When it comes to sexuality and intimacy in an aged care setting, how can staff balance residents’ rights with a duty of care? DR CATHERINE COOK and Associate Professor MARK HENRICKSON address a complex and sensitive topic.

A brief quiz to begin with:

You are at an aged care seminar about fostering wellbeing and person-centred care for people living with dementia. The presenter asks for a show of hands in response to the following question: “who believes that people living with dementia should be supported to live as fully as possible, cared for holistically, with an individualised, person-centred approach”?

How many hands are raised?

a)      All participants raise a hand
b)      Few participants raise a hand

The presenter then asks, “given that, considering intimacy and sexuality are part of such a holistic person-centred approach, even when there is cognitive diminishment, who is confident that in the facility in which they live, work or visit, that there are supportive policies, proactive education, and guidance communicated to all levels of staff, residents and their families”?

How many hands are raised?

a)      Few participants raise a hand
b)      All participants raise a hand

If you answered ‘A’ to both questions you’re correct in the New Zealand context. Most managers, clinical staff and families are committed to a vision of a rich and fulfilling quality of life for residents and of course this is what residents aspire to as well. Much work to address complex topics in the aged care sector is going on, such as national initiatives addressing advanced care planning and palliative care. However, there’s a significant lag in terms of consideration of the inclusion of intimacy and sexuality needs as part of quality of life for people who have some cognitive impairment.

Although staff and families may acknowledge the sexual rights of older residents who are still cognitively able, anxiety surrounding consent is the most common justification given when there are blanket rules that exclude intimacy and sexuality from the lives of people living with dementia.

However, a preoccupation with risk is at least in part due to staff, residents and their families not having proactive policies, education and role-modelling of how to navigate what might be complex issues through skilful communication. Blanket rules not only risk breaching people’s rights, they also don’t work.  The need for intimacy and affection transcends cognitive decline; people continue to be able to express relatedness despite a gradual loss of autonomy.

A case study scenario

The following composite example is typical of how avoidable distress and crises occur when intimacy and dementia aren’t discussed openly, and when staff don’t know how to facilitate support for families and residents in the process of assessing the balance of wellbeing and risk:

Kiri currently lives with a moderate degree of dementia, and although she is physically mobile and appears to enjoy many aspects of her daily life in the facility in which she lives, she increasingly does not recognise her family members, who do not visit often. She has formed a close friendship with Matiu, who also lives with a moderate degree of dementia, although his verbal skills are much more reduced than Kiri’s. Staff notice they seek each other out and appear very content in each other’s company, becoming distressed if they can’t sit together. Over the course of several weeks Kiri and Matiu move to holding hands and he loves to brush her hair and kisses her hand often. Staff don’t know what to do and argue amongst themselves. Some staff have a giggle about this situation, some think Matiu is “a dirty old man” and some argue that these attitudes are disrespectful and that Kiri and Matiu are still entitled to happiness, but these staff don’t know what is and isn’t their responsibility. They don’t know if they should be worried or not. Each uses their own personal moral compass based on their personal beliefs to inform their response. They don’t know how to raise this situation with family so they try to make sure Kiri and Matiu aren’t near each other when family members visit. One day, Kiri’s daughter visits and is upset to find Kiri and Matiu lying on Kiri’s bed, embracing. She wants this relationship ended immediately.

However, Kiri’s son disagrees, and believes his mother deserves to have this happiness. Both relatives express their frustration to the staff that they haven’t been kept up-to-date with this emerging relationship. The daughter wants her mother moved to a different facility and the son strongly disagrees. The manager, when she finds out about the situation, meets with staff and emphasises that this increasingly intimate contact must never happen again. Kiri and Matiu are moved to different wings of the building so they can’t find each other. Staff are distressed when they find Kiri searching for Matiu.

How very different this situation might have been if the facility had policies, procedures and ongoing education that are supportive of people’s intimacy needs, balancing residents’ rights with a duty of care. Imagine all families and prospective residents being introduced to this policy proactively by staff members who are sensitive and confident in discussing intimacy in the lives of people living with advancing dementia. Imagine care staff teams who have been educated about a person-centred approach to intimacy, sexuality and dementia, including the associated communication skills. They are therefore able to work collaboratively with colleagues and families, to blend individualised assessments of safety and wellbeing through knowing residents, with an understanding of legal and ethical considerations.

In the decision of whether to intervene in the choices of a person living with dementia, it’s important that proxy decision-makers such as staff and families weigh the probability and likely severity of harm with consideration of the person’s dignity, self-esteem, privacy rights, outward signs of happiness and wellbeing, and alongside their lifetime and present- day preferences.

It is inaccurate to assume that people who develop dementia lose all connection with the meaning and value intimacy and even sexuality have held for them. They may well be able to express their views in some way. Where it’s deemed that some intervention is needed, the decision is more likely to be an ethical one if the mildest intervention possible is implemented, that doesn’t generate other or greater harms, and doesn’t discriminate based on an individual caregiver’s personal standards. The latter means for example that same-sex couples ethically cannot be separated just because individual proxy decision-makers have difficulty conceptualising relationships between same sex couples. A resident’s masturbating is not inappropriate just because a staff member finds this practice personally offensive, although context and location are important.

Resources and expertise

Examples are flourishing. The authors of this piece are currently undertaking research in the New Zealand context. Nationally and internationally there are a number of organisations and facilities leading the way. Excellent resources and training packages are available. A few examples are provided below.

An expert in this field, Joy Solomon, will be providing a half-day symposium in Auckland at Massey University, Albany, on April 19th 2017. Joy Solomon is an attorney at The Hebrew Home at Riverdale, which is internationally known for its innovative policies on intimacy and sexuality in residential aged care. For a video introduction to Riverdale’s education and policy go here.

For excellent resources created by interprofessional teams see:

Alzheimer’s Australia. Quality dementia care: Understanding dementia care and sexuality in residential facilities: go here.

At the December 2016 privacy research symposium hosted by the Office of the Privacy Commissioner, Alison Rahn, an Australian sex therapist, gave this presentation about her doctoral research on Sexuality and Privacy in Aged Care Facilities: go here.

For an in-depth tool to assess the extent to which residential aged care facilities address the breadth of these topics see: Australian Centre for Evidence Based Aged Care: Sexuality assessment tool (SexAT) for residential aged care facilities: go here.

Authors: Dr Catherine Cook, Senior Lecturer at the School of Nursing, Massey University, Albany and Associate Professor Mark Henrickson, School of Social Work, Massey University, Albany.

Joy Solomon’s ‘Symposium on Intimacy and Sexuality in Aged Care’ is from 9am-1pm on Wednesday 19 April 2017 at Massey University in Albany. For more information please contact c.m.cook@massey.ac.nz.

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