy in which the resident is engaging. The public sees intervention as appropriate, which contrasts with previous research that cites appropriate acknowledgement of sexual behaviors does not necessarily require intervention unless there is a cause for concern. Guidelines generally suggest that there needs to be some degree of intervention in order to assess competence and risk (e.g. Steele, 2010), but that staff should not intervene to stop a relationship unless a resident is clearly refusing the encounter and the staff perceive it as “an unwanted invasion of personal space” (p. 11), even if the individual is married. This disagreement between what the public sees as appropriate and what researchers say would be the most beneficial for the resident heightens the need for clear guidelines and policy on if and how LTC staff should intervene in intimate relationships as well as the role that a resident’s spouse and/or family members may play in those decisions. Interestingly, this study revealed that the public believes intervention should occur, even when a relationship is limited to flirtation. What that intervention was to entail was not asked in this study, but one could assume this would be a logistical and ethical nightmare if LTC staff were burdened with ensuring that two residents could not come within close proximity of one another for fear that they would engage in a playful, flirtatious conversation. To what extent, then, are LTC staff expected to intervene if, in fact, the couple is engaging in a more physical relationship? Again, this was not addressed by the current study, but our findings indicate a need for understanding of what the public sees as an appropriate intervention. This knowledge would further clarify the degree to which family members and spouses of LTC residents need to be educated on the policies and practices adopted by the facility.

The need for policy

This study furthers the need for consistent, fair policy concerning sexuality in LTC facilities. Because intimate relationships are an integral component of well-being and happiness, and sexuality continues to be a normal and natural part of life, creating and sustaining policy that supports resident’s choices while protecting them from unwanted sexual attention is important. Such policy may include guiding LTC staff members to respond to sexual desires and expression in appropriate ways as well as encouraging staff to initiate an open dialogue regarding the sexual needs of residents (e.g. a private room, condoms, or pornographic materials). The development of such policy can evoke a sexually supportive environment for residents, LTC staff, and family members and highlights the commitment to all quality of life issues.

Additionally, it is not uncommon that personal beliefs and values among residents, family members, and LTC staff will differ. Without a guiding policy, personal biases may affect decision-making and “staff and family may decide on a management response that disregards the preferences of the residents involved” (Christie et al., 2006, p. 6). In order to create effective policy, conversations within and across the various environmental systems of an LTC resident must be initiated. A possible first step in designing these types of policies is the creation of a working group comprising involved members of the LTC community such as administrators, staff, residents, residents’ family members and spouses, general counsel, and experts in sexual expression and aging. This would allow for all the critical voices of an LTC facility to be included as policies related to resident sexual expression, staff training and intervention, and disclosure to family members and spouses are constructed. Additionally, this type of inclusive working group, similar to what was advocated by Wilkins (2015), could also address issues that arise by being an evaluative entity and make recommendations with the input of a broader representation of LTC constituents.

Limitations

This study provides insight into the general public’s perceptions toward residents of LTC facilities with dementia engaging in a sexual relationship. As is evidenced in the literature (e.g. Frankowski & Clark, 2009; Hubbard et al., 2003), this is both a common and complex issue within LTC facilities. This study, though, necessitates that distinct limitations be addressed, the first being that the sample was both limited to a southern state and household telephone numbers. Additionally, given that the vignettes were phrased hypothetically, it is plausible that answers may had differed had a respondent been asked about themselves or a family member.

Conclusion

The sexual activities of residents pose major challenges for LTC facilities, especially in instances when declining cognitive functioning is a factor. Prior research has demonstrated that professional staff of LTC facilities and medical professionals tend to possess negative, restrictive beliefs about aging and sexuality in addition to experiencing uncertainty regarding how exactly to respond when encountering instances of sexual activity. Further, the likelihood of an LTC facility having an outlined, well-defined policy about assessment, intervention, and informing of sexual activity is negligible. As a result, there exists a wide gap between what researchers have been making a case for with regard to policy and the actual implementation of policy-related measures by LTC facilities. This study provides evidence of a public expectation of LTC staff to intervene and inform when knowledge of participation in sexual activity by a cognitively declining resident exists. There is a growing need to address each in a systematic, informed manner to protect and ensure the quality of life of all residents by providing relevant training and educational opportunities that empower LTC staff and create a resident-centered environment. Thus, we argue that it is salient for LTC facilities to create policies addressing the elements of sexuality, sexual activity, and consent of aging residents by (1) increasing staff education and training about issues related to aging and older adult sexuality, (2) incorporating protocols for staff intervention in cases of a resident’s sexual behavior, and (3) creating a communication system that facilitates open communication with LTC staff and residents in addition to LTC staff and a resident’s family members.

The main components of an overarching policy should be multifaceted and comprehensive. First, staff knowledge of sexuality across the lifespan, in particular of aging adults, needs to be a critical component of training for the duration of a staff member’s employment. Second, comprehensive and regular assessments of resident cognitive functioning need to be a priority, especially for those who are sexually active or in romantic relationships, as a safeguard for these residents and their overall well-being. Third, the delineation of specific guidelines for staff intervention in instances of a resident’s sexual behaviors. Fourth, protocols about the dissemination of information to a resident’s spouse and family members regarding the resident’s sexual activity are important and should be communicated directly to these individuals before or during a resident’s early stages of residing in an LTC facility. While we acknowledge that there are more specifics that can be documented for each of these four broad categories, in general, these areas may allow LTC facilities to begin making much needed progress toward creating and sustaining a supportive environment where aging residents are safe and able to express their sexuality to whatever degree, and with whomever, they desire.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Erin Yelland is an assistant professor and extension specialist in the school of family studies and human services at Kansas State University. Her research focuses on sexual expression among older adults with dementia.

M. Hunter Stanfield is a doctoral student in Couple and Family Therapy at Kansas State University as well as a licensed marriage and family therapist and a state approved family mediator in Kansas. He researches and has a clinical emphasis in issues related to men’s mental health and relationships.

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