Supporting Intimate Relationships for People with Dementia: Tips in Planning for or Living in Residential Care

By: 
Catherine Cook RN, PhD, Associate Professor School of Nursing, AUT
Chris Sinclair RN, Specialist Nurse Older Adult Mental Health

Relationships that involve attachment, intimacy and sexual expression are fundamental to identity and contentment in most adults’ lives. The expression of these needs may transform as we age, but they do not disappear. Yet older people’s sexual expression, or the idea that they may have desires, is commonly met with derision and disgust from peers and younger people. Glancing through greeting cards and online memes highlights that these attitudes are entrenched, with older people’s sexuality depicted as clownish and inappropriate.

It is unsurprising that once dementia is in the mix, societal stereotypes and personal biases readily inform decisions about what is best for a person. Ideally, decisions are made by careful reflection and weighing up a duty of care with a humanistic approach, where people living with dementia are treated as socially alive (Lichtenberg, 2014).

Complexities around intimacy and sexual expression arise in residential care. This is unsurprising; connections happen when people are brought together in a communal living context. However, if residents, families, and staff are unprepared for this possibility, each situation is treated in a ‘knee-jerk’ way, as if it is a crisis and a deviation from the norm of a monk-like existence. Supporting intimacy and sexual expression in the lives of people living with dementia can undoubtedly mean juggling complexities, but resorting to a blanket ruling of no intimacy under the guise of a duty of care can violate people’s rights, dignity and wellbeing (Cook et al., 2021a).

The authors, a researcher and a clinician who are both nurses, work with staff in aged residential care to translate intimacy and sexuality research and policies into practice. We are often moved by the stories residents, families and healthcare workers tell us. A care home manager told of one such incident: A woman who was a widowed resident and had a mild degree of dementia had developed a friendship with another resident, a man without cognitive impairment. This connection progressed to actively seeking each other out, holding hands and kissing. The manager saw the comfort and happiness the relationship brought to both people. However, the woman’s daughter told the manager that if her mother had been “herself”, she would not have betrayed the memory of her father in this way. She said if the manager didn’t stop the relationship, she would move her mother elsewhere.

Another contrasting story told to us was by another daughter, who responded quite differently to her mother’s dementia. Her mother had developed a special friendship with another resident who also had dementia. The daughter told of how she and the other resident’s family cooperated to discuss what they thought the safe boundaries of the relationship might be. The daughter spoke of her mother’s lifelong history of volatility and her concern that a sudden behaviour change could harm the other resident. Together, the families decided their preference for the safety of both was to support a level of intimacy within the public spaces of the care home. Significantly, the daughter said she felt the staff were unable to offer guidance and the families were left to work out an ad hoc plan.

Some situations are particularly complex. Consider a resident with dementia who has a living partner but has become very attached to another resident. This is a not-uncommon situation made more complicated by the issue of whether the resident is misidentifying the other resident as their spouse or whether this is an expression of “living in the moment” pleasure and happiness. This context can be the source of significant grief for some spouses, whereas for others there can be a poignant acceptance that their loved person is happy (Schouten et al., 2021). So, what must residents, family members and care staff do in all this complexity?

The big picture – leadership, preparation and planning

Well-informed leadership and role-modelling by “clinical champions” are fundamental to decisions that uphold the dignity and foreground the safety and happiness of people living with dementia. Part of leading in this context means ensuring that care is informed by research and policy that includes people’s legal rights and is ethically oriented towards treating people with dementia as socially alive. A “one size fits all” approach will fail, and numerous factors that make each situation unique need to be weighed up. Although this preparedness is lacking in many care homes, there are exemplars of trailblazing and excellence, such as the Hebrew Home at Riverdale, New York, that has had a policy and regular staff education for decades (RiverSpring, 2023). Policy and practice development in British Columbia is also inspirational and guiding (Breen et al., 2009). Ideally, policies are supportive rather than restrictive and include consultation with all parties.

Early considerations

Advantageously, the topic of intimacy and sexual expression is raised early, even briefly, before a person moves to residential care. Normalising intimacy and sexuality is helped by having “courageous conversations” that broach what can be a taboo topic. Ideally, the person with dementia should be included in the conversation. For example, the onboarding manager could say, “Part of the information I’ll leave with you to consider is our intimacy and sexuality policy. We want residential care to feel like a person’s home and, as much as possible, keep them connected to the people and relationships that are important to them. I encourage you to get back to me or a staff member you connect with about ways we can support you and any issues and concerns you have.”

It is not uncommon that couples where one has dementia are already dealing with changes to their intimate relationship. For example, the increasing shift from partner to caregiver, including providing personal care, may have impacted desire. The partner without dementia may feel pressured to be sexually intimate, and this can be particularly challenging if the person with dementia has limited short-term memory around recent sexual intimacy. If disinhibition is a feature of their dementia, this may also raise challenges. We know of a situation where a man in a longstanding, loving marriage was spurning his wife’s affection as she had dementia, and he did not know if it was right and legal for him to be sexually intimate with her. An early conversation would have been useful and clarifying.

If someone is entering residential care as a single person, it is helpful to cue the person and their family that strong bonds can occur: “Moving to communal living in residential care commonly means people develop new friendships, and sometimes these grow into special relationships that become intimate and may include sexual expression. People are often surprised when I raise this, as it’s something they’ve not thought about, and it occurs more commonly than you might think. We do our utmost to protect residents and to support what brings them happiness. Let me know if this is something you have views about and would like to discuss further at another time.” This approach is very different from tick-box questions such as, “Do you have any sexual needs?”

Overarching principles to guide leadership decisions

When leaders are guiding decisions, there are five key areas to consider:

1. the intervention needs to be effective;
2. not create other or greater harms;
3. be the mildest possible intervention that is regularly reassessed for effectiveness;
4. not be discriminatory (for example, there are common gendered stereotypes that mean older men’s sexual expression is labelled “dirty old man” whereas the same behaviours in women are framed as flirting); and
5. considered justifiable, ethically, legally and clinically, preferably involving the resident themselves wherever possible (Everett, 2008; Cook et al., 2017).

Advance care planning

There are calls for advance care planning that includes preferences about how the person wishes their sexual expression to be addressed if they no longer have the capacity to make these decisions. For example, a woman who has always identified as lesbian may be terrified that in a care context, were she to develop dementia, she may become intimate with a man, and she may wish her carers to ensure this does not occur. However, contrary arguments exist about this sort of advance care planning around intimacy. For example, does the self we are before dementia know what will bring in-the-moment happiness for ourselves when living with dementia? Advance care planning needs to be flexible in its implementation. Consider a real-life scenario where, inadvertently, an acrimoniously divorced couple, now both with dementia, moved to the same care home. To the consternation of their adult children, they rekindled a happy, intimate relationship with no apparent memory of why they separated.

Education

Clinical staff best understand policies when scenario-based learning is used, preferably drawing from in-house cases. Typically, carers come from diverse backgrounds. Fundamental to education is helping people reflect on their personal values and understand their legal rights and those of residents. Many carers, for example, come from countries where the rights of sexual and gender-diverse people are not upheld in legislation. Staff may have conservative values around heteronormativity and monogamy and may be unfamiliar with the rights to “non-standard” intimacies (Henrickson et al., 2022). Staff may also struggle to discern sexual expression from sexual harassment (Cook et al., 2021b). We have found that most staff in residential care have a hazy understanding of legal and ethical considerations, and we encourage this as an area of continued focus and learning. We encourage care that is ethically and legally justifiable. This includes managerial and clinical leaders with a firm grounding in legalities around capacity and its meaning. Capacity varies considerably depending on the decision to be made. Therefore, a resident may need designated family members to guide decisions around finances, but this does not automatically mean the family controls preferences such as special friendships. Families need educational and emotional support because, although in most instances families can be the best advocates for their residents, adult children typically know little, if anything, about their parents’ intimate lives and preferences (Cook et al., 2021a; Villar & Fabà, 2021).

In-the-moment tips

Thorough policies typically have algorithms (such as “if this, do that” flow charts) to assist staff in making on-the-spot decisions. Pre-emptive education is much more likely to lead to favourable decisions where the staff member is aware of their initial reaction, which includes personal values and assumptions AND can make an immediate assessment about 1) whether there is an immediate need to intervene; 2) whether the situation is low or no risk, or 3) whether, although not a current significant concern, the situation warrants further consideration.

Here are three examples to illustrate.

• A healthcare assistant enters a resident’s private room and finds the resident masturbating. The staff member notices they feel an immediate response of being unsettled about what they have seen. However, the staff members reminded themselves that this was the resident’s home, briefly noted that the resident was safe and left the room.
• A staff member enters a resident’s room and finds an unknown person in a resident’s bed, apparently attempting to have sex with them. The staff member immediately calls for collegial help.
• A staff member notices a growing affection between two residents with dementia who have spouses. The staff member brings this to the team’s attention and requests a time to discuss possible respectful approaches for the residents and their spouses.

Sustaining the rights of older adults living with degrees of dementia while ensuring a reasonable duty of care can be a thought-provoking process involving collaboration with clinical leaders, care staff, families and, where possible, the residents themselves. Rigid conceptualisations of consent may result in excessive control and compromise the resident’s wellbeing and happiness. However, an unreflective permissive view can result in harm to the resident. Through education, managerial, and clinical leadership, people living with dementia can be supported in their in-the-moment happiness, including intimate relationships, while upholding their dignity and personhood.

References

Breen, S., Carlson, M., Clements, G., Everett, B., & Young, J. (2009). Supporting sexual health and intimacy in care facilities: Guidelines for supporting adults living in long-term care facilities and group homes in British Columbia, Canada. Vancouver Coastal Health Authority. https://vch.ca/sites/default/files/import/documents/Facilities-licensing-supporting-sexual-health-and-intimacy-in-care-facilities.pdf

Cook, C., Schouten, V., Henrickson, M., & McDonald, S. (2017). Ethics, intimacy and sexuality in aged care. Journal of Advanced Nursing, 73(12), 3017–3027. https://doi.org/10.1111/jan.13361

Cook, C., Henrickson, M., Atefi, N., Schouten, V., & Mcdonald, S. (2021). Iatrogenic loneliness and loss of intimacy in residential care. Nursing ethics, 28(6), 911–923. https://doi.org/10.1177/0969733020983394

Cook, C. M., Schouten, V., Henrickson, M., McDonald, S., & Atefi, N. (2022). Sexual harassment or disinhibition? Residential care staff responses to older adults’ unwanted behaviours. International Journal of Older People Nursing, 17, e12433. https://doi.org/10.1111/opn.12433

Everett, B. (2008). Supporting sexual activity in long-term care. Nursing Ethics, 15(1), 87–96. https://doi.org/10.1177/0969733007083937

Henrickson, M., Cook, C. M., & Schouten, V. (2022). Culture clash: Responses to sexual diversity in residential aged care. Culture, health & sexuality, 24(4), 548–563. https://doi.org/10.1080/13691058.2021.1871649

Lichtenberg P. A. (2014). Sexuality and physical intimacy in long-term care. Occupational therapy in health care, 28(1), 42–50.https://doi.org/10.3109/07380577.2013.865858

RiverSpring Health. (2017). Hebrew Home at Riverdale Resident Sexual Expression Policy.

https://riverspringliving.org/wp-content/uploads/2023/01/Resident-Sexual-Expression-Policy-revised-4.2017.pdf

Schouten, V., Henrickson, M., Cook, C., McDonald, S., & Atefi, N. (2021). Intimacy for older adults in long-term care: A need, a right, a privilege – or a kind of care? Journal of Medical Ethics, 48(10), 723–727. https://doi.org/10.1136/medethics-2020-107171

Villar, F., & Fabà, J. (2021). Older people living in long-term care: No place for old sex? In Desexualisation in Later Life (pp. 153–170). Policy Press.