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International Journal of Nursing Practice 2014; ••: ••–••
LITERATURE REVIEW
An integrated literature review on sexuality of elderly nursing home residents with dementia Kiyoko Makimoto RN PhD Professor, Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan
Hee Sun Kang RN PhD Professor, Department of Nursing, Red Cross College of Nursing, Chung-Ang University, Seoul, Korea
Miyae Yamakawa RN PhD Assistant Professor, Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan
Rie Konno RN PhD Adjunct Faculty, Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan
Accepted for publication October 2013 Makimoto K, Kang HS, Yamakawa M, Konno R. International Journal of Nursing Practice 2014; ••: ••–•• An integrated literature review on sexuality of elderly nursing home residents with dementia This study presents an integrative literature review on sexuality among elderly people with dementia living in nursing homes. Original research studies published from 1980 to 2012 were included in the review. Sexual expressions ranged from holding hands to sexual intercourse. These behaviours were sometimes directed towards caregivers while the latter were providing daily care. Sexual expressions were sometimes assessed and reported subjectively without context. Responses to sexual expressions varied from positive to negative. Some sexual expressions were dealt with inconsistently, and some were considered to be problematic due to a lack of policy or privacy. It is important to assess and report sexual expressions objectively, preferably with a standardized form, and to consider context in doing so. Effort is required to provide privacy for residents’ sexual expressions and a safe environment for all residents and caregivers. It is important that a policy and guidelines for care be established regarding issues related to sexuality among elderly people with dementia. Key words: aged, behaviour, dementia, nursing homes, sexuality.
INTRODUCTION As the average lifespan increases, the elderly population is anticipated to increase. It is estimated that the number of people over the age of 60 will be 2 billion by the year 2050. In addition, the number of people suffering from
Correspondence: Hee Sun Kang, Department of Nursing, Red Cross College of Nursing, Chung-Ang University, 221 Heuksukdong Dongjakku, Seoul 156-756, Korea. Email: [email protected] doi:10.1111/ijn.12317
dementia was estimated at 35.6 million in 2011 and is predicted to reach 65.7 million by 2030.1 A significant proportion of elderly people with varying levels of cognitive impairment will need to be cared for within a residential care home.2 Dementia is particularly common among institutionalized elderly individuals.3,4 The sexuality of the elderly has been the focus of increasing attention in recent years, and there appears to be growing recognition that sexual expression among elderly individuals is a natural part of healthy ageing. © 2014 Wiley Publishing Asia Pty Ltd
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Sexual expression among elderly people has been reported to decrease because of changes in sexual response associated with ageing, physical illness, adverse effects of medication, or lack of able partner or interest.5,6 However, some studies have revealed that institutionalized elderly people exhibit sexual interest and activity7 and are likely to benefit from sexual intimacy.8,9 Sexuality continues to be a meaningful and important part of the lives of elderly people with dementia living in care homes.10 The rights to privacy and sexual expression are increasingly acknowledged as important parts of life among elderly people with dementia living in care homes. Sexual behaviours or expressions of elderly individuals with dementia are often considered as a subdimension of aggressive or agitated behaviours.11,12 Thus, sexual behaviours such as making verbal or physical sexual advances or exposing genitals might be evaluated as a subset of agitated behaviours,11 whereas sexual behaviours such as making obscene gestures, touching the body parts of another person, hugging, intercourse or kissing might be evaluated as a subset of aggressive behaviours.12 Furthermore, sexual behaviours among elderly people with dementia have traditionally been regarded as problematic examples of disinhibited,13 inappropriate,14 hypersexual or aggressive behaviours.15,16 Caregivers taking care of elderly people with dementia should expect sexual behaviours to occur and should respond in a sensitive and informed manner that protects the sexual rights of residents with dementia.15 Increased understanding of sexual expression among elderly residents with dementia might have positive impacts on the ability of caregivers to deal with sexual expressions among residents17 and help inform them about the sexual needs of residents with dementia. The purpose of the current study was to provide an integrated literature review on sexuality among elderly people with dementia in nursing homes.
(28), Web of Science (19) and PsycINFO (13). Articles from each database search were screened on the basis of titles, abstracts and full text. Articles were excluded if they were not (i) primary, empirical research with a quantitative, qualitative or mixed-method design; (ii) concerned with sexuality; (iii) concerned with institutionalized elderly individuals with dementia; and (iv) published in English. A total of 80 articles (27 from PubMed, 24 from CINAHL, 17 from Web of Science and 12 from PsycINFO) were excluded because of language restrictions (1 French and 1 Chinese) or because they were not research-based or lacked relevance to the aims of the review (78). From the remaining 11 articles, eight articles were used in the final analysis after exclusion of three duplicates. Relevant data were gathered together and classified into two categories: sexual expressions and responses to sexual expressions.
METHODS
The literature search yielded eight relevant publications. Six studies used quantitative research methods and two used qualitative ones (Tables 2,3). Three studies were conducted in the USA, and the remaining studies were carried out in five different countries: the UK, Australia, Canada, Israel and Taiwan. Five studies specifically focused on sexuality among institutionalized elderly people with dementia.17,19,21–23 The other three studies focused on both elderly people with dementia and those without20,24 or on dementia among elderly individuals residing in nursing homes or communities.15
We conducted a search for relevant articles using four databases (PubMed, Web of Science, CINAHL and PsycINFO), selecting studies published between January 1980 and May 2012. The following keywords were used in combination: ‘sexuality’, ‘sexual behavior’, ‘sexual activity’, ‘nursing home’, ‘residential home’, ‘care home’, ‘long-term (care) facilities’, ‘aged’ and ‘dementia’. In addition, we used the references of related articles to identify additional relevant studies. Initial searches yielded a total of 91 articles from PubMed (31), CINAHL © 2014 Wiley Publishing Asia Pty Ltd
Quality appraisal The eight studies selected were examined for methodological quality by two independent reviewers prior to inclusion in this review, and disagreements were resolved by consensus. Two different critical appraisal checklists for quantitative and qualitative studies published by the Joanna Briggs Institute (JBI) were used.18 The quantitative studies were examined using the standardized critical appraisal checklist from the JBI Meta-Analysis of Statistics, Assessment and Review Instrument for descriptive studies. This checklist consists of nine items. The qualitative studies were examined using the Qualitative Assessment and Review Instrument critical appraisal checklist. This checklist consists of 10 items. Table 1 summarizes the quality assessment. No study was excluded based on the evaluation of methodological quality.
RESULTS Study characteristics
Y Y N/A N Y N/A N/A Y Y
N Y N/A Y Y N/A N/A Y Y
Y Y
N Y N/A N N/A N/A N/A Y Y
N Y N/A Y Y Y N/A Y Y
Y Y N/A Y Y N/A N/A Y Y
Y Y N/A Y Y N/A N/A
U Y Y Y Y N N Y Y Y
U Y Y Y Y N N Y Y Y
Zeiss Holmes Archibald21 Ehrenfeld Alagiakrishnan de Medeiros Tzeng Shuttleworth et al.19 et al.20 et al.17 et al.15 et al.22 et al.23 et al.24
Joanna Briggs Institute Meta-Analysis of Statistics, Assessment and Review Instrument. ‡ Joanna Briggs Institute Qualitative Assessment and Review Instrument. N, no; N/A, not applicable; U, unclear; Y, yes.
†
Quantitative studies† 1. Was study based on a random or pseudo-random sample? 2. Were the criteria for inclusion in the sample clearly defined? 3. Were confounding factors identified and strategies to deal with them stated? 4. Were outcomes assessed using objective criteria? 5. If comparisons are being made, was there sufficient description of the groups? 6. Was follow-up carried out over a sufficient time period? 7. Were the outcomes of people who withdrew described and included in the analysis? 8. Were outcomes measured in a reliable way? 9. Was appropriate statistical analysis used? Qualitative studies‡ 1. Congruity between the stated philosophical perspective and the research methodology 2. Congruity between the research methodology and the research question or objectives 3. Congruity between the research methodology and the research methods used to collect data 4. Congruity between the research methodology and the representation and analysis of data 5. Congruity between the research methodology and the interpretation of results 6. Statement locating the researcher culturally or theoretically 7. Influence of the researcher on the research, or vice-versa, is addressed 8. Participants, and their voices, are adequately represented 9. The research is ethical according to current criteria or, for recent studies, there is evidence of ethical approval by an appropriate body 10. Conclusions drawn in the research report do appear to flow from the analysis, or interpretation, of the data
Item
Table 1 Methodological quality of the reviewed studies (n = 8)
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Table 2 Studies included in literature review Design
Subject
Data collection
Outcome
Quantitative Qualitative Resident Caregiver Questio- Obser- Interview Record Sexual Response Other & other nnaire vation review expression Zeiss et al.19 Holmes et al.20 Archibald21 Ehrenfeld et al.17 Alagiakrishnan et al.15 de Medeiros et al.22 Tzeng et al.23 Shuttleworth et al.24
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One of the qualitative studies used grounded-theory methodology,23 and the other used telephone interviews with content analysis.24 The study using grounded-theory methodology addressed trustworthiness,23 but the other study did not provide information about the rigour of the study. All quantitative studies were observational studies. Sample size varied widely among the quantitative studies we selected, ranging from 23 to 114 participants. Response rates, when mentioned, varied from 40%20 to 85%.21 The samples of three studies17,19,23 consisted of elderly with dementia, caregivers and others. Caregivers included registered nurses and care aides, managers and others. Two studies were reviews of the records of patients with dementia.15,22 Two studies involved observational data collection. In studies using direct observation,17,19 nursing staff or researchers were requested to record the sexual behaviour of residents exhibiting moderate dementia through continuous observation for 14 weeks17 or by time sampling with intermittent observation of behaviour.19 In the observational study, reliability checks and coder training were reported.19 Six studies provided information on sexual expression,15,17,19,21–23 and five studies provided information about others’ responses to sexual expression.17,20,21,23,24 Sexual expressions were examined using a checklist17,21 or a standardized coding sheet19 or were directly recorded.15,22,23 One observational checklist © 2014 Wiley Publishing Asia Pty Ltd
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included a detailed description of events, whether sexual behaviours were directed towards males or females, to whom they were directed (patients, staff, visitors or family) and the activity type, including a list of sexual acts.17 Two studies reported the reliability or validity of methods for examining sexual behaviours.17,19 Responses from staff, other residents and family members17 to sexual expressions by residents with dementia were measured using a form developed to record responses,17 and one study used a scale of attitudes towards sexual expressions measuring two factors: positive and supportive orientations and restrictive ones.20 Responses from people nearby when the behaviour occurred, family members, visitors and formal caregivers were coded as positive, neutral or negative.23 In one study, vignettes were used to obtain information, and responses were classified into five types: ignore; observe; observe, then intervene; intervene immediately; and other.21 Background information on residents with dementia, including information on age, marital status, sex,22 education,23 major illness and medication in use, was recorded.19 Regarding the severity of dementia, one study divided dementia into mild, moderate and severe categories based on Mini-Mental State Examination (MMSE) score,22 and another distinguished stages I and II.17 The other studies did not specify the severity of dementia.
To examine sexual behaviour
To measure the attitude of health professionals towards sexuality and sexual expression To examine types and prevalence of sexual expression by people with dementia and staff responses
Zeiss et al.19 (USA)
Holmes et al.20 (USA) Cross-sectional survey
Postal survey
Observational study
Study design
Shuttleworth et al.24 (Australia)
To examine how nursing managers perceive and respond to sexual expression of elderly residents and whether facilities have any written policy
Qualitative
Observation
Method(s)
Nursing managers (n = 198)
Outcome
—
— Review of sexual behaviour in the care records; thematic analysis Purposive sampling; Institutional review board approval, interviews with consent from caregivers and subjects and observation of family/guardian residents for 3 days Not addressed Semi-structured telephone interview
Retrospective medical record review
Permission from participants by telephone
• Types of sexual behaviour: appropriate, ambiguous, inappropriate Consent from • Response: positive, neutral, negative guardian with power of attorney • 18% of patients displayed a sexually inappropriate behaviour at some time • Ambiguous behaviours more frequent than inappropriate Not addressed • Respondents held a generally positive orientation towards residents’ sexual expression
Consent/approval
• Positive views about the rights of residents for sexual expression, but few facilities had any formal policies
• Predisposing factors to sexual expression: opportunity, presence of cooperative target, personal space with privacy • Types of sexual expression considered: physically intimate touch; sexual expression without touching others and sexual talk • Responses: neutral, negative, positive
• Twenty-seven subjects (65.7%) showed verbally inappropriate behaviour and 36 (87.8%) showed physically inappropriate behaviour • 1.8% showed sexually inappropriate behaviour • Three types of behaviour were evident: (i) intimacy-seeking; (ii) disinhibited; (iii) non-sexual • Behaviour type was associated with dementia severity
• Four main types of sexual expression considered: (i) behaviours shown by both male and female residents with dementia; (ii) those shown by male residents with dementia; (iii) those shown by female residents with dementia; and (iv) those shown by male residents without dementia • The most common form: male and female residents holding hands (65%) • Responses: some types of sexual expression appear to be of more concern than others: (sexual expressions towards staff; exploitation and coercion; public sexual expression) • Sexual behaviour: mostly heterosexual and ranged from love and Institutional ethics Observations of caring to romance and eroticism committee sexual behaviour approval, consent • Reactions varied, others were accepting of love and care but often by 25 nurses over objected to erotic behaviour from family 14 weeks
Administrators, clinicians, social Postal questionnaire workers and others (n = 114) Managers (n = 23) Postal questionnaire
Male patients with dementia (n = 40)
Population
Ehrenfeld et al.17 To observe and categorize manifestations of Observational Patients with stage II (90%) & study stage I (10%) dementia (Israel) sexuality among institutionalized older (n = 48) people with dementia and to analyse the reactions of other patients, staff and family members Alagiakrishn-an To determine the prevalence, aetiology and Retrospective Cognitively impaired elderly 15 et al. people with sexually cross-sectional treatment profile of abnormal or inappropriate behaviour study inappropriate sexual behaviour (Canada) (n = 41) de Medeiros Elders with dementia (n = 40) Retrospective To examine associations of sexual et al.22 (USA) case–control behaviours with several resident study characteristics, including gender, marital status and dementia type and severity Tzeng et al.23 Male residents (n = 12) and To explore the characteristics and contexts Qualitative their caregivers (n = 12) (Taiwan) of sexual behaviours (ground theory)
Archibald21 (Scotland, UK)
Aim(s)
Author(s) and country
Table 3 Summary of studies included in the literature review
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Regarding the ethical aspects of the study, several studies obtained approval from the appropriate institutional review board (IRB) or an ethics committee17,22,23 and informed consent from family or guardians or patients. One study received IRB approval and consent from patients, families and guardians holding power of attorney.23 In contrast, one observational study received consent only from guardians holding power of attorney or conservatorship for the patient.19 Institutional ethical permits were obtained for studies that reviewed care records.15,22
Sexual expressions and responses to them The main themes that emerged from the literature reviewed were sexual expressions and responses to them.
Sexual expressions Sexual expressions as exhibited by people with dementia in residential care were typically examined by direct observation,17,19,23 by record review15,22 or by interviewing care staff.21 A broad spectrum of sexual expressions have been reported among elderly patients with dementia, including holding hands, cuddling, masturbating in public, touching others’ genitals in public, sexual intercourse, sexual expression without touching others and sexual language.17,21,23 The most common physical behaviour reported in one study was inappropriate touching of the opposite sex (87.8%).15 In another study, individual stroking of one’s own genitals in a private space was the most common behaviour.23 Sexual expressions were categorized in different ways in different studies, as follows: (i) into acts ranging from those expressing love and caring to those involving romance, eroticism (such as compulsive masturbation) or aggressiveness;17 (ii) into sexual acts (with or without contact with others) and verbal sexual behaviours;23(iii) into appropriate, ambiguous and inappropriate sexual behaviours;19 and (iv) into intimacy-seeking behaviour and disinhibited, rude and intrusive behaviour.22 However, difficulty in classifying some expressions was also noted.17 Sexual behaviour was found to be mostly heterosexual15,17 and directed towards residents and visitors17 as well as caregivers. Female caregivers were commonly inappropriately approached sexually or touched on the breasts or other body parts against their will by male residents.15,21,23 Sexual expression towards caregivers on the part of nursing home residents occurred in diverse © 2014 Wiley Publishing Asia Pty Ltd
situations. The most frequently reported situations involved personal-care activities such as washing, bathing, dressing or feeding.23,24
Responses to sexual expressions The responses of other residents, caregivers and family members to sexual expression on the part of residents varied, ranging from acceptance of expressions of love and care to objection to erotic behaviours.17 Whereas some people reported positive and permissive attitudes, others reported negative attitudes towards the sexual expressions of residents.19,23 In one study, almost half of the nursing home staff indicated that even behaviours such as hugging and holding hands were difficult for them to deal with.20 In the same study, over 30% of clinicians and social workers and over 60% of administrators believed that genital contact between residents with dementia should be discouraged.20 Some caregivers showed a more tolerant attitude toward residents’ sexual expression.20,21 Residents and spouses were less tolerant than caregivers of residents’ masturbating, engaging in sexual relationships, viewing sexual materials or making sexual advances toward staff. Some caregivers or managers reported fear that the likelihood of involuntary sexual involvement might lead to legal action against them and the nursing home.17,20 Female caregivers reported that they felt shameful or sexually harassed when male residents touched or gestured to them sexually.17,23 Family members’ reactions to sexual expressions on the part of residents varied. Ehrenfeld et al.17 reported that residents’ adult children commonly reacted negatively to their parents’ erotic sexual involvement and demanded their protection when it was suspected they were being sexually abused. Some staff believed that family members should be contacted at the first hint of sexual expression or interest shown by the resident or towards the resident.20 In addition, some managers believed that it was their responsibility to seek families’ permission for relationships between residents to continue, regardless of female residents’ mental competency.21 Behavioural policies differed among institutions,23,24 and sexual expressions were dealt with in inconsistent or informal ways.24 One institution tolerated open sexual behaviour such as masturbation, but this behaviour was not supported in another, religious institution.23 In addition, caregivers’ reactions to sexual behaviour among elderly individuals with dementia differed when they interpreted those behaviours as non-sexual or due to a
Sexuality of elderly with dementia
lack of privacy. For example, some behaviours, such as getting into another person’s bed, were regarded as ‘wanting to be close to another human being as opposed to a sexual advance’.17 When a lack of privacy resulted in caregivers’ witnessing residents’ sexual activity, some caregivers tried to promote privacy by using a ‘do not disturb’ sign on the door,24 blocking the glass windows of residents’ doors using calendars23 or taking the residents to their rooms when public masturbation occurred.21
DISCUSSION Sexual expressions The current review reveals that sexual expressions among elderly people with dementia in nursing homes vary widely and that caregivers and residents in nursing homes are commonly confronted with a broad spectrum of sexual expressions. These range from verbal to physical
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sexual expressions. Our results show a lack of consideration of context in assessment of sexual expressions and interpretative rather than descriptive reporting of sexual expressions. These findings suggest that context should be reported in future studies, allowing more objective and consistent identification of sexual expressions.25 In this review, the tools used to examine sexual expressions varied. Inconsistent assessing and reporting systems cause difficulties in comparing research results and using them for evidence-based nursing practice. Thus, the development of an inventory for clinical and research use regarding sexual expression among elderly people with dementia would be helpful. There is a need for a taxonomy of sexual expressions and responses to them. Although proposing a taxonomy of sexual expressions is beyond the scope of this paper, we do propose a comprehensive inventory of sexual expressions (Table 4). The variables reviewed are structured
Table 4 Inventory for reporting sexual expressions and responses Category
Variable
Characteristics of the initiator
• • • • • • • • • • • • • • • • •
Age, gender, marital status, educational level Major diagnoses, severity of dementia Medication Health conditions (pain, skin condition) Personal care (bathing, dressing, feeding) Group activity Others or none Staff, resident, families, visitor None Verbal Physical contact (hugging, touching, kissing, holding hands) Non-physical contact (exposing breast or genitals) Time Public Private Other resident’s room Age, gender
• • • • • •
To ignore To observe To intervene (specify) To ignore and continue To accept the intervention To resist the intervention
Antecedent
Behaviours
Behaviour’s target person Type of behaviour with specific details
Time and place
Consequence
Characteristics of the caregiver responding to sexual expressions Caregiver’s response
Resident’s response to caregiver’s response
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according to the ABC (Antecedents–Behaviour– Consequences) approach, as suggested in previous studies.26,27 This inventory could serve as a reporting form for staff members or be used to collect data for research purposes. Our reasons for including the specific items found on the inventory, as well as prevention strategies, are discussed below.
Characteristics of initiators Characteristics of initiators recorded include basic demographic information, information related to dementia and health conditions (Table 4). A major diagnosis of dementia is important for understanding the pathological changes affecting sexual expressions that are more commonly reported in cases of severe dementia.28 This is especially true in cases of dementia that affect the frontal or temporal lobe, the area of the brain regulating libido.27,29 Certain sexual expressions could also be side effects of dopaminergic agonists used in the treatment of Parkinson’s disease.30–32 Health conditions need to be explored because this might reveal an absence of sexual intent in apparently sexual behaviours. For example, residents with dementia might react to pain or uncomfortable clothing by publicly undressing or engaging in genital touching.33,34
Antecedents The antecedents for sexual expression might not always be obvious. Nevertheless, identifying antecedents can sometimes prevent behaviour by limiting exposure to triggers. Some sexual expressions exhibited by male residents towards female caregivers result from the misinterpretation of staff care activities, such as dressing or bathing, as sexual advances.21,23 In order to prevent this type of misinterpretation, it is important to clearly explain to the resident what will be done before providing nursing care. Strategies such as switching caregivers or using same-sex caregivers33,35 could also be used. Group activities are another antecedent, as they often provide an opportunity for physical touching.23 People with severe dementia are often vulnerable to sexual abuse because they are unable to assess risks and refuse sexual advances.34 Sexual abuse by fellow residents is more common among women residing in nursing homes36 and women with cognitive deficits.29,37 Thus, it is important to acknowledge the possibility of increased risk among vulnerable residents and to take steps to protect these residents. Strategies such as placing high-risk resi© 2014 Wiley Publishing Asia Pty Ltd
dents near a nurse’s station36 and closely observing them, especially during the night, when staffing is low, are recommended.7,29 Assessing the competency of residents with dementia to engage in a sexual relationship is complex. However, it is suggested that residents be assessed as to their capacity to say no to unwanted sexual contact and to identify others; this ensures that they are able to prevent the misidentification of someone making sexual advances as a spouse or partner.38
Behaviours Behaviours can be assessed according to three elements: target person, type of behaviour, and time and place (Table 4). Negative terms labelling behaviours, such as ‘inappropriate’ or ‘abnormal’,14,35,39 are based on observers’ subjective views.7,40 To respect and support the sexual expression of elderly individuals with dementia, efforts to avoid using negative terms and to encourage the use of unbiased, objective terms are important.
Consequences Items related to consequences can be assessed according to the following three elements: characteristics of caregivers responding to sexual expressions, caregiver’s response and resident’s response to the caregiver. Some caregivers responded to sexual expression by intervening immediately or after observing the behaviours.21 Some caregivers provided alternatives with the goal of decreasing engagement in sexual acts in public or providing privacy. Modifying clothing to open at the back to discourage removal and assigning manual activities such as folding towels have been suggested as techniques to discourage behaviours such as disrobing, exposing and fondling the genitals and public masturbation.15,41 However, modified clothing that is difficult to remove might negatively affect self-care. Thus, we recommend that caregivers pay close attention to additional assistance that might be needed for adequate self-care. Other responses reported in this review and in previous studies were ‘pulling curtains around the bed’41 to promote privacy, redirecting a person who is masturbating in public to a private area and redirecting persons who have entered another resident’s bed back to their own room.41 The consequence category is the least welldeveloped category in this review, as research to date has mainly focused on sexual behaviour. Extensive work is needed in order to evaluate appropriate interventions. In some studies, staff responses to sexual expressions are classified as ‘positive’, ‘negative’ or ‘neutral.’ This
Sexuality of elderly with dementia
type of classification scheme requires interpretation, and descriptions of specific responses are necessary for creating an accurate inventory.
Implications for practice and future research needs This review reveals a need for development of policies or guidelines to address sexuality issues among elderly people with dementia15 because caregivers often responded to similar sexual expressions in inconsistent or informal ways in the absence of policy or guidelines.24 Legal advice is necessary to cover legal issues that should be considered and to prevent the institution and caregivers from facing legal trouble.42 Education of caregivers is also essential to improve their responses to residents’ sexual behaviours. Caregivers who felt uncomfortable about sexual issues tended to have less permissive attitudes,43 which likely caused them to have difficulties with residents’ sexual expressions.44 Thus, to create a supportive environment, caregivers need to develop a positive attitude toward sexual expression on the part of residents with dementia. Education can reduce caregivers’ discomfort, encouraging positive attitudes and improving their ability to deal with residents’ sexual expressions by promoting an understanding of the sexual needs of elderly individuals with dementia.15,17,45 The other issue is the family’s (or legal guardian’s) wishes, which were important in determining whether to allow sexual relationships among elderly individuals with dementia. Whether or not family members should be notified about sexual expressions of elderly individuals with dementia is a complex issue that can lead to conflict between the basic rights of residents and their families’ desire to protect them. To minimize conflict, the sexual consent capacity of residents should be assessed periodically or when required. In addition, residents, as well as family members or legal guardians, should be informed about the possibility of intimate relationships in advance, and clear information should be included in policies related to sexuality. To promote awareness of sexuality in elderly individuals with dementia, relevant information should be included in or linked to by the institution’s website. Education and counselling through websites and in person might be helpful for people wishing to know more. Furthermore, information about institutional policy regarding residents’ sexual expression should be offered to residents, visitors and family members on admission
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and on an ongoing basis. For future research, collection of data from multiple sources is necessary for understanding of the variety of sexual expressions and responses to them, as each source has its own limitations.
Conclusion The sexual expressions exhibited among individuals with dementia and responses to those expressions vary widely. Assessing and reporting of sexual expressions should be performed objectively using a comprehensive inventory. Both caregivers and other residents are at risk of being victims of residents’ sexual acts. Efforts to identify and prevent the possibility of sexual harassment or abuse early are important. Negative attitudes on the part of caregivers or family members and a lack of privacy might be barriers to the sexual expression of residents. Safe and supportive environments in which elderly individuals with dementia can express their sexuality are needed. Caregivers and managers often fear being involved in legal situations. Although support for sexual behaviour for elderly individuals with dementia is desirable, if legal support with clear guidelines is not available, caregivers are likely to react passively rather than promoting it. Furthermore, a lack of guidelines and policies might lead to inconsistent practices. Thus, education and clear guidelines will help caregivers to manage specific sexual situations in an objective and respectful way. Information on sexuality among elderly individuals with dementia should become an integral part of nursing school curriculums and continuing educational programs and should be easily accessible for caregivers as well as residents and family members. Previous studies have been focused primarily on expressions and responses to these expressions and often used small samples. Further study should focus on the improvement of measurement via a system of classification of sexual expressions and responses to them. More investigation into the sexuality of elderly individuals with dementia in nursing homes is required for the development of effective nursing interventions.
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regarding sexuality and residents: A study in residential and nursing homes. Sexual and Relationship Therapy 2007; 22: 45–61. Guo M, Gao L, Zhang G et al. Prevalence of dementia and mild cognitive impairment in the elderly living in nursing and veteran care homes in Xi’an, China. Journal of Neurological Sciences 2012; 312: 39–44. Lithgow S, Jackson GA, Browne D. Estimating the prevalence of dementia: Cognitive screening in Glasgow nursing homes. International Journal of Geriatric Psychiatry 2012; 27: 785–791. Ginsberg TB, Pomerantz SC, Kramer-Feeley V. Sexuality in older adults: Behaviours and preferences. Age and Ageing 2005; 34: 475–480. Hajjar RR, Kamel HK. Sexuality in the nursing home, part 1: Attitudes and barriers to sexual expression. Journal of American Medical Directors Association 2003; 4: 152–156. Benbow SM, Beeston D. Sexuality, aging, and dementia. International Psychogeriatrics 2012; 24: 1026–1033. Silverstone B, Wynter L. The effects of introducing a heterosexual living space. The Gerontologist 1975; 15: 83–87. White CB. A scale for the assessment of attitudes and knowledge regarding sexuality in the aged. Archives of Sexual Behavior 1982; 11: 491–502. Bauer M. Their only privacy is between their sheets: Privacy and the sexuality of elderly nursing home residents. Journal of Gerontological Nursing 1999; 25: 37–41. Schreiner AS, Yamamoto E, Shiotani H. Agitated behavior in elderly nursing home residents with dementia in Japan. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences 2000; 55: 180–186. Ryden MB. Aggressive behavior in persons with dementia who live in the community. Alzheimer Disease and Associated Disorders 1988; 2: 342–355. Devanand DP, Brockington CD, Moody BJ et al. Behavioral syndromes in Alzheimer’s disease. International Psychogeriatrics 1992; 4 (Suppl. 2): 161–184. Stubbs B. Displays of inappropriate sexual behaviour by patients with progressive cognitive impairment: The forgotten form of challenging behaviour? Journal of Psychiatric and Mental Health Nursing 2011; 18: 602–607. Alagiakrishnan K, Lim D, Brahim A et al. Sexually inappropriate behaviour in demented elderly people. Postgraduate Medical Journal 2005; 81: 463–466. Kamel HK, Hajjar RR. Sexuality in the nursing home, part 2: Managing abnormal behavior—legal and ethical issues. Journal of the American Medical Directors Association 2004; 5: S48–S52. Ehrenfeld M, Bronner G, Tabak N, Alpert R, Bergman R. Sexuality among institutionalized elderly patients with dementia. Nursing Ethics 1999; 6: 144–149. Joanna Briggs Institute. Reviewers’ Manual. Adelaide: Joanna Briggs Institute, University of Adelaide, 2011.
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19 Zeiss AM, Davies HD, Tinklenberg JR. An observational study of sexual behavior in demented male patients. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences 1996; 51: M325–M329. 20 Holmes D, Reingold J, Teresi J. Sexual expression and dementia. Views of caregivers: A pilot study. International Journal of Geriatric Psychiatry 1997; 12: 696–701. 21 Archibald C. Sexuality, dementia and residential care: Managers report and response. Health and Social Care in the Community 1998; 6: 95–101. 22 de Medeiros K, Rosenberg PB, Baker AS, Onyike CU. Improper sexual behaviors in elders with dementia living in residential care. Dementia and Geriatric Cognitive Disorders 2008; 26: 370–377. 23 Tzeng YL, Lin LC, Shyr YI, Wen JK. Sexual behaviour of institutionalised residents with dementia: A qualitative study. Journal of Clinical Nursing 2009; 18: 991–1001. 24 Shuttleworth R, Russell C, Weerakoon P, Dune T. Sexuality in residential aged care: A survey of perceptions and policies in Australian nursing homes. Sexuality and Disability 2010; 28: 187–194. 25 Knight C, Aldeman N, Johnson C, Green S, Birkett-Swan L, Yorstan G. The St Andrew’s Sexual Behavioral Assessment (SASBA): Development of a standardised recording instrument for the measurement and assessment of challenging sexual behavior in people with progressive and acquired neurological impairment. Neuropsychological Rehabilitation 2008; 18: 129–159. 26 Archibold C. Sexuality and dementia: The role dementia plays when sexual expression becomes a component of residential care work. Alzheimer’s Care Quarterly 2003; 137– 148. 27 Series H, Degano P. Hypersexuality in dementia. Advances in Psychiatric Treatment 2005; 11: 424–431. 28 Bardell A, Lau T, Fedoroff JP. Inappropriate sexual behavior in a geriatric population. International Psychogeriatrics 2011; 23: 1182–1188. 29 Rosen T, Lachs MS, Pillemer K. Sexual aggression between residents in nursing homes: Literature synthesis of an underrecognized problem. Journal of the American Geriatrics Society 2010; 58: 1970–1979. 30 Ávila A, Cardona X, Martín-Baranera M, Bello J, Sastre F. Impulsive and compulsive behaviors in Parkinson’s disease: A one-year follow-up study. Journal of the Neurological Sciences 2011; 310: 197–201. 31 Hassan A, Bower JH, Kumar N et al. Dopamine agonisttriggered pathological behaviors: Surveillance in the PD clinic reveals high frequencies. Parkinsonism and Related Disorders 2011; 17: 260–264. 32 Raja M, Bentivoglio AR. Impulsive and compulsive behaviors during dopamine replacement treatment in Parkinson’s disease and other disorders. Current Drug Safety 2012; 7: 63–75.
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33 Buhr GT, White HK. Difficult behaviors in long-term care patients with dementia. Journal of the American Medical Directors Association 2006; 7: 180–192. 34 Haddad PM, Benbow SM. Sexual problems associated with dementia: Part 1: Types of problems and their consequences. International Journal of Geriatric Psychiatry 1993; 8: 547–551. 35 Wallace M, Safer M. Hypersexuality among cognitively impaired older adults. Geriatric Nursing 2009; 30: 230–237. 36 Teaster PB, Roberto KA. Sexual abuse of older adults: APS cases and outcomes. The Gerontologist 2004; 44: 788–796. 37 Burgess AW, Dowdel EB, Prentky RA. Sexual abuse of nursing home residents. Journal of Psychosocial Nursing and Mental Health Services 2000; 38: 10–18. 38 Lichtenberg PA, Strzepek DM. Assessments of institutionalized dementia patients’ competencies to participate in intimate relationships. The Gerontologist 1990; 30: 117–120. 39 Johnson C, Knight C, Alderman N. Challenges associated with the definition and assessment of inappropriate sexual
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behaviour amongst individuals with an acquired neurological impairment. Brain Injury 2006; 20: 687–693. Higgins A, Barker P, Begley CM. Hypersexuality and dementia: Dealing with inappropriate sexual expression. British Journal of Nursing 2004; 13: 1330–1334. Kuhn DR, Greiner D, Arseneau L. Addressing hypersexuality in Alzheimer’s disease. Journal of Gerontological Nursing 1998; 24: 44–50. Loue S. Intimacy and institutionalized cognitive impaired elderly. Care Management Journals 2005; 6: 185–190. Roach S. Sexual behavior of nursing home residents: Staff perceptions and responses. Journal of Advanced Nursing 2004; 48: 371–379. Ozkan B, Wilkins K, Muralee S, Tampi RR. Pharmacotherapy for inappropriate sexual behaviors in dementia: A systematic review of literature. American Journal of Alzheimer’s Disease and Other Dementias 2008; 23: 344–354. Mayers KS. Sexuality and the demented patient. Sexuality and Disability 1998; 16: 219–225.
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International Journal of Nursing Practice 2014; ••: ••–••
LITERATURE REVIEW
An integrated literature review on sexuality of elderly nursing home residents with dementia Kiyoko Makimoto RN PhD Professor, Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan
Hee Sun Kang RN PhD Professor, Department of Nursing, Red Cross College of Nursing, Chung-Ang University, Seoul, Korea
Miyae Yamakawa RN PhD Assistant Professor, Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan
Rie Konno RN PhD Adjunct Faculty, Division of Health Sciences, Osaka University Graduate School of Medicine, Suita, Japan
Accepted for publication October 2013 Makimoto K, Kang HS, Yamakawa M, Konno R. International Journal of Nursing Practice 2014; ••: ••–•• An integrated literature review on sexuality of elderly nursing home residents with dementia This study presents an integrative literature review on sexuality among elderly people with dementia living in nursing homes. Original research studies published from 1980 to 2012 were included in the review. Sexual expressions ranged from holding hands to sexual intercourse. These behaviours were sometimes directed towards caregivers while the latter were providing daily care. Sexual expressions were sometimes assessed and reported subjectively without context. Responses to sexual expressions varied from positive to negative. Some sexual expressions were dealt with inconsistently, and some were considered to be problematic due to a lack of policy or privacy. It is important to assess and report sexual expressions objectively, preferably with a standardized form, and to consider context in doing so. Effort is required to provide privacy for residents’ sexual expressions and a safe environment for all residents and caregivers. It is important that a policy and guidelines for care be established regarding issues related to sexuality among elderly people with dementia. Key words: aged, behaviour, dementia, nursing homes, sexuality.
INTRODUCTION As the average lifespan increases, the elderly population is anticipated to increase. It is estimated that the number of people over the age of 60 will be 2 billion by the year 2050. In addition, the number of people suffering from
Correspondence: Hee Sun Kang, Department of Nursing, Red Cross College of Nursing, Chung-Ang University, 221 Heuksukdong Dongjakku, Seoul 156-756, Korea. Email: [email protected] doi:10.1111/ijn.12317
dementia was estimated at 35.6 million in 2011 and is predicted to reach 65.7 million by 2030.1 A significant proportion of elderly people with varying levels of cognitive impairment will need to be cared for within a residential care home.2 Dementia is particularly common among institutionalized elderly individuals.3,4 The sexuality of the elderly has been the focus of increasing attention in recent years, and there appears to be growing recognition that sexual expression among elderly individuals is a natural part of healthy ageing. © 2014 Wiley Publishing Asia Pty Ltd
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Sexual expression among elderly people has been reported to decrease because of changes in sexual response associated with ageing, physical illness, adverse effects of medication, or lack of able partner or interest.5,6 However, some studies have revealed that institutionalized elderly people exhibit sexual interest and activity7 and are likely to benefit from sexual intimacy.8,9 Sexuality continues to be a meaningful and important part of the lives of elderly people with dementia living in care homes.10 The rights to privacy and sexual expression are increasingly acknowledged as important parts of life among elderly people with dementia living in care homes. Sexual behaviours or expressions of elderly individuals with dementia are often considered as a subdimension of aggressive or agitated behaviours.11,12 Thus, sexual behaviours such as making verbal or physical sexual advances or exposing genitals might be evaluated as a subset of agitated behaviours,11 whereas sexual behaviours such as making obscene gestures, touching the body parts of another person, hugging, intercourse or kissing might be evaluated as a subset of aggressive behaviours.12 Furthermore, sexual behaviours among elderly people with dementia have traditionally been regarded as problematic examples of disinhibited,13 inappropriate,14 hypersexual or aggressive behaviours.15,16 Caregivers taking care of elderly people with dementia should expect sexual behaviours to occur and should respond in a sensitive and informed manner that protects the sexual rights of residents with dementia.15 Increased understanding of sexual expression among elderly residents with dementia might have positive impacts on the ability of caregivers to deal with sexual expressions among residents17 and help inform them about the sexual needs of residents with dementia. The purpose of the current study was to provide an integrated literature review on sexuality among elderly people with dementia in nursing homes.
(28), Web of Science (19) and PsycINFO (13). Articles from each database search were screened on the basis of titles, abstracts and full text. Articles were excluded if they were not (i) primary, empirical research with a quantitative, qualitative or mixed-method design; (ii) concerned with sexuality; (iii) concerned with institutionalized elderly individuals with dementia; and (iv) published in English. A total of 80 articles (27 from PubMed, 24 from CINAHL, 17 from Web of Science and 12 from PsycINFO) were excluded because of language restrictions (1 French and 1 Chinese) or because they were not research-based or lacked relevance to the aims of the review (78). From the remaining 11 articles, eight articles were used in the final analysis after exclusion of three duplicates. Relevant data were gathered together and classified into two categories: sexual expressions and responses to sexual expressions.
METHODS
The literature search yielded eight relevant publications. Six studies used quantitative research methods and two used qualitative ones (Tables 2,3). Three studies were conducted in the USA, and the remaining studies were carried out in five different countries: the UK, Australia, Canada, Israel and Taiwan. Five studies specifically focused on sexuality among institutionalized elderly people with dementia.17,19,21–23 The other three studies focused on both elderly people with dementia and those without20,24 or on dementia among elderly individuals residing in nursing homes or communities.15
We conducted a search for relevant articles using four databases (PubMed, Web of Science, CINAHL and PsycINFO), selecting studies published between January 1980 and May 2012. The following keywords were used in combination: ‘sexuality’, ‘sexual behavior’, ‘sexual activity’, ‘nursing home’, ‘residential home’, ‘care home’, ‘long-term (care) facilities’, ‘aged’ and ‘dementia’. In addition, we used the references of related articles to identify additional relevant studies. Initial searches yielded a total of 91 articles from PubMed (31), CINAHL © 2014 Wiley Publishing Asia Pty Ltd
Quality appraisal The eight studies selected were examined for methodological quality by two independent reviewers prior to inclusion in this review, and disagreements were resolved by consensus. Two different critical appraisal checklists for quantitative and qualitative studies published by the Joanna Briggs Institute (JBI) were used.18 The quantitative studies were examined using the standardized critical appraisal checklist from the JBI Meta-Analysis of Statistics, Assessment and Review Instrument for descriptive studies. This checklist consists of nine items. The qualitative studies were examined using the Qualitative Assessment and Review Instrument critical appraisal checklist. This checklist consists of 10 items. Table 1 summarizes the quality assessment. No study was excluded based on the evaluation of methodological quality.
RESULTS Study characteristics
Y Y N/A N Y N/A N/A Y Y
N Y N/A Y Y N/A N/A Y Y
Y Y
N Y N/A N N/A N/A N/A Y Y
N Y N/A Y Y Y N/A Y Y
Y Y N/A Y Y N/A N/A Y Y
Y Y N/A Y Y N/A N/A
U Y Y Y Y N N Y Y Y
U Y Y Y Y N N Y Y Y
Zeiss Holmes Archibald21 Ehrenfeld Alagiakrishnan de Medeiros Tzeng Shuttleworth et al.19 et al.20 et al.17 et al.15 et al.22 et al.23 et al.24
Joanna Briggs Institute Meta-Analysis of Statistics, Assessment and Review Instrument. ‡ Joanna Briggs Institute Qualitative Assessment and Review Instrument. N, no; N/A, not applicable; U, unclear; Y, yes.
†
Quantitative studies† 1. Was study based on a random or pseudo-random sample? 2. Were the criteria for inclusion in the sample clearly defined? 3. Were confounding factors identified and strategies to deal with them stated? 4. Were outcomes assessed using objective criteria? 5. If comparisons are being made, was there sufficient description of the groups? 6. Was follow-up carried out over a sufficient time period? 7. Were the outcomes of people who withdrew described and included in the analysis? 8. Were outcomes measured in a reliable way? 9. Was appropriate statistical analysis used? Qualitative studies‡ 1. Congruity between the stated philosophical perspective and the research methodology 2. Congruity between the research methodology and the research question or objectives 3. Congruity between the research methodology and the research methods used to collect data 4. Congruity between the research methodology and the representation and analysis of data 5. Congruity between the research methodology and the interpretation of results 6. Statement locating the researcher culturally or theoretically 7. Influence of the researcher on the research, or vice-versa, is addressed 8. Participants, and their voices, are adequately represented 9. The research is ethical according to current criteria or, for recent studies, there is evidence of ethical approval by an appropriate body 10. Conclusions drawn in the research report do appear to flow from the analysis, or interpretation, of the data
Item
Table 1 Methodological quality of the reviewed studies (n = 8)
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Table 2 Studies included in literature review Design
Subject
Data collection
Outcome
Quantitative Qualitative Resident Caregiver Questio- Obser- Interview Record Sexual Response Other & other nnaire vation review expression Zeiss et al.19 Holmes et al.20 Archibald21 Ehrenfeld et al.17 Alagiakrishnan et al.15 de Medeiros et al.22 Tzeng et al.23 Shuttleworth et al.24
√ √ √ √ √
√
√
√
√ √
√ √
√
√ √ √ √
√ √
One of the qualitative studies used grounded-theory methodology,23 and the other used telephone interviews with content analysis.24 The study using grounded-theory methodology addressed trustworthiness,23 but the other study did not provide information about the rigour of the study. All quantitative studies were observational studies. Sample size varied widely among the quantitative studies we selected, ranging from 23 to 114 participants. Response rates, when mentioned, varied from 40%20 to 85%.21 The samples of three studies17,19,23 consisted of elderly with dementia, caregivers and others. Caregivers included registered nurses and care aides, managers and others. Two studies were reviews of the records of patients with dementia.15,22 Two studies involved observational data collection. In studies using direct observation,17,19 nursing staff or researchers were requested to record the sexual behaviour of residents exhibiting moderate dementia through continuous observation for 14 weeks17 or by time sampling with intermittent observation of behaviour.19 In the observational study, reliability checks and coder training were reported.19 Six studies provided information on sexual expression,15,17,19,21–23 and five studies provided information about others’ responses to sexual expression.17,20,21,23,24 Sexual expressions were examined using a checklist17,21 or a standardized coding sheet19 or were directly recorded.15,22,23 One observational checklist © 2014 Wiley Publishing Asia Pty Ltd
√
√
√
√
√ √ √
√
√
√
√
√
√ √
√
√ √ √ √
√ √
√
included a detailed description of events, whether sexual behaviours were directed towards males or females, to whom they were directed (patients, staff, visitors or family) and the activity type, including a list of sexual acts.17 Two studies reported the reliability or validity of methods for examining sexual behaviours.17,19 Responses from staff, other residents and family members17 to sexual expressions by residents with dementia were measured using a form developed to record responses,17 and one study used a scale of attitudes towards sexual expressions measuring two factors: positive and supportive orientations and restrictive ones.20 Responses from people nearby when the behaviour occurred, family members, visitors and formal caregivers were coded as positive, neutral or negative.23 In one study, vignettes were used to obtain information, and responses were classified into five types: ignore; observe; observe, then intervene; intervene immediately; and other.21 Background information on residents with dementia, including information on age, marital status, sex,22 education,23 major illness and medication in use, was recorded.19 Regarding the severity of dementia, one study divided dementia into mild, moderate and severe categories based on Mini-Mental State Examination (MMSE) score,22 and another distinguished stages I and II.17 The other studies did not specify the severity of dementia.
To examine sexual behaviour
To measure the attitude of health professionals towards sexuality and sexual expression To examine types and prevalence of sexual expression by people with dementia and staff responses
Zeiss et al.19 (USA)
Holmes et al.20 (USA) Cross-sectional survey
Postal survey
Observational study
Study design
Shuttleworth et al.24 (Australia)
To examine how nursing managers perceive and respond to sexual expression of elderly residents and whether facilities have any written policy
Qualitative
Observation
Method(s)
Nursing managers (n = 198)
Outcome
—
— Review of sexual behaviour in the care records; thematic analysis Purposive sampling; Institutional review board approval, interviews with consent from caregivers and subjects and observation of family/guardian residents for 3 days Not addressed Semi-structured telephone interview
Retrospective medical record review
Permission from participants by telephone
• Types of sexual behaviour: appropriate, ambiguous, inappropriate Consent from • Response: positive, neutral, negative guardian with power of attorney • 18% of patients displayed a sexually inappropriate behaviour at some time • Ambiguous behaviours more frequent than inappropriate Not addressed • Respondents held a generally positive orientation towards residents’ sexual expression
Consent/approval
• Positive views about the rights of residents for sexual expression, but few facilities had any formal policies
• Predisposing factors to sexual expression: opportunity, presence of cooperative target, personal space with privacy • Types of sexual expression considered: physically intimate touch; sexual expression without touching others and sexual talk • Responses: neutral, negative, positive
• Twenty-seven subjects (65.7%) showed verbally inappropriate behaviour and 36 (87.8%) showed physically inappropriate behaviour • 1.8% showed sexually inappropriate behaviour • Three types of behaviour were evident: (i) intimacy-seeking; (ii) disinhibited; (iii) non-sexual • Behaviour type was associated with dementia severity
• Four main types of sexual expression considered: (i) behaviours shown by both male and female residents with dementia; (ii) those shown by male residents with dementia; (iii) those shown by female residents with dementia; and (iv) those shown by male residents without dementia • The most common form: male and female residents holding hands (65%) • Responses: some types of sexual expression appear to be of more concern than others: (sexual expressions towards staff; exploitation and coercion; public sexual expression) • Sexual behaviour: mostly heterosexual and ranged from love and Institutional ethics Observations of caring to romance and eroticism committee sexual behaviour approval, consent • Reactions varied, others were accepting of love and care but often by 25 nurses over objected to erotic behaviour from family 14 weeks
Administrators, clinicians, social Postal questionnaire workers and others (n = 114) Managers (n = 23) Postal questionnaire
Male patients with dementia (n = 40)
Population
Ehrenfeld et al.17 To observe and categorize manifestations of Observational Patients with stage II (90%) & study stage I (10%) dementia (Israel) sexuality among institutionalized older (n = 48) people with dementia and to analyse the reactions of other patients, staff and family members Alagiakrishn-an To determine the prevalence, aetiology and Retrospective Cognitively impaired elderly 15 et al. people with sexually cross-sectional treatment profile of abnormal or inappropriate behaviour study inappropriate sexual behaviour (Canada) (n = 41) de Medeiros Elders with dementia (n = 40) Retrospective To examine associations of sexual et al.22 (USA) case–control behaviours with several resident study characteristics, including gender, marital status and dementia type and severity Tzeng et al.23 Male residents (n = 12) and To explore the characteristics and contexts Qualitative their caregivers (n = 12) (Taiwan) of sexual behaviours (ground theory)
Archibald21 (Scotland, UK)
Aim(s)
Author(s) and country
Table 3 Summary of studies included in the literature review
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Regarding the ethical aspects of the study, several studies obtained approval from the appropriate institutional review board (IRB) or an ethics committee17,22,23 and informed consent from family or guardians or patients. One study received IRB approval and consent from patients, families and guardians holding power of attorney.23 In contrast, one observational study received consent only from guardians holding power of attorney or conservatorship for the patient.19 Institutional ethical permits were obtained for studies that reviewed care records.15,22
Sexual expressions and responses to them The main themes that emerged from the literature reviewed were sexual expressions and responses to them.
Sexual expressions Sexual expressions as exhibited by people with dementia in residential care were typically examined by direct observation,17,19,23 by record review15,22 or by interviewing care staff.21 A broad spectrum of sexual expressions have been reported among elderly patients with dementia, including holding hands, cuddling, masturbating in public, touching others’ genitals in public, sexual intercourse, sexual expression without touching others and sexual language.17,21,23 The most common physical behaviour reported in one study was inappropriate touching of the opposite sex (87.8%).15 In another study, individual stroking of one’s own genitals in a private space was the most common behaviour.23 Sexual expressions were categorized in different ways in different studies, as follows: (i) into acts ranging from those expressing love and caring to those involving romance, eroticism (such as compulsive masturbation) or aggressiveness;17 (ii) into sexual acts (with or without contact with others) and verbal sexual behaviours;23(iii) into appropriate, ambiguous and inappropriate sexual behaviours;19 and (iv) into intimacy-seeking behaviour and disinhibited, rude and intrusive behaviour.22 However, difficulty in classifying some expressions was also noted.17 Sexual behaviour was found to be mostly heterosexual15,17 and directed towards residents and visitors17 as well as caregivers. Female caregivers were commonly inappropriately approached sexually or touched on the breasts or other body parts against their will by male residents.15,21,23 Sexual expression towards caregivers on the part of nursing home residents occurred in diverse © 2014 Wiley Publishing Asia Pty Ltd
situations. The most frequently reported situations involved personal-care activities such as washing, bathing, dressing or feeding.23,24
Responses to sexual expressions The responses of other residents, caregivers and family members to sexual expression on the part of residents varied, ranging from acceptance of expressions of love and care to objection to erotic behaviours.17 Whereas some people reported positive and permissive attitudes, others reported negative attitudes towards the sexual expressions of residents.19,23 In one study, almost half of the nursing home staff indicated that even behaviours such as hugging and holding hands were difficult for them to deal with.20 In the same study, over 30% of clinicians and social workers and over 60% of administrators believed that genital contact between residents with dementia should be discouraged.20 Some caregivers showed a more tolerant attitude toward residents’ sexual expression.20,21 Residents and spouses were less tolerant than caregivers of residents’ masturbating, engaging in sexual relationships, viewing sexual materials or making sexual advances toward staff. Some caregivers or managers reported fear that the likelihood of involuntary sexual involvement might lead to legal action against them and the nursing home.17,20 Female caregivers reported that they felt shameful or sexually harassed when male residents touched or gestured to them sexually.17,23 Family members’ reactions to sexual expressions on the part of residents varied. Ehrenfeld et al.17 reported that residents’ adult children commonly reacted negatively to their parents’ erotic sexual involvement and demanded their protection when it was suspected they were being sexually abused. Some staff believed that family members should be contacted at the first hint of sexual expression or interest shown by the resident or towards the resident.20 In addition, some managers believed that it was their responsibility to seek families’ permission for relationships between residents to continue, regardless of female residents’ mental competency.21 Behavioural policies differed among institutions,23,24 and sexual expressions were dealt with in inconsistent or informal ways.24 One institution tolerated open sexual behaviour such as masturbation, but this behaviour was not supported in another, religious institution.23 In addition, caregivers’ reactions to sexual behaviour among elderly individuals with dementia differed when they interpreted those behaviours as non-sexual or due to a
Sexuality of elderly with dementia
lack of privacy. For example, some behaviours, such as getting into another person’s bed, were regarded as ‘wanting to be close to another human being as opposed to a sexual advance’.17 When a lack of privacy resulted in caregivers’ witnessing residents’ sexual activity, some caregivers tried to promote privacy by using a ‘do not disturb’ sign on the door,24 blocking the glass windows of residents’ doors using calendars23 or taking the residents to their rooms when public masturbation occurred.21
DISCUSSION Sexual expressions The current review reveals that sexual expressions among elderly people with dementia in nursing homes vary widely and that caregivers and residents in nursing homes are commonly confronted with a broad spectrum of sexual expressions. These range from verbal to physical
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sexual expressions. Our results show a lack of consideration of context in assessment of sexual expressions and interpretative rather than descriptive reporting of sexual expressions. These findings suggest that context should be reported in future studies, allowing more objective and consistent identification of sexual expressions.25 In this review, the tools used to examine sexual expressions varied. Inconsistent assessing and reporting systems cause difficulties in comparing research results and using them for evidence-based nursing practice. Thus, the development of an inventory for clinical and research use regarding sexual expression among elderly people with dementia would be helpful. There is a need for a taxonomy of sexual expressions and responses to them. Although proposing a taxonomy of sexual expressions is beyond the scope of this paper, we do propose a comprehensive inventory of sexual expressions (Table 4). The variables reviewed are structured
Table 4 Inventory for reporting sexual expressions and responses Category
Variable
Characteristics of the initiator
• • • • • • • • • • • • • • • • •
Age, gender, marital status, educational level Major diagnoses, severity of dementia Medication Health conditions (pain, skin condition) Personal care (bathing, dressing, feeding) Group activity Others or none Staff, resident, families, visitor None Verbal Physical contact (hugging, touching, kissing, holding hands) Non-physical contact (exposing breast or genitals) Time Public Private Other resident’s room Age, gender
• • • • • •
To ignore To observe To intervene (specify) To ignore and continue To accept the intervention To resist the intervention
Antecedent
Behaviours
Behaviour’s target person Type of behaviour with specific details
Time and place
Consequence
Characteristics of the caregiver responding to sexual expressions Caregiver’s response
Resident’s response to caregiver’s response
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according to the ABC (Antecedents–Behaviour– Consequences) approach, as suggested in previous studies.26,27 This inventory could serve as a reporting form for staff members or be used to collect data for research purposes. Our reasons for including the specific items found on the inventory, as well as prevention strategies, are discussed below.
Characteristics of initiators Characteristics of initiators recorded include basic demographic information, information related to dementia and health conditions (Table 4). A major diagnosis of dementia is important for understanding the pathological changes affecting sexual expressions that are more commonly reported in cases of severe dementia.28 This is especially true in cases of dementia that affect the frontal or temporal lobe, the area of the brain regulating libido.27,29 Certain sexual expressions could also be side effects of dopaminergic agonists used in the treatment of Parkinson’s disease.30–32 Health conditions need to be explored because this might reveal an absence of sexual intent in apparently sexual behaviours. For example, residents with dementia might react to pain or uncomfortable clothing by publicly undressing or engaging in genital touching.33,34
Antecedents The antecedents for sexual expression might not always be obvious. Nevertheless, identifying antecedents can sometimes prevent behaviour by limiting exposure to triggers. Some sexual expressions exhibited by male residents towards female caregivers result from the misinterpretation of staff care activities, such as dressing or bathing, as sexual advances.21,23 In order to prevent this type of misinterpretation, it is important to clearly explain to the resident what will be done before providing nursing care. Strategies such as switching caregivers or using same-sex caregivers33,35 could also be used. Group activities are another antecedent, as they often provide an opportunity for physical touching.23 People with severe dementia are often vulnerable to sexual abuse because they are unable to assess risks and refuse sexual advances.34 Sexual abuse by fellow residents is more common among women residing in nursing homes36 and women with cognitive deficits.29,37 Thus, it is important to acknowledge the possibility of increased risk among vulnerable residents and to take steps to protect these residents. Strategies such as placing high-risk resi© 2014 Wiley Publishing Asia Pty Ltd
dents near a nurse’s station36 and closely observing them, especially during the night, when staffing is low, are recommended.7,29 Assessing the competency of residents with dementia to engage in a sexual relationship is complex. However, it is suggested that residents be assessed as to their capacity to say no to unwanted sexual contact and to identify others; this ensures that they are able to prevent the misidentification of someone making sexual advances as a spouse or partner.38
Behaviours Behaviours can be assessed according to three elements: target person, type of behaviour, and time and place (Table 4). Negative terms labelling behaviours, such as ‘inappropriate’ or ‘abnormal’,14,35,39 are based on observers’ subjective views.7,40 To respect and support the sexual expression of elderly individuals with dementia, efforts to avoid using negative terms and to encourage the use of unbiased, objective terms are important.
Consequences Items related to consequences can be assessed according to the following three elements: characteristics of caregivers responding to sexual expressions, caregiver’s response and resident’s response to the caregiver. Some caregivers responded to sexual expression by intervening immediately or after observing the behaviours.21 Some caregivers provided alternatives with the goal of decreasing engagement in sexual acts in public or providing privacy. Modifying clothing to open at the back to discourage removal and assigning manual activities such as folding towels have been suggested as techniques to discourage behaviours such as disrobing, exposing and fondling the genitals and public masturbation.15,41 However, modified clothing that is difficult to remove might negatively affect self-care. Thus, we recommend that caregivers pay close attention to additional assistance that might be needed for adequate self-care. Other responses reported in this review and in previous studies were ‘pulling curtains around the bed’41 to promote privacy, redirecting a person who is masturbating in public to a private area and redirecting persons who have entered another resident’s bed back to their own room.41 The consequence category is the least welldeveloped category in this review, as research to date has mainly focused on sexual behaviour. Extensive work is needed in order to evaluate appropriate interventions. In some studies, staff responses to sexual expressions are classified as ‘positive’, ‘negative’ or ‘neutral.’ This
Sexuality of elderly with dementia
type of classification scheme requires interpretation, and descriptions of specific responses are necessary for creating an accurate inventory.
Implications for practice and future research needs This review reveals a need for development of policies or guidelines to address sexuality issues among elderly people with dementia15 because caregivers often responded to similar sexual expressions in inconsistent or informal ways in the absence of policy or guidelines.24 Legal advice is necessary to cover legal issues that should be considered and to prevent the institution and caregivers from facing legal trouble.42 Education of caregivers is also essential to improve their responses to residents’ sexual behaviours. Caregivers who felt uncomfortable about sexual issues tended to have less permissive attitudes,43 which likely caused them to have difficulties with residents’ sexual expressions.44 Thus, to create a supportive environment, caregivers need to develop a positive attitude toward sexual expression on the part of residents with dementia. Education can reduce caregivers’ discomfort, encouraging positive attitudes and improving their ability to deal with residents’ sexual expressions by promoting an understanding of the sexual needs of elderly individuals with dementia.15,17,45 The other issue is the family’s (or legal guardian’s) wishes, which were important in determining whether to allow sexual relationships among elderly individuals with dementia. Whether or not family members should be notified about sexual expressions of elderly individuals with dementia is a complex issue that can lead to conflict between the basic rights of residents and their families’ desire to protect them. To minimize conflict, the sexual consent capacity of residents should be assessed periodically or when required. In addition, residents, as well as family members or legal guardians, should be informed about the possibility of intimate relationships in advance, and clear information should be included in policies related to sexuality. To promote awareness of sexuality in elderly individuals with dementia, relevant information should be included in or linked to by the institution’s website. Education and counselling through websites and in person might be helpful for people wishing to know more. Furthermore, information about institutional policy regarding residents’ sexual expression should be offered to residents, visitors and family members on admission
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and on an ongoing basis. For future research, collection of data from multiple sources is necessary for understanding of the variety of sexual expressions and responses to them, as each source has its own limitations.
Conclusion The sexual expressions exhibited among individuals with dementia and responses to those expressions vary widely. Assessing and reporting of sexual expressions should be performed objectively using a comprehensive inventory. Both caregivers and other residents are at risk of being victims of residents’ sexual acts. Efforts to identify and prevent the possibility of sexual harassment or abuse early are important. Negative attitudes on the part of caregivers or family members and a lack of privacy might be barriers to the sexual expression of residents. Safe and supportive environments in which elderly individuals with dementia can express their sexuality are needed. Caregivers and managers often fear being involved in legal situations. Although support for sexual behaviour for elderly individuals with dementia is desirable, if legal support with clear guidelines is not available, caregivers are likely to react passively rather than promoting it. Furthermore, a lack of guidelines and policies might lead to inconsistent practices. Thus, education and clear guidelines will help caregivers to manage specific sexual situations in an objective and respectful way. Information on sexuality among elderly individuals with dementia should become an integral part of nursing school curriculums and continuing educational programs and should be easily accessible for caregivers as well as residents and family members. Previous studies have been focused primarily on expressions and responses to these expressions and often used small samples. Further study should focus on the improvement of measurement via a system of classification of sexual expressions and responses to them. More investigation into the sexuality of elderly individuals with dementia in nursing homes is required for the development of effective nursing interventions.
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