2 Registered Nurses Experiences of the Care for Persons with
Dementia Expressing their Sexuality
ABSTRACT
There may be challenges to express sexuality in nursing homes.
Aim: The aim of this study was to explore Registered Nurses experiences of the care for persons with dementia living in nursing homes and expressing their sexuality.
Design/methods: A qualitative inductive design was adopted; data was collected through semi-structured interviews and analyzed through content analysis.
Results: The analysis reflected three categories. 1) To care with a focus on the person- The registered nurses expressed a need for and a will to protect the integrity of the person and consequently the right to sexual expressions. 2)To deal with different reactions, respond to nursing staff and relatives - The registered nurses experience discomfort, insecurity,
frustration, distressed and embarrassment whenconfronted with sexual expressions in people with dementia. 3)To want more competence development - The registered nurses expressed need to educate and inform not only themselves but also the nursing staff and relatives. Conclusion: The registered nurses experience that care for persons with dementia living in nursing homes and expressing their sexuality was challenging to be able to provide good and safe care.
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INTRODUCTION
Sexuality is an important part of life and the expression of each and everyone’s sexuality is a human right as every human has the right to sexual freedom and accordingly make their own decisions upon the matter (World Association for Sexual Health, 2017). Especially person in old age with dementia is still conditioned by prejudices and a form of stereotyped vision, considering older people as asexual (Dominguez and Barbagallo, 2016).Therefore ,it may be a challenges for registered nurses working in nursing homes to handle persons with dementia to express their sexuality.
BACKGROUND
In Sweden, 130 000-150 000 persons are diagnosed with dementia, and 66 000 are living in nursing homes providing full-time social and medical care (The National Board of Health and Welfare, 2017). Registered Nurses (RN´s) are responsible for clinical decisions that offer person’s with dementia opportunities to improve, maintain or regain their health, manage health problems, illness or disability and achieve the best possible well-being and quality of life until death. Nursing staff may carry out the nursing actions after a written delegation and may be involved in the planning of these (SSF, 2017).
Sexuality is a basic human need, yet it still is in many ways a taboo subject not least when we talk about persons with dementia. The desire and longing for intimacy varies from person to person and is not automatically affected by a diagnosis of dementia. However, the disease can make it difficult to express one's sexuality. Issues related to consent and ethical demarcation can be complicated of dementia (Demenscentrum 2017).
A previous study by Alagiakrishnan et al, 2004 has shown that sexual expressions amongst persons with dementia living in nursing homes could be expressed either verbally or
physically. Sexual behavior such as public masturbation, hyperactive sexuality, and attempts to unwanted intercourse with other patients occur in every stage of dementia. RN´s face a wide range of experiences and emotions when confronted with in people with dementia expressions of sexuality and intimacy. A supportive approach is needed to guide nurses in dealing with these highly sensitive situations (Thys et al 2018).
However caregivers own values have impact on how nursing actions are carried out (Gott, 2005, Doll, 2012, Villar et al, 2014, Simpson et al, 2016).Although many nursing homes
4 continue to desire intimacy and sexual expression, they commonly perceive negative attitudes of nursing staff towards them as a major barrier to their sexual well‐being( Thys et al 2018). As mentioned above, it was important to explore RN´s experiences of the care for persons with dementia expressing their sexuality and to promote more open attitudes about sexual expression in persons with dementia, as sexuality is an essential and integrated part of being human.
AIM
The aim of this study was to explore RN´s experiences of the care for persons with dementia living in nursing homes and expressing their sexuality
DESIGN AND METHOD
This study has an inductive qualitative design, based on semi-structured interviews analyzed with content analysis.
Study setting
The study was conducted during 2018, with an inductive qualitative approach. The
participants in the study were ten RN´s employed in eight different nursing homes in southern Sweden. RN´s worked during the day and had the responsibility of caring for 20-40 patients one of these nursing homes only cared for people with dementia, while the other cared for people with a mix of diagnoses, with or without dementia. In these nursing homes, one to two RN’s where in charge of nursing.
Sample and recruitment
The author contacted nursing homes and inform about the aim of the study. The RN´s was included consecutively as they express their interest. The intention of the study was presented both in oral and written form, the RN´s and the manager of the nursing home gave their approval in writing to the interviews. Informed consent were obtained making sure the RN´s understood the information given in terms of the aim and setup of the study, as well as the opportunity to terminate the participation at any given moment.
The age of the RN´s ranged between 30-67 years (median 55) and they had worked as RN´s between 7-37 years (median 15).
5 Data collection
The data was collected through semi-structured interviews. Initially a pilot interview was conducted in order to ensure the quality of the questions. The pilot interview was included in the results. The ten interviews were based on the key question “What is your experience of caring for persons with dementia expressing their sexuality?” With follow-up questions such as, how did you handle it? What kind of emotions did it arise in you? Could you please
develop that? Do you have more similar situations to this one? In connection to the interviews there was a short summary of the conversation implemented in collaboration with the
informant a so-called member checks (Burnard, 1991). The interviews were recorded and transcribed ad verbatim by the first authors who also performed the interviews. The
interviews took place in the nursing homes where the RN’s worked and lasted from 29 – 62 minutes (Median 43 min).
Data analysis
The transcribed text was analyzed through Content Analysis by the author as described by Bengtsson (2016).Data Collection, transcription and analysis of the transcribed interviews was occur simultaneously. Content Analysis method and the interpretation of the material was conducted on a manifest and a descripted level. Four distinct stages of content analysis were used: the decontextualisation, the recontextualisation, the categorization, and the compilation (ibid.)
During The decontextualisation process, the authors familiarized themselves with the data, and read the transcribed text in order to obtain the sense of the whole. Meaningful units were identified and coded and a code list was established to secure the reliability. The aim was to find a reoccurring pattern in data and this process repeated several times. At each occasion, the process starts at a new place in the text to further strengthen the trustworthiness. The
recontextualisation, after the meaning units were identified, the researchers checked that all
aspects of the content had been enclosed in relation to the objective of the study and the material was coded.
The categorization, to commence the author begun to create categories. To extract the sense
of the data, the coded material was divided into broad groups, created from different intentions of the study. Quotes was intercalated in to the synthesis of the data material to additionally strengthen the validation and credibility of the analysis (Bengtsson, 2016) The categorization was finished when a realistic elucidation was reached. The compilation. The
6 data was collected from an as neutral perspective as was possible, whilst also considering the objectivity of the data (ibid). In order to allow the reader to get a quick overview of the summary of categories and sub categories, please see Table1.
Ethical considerations
Sexuality could be a sensitive subject, and there might be a risk for the RN´s feeling
embarrassed talking about the subject. Thefacts that emerged in the interviews was based on the persons with dementia and their behavior, which could lead to ethical reflections among the RN`s if it was right to share this information as the persons had not consented.No names were mentioned and the stories could not be traced to any single person. It was important to create an atmosphere of trust and confidence by listening and confirming when there were situations in the conversation that were difficult to talk about. Signed informed consent was obtained after the RN´s had read the information about the study. The study did not apply under the Codex (2018) set by the Swedish Research Council and therefore ethical approval was not needed.
RESULTS
The interviews revealed that RN´s found it difficult to know if they were doing the right thing in nursing situations and guidance to staff linked to sexual expression in people with
dementia. The RN´s expressed that respecting and defending sexual expression as well as practicing person-centered care were important in the care of persons with dementia
expressing their sexuality. The RN´s expressed a need for reflection, education and guidelines in the topic.
The following categories emerged from RN´s experiences 1) To care with a focus on the person 2) To deal with different reactions - respond to nursing staff and relatives and 3) To want more competence development in order to clarify the results the following Table 1 was developed.
Table 1 Registered nurses experiences of the care for persons with dementia living in nursing
7 To care with a focus on the person
It turned out that person-centered care was perceived as important for good quality in nursing. The RN´s highlighted the importance of safe care of good quality; the wellbeing of the person and in this, sexuality was an important aspect. As long as the RN´s were focused on the persons needs and showed respect for those needs, a good direction for how nursing was to be performed emerged and the result became beneficial for the person with dementia.
Defending and respecting sexual expressions
According to the RN`s there was a need for and a will to protect the integrity of the persons and consequently the right to sexual expressions. The performance of person-centered care was considered as an important part of safe care of good quality.
The importance of respecting the person’s sexual rights emerged. Although sexual expression is a human right, it often ended up in a dilemma. Person’s with dementia and their sexual expression could lead to situations where the persons was not able to see the consequence of their sexual expression. Sexual expressions such as masturbation were common among persons with dementia and if this was done in public, it was important to divert to a secluded place. The RN´s expressed difficulties to, on one hand, facilitate the right of the persons to express his or her sexuality and, on the other hand, protect them from the consequences. In some cases, the RN´s felt the need to inform the nursing staff that the persons were entitled to their sexuality, and that the attitudes and values of the nursing staff were paramount.
“Our values should not be in control. They have all the rights. There could be a lot of ethical
To care with a focus on the person •Defending and respecting sexual expressions •Transmitting positive attitudes •Inadequate documentation To deal with different reactions‐ respond to nursing staff and relatives •RN's emotions •Emotions of Nursing staff and relatives To want more competence development •Need for guidelines and guidance •Need for knowledge •Supporting and involve relatives
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opinions and thinking among the staff. Some of them thinks its unpleasant and weird. The RN´s roll in this is to balance. It’s all about care and a good way to take care of people so that they can feel good.” (Interview 10)
Transmitting positive attitudes
The RN´s experienced that it was useful to transmit positive attitudes to nursing staff and not to dramatize the topic of person’s expression of their sexuality and strengthen the nursing staff in their care, when the person expressed their sexuality. This was done by the RN´s showing and highlighting situations when persons expressed their sexuality and that in turn brought joy to the nursing staff caring for the persons with dementia. It was important for the RN´s to transfer this joy by communicating situations in order for the nursing staff to get a positive outlook on the person’s expression of their sexuality.
“There was a lady with dementia and a man with dementia which both lived in the same care
facility. They sat together in the sofa and held each other’s hands as they watched the tv. He also went to her room. It was sweet. They were so in love with each other. Yes, it was pretty” (Interview 6)
Inadequate documentation
Another important issue expressed by the RN´s was the uncertainty about how to document sexuality, and consequently there was a lack of documentation regarding the person’s
sexuality. Sexuality was included in the documentation system, but there was poor knowledge of how and when sexual expressions should be documented. The lack of documentation was perceived as an obstacle in the nursing process and a risk for not performing person centered care.
“It is not often we document something about sexuality it is not a topic that we address” (Interview 2)
“In our documentation system there is the keyword sexual functions, although I do not document anything there” (Interview 6)
9 To deal with different reactions-respond to nursing staff and relatives
Caring for people with dementia who express sexuality induces reactions and emotions and the RN´s had their own reactions while dealing with reactions from nursing staff and relatives
RN´s own emotions
The RN´s expressed discomfort, insecurity, frustration and embarrassment when they were confronted with persons expressing their sexuality. Furthermore, feelings of insecurity emerged when they were uncertain about having acted "correctly" towards persons when expressing their sexuality. The RN´s also felt sorry for, and experience the situation as tragic and distressing for both the persons with dementia and relatives when the person openly showed their sexuality. Additionally, some RN´s expressed that they felt contempt towards the nursing staff when experiencing the nursing staff as ignorant and sometimes not respecting the persons and their expression of their sexuality.
” As a RN`s you want to have a certain amount of control but when it comes to sexual expressions its totally worthless. Is it my own values that is in control? What kind of expressions is this? I’m feeling frustrated.” (Interview 3)
Emotions of nursing staff and relatives
The RN´s had to deal with nursing staffs reactions of being upset, feeling disgust and discomfort when person with dementia expressed their sexuality. RN´s sometimes had to handle the nursing staff´s feelings of compassion when the person with dementia met their relatives and expressed their sexuality in a way that could be perceived as indignity of everyone involved.
The RN´s experienced that younger nursing staff were being more likely to feel
uncomfortable when sexual expressions occurred. RN´s had to deal with it by letting nursing staff that were more experienced handle persons expressing their sexuality. Relatives could have a hard time understandingsexual expression fromrelated partiesand many felt distressed the RN´s expressed a need to alleviate the suffering of relative.
“The wife had a hard time to understand that her husband was changed because of the disease. The man started to like a co patient and they hugged and kissed. His wife became smitten. We talked a lot about this in the personnel group. Is this ethical right? The wife took it badly and felt horrible.” (Interview 7)
10 To want more competence development
The RN´s expressed a need for more education and increased competence in order to guide educate and inform not only themselves but also the nursing staff and relatives. A concern for the lack of guidelines was highlighted and a call for guidance in nursing concerning the topic was expressed.
Need for guidelines and guidance
The experience from the RN´s was that the more nursing staff talked about persons
expressions of their sexuality, the more they learned and their shyness disappeared. The RN´s also found it important to strengthen the nursing staff and guide them in situations that arose. The RN´s stated that because person’s expressions of their sexuality was a difficult subject, guidelines of the subject were called for. They expressed the need of a forum for discussions and reflections about this topic and being able to discuss issues linked to the person’s
expressions of their sexuality.
“There is a need for some kind of guidelines as you feel insecure in certain decisions, as long
as I start from the patient it often feels good but it would have been good to have some kind of guidelines so I can show the staff” (Interview 5)
Need for knowledge
Another aspect regarding the RN´s experience included general knowledge about the subject of sexuality and persons with dementia, and tools to be able to supervise care staff and relatives were requested. Tools in the form of forums for discussion and reflection as well as educational materials and guidelines were requested.Knowledge could give the feeling of and a sense of security in the care for the persons and a greater freedom in bringing up the subject and formulating nursing interventions.
“I would have liked the topic to be discussed in a group that you had some educational material such as a case” ( Interview1)
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Supporting and involved relatives
Supporting relatives and increasing their understanding of how expressions of sexuality could manifest itself in persons with dementia was perceived as an important nursing intervention by the RN`s. In addition, experiences emerged showing that the RN´s not always dared to talk to relatives about the subject, because of too little knowledge and being a sensitive topic.
DISCUSSION
To the best of our knowledge, this study is the first in Sweden that highlights RN´s experience of caring for persons with dementia who express sexuality. Nursing care puts demands on nurses’ ability to care for their own and others emotions and this study highlights this as an important factor. This is supported by previous studies that has shown how the prevailing view of persons with dementia expressed their sexuality is generally conservative and
negative and that it is difficult for RN´s and nursing staff to master feelings of embarrassment, shame, insecurity and discomfort Alagiakrishnan et al, 2004, Mahieu 2011 & (Bronner 2015,). RN´s face a wide range of experiences and emotions when confronted with in people with dementia expressions of sexuality and intimacy. A supportive approach is needed to guide nurses in dealing with these highly sensitive situations (Thys et al 2018).
The RN´s expressed a need for and a will to protect the integrity of the persons and consequently the right to sexual expressions. As mention above the RN´s experienced the importance of having the time and opportunity to discuss and reflect in a forum where all the nursing staff had the possibility to express their feelings and experiences. At the same time, one could obtain advice and exchange knowledge. There are studies that show the need for RN´s to have an open communication in the team around the person where ethical dilemmas linked to persons with dementia and sexuality are being reflected upon (Alagiakrishnan et al, 2004, Saunamäki et al 2009, Makimota et al 2013, Di Napoli et al, 2013 & Bronner 2015). The RN´s in the present study wanted more guidance of caring for persons with dementia who express sexuality and previous study has concluded that Clinical Group Supervision is one way to support RN´s and nursing staff when it comes to handling the sometimes-burdensome emotional part of nursing.
Clinical Supervision has been conducted since the 1980s and has been extensively evaluated. The results of these evaluations show that RN´s, nursing staff and relatives can receive support in their emotional work and ethical dilemmas through these group meetings (Brunero
12 & Stein-Parbury, 2008).
Educational effortscurrent sexual expression in people with dementia could be of great importance to both RN´s, nursing staff and relatives, which is supported by several studies that have previously been done (Gott, 2005, Mahieu et al 2011, Doll, 2012, Di Napoli et al 2013, Villar et al, 2014 & Simpson et al, 2016 ). The fact that guidelines are sought after is a natural request, and a need that naturally arises when care is complicated and different ethical principles collide. Several studies correspondingly have highlighted the need for guidelines for person with dementia expressing their sexuality (Ehrenfält et al 1997, Saunamäki et al 2009, Makimota et al, 2013 Mahieu et al 2014 & Simpson et al 2016). The question, however, is whether in this complicated and often-contradictory reality of nursing, staff and RN´s in this case, can be helpful. Guidelines cannot cover the multifaceted and complicated care that in many cases must be managed in a way that differs from case to case.
Another important issue reported by the RN´s was the uncertainty about how to document sexuality, and consequently there was a lack of documentation regarding the person’s sexuality,
If nursing diagnoses are not formulated it is impossible to communicate nursing
actions/interventions and as a consequence for the nursing staff to perform them accordingly. When the staff does not work uniformly according to the nursing actions prescribed by the nurse, it is not possible to evaluate the nursing, as there is a risk of all nursing staff doing it in their own way (Barmon et al 2016).
Documentation according to the nursing process must in this context, be seen as an absolute necessity as each person's needs are unique and RN´s as well as nursing staff work out what actions need to be performed (Rösvik et al 2011).
Our opinion to ensure the documentation and formalize continuous evaluation of sexual satisfaction and sexual expression based on the nursing process with a person-centered approach regarding people with dementia in nursing homes is to use a quality register.
The purpose of the quality register for Behavioral and Mental Symptoms in Dementia (BPSD) is to ensure the quality of care for people with dementia and to increase the quality of life. A registration has a clear structure for evidence-based nursing measures and evaluation of proposed interventions (Svenskt –BPSD-Register 2020).
13 For the study a qualitative inductive design was adopted; data was collected through semi-structured interviews, to explore RN´s experiences of the care for persons with dementia living in nursing homes and expressing their sexuality The interviews were conducted with RN´s in a limited context and geographical area, which may affect the transferability. The risk within only visiting nursing homes and excluding ordinary accommodation is connected to the limitations of representation of the population and the limitation of the transmissibility of the results (Lincoln & Guba, 1985). Only RN´s who worked during the day were included in the study, and excluding RN´s who worked at night may have affected results. In some nursing homes, two RN´s worked and due to workload, only one RN´s could participate. A survey had made it possible to increase the number of participants and give a fuller result, but the advantage of interviews is its flexibility, answers and feelings can be captured in a way that is impossible in a survey.The data were analyzed through content analysis described by Bengtsson (2016) wich provided an opportunity to structure and present the results according to themes. There is always a risk of subjectivity in data interpretation as it is possible to interpret the text in different way. To reduce this the analyses where discussed with
colleagues and the process of the content analysis was repeated on several occasions by the author to finally come to a consensus.
Meaningful units were identified and coded and a code list was established to secure the reliability (Cantazaro, 1988). The aim was to find a reoccurring pattern in data and this process repeated several times. At each occasion, the process starts at a new place in the text to further strengthen the trustworthiness. Subsequently the coded material was categorized and the combined conceptions compared to each other (Bengtsson, 2016). By describing the analytical procedure used and including the quotations, it is possible for readers to judge the conformability of the data as they inform how the findings were based on the participant’s opinions (Polit & Beck 2017).
STRENGHTS AND WEAKNESSES
The communicative validity of this study may be the subject for discussion. in all the above aspects, the description has been as exhaustive as possible. However, the results are limited by the small sample size and the participants' geographical location..RN´s who worked during the night shift was excluded from the study and this may have affected the outcome to explore RN´s experiences of the care for persons with dementia living in nursing homes and
14 The interviews in this study reflect the participants subjective retro perspective experience and perception,not necessarily authentic facts which could also have affected the result. What is new and has not been shown in previous studies is the importance of documentation according to the nursing process and its key role in the care of persons with dementia
expressing their sexuality. To the best of our knowledge, there is limited research that explore experiences of the care for persons with dementia expressing their sexuality in nursing homes by the RN´s.
CONCLUSION
To care for persons with dementia living in nursing homes and expressing their sexuality may be perceived as hard and challenging by RN’s. The lack of documentation is an obstacle in the nursing process and a risk for not performing person-centered care and delivering high quality nursing interventions. As being confronted with burdensome feelings and often-facing ethical dilemmas in the care for persons with dementia expressing their sexuality, creates a need for team based reflection and support. Furthermore, education is needed for anyone involved in the care for persons with dementia living in nursing homes and expressing their sexuality.
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