New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff

Abstract

Background

There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict.

Methods

This exploratory study investigated the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the themes that emerged in qualitative interviews with eight relatives of people with dementia and with 12 frontline care home staff working in two English care homes. Interviews took place in 2015 using a hypothetical vignette that unfolded in four stages. Thematic analysis was used to analyse the data.

Findings

The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated. Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. Relatives were considerate of the difficulties and dilemmas faced by care home staff.

Conclusion

The use of a vignette facilitated discussion of a potentially sensitive topic. Areas for further research are identified.

Keywords

care homes dementia residents families sexual activity intimacy decision making

Background

There are several practice debates about how to support long-established relationships in dementia care but limited evidence is available regarding the situation when a person with dementia who lives in a care home expresses their need for intimacy, not with their own spouse or long-term partner, but with another resident. There is similarly limited research on what family members and frontline care home workers consider to be the best approach in supporting the sexual expression of a person with dementia with another resident, whilst at the same time acknowledging the possible feelings of their relatives, managing possible risks of distress and conflict, and if and how these should be reflected in care home policy.

Dementia is a progressive syndrome affecting people’s behaviour, memory, executive functions and emotions, thus many people with dementia eventually loose insight into their actions (Ochsner & Kosslyn, 2014). This may be used to explain concerns regarding a person with dementia’s ability to consent to participate in sexual activity. How to respect the person with dementia’s autonomy and meet their needs within the law in a collective setting such as a care home is a sensitive part of dementia care practice as these questions are open to interpretation (Mahieu & Gastmans, 2012). Not everyone with dementia has a close family member or friend, however the majority of people have some relationship with a spouse or relative (often referred to as a carer or caregiver) (Hughes & Baldwin, 2006). This is where the ethical debate broadens: for what may seem right for the person with dementia, may not seem so for the family member who may feel they are able to and should speak for their relatives, and act in their best interests (Hughes & Baldwin, 2006; Nuffield Council, 2009). While this may be relevant whether the person with dementia is living at home or in a care home, in many countries care home staff report practice challenges with managing the sexual interest and needs of residents with dementia (Archibald, 2002; Lichtenberg & Strzepek, 1990; Tarzia, Fetherstonhaugh, & Bauer, 2012; Tzeng, Lin, Shyr, & Wen, 2009). The combination of respecting rights to intimacy, abiding by the law in relation to mental capacity, decision making and safeguarding, and working in the context of relationships with residents’ families makes this a possibly contentious area of practice.

A recent literature review investigated this subject and sought details of studies that had compared relatives and care workers’ views (Wiskerke & Manthorpe, 2016). While some studies have explored the views of relatives (Bauer et al., 2014), greater number of studies have reported the views of care workers (Archibald, 1998; Ehrenfeld, Tabak, Bronner, & Bergman, 1997; Tzeng et al., 2009). Overall, it appears that companionship between residents is encouraged, romance is frowned upon, and sex is taboo (Bauer et al., 2014; Ehrenfeld et al., 1997; Tzeng et al., 2009). Both relatives and staff express sympathy with residents holding hands and displays of care for one another (Archibald, 1998; Bauer et al., 2014; Ehrenfeld et al., 1997; Tzeng et al., 2009). The question of whether or not people with dementia are able to consent to sexual contact is a recurring theme throughout the literature reviewed and is set in the context of views about older people’s sexuality (Giddens, 2013; Holm, 2001; Tarzia et al., 2012).

This exploratory study aimed to explore the views of a sample of relatives of care home residents with dementia and care workers regarding new intimate relationships arising between people with dementia who are living in care homes (without their spouses). Care home staff’s and relatives’ views and experiences were explored in relation to the specific hypothetical case study of a person with dementia who is married, but is sharing intimacy (ranging from holding hands to sexual intercourse) with another care home resident who also has dementia.

Methods

Following the literature review (see Wiskerke & Manthorpe, 2016) the following research question was developed: what are the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst married to their spouse? Full ethical approval was granted in 2015 by King’s College London. The relevant local authority also gave research governance permission to proceed with the research in its area. It was acknowledged that the subject might trigger painful emotions. To reduce the risk of possible adverse reactions arising as a result of participating in the research, a voluntary sector carers’ organisation which supported the study offered free counselling sessions for participants to access if they so wished. This voluntary sector organisation had been consulted about the study and offered its support. In addition, the interviewer (EW) had professional experience relating to working with distressed carers and could access supervision and debriefing for herself.

It was considered that the research question, which aimed to explore people’s feelings and their reasoning round practice decisions and contact with care providers, could best be answered by a qualitative method since this is particularly suitable when studying the complexity of people’s views (Bryman & Burgess, 1994). As Taylor, Killick, and McGlade (2015, p. 36) have noted, studies of decision making may usefully employ qualitative methods to elucidate the concepts used in cognitive decision-making processes. A sample is purposively chosen and, as the researcher interacts closely with the participants, it allows for in-depth exploration of emerging themes, potentially resulting in detailed and a sizeable amount of data (Ritchie, Lewis, Nicholls, & Ormston, 2013). As highlighted by Moriarty (2011), semi-structured interviews are one of the methods in qualitative research which offer the researcher an opportunity to flexibly explore concepts with participants. Taking this forward, it was decided to develop a vignette because this would provide an opportunity to semi-structure the interviews, guiding the participants through a hypothetical dilemma to promote reflection which would help answer the research question.

Developing the vignette

As Barter and Renold explained, vignettes are used in research ‘to allow actions in context to be explored; to clarify people’s judgements; and to provide a less personal and therefore less threatening way of exploring sensitive topics’ (1999). A vignette was constructed (see Box 1) that was divided into five questions covering four brief scenarios in which the dilemma gradually intensified as the story unfolded. The first section described the display of mild affection and friendship. The second part highlighted how the resident’s spouse was still very much involved with their spouse, yet a connection between the two care home residents with dementia was growing too. The third left little to the imagination regarding how far the relationship had progressed and sought a specific response. The fourth section was developed as the literature review had shown the complexity of relatives’ involvement and provided the opportunity to revisit one surfacing question from the literature review: who has the right to decide for the person with dementia regarding their expression of sexuality? A final question sought responses from participants about affection between residents in general.

Box 1.

Vignette.

Researcher to explain that this is an imaginary story and that there are no right or wrong answers (also to remind participant of confidentiality). Research to seek agreement to audio-record and to begin.

“I am going to read a story that has different sections; I will ask you about your response to this at the end of each section.

Mrs Jones has been happily married to her husband for 50 years. She is becoming more forgetful and is not able to care for herself. Two years ago, she received a diagnosis of dementia. One year ago she moved to a local care home as her levels of distress and personal care needs are too hard for her husband to manage at home.

Mrs Jones met another resident, Mr Smith, who also has a diagnosis of dementia, and they seem to enjoy sitting next to each other at meal time. They chat happily and laugh together.

What is your initial response to this?

Staff note that everywhere you see Mrs Jones, Mr Smith is never too far away.

It is obvious to staff that there is a close connection between the two. When Mr Smith goes to the GP and in his absence Mrs Jones becomes very anxious. As soon as he returns they hug and all is well again. Shortly after, staff notice that their contact is becoming more physical and occasionally they are found in each other’s rooms.

In the meantime Mr Jones remains a regular visitor to his wife and always brings something nice, like fresh flowers or chocolates.

Tell me what you think about this

During a night shift Susan, the member of staff on duty, hears ‘strange noises’ coming from Mr Smith’s room. She knocks on the door, only to be told to go away. But whilst already half opening the door, she sees that Mr Smith and Mrs Jones are in the same bed.

Should Susan do or say anything?

During one of Mr Jones’ regular visits to his wife he sees Mr Smith stroking his wife’s hands when they are sitting next to each other. He does not say anything to the care home staff, but the following day, the care home manager receives a complaint from Mrs Jones’ daughter Rose. Rose is furious. She demands that the care home manager does something to stop this behaviour.

How should the care home manager respond to Rose?

How do you feel care home staff should respond to affection between residents in general?”

Piloting

A pilot interview was undertaken with a former carer affiliated with the carers’ organisation that helped with study recruitment. This explored if the story in the vignette was clear and not too intrusive or distressing. The (audio-recorded) pilot interview revealed that the storyline appeared sound. The pilot interview was of sufficient quality that it was decided to include it in the total sample of relatives interviewed.

Data collection

Two interview schedules based on the same vignette were developed; one for relatives and one for care home staff. Not surprisingly, data collected via the vignette method are of higher quality when recorded in a quiet rather than noisy setting (Stolte, 1994). Thus the interviewer ensured that the environment was quiet, which also seemed to help participants feel they could openly express their views. Each interview took place in either the care home (with staff) or in the carer's own home by choice. Most (19/20) interviews were recorded and later transcribed. One person declined to be recorded so handwritten notes were taken.

All participants listened to the same fictional story in the form of a vignette as read out by the researcher and were given the opportunity to respond to each section with some further probing questions in-between. On average interviews took 10 minutes each (range 6–17 minutes). Although the vignette was fictitious, after the recording device was switched off, on more than one occasion participants commented that they either had heard about such a scenario or had experienced a similar situation in their personal or professional life. The atmosphere of the interviews appeared relaxed and participants seemed to be easily able to express their views. There were occasional pauses as the story intensified and participants took a moment to think.

Recruitment and interviews with relatives

Four relatives were recruited through the voluntary sector carers’ organisation that had agreed to assist with the study. Further recruitment, akin to snowballing (McNeely & Clements, 1994) in that recruitment was through other participants, took place during a social ‘coffee morning’. Whilst explaining the study, two family carers self-identified as possible participants. They agreed to participate after being provided with study information. Another two carers were recruited through a relative. All were given information about the study to consider prior to taking part and provided with the opportunity to ask questions.

Recruitment and interviews with care home staff

The managers of two private sector London care homes (with different ownership) were approached and given information about the study and what was being asked. In one care home, the interviewer attended a team leaders’ meeting to explain the study and distributed the study’s information sheets. In the other care home, the manager was sent the research proposal and the information sheets to distribute before the researcher visited.

Analysis

The Framework method of analysis was chosen as it offers a methodological approach to the kaleidoscope of data that qualitative research tends to produce. The benefit is its systematic process enabling someone to visualise the analysis path taken (Ritchie & Spencer, 1994). Ritchie and Spencer have identified five essential key stages in Framework Analysis which are commented below in respect of the present study:

1. Familiarisation with the data

The interviewer listened to the recordings and re-read each transcript twice, whilst making notes of some emerging themes. This was done over a two-week period to allow time to digest the information and rethink some of the themes.

2. Identifying a thematic framework

A spread sheet was created for both relatives and care home workers which referenced answers from each participant to one of the concepts. The forming of themes is a combination of subjects that link with the research question and points raised by the participants (Ritchie & Spencer, 1994).

3. Indexing

During the indexing stage, all sentences were numbered. Quotes were noted for each concept, including the matching index numbers, referencing to the original interview transcript. This process was done separately for relative and care home worker interviews.

4. Charting

After careful consideration of the 33 concepts (relatives) (see Box 2) and 34 concepts (care home staff) (see Box 3), data were collapsed into main themes. This is a subjective process and was discussed between the two authors.

Box 2.

Initial concepts developed from Relatives’ interviews.

At this stage in the analysis an initial 33 concepts were identified: namely: Happiness & well-being, friendship & company, neglect, belonging, loneliness, feeling loved, stimulation, mental capacity, safe guarding, husband's feelings, family's feelings, intensity of the relationship, informing the family, observation, friendship gone too far, solution to the dilemma, how to act in the moment, how to separate Mrs J & Mr S long term, effect of separation of Mrs J & Mr S, reputation of the care home, opinion of the family, mental age, encouragement of sexuality, urgency of the situation, embarrassment / sensitivity of the dilemma, dementia, what would others say?, marriage /adultery, guidelines, documented, communication within the care home, who decides what needs to be done and staff's response towards residents' affection.

Box 3.

Initial concepts developed from interviews with care home staff.

In the initial analysis of the care home staff transcripts, 34 concepts were identified: Happiness & well-being, friendship & company, belonging, loneliness, feeling loved, mental capacity / consent, safe guarding, husband's feelings, family's feelings, intensity of the relationship, informing the family, observation, friendship gone too far, solution to the dilemma, how to act in the moment, (how to) separation of Mrs J & Mr S long term, effect of separation of Mrs J & Mr S, opinion of the family, other reasons for behaviour, mental age, encouragement of sexuality, infection control, urgency of the situation, embarrassment / sensitivity / awkwardness of the dilemma, dementia, what would others say, marriage /adultery, guidelines / documenting / care plan / policy, social services involvement, what the manager should do, communication (within the care home), who decides what needs to be done, training, staff's response towards residents’ affection.

5. Mapping and interpretation

Mapping and interpretation become complex as the researcher sifts through the indexed data to identify the concepts and consequently the main themes which best answer the research question (Ritchie & Spencer, 1994). Consequently, not all initially highlighted concepts are always used in the interpretation, for example, in this present study although a few comments were made about infection control and training in relation to the vignette, other themes featured much more frequently and addressed the research question.

Findings

Participating relatives

As shown in Table 1 (including the pilot participant) eight relatives participated and the nature of their relationship with their family member varied. Five were female and three male. Their different ethnic backgrounds reflected the local population of the study area. Half of the relatives were aged 70 years and over, and half below.

Table 1.

Relatives’ characteristics (n = 8).

	M/F	Ethnic background	Relation to the resident with dementia	Age range	Recruited via:
1	F	Other British	Spouse (bereaved)	70–80	Voluntary organisation
2	M	Caribbean	Son	51–60	Voluntary organisation
3	F	Caribbean	Spouse	61–70	Voluntary organisation
4	F	Caribbean	Sister-in-law	51–60	Voluntary organisation
5	F	Caribbean	Sister-in-law	61–70	Voluntary organisation
6	F	White English	Sister-in-law	70–80	Social event
7	M	White English	Brother	70–80	Social event
8	M	White Irish	Partner (bereaved)	70–80	Voluntary organisation

From the process of analysis, six main themes emerged when the initial concepts were synthesised (see Box 4).

Box 4.

Themes from interviews with relatives.

Human bonding

Reduced capacity

The feelings and opinions of others

Expectations of the care home

Issues around the display of affection

Residents’ ‘solution’

Human bonding

Friendship, companionship, relating to one another (summarised as human bonding in this study) were the relatives’ initial reactions to the vignette. These reactions were particularly evident when commenting on the first part of the vignette where Mrs Jones and Mr Smith form a friendship by sitting beside each other and happily chatting. As these extracts illustrate, relatives were positive about this emerging bond:

“friendships and personal contact are good” (Relative 1)

“if it gives them pleasure, fantastic” (Relative 2)

Some relatives reflected on the isolation and despair some people in care homes might experience:

“maybe look at the family as well, is it that the family have neglected this person?” (Relative 2)

“it is better forming the attachment to Mr Smith than crying and saying ‘I want to go home’ and ‘wish I wasn’t here’ and all those sorts of things that a lot of people in her position would say?” (Relative 6)

Reduced capacity

Without needing much prompting, the question of whether people with dementia could consent to sexual activity was brought up by the relatives, who generally appeared to doubt the mental or decision-making capacity of Mrs Jones and Mr Smith:

“seeing that they both have dementia, it is probably obvious that you cannot reason with them” (Relative 3)

“their capacity is not right at the moment, they are not able to make informed decisions about what they should and shouldn’t be doing” (Relative 4)

One relative accepted that Mrs Jones and Mr Smith would not be fully aware of their actions due to dementia, yet expressed ‘suspicion’ that they must have still some insight as:

“they are sensible enough to shut the door, so I don’t think they are going to shout their heads off if they are parted” (Relative 7)

Specific points regarding the subjective cognitive location in time of people with dementia were also raised:

“they think they are 20 again, not 60” (Relative 2)

“they are at that time in their lives when things are going through their heads and they could get confused and mixed up with certain things that have happened in their life … maybe she looks like his wife or things like that” (Relative 5)

The feelings and opinions of others

Some relatives appeared to empathise with the husband’s feelings (Mr Jones) and perhaps obliquely hinted at their own experiences:

“… being edged out in favour of somebody else is very hurtful” (Relative 1)

“it would cause anxiety for the husband” (Relative 3)

“to feel that another man now has that (physical) contact makes it hard for him (Mr Jones)” (Relative 6)

Expectations of the care home

Relatives thought the care home staff should take action:

“I think they would have to do an investigation, some monitoring and some documentation and a care plan that would need to take that behaviour into consideration and try to eradicate it or stop it from getting worse at least” (Relative 4)

“(staff) need to make a report and report to her line manager and the manager of the home” (Relative 6)

“(the member of staff should) … separate them there and then talk to her superiors about where they take it from there … I think they can sort it out. It’s gone a stage further than when they were caught in bed together. It must be very difficult for night staff to check on people all the time, but I’m sure they do because they have cameras” (Relative 7)

Issues around the display of affection

As noted above, as the vignette unfolded it conveyed a picture of growing affection between two people with dementia, both of whom were married (not to each other). The social awkwardness of this scenario was reflected in participants’ responses. Some hoped that the care home staff would support ‘innocent’ friendships:

“they (staff) should encourage it” (Relative 1)

“it is alright to be nice and affectionate” (Relative 5)

“I think they should turn a blind eye if it is in the open. I can’t see any harm at all because it’s in the open and they are happy” (Relative 8)

However, among some a firm view emerged that the staff should draw a line once intimacy progressed:

“we need to stamp on this now” (Relative 2)

“separate them if necessary, looks like it is necessary actually” (Relative 4)

“… it is not appropriate and that we don’t allow for things like that here. Because there are rules that people have to adhere to.” (Relative 8)

Relatives’ ‘solution’

This theme was split between how staff should respond when confronted with ‘the act’ in the moment, to what the long-term solution should be and who had the right to decide what, if anything, should be done. There appeared consensus that staff should act sensitively in the moment:

“tastefully get them away from whoever’s bed it is” (Relative 4)

“as gentle as possible she (staff) has got to separate them there and then” (Relative 7)

While some accepted the situation, others offered separation as a solution, although concerns were expressed that this could negatively affect both residents:

“explain how these things happen, it’s difficult but there can be positive outcomes in this then it cannot be altogether bad” (Relative 1)

“move them, separate them, sever the contacts” (Relative 3)

“without affecting their mentality it would be hard … it could cause violence” (Relative 2)

“to just tear them apart is quite cruel in itself maybe” (Relative 4)

However, while sensitivity appeared to be the common thread in responses to the immediate situation encountered by the night staff, relatives also commented on possible subsequent events. Among some there seemed to be an assumption that the family should be told:

“They must obviously tell Mr Jones and ask what he would like to have done about that. Very difficult” (Relative 6)

As the scenario ended with a complaint from Mrs Jones’ daughter to the care home manager, the consensus appeared that the manager should initiate a meeting:

“… the care (home) manager would be the person to take the initiative” (Relative 8)

The suggested invitees at such a meeting included the husband (Mr Jones), all relatives, or just care home staff. There seemed not to be a need for Mrs Jones’ feelings to be canvassed:

“I think the husband and the care home manager need to discuss it from different angles and come to an agreement but basically it’s what the husband wants done about the situation and in theory the care home should be able to accommodate that” (Relative 6)

“they (the care home) should invite them (Mr Jones and the daughter) down and have a meeting” (Relative 5)

“it’s up to the manager to say that we don’t allow people into each other’s rooms” (Relative 8)

Care home staff

Twelve care home workers (six from each care home) were interviewed (see Table 2). They all worked on a daily basis with residents and their positions in the care home varied from: care home worker (CHW), senior care worker (SCHW), team leader (CHW TL), a nurse (CHW N) and an activity coordinator (CHW AC). Eleven were female and one male. Their different ethnic backgrounds reflected the local area. Ages varied between 18 and 60 years old.

Table 2.

Characteristics of participating care home staff (n = 12).

	M / F	Ethnic background	Position in the care home:	Age range	Number of years working in Social Care / care home:
1	F	Caribbean	Senior care home worker (SCHW)	25–40	7
2	F	Caribbean	Senior care home worker (SCHW)	18–24	3
3	M	Other Asian	Team leader (CHW TL)	25–40	10
4	F	African	Senior care home worker (SCHW)	41–50	6
5	F	Other Asian	Activity coordinator (CHW AC)	25–40	2.5
6	F	Other Asian	Senior care home worker (SCHW)	25–40	5
7	F	African	Senior care home worker (SCHW)	25–40	9
8	F	White British	Team leader (CHW TL)	51–60	30
9	F	Caribbean	Care home worker (CHW)	41–50	7
10	F	African	Nurse (CHW N)	51–60	4
11	F	White British	Activity coordinator (CHW AC)	41–50	1
12	F	Caribbean	Care home worker (CHW)	18–24	3

Following analysis six main themes emerged as summarised in Box 5. As will be evident there were themes in common with those identified in the relatives’ interviews but the ‘solutions’ proposed differed.

Human bonding

Overall staff recognised the benefits of friendship and shows of affection among residents, as one team leader stated:

Box 5.

Themes arising in interviews with care workers.

Human bonding

Reduced capacity

The feelings and opinions of others

Expectations of the care home

Addressing displays of affection

Staff ‘solutions’

“looking after each other is doing them good” (CHW TL 3)

Like the relatives, staff also acknowledged that living in a care home may be a lonely experience:

“We should encourage friendly relationships so that people don’t feel lonely.” (SCHW1)

“some of them are just loving people; they like to show love because they don’t have relatives visiting them. The resident notice that relatives don’t visit, so they go into each other’s rooms because they like to talk” (SCHW 2)

However, a slightly different view was expressed by one participant who seemed to be more accepting of the relationship becoming physical:

“I really don’t see anything wrong with the fact that they are of opposite sex, and as far as I’m concerned, it’s okay” (CHW AC 11)

Reduced capacity

Staff appeared to be convinced that Mrs Jones was behaving as she did with Mr Smith because she perceived him to be her husband as a result of her dementia:

“two (different) spouses would be wrong to encourage it, because they are mistaken for whom the other person is … because of their dementia. Perhaps they are mistaken them (their new love) with someone from the past or when their spouse was younger?” (SCHW 1)

“obviously she is connecting with him as her husband and because of the dementia” (SCHW 8)

“I would try to make both parties, Mrs Jones and Mr Smith, aware that they are not each other’s partners because they may at that stage be thinking, Mrs Jones may be thinking that is Mr Jones, Mr Smith too may be thinking that she is Mrs Smith, so it’s best to reiterate to both parties that it’s not what you imagine it is.” (CHW 10)

That the close connection between Mrs Jones and Mr Smith could potentially lead to abuse and subsequently safeguarding inquiries by the local authority was something all staff voiced concerns about:

“if one person feels they are vulnerable to the other person, then I think it shouldn’t be” (CHW N 9)

“I think the first thing is, you have to make sure: are they both wiling participants; there’s nothing untoward going on, one is forcing them on the other one” (CHW AC 11)

Dementia was used by several to justify that Mrs Jones and Mr Smith could not be held accountable for their actions or beliefs, though not by all:

“They do not have the capacity of reasoning. To make a decision, in terms of dementia, most of them are disorientated, what they feel, what they see, they think is right, but they are not all there.” (SCHW 4)

In contrast, one member of staff took a more libertarian stance:

“I don’t see how you can really say ‘no’ because they have got dementia. I think maybe that would be seriously over stepping the mark of taking away people’s liberties.” (CHW AC 11)

The feelings and opinions of others

Staff participants were conscious of the visiting husband’s feelings, yet some also expressed the view that family members should respond positively to residents’ friendships:

“the only happiness that Mr Jones has, is coming to the home to see his wife looking happy … for Mr Jones to come into the care home and see his wife holding another man’s hand, no, the care staff need to be watchful.” (SCHW 4)

“if I was family of Mrs Jones, I would be happy, it would lessen my anxiousness that my mum was in a home where she is making friends. It’s like having another family” (SCHW 6)

However, as the intimacy scenario intensified as the vignette unfolded, there appeared more reliance on the opinion of the family as an influential presence in care homes’ practice. The impression was that care home staff do not want to upset the family, fear a complaint, and seem to base a decision about whether to allow the intimacy on the family’s reaction:

“if things go further, I would have to think what the family would say. They could think that some abuse is going on, especially if they don’t know the case of the other man, so why is she going to this man’s room, why are staff letting her?” (SCHW 6)

“I would think that other people would think that she is being abused. So it’s about how others see it” (CHW TL 8)

“it’s good for them to socialise anyway but it’s good to ask the relatives to make sure they are okay with it” (CHW 12)

Expectations of the care home

Once the vignette made it clear that a member of staff had been faced with the probability that Mrs Jones and Mr Smith were having a sexual relationship, all staff responded strongly that the situation should be observed, recorded, that the local authority social services department and the family should be informed, and the manager needed to hold a meeting:

“they (the care home manager) should first reassure the family that we’re going to look into this and we will observe and monitor. If we see behaviour like that we need to take action, follow the protocol, policies and procedures of the company where we stand. We need to inform social services. Because, at least if in case it blows out of proportion, then at least social services of both parties are fully aware of what’s happening.” (CHW TL 3)

“if you see them holding hands or something, then keep an eye on them, as long as it doesn’t go too far” (SCHW 7)

“it’s a multi-disciplinary team effort, the care manager alone cannot make that decision, she would have to involve the family and whoever other professionals involved input about the residents’ care, sit down and discuss it openly” (CHW 10)

Only one participant had a different view on how the manager should respond to Mrs Jones’ daughter’s complaint:

“you have to call Rose (the daughter) in and basically tell her that her mother is our primary concern. If she’s (mother) happy and thriving then as nicely as possible you have to tell Rose: ‘you’ve got to get over this, you’ve got to deal with this’.” (CHW AC 11)

Addressing displays of affection

There appeared consensus that the situation as described in the vignette would be awkward. Even the participant who overall advocated for primarily Mrs Jones’ happiness concurred that it was not straightforward:

“personally I don’t know what would happen if something like that happened here. I think it would be a learning curve for us all.” (CHW AC11)

So long the companionship remained ‘just being friends’, members of staff were in favour of such bonds between residents. But they reacted strongly to the suggestion that anything leading to or display of eroticism or physical expressions of sexuality, describing it as being out of the question, ought to be prevented and, if it did occur; quickly dealt with, predominantly because Mrs Jones was still married:

“because it’s no longer platonic. I wouldn’t want to separate them; otherwise it is too distressing, unless it became sexual” (SCHW 1)

“if she was single and the families know that they like each other and getting close, it would be different. But because she is married I don’t think they should be that close.” (CHW N 9)

Staff ‘solutions’

Staff offered varied solutions to prevent Mrs Jones and Mr Smith getting too close: always smiling to them, ensuring they are happy … and then separating them, showing each their spouse’s photograph, distracting them, and encouraging Mr Jones to visit his wife more frequently.

Staff appeared experienced in redirecting a person with dementia. They recognised that this should be done sensitively, sharing how they would diplomatically split up Mrs Jones and Mr Smith in the moment:

“how you communicate to them can reassure the resident if they’re disorientated, then you can redirect them back to their own room. You say ‘this is your room’ and you have to explain and communicate with your residents” (SCHW 2)

Though it was acknowledged that a meeting should probably be held between care home staff, families and possibly other professionals, most staff felt that moving either Mrs Jones or Mr Smith to a different floor or care home would be the preferred solution to the perceived problem:

“the manager would have to take some action, separating them onto two floors if they have them. Inform the family and then it is really up to them to maybe move her to a different home, if it was my mum or dad, I would move them to a different home” (CHW AC 5)

Discussion

Though the relatives and care home staff interview findings are reported separately, they are brought together in this discussion section.

Human bonding

The initial positive response to the emerging friendship portrayed in the vignette expressed by most participants was similar to that found in the studies that were located in the literature review. Some participants in this present study stipulated, similar to the views of participants in a Taiwanese study, that companionship was acceptable, as long as it concerned two people of the same sex and it was deemed a ‘family connection’ (Tzeng et al., 2009).

Reduced capacity

Both relatives and staff appeared to be of the opinion that Mrs Jones was not able to consent to sexual intercourse due to her dementia. As they accepted this as a fact, they also felt that it was consequently their responsibility (or that of the care home) to decide on her behalf that such activity would be terminated. No participant seemed to blame her or to express negative moral judgments about her behaviour but, similar to the participants in a Scottish study (Archibald, 1998), they felt that because a person with dementia may consider themselves to be younger, they may behave in a more sexually disinhibited way. All participants conveyed the notion that they had Mrs Jones’ safety at heart; the impression was that the dismissal of Mrs Jones’ expression of her sexuality arose from participants' own personal discomfort regarding a resident’s sexual activity with a new partner rather than the continuation of sexual activity with a long-standing partner.

One participant expressed views that were more liberal and this care worker appeared more inclined to judge Mrs Jones’ actions on a personal and case by case basis.

The feelings and opinions of others

Participants’ consideration of the feelings and opinions of other people in addition to Mrs Jones was a poignant finding. The relatives were concerned on behalf of the staff and they in return stressed that they valued the family’s feelings and opinions. Like the relatives in Bauer’s study, they commented that it must be hard for staff to cope with residents’ expressions of sexuality (Bauer et al., 2014). Though one participant considered Mrs Jones’ happiness to be her primary objective, nobody reflected on what Mrs Jones’ herself would have made from the situation before developing dementia. In addition it was automatically assumed, no doubt encouraged by the vignette stating that she had been married for 50 years and the description of Mr Jones bringing her flowers and chocolates, that it was a loving marriage. Had the vignette story given the impression that the marriage had been an unhappy experience and without affection, then responses might have been different or slightly more nuanced.

Expectations of the care home

There was consensus between the relatives and staff that the care home (in terms of its staff) had a role to play in monitoring a situation that potentially could lead to a safeguarding or potentially abusive incident. Observing the behaviour of Mrs Jones and Mr Smith was deemed to be the best way forward, as soon as it became clear that they had formed more than a casual connection. In particular, the care home workers were aware of their duty to make a record of the incident in the files and the possible role that social services might play in an intervention, such as changing the care plan or even moving one of the residents.

The display of affection

Though this study did not repeat any of the methods used in other studies located in the literature review, the responses of the relatives and staff in relation to affection in general concurred with the findings from existing literature that while companionship is encouraged, romance is disapproved and sexual relationships are taboo (Bauer et al., 2014; Ehrenfeld et al., 1997; Tzeng et al., 2009). During the interviews there was the odd pause, sigh or a request to clarify that Mrs Jones and Mr Smith were both married or Mr Jones was still visiting his wife. The fact that Mr Jones appeared to be an attentive husband, yet Mrs Jones appeared to be quite happy with her situation too, made some of the participants hesitate before condoning the intimacy between Mrs Jones and Mr Smith. Some stated that their opinion may have been different had Mrs Jones been single (with family approval), but the fact that she was married swayed the majority of the opinions that this situation was unacceptable.

The ‘solution’

The theme on how to solve the situation: whereby two people both with evident (as indicated in the vignette) reduced decision making capacity caused by dementia share intimacy, combined with the risk of this upsetting their close family members with whom there was a shared history and relationship prior to the dementia, was unique (to the best of our knowledge) to the vignette scenario developed for this study. Tenenbaum potentially offered some consolation to some relatives in such a situation by explaining that in this context of dementia, the instigation of a new sexual relationship by a married partner is not adultery with ‘intent’ (2009). Whether it is or not, the majority of participants felt that this situation (sexual activity between residents) ought to not only come to an end, but, in order to avoid a repeat, preventative measures ought to be put in place such moving one resident to another part of the care home, although concerns were expressed that this could have a negative effect on them both. This negative implication was also recognised in Ehrenfield et al.’s (1997) study. Relatives, as well as the care home workers, made the point that any solution offered which included breaking up the connection between Mrs Jones and Mr Smith in the moment or long-term should be handled very sensitively to minimise the distress this might cause.

One participant felt that family acceptance of the situation was the only acceptable solution and this different ‘outlier’ perspective was in contrast to the other participants’ views.

Limitations

This exploratory study did not explore the views of people with dementia or consult people with dementia about new sexual and intimate relationships in a care home; their views would enrich understanding.

It is possible that findings may have been different if there had been more male participants, though the views of male and female relatives and care home workers in this study did not vary substantially, even though there were substantial age differences between the relatives and care workers. Participants generally expressed concern about the vignette’s depiction of a romantic liaison between Mrs Jones and Mr Smith particularly because both were married to someone else. The study did not explore if this was due to their own personal beliefs and experiences about marriage, religion, ageism, or lack of clear guidance in such a situation.

Some care home workers did not speak much English which complicated the interview at times and its transcription. However, this is common in care settings in England (Hussein & Manthorpe, 2012) where many care workers are migrants. Similarly, some care home participants and participating relatives did not originate from the UK although most spoke English fluently. The potential influences of different cultural views on marriage and sexual behaviour were not developed in the interviews. The study took place in one part of London and in only two homes, neither of which had a religious affiliation.

Conclusions

This focused study was not just about the expression of sexuality between care home residents, or about challenging sexual behaviour, but addressed a specific discussion point that the people concerned were having sexual contact, with the complication that they (or one of them) were (possibly) not aware that they were doing so, as a result of their dementia, or were not in a position to make the informed decision to do so.

Hence, the findings of this study cannot be wholly compared to existing studies. Nonetheless, there are similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated.

This study concludes that a person with dementia expressing sexuality and engaging in sexual behaviour with another resident is a challenge for care homes to manage and can be emotionally painful for families. Further research with a more diverse sample and in other parts of the UK would benefit discussion of what might be constructed to be best practise if a person with dementia wishes to express their sexuality with another resident (in the moment). Moreover, future research could consider whether specific legal safeguards designed to protect people who have difficulty in making decisions provide good guiding principles for the realities of practice. None of the care workers in this study referred to sources of advice or information; they were reliant on managers and senior staff. The views of managers are important but under-explored; in the UK context do they, for example, access specific guidance for nurses in care homes on such subjects? (Heath, 2011).

This study focused on a traditional marriage partnership and further debate is needed regarding expressions of sexuality which could be misconstrued as challenging behaviour (Rubin, 1984). This might have the potential not only to reflect the situations of a single or married heterosexual person with dementia, but also people who are homo-bi-sexual, transgender (Knocker, 2012; Ward, Rivers, & Sutherland, 2012) or who actively practised different expressions of sexuality before developing dementia (Gill & Hough, 2007). Only two of the eight relatives interviewed were partners/spouses and this too may have influenced the views expressed. As is often observed, there are wide variations among people with dementia but also among their relatives.

Footnotes

Acknowledgements

The authors are most grateful to all the participants in this study and to the care home managers, social services staff, and carers centre staff who facilitated the research. This work formed part of a Master’s study completed at King’s College London by the first author and further input was made by the second author as part of her work at the Social Care Workforce Research Unit, King’s College London. The views expressed in the article are those of the authors alone and do not necessarily represent those of their employers or funders.

Declaration of Conflicting Interests

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

Funding

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

Esther Wiskerke is a specialist dementia day centre manager in London. She holds a Master’s degree in Advance Dementia Studies from King’s College London.

Jill Manthorpe is professor of Social Work at King’s College London and Director of the Social Care Workforce Research Unit.

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