494802
research-article2013
JAH25710.1177/0898264313494802Journal of Aging and Health X(X)Di Napoli et al.
Article
Staff Knowledge and
Perceptions of Sexuality
and Dementia of Older
Adults in Nursing Homes
Journal of Aging and Health
25(7) 1087–1105
© The Author(s) 2013
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DOI: 10.1177/0898264313494802
jah.sagepub.com
Elizabeth A. Di Napoli, MA1,2, Gloria Lauren
Breland, BA1,2, and Rebecca S. Allen, PhD1,2
Abstract
Objectives: Adults hold negative attitudes toward sexual expression in late
life. We investigated knowledge and attitudes about older adult sexuality
and dementia among staff in nursing homes (NHs). Method: We acquired
staff demographics, knowledge of dementia and sexuality, and attitudes
of sexuality. Staff participated in focus groups and received continuing
education credit. Results: The three NHs had an average census of 178
beds. Participants’ (N = 100) mean age was 38.53. The most common type
of sexual contact reported was nondemented male with nondemented
female (67.5%), followed by demented male with demented female (53.6%).
Participants endorsed neutral attitudes about late-life sexuality. Focus groups
revealed a need for more training and effective interventions to balance
resident safety and autonomy. Discussion: Staffs’ knowledge of sexuality
and dementia, desire for guidance in “managing” sexual expression, and
neutral attitudes toward late-life sexuality supports the need for educational
interventions on sexuality and dementia in NH.
Keywords
sexuality, religion and spirituality, dementia, nursing home care, attitudes
toward aging
1Department
2Center
of Psychology, The University of Alabama, Tuscaloosa, AL, USA
for Mental Health and Aging, The University of Alabama, Tuscaloosa, AL, USA
Corresponding Author:
Elizabeth A. Di Napoli, MA, Department of Psychology, The University of Alabama, Box
870348, Tuscaloosa, AL 35487-0348, USA.
Email: eadinapoli@crimson.ua.edu
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Journal of Aging and Health 25(7)
Recent literature has spurred an awareness of sexuality in late life (Ginsberg,
Pomerantz, & Kramer-Feeley, 2005), yet the assumption that older adults are
sexually undesirable, incapable of sex, or asexual remains widespread
(Benbow & Jagus, 2002; Bouman, Arcelus, & Benbow, 2006). For example,
older adults are often stigmatized as being highly inhibited or sexually inactive (Hodson & Skeen, 1994). Attitudes and perceptions about late-life sexuality tend to become even more complicated by the presence of cognitive
impairments or dementia (Allen, Petro, & Phillips, 2009). Unfortunately,
caretakers of individuals with dementia, such as nursing home (NH) staff,
often endorse negative attitudes (e.g., embarrassment, confusion, and helplessness) about late-life sexuality (Ehrenfeld, Bronner, Tabak, Alpert, &
Bergman, 1999; Gilmer, Meyer, Davidson, & Koziol-McLain, 2010). In turn,
these negative attitudes directly impact the expression of sexuality and quality of care provided to older adults (Tabak & Shemesh-Kigli, 2006). This
problem is expected to increase substantially because the older adult segment
of the U.S. population is the fastest growing demographic (U.S. Census
Bureau, 2009) and therefore, a greater number of older adults will be living
in settings with direct-care staff. Consequently, there is a need to elucidate
factors that contribute to negative stereotypes of late-life sexuality in order to
protect the autonomy of this increasing population. This project aimed to
investigate staff knowledge and attitudes about older adult sexuality and
dementia in NHs. Notably, the presence of a dementia diagnosis does not
preclude sexual consent capacity (American Bar Association and American
Psychological Association [ABA/APA], 2008; Lyden, 2007).
Holmes, Reingold, and Terisi (1997) describe sexually oriented behaviors
as “words, gestures, or movements (including reaching, pursuing, or touching)
which appear motivated by the desire for sexual gratification.” Even though
research has found that frequency of sex decreases with age, 16.8% of women
and 38.9% of men aged 75 years and older remain sexually active (Lindau
et al., 2007; Lindau & Gavrilova, 2010). Among couples in which one partner
has Alzheimer’s disease (AD), 70% reported engaging in physically intimate
activities (Davies, Sridhar, Newkirk, Beaudreau, & O’Hara, 2012). These percentages support the notion that sexuality is an integral part of human life at
any age or level of cognitive functioning and expressing it is a natural and
healthy contribution to one’s overall quality of life. Furthermore, sexual activity has been found to contribute to the overall health, prolonged longevity,
maintenance of healthy interpersonal relationships, connected self-concept,
and sense of integrity in older adults (Zanni, Wick, & Walker, 2003).
Sexual satisfaction has even been found to be linked to successful aging
and quality of life (Thompson, Charo, Vahia, Depp, Allison, & Jeste, 2011).
Identifying contributing factors to successful aging is particularly important
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because aging is associated with increased prevalence of chronic disease and
disability (Hung, Ross, Boockvar, & Siu, 2011). These physical health conditions often interfere with older adults’ ability to complete daily activities,
which in turn requires many older adults to seek direct-care assistance from
institutional settings, such as NHs. In fact, approximately 1.5 million older
adults have been estimated to receive care in NHs (National Center for Health
Statistics, 2005).
However, sexual behaviors and desires of older adults do not cease upon
NH admission. In fact, Bretschneider and McCoy (1988) found that 70% of
male and 50% of female NH residents had thoughts about being close or
intimate (to the authors’ knowledge, more recent estimates are not available).
Furthermore, Hubbard, Tester, and Downs (2003) reported that institutional
care residents’ often engage in intimate touch, kissing, sexual talk, flirting,
and teasing. A review of literature spanning from 1996 to 2009 found that
there is a dearth of research on the factors influencing sexual expression in
care homes (Elias & Ryan, 2011). Some NH barriers to older residents
expressing their sexuality have been identified, such as myths regarding
aging/sexuality, sexual dysfunction, lack of privacy in NH, and loss of a partner (Bauer, McAuliffe, & Nay, 2007; Rheaume & Mitty, 2008).
Another obstacle for NH residents’ expressing sexuality begins at the first
line of contact; that is with NH staff. For instance, nursing staff generally
have limited knowledge of late-life sexuality (Mahieu, Van Elssen, &
Gastmans, 2011). Many NH staff view late-life sexuality as a problem that
should be prevented or eradicated from the NH system altogether (Hajjar &
Kamel, 2003). Ehrenfeld et al. (1999) found that staff members often
expressed anger and revulsion when presented with erotic encounters between
residents, often voicing hostility toward the individuals engaging in this
behavior. Some in-patient care staff ignore the activity because they are
uncomfortable with the topic or do not know how to approach the subject
with the residents involved (Hayward, Robertson, & Knight, 2013). Due to
continuous worker–resident interaction and access to intimate detail, NH
staff can have a heavy impact on a resident’s thoughts and behaviors.
Therefore, NH staffs’ negative attitudes about sexuality may give older adult
residents the message that sexual expression is not an important aspect to
successful aging. This zeitgeist of protection can interfere with resident-centered care and the rights and privileges of residents under the law to express
their sexuality (Lyden, 2007).
Sexuality among NH residents with dementia remains an extremely sensitive topic, particularly because national guidelines do not exist for determining sexual consent capacity among severely demented residents (ABA-APA,
2008; Allen et al., 2009; Livni, 1994; Lyden, 2007). Yet, more individuals with
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moderate to severe cognitive impairment are being transferred to staffinvolved settings (e.g., approximately 2/3 of residents in NH; Zimmerman
et al., 2005). NH staff can become preoccupied with dementia patients’ ability
(or inability) to consent to sexual activity. Ehrenfeld et al. (1999) found that
NH staff perceived demented males’ sexual behavior with female residents or
staff as sexual harassment. In addition, sexual behavior between two cognitively impaired residents poses a dilemma for NH staff response; specifically,
whether to prioritize the autonomous behavior of the individual or the practice
ethic of beneficence (e.g., do no harm). This dilemma may result in residents
being patronized, staff being inconsiderate, and the couple’s erotic needs
being disregarded (Ehrenfeld et al., 1999). Moreover, cognitive impairments
and dementia might be accompanied with disinhibition and inappropriate sexual behavior (Alagiakrishnan et al., 2005) that requires staff response.
Need for Study
NH staff often experience difficulties and confusion regarding sexual behavior between residents, particularly among demented residents. For example,
there are often difficulties encountered by NH staff in trying to balance protecting the client from harm, determining the client’s capacity to consent to
sexual behaviors, maintaining the patient’s privacy, and promoting autonomy
(Parker, 2007). In addition, older adults’ cognition complicates this balancing
process for staff, which in turn influences emotional and behavioral responses
of staff. Therefore, it is essential to determine factors that are predictors of
staff acting in an antidiscriminatory manner. The aim of the current study is
to determine the effect of staff demographic variables, sexuality knowledge,
and dementia knowledge on staff perceptions and attitudes of late-life sexuality. Awareness of staff biases about the intimacy and sexual needs of older
people, particularly those disabled by dementia, is necessary to address these
needs in a sensitive and respectful manner. Such results would be helpful in
identifying staffing personnel that may be at increased need for educational
interventions. With this information, staff training programs that increase
staff understanding of sexuality, the ability to assess for mental capacity and
consent capacity can be designed to ultimately prevent the influence of staff
perception as a limitation to older adult sexual expression.
Current Study
The present study investigated the relations of NH staff demographics, staff
knowledge of sexuality and dementia, and perceptions of sexuality of older
adults in NHs. First, the study explores which staff characteristics are
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associated with staff knowledge of sexuality and dementia, and with reported
prevalence of late-life sexuality. No a priori hypotheses are offered regarding
specific relations. Second, the study describes NH staff attitudes toward sexual expression among residents, as well as examines the association between
staff characteristics and NH staff attitudes. In addition, researchers wanted to
test the hypothesis that staff’s knowledge of dementia and sexuality will be
positively associated with attitudes toward late-life sexual behaviors. Third,
the researchers hope to describe staff perceptions about decision-making
capacity and discuss their current means of managing sexual expression.
Lastly, we hope to summarize the enriching qualitative information that was
gathered from focus group discussions at each facility.
Method
Design Overview
The current project included three components: (a) a questionnaire acquiring
staff demographics, knowledge of AD and sexuality, as well as attitudes of
sexuality; (b) the opportunity for staff to receive educational information about
late-life sexuality and dementia; and (c) a focus group discussion. During the
study, participants were instructed to complete the aforementioned questionnaire. After completing the questionnaire, staff were provided educational
materials as a way for them to obtain continuing education credits for their
participation. Staff were provided educational information on the following
topics: explanation of dementia, dementia versus normal aging, causes/treatments of dementia, sexuality within NHs, how dementia can affect sexuality,
challenging sexual behavior, and ethical implications. Lastly, participants
engaged in a focus group discussion in which staff were given time to ask questions of research staff trained in long-term care and share experiences.
Study Sample
Participants were staff members from three specified skilled nursing facilities
in Birmingham and Northport, Alabama. Requirements for participation
included being an employed staff, with at least minimal daily contact with
residents, at one of the three skilled nursing facilities, two of which were
owned and operated by the same company. Initial telephone or face-to-face
meetings were held with administrators of each facility to explain the project
and obtain letters of support and administrative “buy in.” Multiple strategies
were used to recruit participants, including poster advertisements and facility-specific sign-up through staff development. NH directors were also
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presented with a description of the study and urged to discuss participation
with staff.
All potential participants reviewed an informed consent document describing the procedures and potential risks (e.g., mild discomfort or tiredness from
paperwork). Participants who voluntarily agreed to be in the study completed
the protocol described above, which generally took 30 min to 2 hr to complete. Continuing education credits (CEs) were offered as an incentive for
staff members to participate, in compliance with each of the NH facilities.
An appropriate sample size for this study was based on a power analysis
performed using the G*power program (Faul, Erdfelder, Lang, & Buchner,
2007). It was established that approximately 100 NH staff would be needed
for the study to reach an overall power level of .85 using an alpha of .05 and
an effect size of d = .60. The effect size for this study was determined by
averaging the main effect size from prior research (Allen et al., 2009) indicating that among college students, the effect size for sexual consent capacity
decisions among hypothetical NH residents described in vignettes ranged
between η2 = .08 to η2 = .10.
Setting
The three skilled nursing facilities utilized in this study had an average census of 178 beds. The American Health Care Association reported that the
national turnover rate is 71% for certified nursing assistants (CNAs;
Hegeman, 2005); therefore it was important to gather the CNA-to-resident
ratios on both the day and evening shift from each skilled nursing facility. We
were able to offer our study during at least one evening shift for two of the
three facilities. The CNA hours per resident per day average for Facility A
was 2 hr and 35 min, 2 hr and 31 min for facility B, and 3 hr and 11 min for
Facility C (Nursing Home Compare, n.d.).
Measures
A 79-item questionnaire (Sexuality in Older Adults Questionnaire) was
devised from measures used in prior research to assess staff perception and
knowledge of late-life sexuality and dementia. The questionnaire was divided
into five sections. First, demographic characteristics included age, sex, race/
ethnicity, months in that facility, educational attainment, marital status, sexual preference, and whether they currently have older relatives engaging in
sexual activities (8 items). Next, the questionnaire had items from the following measures: (a) Duke University Religion Index (5 items; DUREL; Koeing,
Parkerson, & Meador, 1997); (b) Alzheimer’s Disease Knowledge Scale (12
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items; Werner, 2002); (c) Aging Sexual Knowledge and Attitudes Scales (12
items; White, 1982); (d) Holmes Questionnaire (26 items; Holmes et al.,
1997); and (e) a researcher created assessment of staff perception about what
is needed for decision-making capacity in older adult residents (8 items). An
additional 8 items regarding the percentages of sexual activity in older adults
that require staff intervention were not included in the current analyses.
Demographic Variables. Demographic variables included age (in years), sex
(male = 1, female = 2), race/ethnicity (Caucasian = 1, African American =
2, other = 3), marital status (never married = 1, currently married = 2, partner = 3, separated = 4, divorced = 5, widowed = 6), time in current facility (in
months), education (in years), sexual orientation (heterosexual = 1, homosexual = 2, bisexual = 3, refused = 4), and whether staff had relatives living
in a NH care facility that are engaging in sexual activities (yes = 1, no = 2,
don’t know = 3, refused = 4).
Duke University Religion Index (DUREL; Koenig, Parkerson, & Meador, 1997). The
DUREL is a 5-item scale designed to measure three aspects of religiousness:
organizational (e.g., attending church), nonorganizational (e.g., reading the
bible or prayer) and intrinsic (e.g., incorporation into daily life). Organizational and nonorganizational are on a 6-point Likert-type scale (More than
once a week = 1, once a week = 2, few times a month = 3, few times a year =
4, once a year or less = 5, never = 6) whereas the three items comprising
intrinsic religiosity are on a 5-point Likert-type scale (definitely true for me =
1, tends to be true = 2, unsure = 3, tends not to be true = 4, definitely not true
= 5). Lower scores on all three factors indicate greater religiosity on that
domain. Koenig et al. (1997) reported a Cronbach’s α of .75, which is similar
to that found in this study (œ = .70). The DUREL has high test-retest reliability (intraclass correlation = 0.91) and convergent validity with other measures of religiosity (r’s = 0.71-0.86; Koenig & Büssing, 2010).
Alzheimer’s Disease Knowledge Scale (ADKS). Twelve questions featured in a
study by Werner (2002) were used to assess dementia knowledge possessed by
participants in this study. Closed-ended items were scored Incorrect = 0, Correct = 1, rendering scores ranging from 0 to 12 for each participant, with
higher scores reflecting a greater amount of knowledge about dementia. Since
the overall Cronbach’s α was low (œ = .48), two items were removed from the
total score (i.e., AD is fatal; Most cases of AD are hereditary) to improve internal consistency. When these items were removed the Cronbach’s α was .57,
which is similar to the modest (œ = .65) internal consistency found by Werner
(2002). Therefore, scores on this measure ranged from 0 to 10. The ADKS has
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adequate test-retest reliability (.81, p < .001), as well as predictive, concurrent,
and convergent validity (Carpenter, Balsis, Otilingam, Hanson, & Gatz, 2009).
Aging Sexual Knowledge and Attitudes Scales (ASKAS; White, 1982). For brevity
and to have consistency with the number of administered ADKS questions,
our study used 12 of the 35 questions from the knowledge assessment portion
of the Aging Sexual Knowledge and Attitudes Scale. This measure assesses
an individual’s cognizance of physiological changes that occur in later life
(true/false questions). Correct answers were scored as 1, while incorrect
answers were valued at 0; the scoring ranges from 0 to 12. Therefore a higher
score reflects greater knowledge of aging sexuality. In this study, the Cronbach’s α was .68. Reliability and validity of the scale were previously established (White, 1982).
Holmes Questionnaire (Holmes et al., 1998). From the Holmes Questionnaire
(26 items), 15 questions were chosen to assess staff attitudes toward various
instances of sexual expression in both cognitively intact and impaired residents. The research team added an additional two questions to evaluate staff
attitudes regarding sexual expression between same-sex individuals.
Responses were based on a 5-point Likert-type scale with response options
ranging from –2 “Strongly Disagree” to +2 “Strongly Agree.” Items were
reverse coded so that high scores indicated more positive attitudes and beliefs
toward sexuality in older adults. Internal consistency as reflected in Cronbach’s α analyses yielded alphas of 0.95 for the 17 questions assessing staff
attitudes about sexuality. Another section taken from the Holmes questionnaire assessed prevalence of sexual expression (8 items). Lastly, one question
was asked about what was tried as a first means of managing sexual
behavior.
Data Analysis
Data were double-entered and analyzed in a password protected database
using SPSS Version 19.0 for Windows. For all analyses, a significance level of
p < .05 was used. A defined value (e.g., 998) was chosen to stand for missing
values, so SPSS would omit these values from any of the following analyses.
Simple bivariate correlations were conducted to explore which staff characteristics were associated with staff knowledge of sexuality and dementia,
reported prevalence and attitudes of late-life sexuality. When results revealed
multiple significant correlations with a criterion variable, interactions
between predictor variables were tested. Interaction variables were
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combined into a new variable, and a multiple regression analysis was run
using all three variables.
A linear regression analysis was used to examine the association of the
predictor variables (Alzheimer’s Disease Knowledge and Aging Sexuality
Knowledge) with the criterion variable (participants’ attitude of sexuality in
late life). Linear regression analyses were repeated controlling for demographic variables (race/ethnicity, total years of education, and time in particular facility). These demographic variables were chosen as potential confounds
because they had significant associations with participants’ attitudes of latelife sexuality in descriptive analyses. Hierarchical linear regression analyses
were run with chosen covariates entered together on Step 1 and predictor
variable (Alzheimer’s Disease Knowledge and Aging Sexuality Knowledge)
entered on Step 2. The project and planned analysis was approved by The
University of Alabama Institutional Review Board.
Results
Data were collected from 100 staff members of the three specified locations
(42% at A; 49% at C; 9% at B). The participants ranged in age from 20 to 67,
with a mean age of 38.53. The sample was primarily female (93%), African
American (83.2%), and heterosexual (88%). Marital status varied amongst
participants with 40.4% being never married, 32.3% being currently married,
and 17.2% being divorced. The average amount of education was 12.86 years
(SD = 1.86), with a minimum of 10 years and a maximum of 19 years.
Participants’ worked at their respective facility on average for 50.42 months
(4.20 years; SD = 69.49 months; .03-276 months). Only 3% of the participants reported that they currently have a relative that is engaging in sexual
activities and living in a NH facility. Participants’ scores on the three aspects
of religiousness were 4.33 for organizational (1-6), 4.72 for nonorganizational (1-6), and 4.35 for intrinsic (1-5).
Staff Characteristics
Knowledge of Late-Life Sexuality and Dementia. The participants’ mean score
on the dementia knowledge portion of the questionnaire was 6.13 (SD = 2.03)
out of 10, with a range of 0 to 10. Similarly, the mean score on sexuality
knowledge was 6.03 (SD = 2.78) out of 12, with a range of 1 to 12. There was
a positive association between participants’ dementia and sexuality knowledge scores (r = .46, p < .01), indicating greater knowledge of AD was associated with greater knowledge of sexuality. In addition, both dementia
(r = .27, p = .01) and sexuality (r = .31, p < .01) knowledge scores
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Figure 1. Participant level of intrinsic religiosity (DurIn) by ADKS (Alzheimer’s
Disease Knowledge) scores interaction for ASKAS (sexuality knowledge) scores.
were positively associated with participants’ years of education. Sexuality
knowledge scores were positively associated with nonorganizational religiosity (r = .31, p < .01) and intrinsic religiosity (r = .24, p = .02), showing that
less engagement in such activities as prayer and self-reported importance of
religion were associated with greater knowledge of sexuality. Furthermore,
dementia knowledge scores were positively associated with age of participant (r = .23, p = .03). Lastly, there was a significant intrinsic religiosity by
dementia knowledge score interaction for sexuality knowledge (β = –.19, p =
.04). More specifically, as participants’ level of intrinsic religiosity decreased,
the positive association between dementia knowledge and sexuality knowledge became stronger (low intrinsic religiosity, r = .63; medium intrinsic
religiosity, r = .62; high intrinsic religiosity, r = .24; see Figure 1).
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Prevalence of Sexual Expression Among Residents. The most common type of
sexual contact reported was nondemented male with nondemented female
(67.5%), followed closely by demented male with demented female (53.6%).
In terms of reported prevalence, there was a significant positive association
with participants’ total years of education (r = .28, p = .01), such that higher
educated participants tended to report more prevalence of nondemented male
with nondemented females than less educated participants. In addition, there
was a positive association with organizational (r = .23, p = .04) and nonorganizational (r = .23, p = .04) religiosity with reported prevalence of sexual
expression. As such, participants who spend less time in private religious
activities, as well as time in church or other religious meetings, tended to
report more prevalence of contact between nondemented males with nondemented females. Conversely, Caucasian participants (r = –.24, p = .04) tended
to report less prevalence of contact between nondemented males with
demented females.
Attitudes Toward Sexual Expression Among Residents
In general, participants’ endorsed neutral attitudes (M = .24; SD = .41) about
late-life sexuality in NH facilities. In fact, participants’ reported that sexual
behaviors routinely occur in NH (M = .44) and such sexual feelings or emotions should be encouraged among residents with dementia (M = .46). The
most endorsed item was that participants’ agreed that clinical staff working
with demented residents should receive specific instructions for dealing
with resident sexuality and sexual expression (M = .95). However, participants’ reported more negative attitudes about interactions between same-sex
couples than opposite-sex couples. For instance, participants were rather
neutral about dealing with sexual behaviors among demented residents (M =
–.02), but reported greater difficulty when sexual behaviors were between
same-sex couples (M = .38). Similarly, participants’ reported that sexual
behavior amongst same-sex couples should be discouraged (M = .21),
whereas sexual expression amongst dementia residents should not be discouraged (M = –.19).
There was a negative correlation between participants’ race/ethnicity (r =
–.28, p < .01) and time in particular facility (r = –.29, p < .01) with reported
attitudes about late-life sexuality. On the contrary, there was a positive correlation between participants’ total years of education (r = .31, p < .01) and
reported attitudes about late-life sexuality. To summarize, Caucasians, higher
educated participants, and participants that had less time in a particular facility reported more positive attitudes toward resident sexuality. None of the
criterion variable interactions were significant for the above analyses.
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Knowledge of Late-Life Sexuality and Dementia. There was a significant positive
association between sexuality knowledge scores and reported attitudes about
late-life sexuality (β = .34, SE = .01). In addition, staffing knowledge of sexuality accounted for 11.3% of the variance in attitudes of late-life sexuality.
After controlling for covariates (race/ethnicity, total years of education, and
time in particular facility), results indicate the association between sexuality
knowledge scores with reported attitudes about late-life sexuality was
reduced by 35%, but it remained significant (β = .22, p = .045). Contrary to
hypotheses, participants’ dementia knowledge scores were not related to attitudes toward sexuality among NH residents (p = .23).
Staff Perceptions About Decision-Making and Management of
Sexual Expression
As a first means of managing resident sexual behavior, participants’
reported that they typically use direct intercession (37%), call the family
(24%), or call a staff meeting (11%). The questionnaire also asked questions to assess participants’ beliefs about decision-making capacity for
sexual activity in NH residents. Overall, participants’ believed that residents: (a) should have a neuropsychological assessment to evaluate their
current cognitive function (M = .69, SD = 1.14); (b) should be aware of who
is initiating sexual contact (M = .83, SD = 1.11); (c) behaviors should be
consistent with former beliefs (M = .29, SD = .96); (d) should be able to state
level of sexual intimacy they would be comfortable with (M = .52, SD =
1.14); (e) must realize that the relationship may be time-limited (M = .29,
SD = 1.14); (f) need to think about how they would react if the relationship
ends (M = .29, SD = 1.20); and (g) should not engage in sexual activity if
they believe that the other person is their spouse (M = –.78, SD = 1.17). In
addition, participants’ agreed that staff should ask resident permission to
discuss sexuality (M = .80, SD = 1.13).
Focus Group Discussions
Initially, the research team led focus group sessions by presenting a case scenario and facilitating discussion among participating staff about the case, ethics, and considerations of decisional capacity to engage in sexual behavior. At
subsequent focus groups, however, the research team noted that staff predominantly spent time discussing cases within their own facility or in other
facilities in which they had worked. Therefore, focus group discussions associated with the educational information provided to staff were refocused on
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facilitating consideration of existing situations within their own NH facility
and the research team served as expert consultants (RSA is a licensed psychologist and EAD is a master’s prepared clinical psychology student).
Groups and individuals within groups varied in their openness to discussing issues of sexuality and sexual expression in NHs. Staff indicated awareness that sexual expression was happening in their facilities and readily
identified residents who engaged in such expression. Some of these residents
were noted to have cognitive impairment. Both resident-to-resident and resident-to-staff expressions of sexuality were discussed. Notably, incidents of
same-sex sexual expression were rare in group discussions. Resident-to-staff
expressions of sexuality were common and handled with care while maintaining firm boundaries that “we don’t do that.”
On the questionnaire staff reported that sexual feelings should be encouraged among residents with dementia; however, in focus group discussion
most indicated that sexual expression should be ignored, “. . . pull the curtain.” The disagreement between survey report and narrative expression in
focus groups may indicate greater discomfort in responding to incidents of
sexual expression than reported on the questionnaire. Notably, a social desirability bias in responding to the questionnaire could be operating.
Staff indicated a desire for more guidance in “managing” sexual expression among residents. Questions regarding consent capacity for sexual
expression and concerns about the reaction of residents’ families were common. These questions were more poignant when the resident in question had
a cognitive impairment. In these cases, it was more common for staff to
express a tone of disapproval regarding sexual expression. Staff clearly indicated a need for more training and the creation of effective interventions to
balance resident safety and autonomy regarding sexual expression in NHs.
Discussion
This study adds to the body of knowledge regarding NH staff experience in
managing late-life sexual behaviors in NHs by examining relations between
staff characteristics, knowledge of late-life sexuality and dementia, attitudes
toward late-life sexuality, and understanding of the relation between cognitive ability and sexual expression. The results of our study highlight the
importance of providing training interventions for NH staff. Such interventions should focus on increasing staff knowledge of sexuality and dementia,
as well as on improving attitudes and reducing stigma about sexuality and
dementia, particularly among same-sex residents.
Overall, the results of this study elucidate many staff characteristics that
are associated with knowledge of sexuality and dementia, as well as reported
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prevalence and attitudes of late-life sexuality. Participants’ total years of education had a positive relation with all criterion variables (e.g., Alzheimer’s
Disease Knowledge and Aging Sexuality Knowledge scores, reported prevalence, and attitudes of late-life sexuality). Caucasian participants tended to
report more positive attitudes toward resident sexuality and less prevalence
of contact between nondemented males with demented females. Participants
that had less time in a particular facility reported more positive attitudes
toward resident sexuality. Age was positively associated with Alzheimer’s
Disease Knowledge scores, but none of the other criterion variables.
Nonorganizational religiosity was positively associated with many of the criterion variables (e.g., Aging Sexuality Knowledge scores, reported prevalence of sexual expression, and staff attitudes about late-life sexuality). In
addition, organizational religiosity had a positive association with reported
prevalence of sexual expression, whereas intrinsic religiosity had a positive
association with Aging Sexuality Knowledge scores. Furthermore, intrinsic
religiosity was a moderator between Alzheimer’s Disease Knowledge and
Aging Sexuality Knowledge scores. It may be that an underlying personality
variable such as openness to experience or agreeableness underlies these
observed associations, raising a question for future research.
Not surprisingly, Aging Sexuality Knowledge scores were positively
related to reported attitudes of late-life sexuality. Controlling for participants’
race/ethnicity, total years of education, and time in particular facility
decreased, but did not render nonsignificant, the association of Aging
Sexuality Knowledge scores with reported attitudes of late-life sexuality.
This may indicate a level of health literacy with regard to sexual expression
among NH residents, but to the authors’ knowledge no direct measure of
sexual health literacy exists. This presents a topic for future research.
Participants’ Alzheimer’s Disease Knowledge scores, however, were not
related to attitudes toward sexuality among NH residents. As revealed in
focus group discussions, staff perceived conflict in their roles to protect the
autonomy of NH residents while maintaining the ethic of beneficence in
regard to responding to resident sexual expression. This was particularly true
when one of the residents had dementia, as staff indicated a desire for testing
to determine residents’ sexual consent capacity. Staff training interventions
regarding resident autonomy of sexual expression and the need for clear communication among residents, family members, and staff regarding desire for
sexual expression are clearly indicated.
In general, participants’ endorsed neutral attitudes about late-life sexuality
in NHs, particularly if they were in accordance with traditional norms (nondemented male with nondemented female). However, participants’ attitudes
were more negative when interactions were between same-sex couples. Hash
Di Napoli et al.
1101
(2006) reported that NH staff is more likely to stigmatize same-sex activity
between residents than opposite-sex activity. While NH staff may not directly
exhibit homophobic attitudes, many gay and lesbian older adults have
reported “slighting remarks” or “rude” behavior while addressing alternative
sexualities (Hash, 2006). These issues of stigma need inclusion also in staff
training interventions, as future cohorts of NH residents will be more vocal
and diverse in their need for sexual expression (Frost, 2011).
Study Limitations
Although the results of the current study are informative, there were several
limitations as with any research. First, the study results were mostly correlations between variables measured at one point in time, precluding interpretation of causation between associated variables. Similarly, it is unknown if
educational materials were effective because staff were not given a pre- and
post-assessment to examine whether there were changes in knowledge and
attitudes of sexuality and dementia. Second, the analyses are based upon a
convenient sample of NH staff from Birmingham and Northport, Alabama
who were predominantly female, African American, and heterosexual.
Therefore, the findings may not be generalizable to a more diverse sample or
different geographic locations. Because it is likely that many of the staff have
worked in similar NH settings, it may have been informative to inquire also
about the overall time in the nursing sector in addition to time in the current
facility. Third, researchers were not able to procure as many questionnaires
from participants who worked during the evening shift as from the day shift,
possibly skewing the resulted prevalence reports.
Future Directions
Despite these limitations, our mixed method results suggest that NH staff
were only moderately knowledgeable about dementia and aging sexuality.
Moreover, they indicated a desire for further training in managing late-life
sexuality, particularly in the context of cognitive impairment. These data provide preliminary evidence that NH staff should be given educational intervention strategies or training on sexuality and dementia. The majority of
participants agreed with the notion that NH staff need specific instructions
for dealing with resident sexuality and sexual expression. In fact, educational
intervention strategies have proven to have positive effect on both staff
knowledge and attitudes toward late-life sexuality (Livni, 1994; Walker &
Harrington, 2002). Given our findings, it would be beneficial for interventions to not only target increasing knowledge, but also improve attitudes
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Journal of Aging and Health 25(7)
about same-sex sexual behaviors. Such intervention efforts, however, need to
consider staff members’ nonorganizational religiosity (e.g., prayer and meditation) and intrinsic religiosity’s potential moderating effect in relation to
dementia knowledge and knowledge of late-life sexuality (see Figure 1).
Future studies should (a) continue to examine the role of staff demographic variables on knowledge and attitudes toward late-life sexuality;
(b) build on NH ethics policies concerning late-life sexuality and consider the
impact of resident representation on NH ethics committees; (c) explore different assessments and factors necessary for decision-making capacity for
sexual expression in older adults; and (d) investigate different interventions
for increasing staff knowledge of dementia and sexuality, as well as improving attitudes toward late-life sexuality and the concomitant impact of these
interventions on resident quality of life and, subsequently, successful aging
over time.
Summary and Implications
This series of cross-sectional analyses demonstrated that certain staff
demographics are positively related to knowledge and attitudes of late-life
sexuality and dementia. In combination with the imminent, substantial
growth in the number of older adults in NH and the established relations
between sexual expression, overall health, and quality of life, this investigation provides further justification for determining the nature of the relations between staff characteristics and attitudes of late-life sexuality. It is
our hope that NH facilities will use results such as these to generate educational interventions to improve staff attitudes and knowledge of late-life
sexuality and dementia.
Acknowledgment
The authors wish to thank the administrators and staff of the three skilled nursing
facilities that participated in this study.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research,
authorship, and/or publication of this article: The study was funded by The University
of Alabama, Department of Psychology Undergraduate Honor’s Program (G. Lauren
Breland).
Di Napoli et al.
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