The Last Taboo: Living with Dementia and Being Desexualised

THOUGHT LEADERSHIPHow can care home operators respect human rights and sexual rights whilst navigating the capacity to consent dilemma?

By Arlene Bunton • Mac Research and Consultancy Limited • April 2026

Here is a truth that most of the care sector would rather not say out loud: the moment a person moves into a care home and receives a diagnosis of dementia, we begin — slowly, systematically, and almost always without conscious intent — to erase them as a sexual being.

We remove double beds and replace them with profiling singles. We knock on doors and walk in without waiting. We discuss their bodies in handovers as a collection of clinical tasks — washed, turned, changed — and never once ask whether they miss being touched by someone who loves them. We call their attempts at intimacy "challenging behaviour" and write it up in an incident form. We medicate it. We separate them. We tell their families there is "nothing to worry about."

And in doing so, we violate their human rights.

This is not a fringe issue. This is not a theoretical ethics seminar. This is happening every day, in care homes across Scotland, England, and beyond. And it is time we talked about it with the honesty, discomfort, and professional courage it demands.

The Quiet Erasure

Dr Karen Rennie's ground-breaking PhD research at Queen Margaret University, Edinburgh — the first study of its kind to involve people with dementia as active research participants — found that older people in care homes are frequently denied the opportunity to express themselves sexually. Her participants told her, with striking clarity, that they were upset at having to sleep in single beds. One married couple were housed in separate rooms and "allowed" some time together by staff. Expression of sexuality — even in the privacy of their own bedroom — was classified as an "issue to report."

Think about that for a moment. A person's desire to hold their partner, to feel skin against skin, to experience the comfort and affirmation of physical intimacy — classified as a problem. Logged. Reported. Managed.

This is what desexualisation looks like. It is not dramatic. It is not deliberate cruelty. It is the quiet, institutional assumption that when you have dementia, you stop being a person who wants to be wanted. That your sexuality — a core part of who you are — becomes irrelevant the moment your cognition declines. That you become, in the words of the research, "asexual by diagnosis."

Ageist myths which promote older adults as asexual have led the general public, healthcare professionals, and older adults themselves to believe that sexuality, sexual wellbeing and sexual activity are somehow not relevant to older people.

Dr Karen Rennie, Queen Margaret University, Edinburgh (2022)

The Human Rights Framework: What the Law Actually Says

Let us be clear about the legal landscape, because the rights here are not ambiguous.

Article 8 of the European Convention on Human Rights protects the right to a private and family life. This includes sexual autonomy. It does not contain a carve-out for people who live in care homes. It does not expire when a person is diagnosed with dementia. The Health and Social Care Standards in Scotland — the standards against which every registered care service is inspected — are unambiguous. Standard 1.1 states: "I am accepted and valued whatever my needs, ability, gender, age, faith, mental health status, race, background or sexual orientation." Standard 2.2 states: "I am supported to make choices and decisions about my life in a meaningful way."

The Charter of Rights for People with Dementia and their Carers in Scotland, developed by the Scottish Human Rights Commission, explicitly affirms the right to participate in decisions about one's own life and the right to dignity, privacy, and respect.

The UN Convention on the Rights of Persons with Disabilities — which the Scottish Government has committed to incorporating into devolved domestic law — asserts that people with disabilities, including cognitive disabilities, retain all their fundamental rights, including the right to found relationships and the right to be free from interference with their privacy.

So when a care home removes a double bed, refuses to allow a closed door, or treats sexual expression as a behavioural incident, it is not exercising clinical judgement. It is breaching human rights. And the fact that it is done with good intentions — or, more commonly, with no conscious thought at all — does not make it lawful.

The Consent Dilemma: Where It Gets Hard

This is the point in the conversation where care home managers lean forward and say: "But what about capacity? What about safeguarding? We have a duty of care."

And they are right. They do. This is genuinely hard.

In Scotland, the Adults with Incapacity (Scotland) Act 2000 provides the framework for decision-making on behalf of adults who lack capacity. In England and Wales, the Mental Capacity Act 2005 applies. Both rest on the same foundational principle: a person must be presumed to have capacity unless it is established that they do not. Capacity is decision-specific and time-specific. A person may lack the capacity to manage their finances but retain the capacity to consent to a sexual relationship. These are not the same question.

The legal position, confirmed by case law in both jurisdictions, is that the capacity to consent to sexual relations requires the person to understand the nature of the act, that they can refuse, and the possible consequences. It does not require them to remember the name of the person they are with. It does not require them to pass a cognitive test. It does not require them to explain their decision to a professional.

And yet, as Sorinmade, Ruck Keene, and Peisah argued in their 2024 paper in The Gerontologist, the law's requirement for "contemporaneous" consent in England and Wales can have the paradoxical effect of denying people with advanced dementia access to sexual intimacy altogether — even where all the evidence suggests they are willing, happy, and unharmed. The law, designed to protect, becomes the mechanism of exclusion.

The tension between protection and autonomy is real. But too often, care services resolve that tension by defaulting to restriction — not because the person is at risk, but because the service is uncomfortable.

What Care Home Operators Can Actually Do

So what does rights-respecting, legally defensible, person-centred practice look like in this space? Here are seven concrete actions that every care home operator in Scotland — and beyond — should be taking.

1. Start with the presumption of capacity, not the presumption of risk. When two residents form a relationship, the first question should not be "is this a safeguarding concern?" It should be: "are these two people happy?" Only if there are indicators of coercion, distress, or exploitation should safeguarding processes be triggered. Happiness is not a safeguarding concern.

2. Develop a sexuality, intimacy, and relationships policy. Most care homes do not have one. The absence of a policy does not mean the issue does not exist — it means it is being handled inconsistently, reactively, and often badly. The policy should cover: how staff respond to sexual expression; how capacity to consent is assessed (and by whom); how privacy is facilitated; how LGBTQ+ residents are supported; and how families are communicated with.

3. Train your staff — and start with their own discomfort. Research consistently shows that care staff's responses to sexual expression are shaped far more by their own values, culture, and embarrassment than by any clinical assessment. Training must go beyond policy. It must create a safe space for staff to explore their own attitudes, recognise their biases, and develop the professional confidence to support — not suppress — the intimate lives of the people they care for.

4. Provide double beds, lockable doors, and private time. These are not luxuries. They are the basic infrastructure of sexual rights. If your care home does not have a single double bed, ask yourself what message that sends. If staff enter rooms without knocking and waiting, ask yourself what right has been removed. If a married couple cannot spend time together with a closed door, ask yourself whose comfort is being prioritised — theirs, or yours.

5. Assess capacity properly, proportionately, and without prejudice. Capacity to consent to sexual relations is a specific legal question. It should be assessed by a competent professional, using the statutory principles, and documented. It should not be assumed to be absent because the person has dementia. It should not be assessed once and never revisited. And it must never be used as a blanket justification for separating people who want to be together.

6. Engage families with honesty and compassion, not avoidance. Families often struggle with the sexual lives of their relatives in care — particularly when a parent with dementia forms a new relationship. This is understandable and human. But the person with dementia is the rights-holder, not their family. Care home managers must be willing to have difficult conversations, to explain the person's rights, and to support families through their own emotional process without allowing family discomfort to override the resident's autonomy.

7. Record, reflect, and review — not report, restrict, and remove. When a resident expresses sexuality, the instinct of many services is to report it upwards and manage it away. A rights-based approach does the opposite: it records what was observed, reflects on what it means for the person, and reviews whether the service is doing enough to support their needs. Sexual expression should appear in care plans — not incident forms.

   
   

The LGBTQ+ Dimension

The desexualisation of people with dementia hits LGBTQ+ residents with particular force. Research from Stinchcombe and colleagues, published in Dementia in 2024, found that LGBTQ+ people with cognitive impairment and their caregivers reported significant fears about safety, acceptance, and the ability to express their identity in care settings. Many LGBTQ+ older adults spent decades fighting for the right to love openly — and now, in care, find themselves pushed back into a closet they thought they had left behind.

Care homes must actively create environments where LGBTQ+ residents feel safe to express who they are and who they love. This means visible inclusivity — not just a rainbow sticker on the door, but genuine staff training, genuinely inclusive language in care plans, and a genuine willingness to challenge homophobic, biphobic, or transphobic attitudes wherever they appear — including from other residents, families, and staff.

Questions Every Care Home Manager Should Be Asking

• Do we have a policy on sexuality, intimacy, and relationships? When was it last reviewed?

• Have our staff received training that goes beyond safeguarding and addresses their own attitudes?

• Do we have double beds available? Can residents lock their doors?

• How do we assess capacity to consent to sexual relations — and who does it?

• When was the last time a resident's care plan included their needs around intimacy and relationships?

• How would we respond if two residents with dementia wanted to share a bed tonight?

• Do LGBTQ+ residents feel safe to be themselves in our home?

• Are we resolving the tension between autonomy and protection — or are we just defaulting to restriction?

A Final Thought

People with dementia are not former people. They are not reduced versions of who they used to be. They are whole human beings, living right now, with needs, desires, preferences, and rights that do not evaporate because their memory is failing.

The need to be touched, to be held, to be desired, to feel the warmth of another person's body — these are not clinical symptoms to be managed. They are expressions of what it means to be alive. And if our care homes cannot make space for that, we need to ask ourselves what, exactly, we think we are caring for.

The last taboo is not sex and dementia. The last taboo is our refusal to see the person in front of us as someone who still wants to be loved.

Arlene Bunton is Director of Mac Research and Consultancy Limited and a doctoral researcher in dementia and ageing at the University of Stirling. She can be contacted at arlene@macresearchandconsultancy.co.uk.

References and Further Reading

Rennie, K. (2022). Sexual Expression in Persons Living with Dementia. PhD thesis, Queen Margaret University, Edinburgh.

Sorinmade, O., Ruck Keene, A., & Peisah, C. (2024). The Law, Dementia, and Sexuality — Is the Law Striking the Right Balance? The Gerontologist, 64(11), gnae112.

Stinchcombe, A., Oueis, J., Wilson, K., & Wright, D.K. (2024). Safer dementia care spaces: Perspectives from LGBTQ+ people with cognitive impairment and caregivers. Dementia, 24(2), 214–234.

Horne, M., Youell, J., Brown Wilson, C., et al. (2023). Starting conversations about intimacy and sexuality: Designing a tool for healthcare professionals. Frontiers in Dementia, 2, 1235517.

Grigorovich, A. & Kontos, P. (2018). Advancing an ethic of embodied relational sexuality to guide decision-making in dementia care. Dementia, 17(1), 108–121.

Bamford, S.M. (2011). The Last Taboo: A Guide to Dementia, Sexuality, Intimacy and Sexual Behaviour in Care Homes. International Longevity Centre UK.

Royal College of Nursing (2018). Older People in Care Homes: Sex, Sexuality and Intimate Relationships. RCN Clinical Professional Resource.

Alzheimer's Society (2025). Sex, Intimacy and Dementia. Available at: alzheimers.org.uk.

Scottish Human Rights Commission. Charter of Rights for People with Dementia and their Carers in Scotland.

Scottish Government (2017). Health and Social Care Standards: My Support, My Life. Edinburgh.

Adults with Incapacity (Scotland) Act 2000.

Mental Capacity Act 2005 (England and Wales).

European Convention on Human Rights, Article 8.

UN Convention on the Rights of Persons with Disabilities (2006).