Why a course on sexual health and dementia
Megan DePutter: "Well-intended concerns about consent and capacity may lead to withholding information or efforts to restrict or manage sexual behaviour in ways that may be inappropriate."
Terrence Higgins Trust has partnered with Alzheimer Scotland to offer a course on Sexual Health and Dementia (for course details see bottom of post) in our new Learning Centre. Sexual health needs might not be the first thing you think of when it comes to supporting people with dementia. But sexual health is important for everyone. Here are a few reasons why we at Terrence Higgins Trust Scotland and Alzheimer Scotland felt it was important to create a course on Sexual Health and Dementia.
1. The sexual health needs of people with dementia are not always understood or respected.
It’s very easy to assume that people are, or are not, at risk for poor sexual health, based on their age, gender, sexual orientation, ability/disability, or any other superficial feature. And perhaps due to this fact, people who don’t fit the mould can easily get left out of sexual health strategies and interventions.
We see the results of this in climbing STI and HIV rates and late diagnoses among older adults. HIV diagnoses in people over 50 have almost doubled in the last decade, and 37% of new HIV infections in 2014 among heterosexual people in the UK were aged 45 or older. In other words, HIV diagnoses are increasing in number and proportion among this population.
Getting people tested and on treatment is imperative, both as a prevention strategy and for the health and wellbeing of the individual. In fact, 24% of deaths that occurred among HIV-positive adults in the UK were directly attributable to the diagnosis of HIV being made too late for effective treatment (Cevik, M., Raha., D., Much, C., Leen, C., 2016).
Similarly, STI diagnoses in the UK have increased by 25% among people aged 45-64 and have increased by 38% among people aged 65 and up! The results of this data tell us loud and clear: older adults are having sex with new partners. And they aren’t being given the information or supports they need to prevent HIV and Sexually Transmitted Infections.
So if this is what we are seeing among older adults in general, we have to wonder about the sexual health needs of other people who don’t fit the mainstream mould of acceptable sexuality.
We want to help people who work or care for people with dementia to consider a wider version of who deserves to be sexually active and sexually healthy – and how this might be achievable for people with dementia.
2. Concerns about consent and capacity
Well-intended concerns about consent and capacity may lead to withholding information or efforts to restrict or manage sexual behaviour in ways that may be inappropriate. These scenarios can be complex, but legislation is currently in place to safeguard human rights in such situations and we want to take a look at how that can guide our response. While some areas involving sexual health and dementia can be complex, and there is rarely a very clear answer, following the ‘FAIR’ approach (developed by the Scottish Human Rights Commission) presents a guide: Facts, Analysis of rights at stake, Identification of shared responsibilities, Review actions. As my colleague at Alzheimer Scotland said, ‘If you use a Human Rights Based Approach, you can’t go too far wrong.’
3. HIV increases the risks for dementia and makes it harder to treat
It’s important to include people living with HIV into this discussion, in part because people living with HIV can be more at risk for dementia. While HIV-Associated Dementia, the most serious form of HIV-Associated Neurocognitive Disorder, is uncommon today thanks to anti-retroviral therapy, people with HIV can still be impacted by more milder forms of neurocognitive impairment and can be at risk to other types of dementia as well. Part of this has to do with the biological impact the disease has on the body: HIV weakens the immune cells that protect the neurons in the brain. Chronic inflammation caused by the disease can also play a contributing role. And people with HIV are also more likely to experience cardiovascular disease, itself a known risk factor for dementia.
But some of the other reasons are linked to the social determinants of health. We know that neuro-cognitive health is boosted by taking part in social activity, trying and learning new things, and basic supports like adequate housing. Work or volunteer opportunities, lifelong learning and social networks are important parts of preventing and treating dementia. However, people with HIV can face a number of barriers, partly due to marginalisation and stigma, which makes accessing these basic supports more difficult. That puts them at greater risk and makes dementia harder to treat. People living with HIV are, for example, much more likely to experience depression, anxiety, and social isolation. They have higher rates of smoking and substance use, which may be used as a method to cope post-HIV diagnosis. They are also more likely to experience inadequate housing and poverty. While the social-determinants of health can be linked to HIV-infection, the experience of poverty may also come from interrupted career goals in relation to discrimination, the expectation of a shortened lifespan, or the results of episodic illness due to the disease.
Furthermore, HIV stigma is everywhere and that includes care homes, health care and social services. With the ageing population, I fear that some workers who support people who are living with HIV and dementia might not have current knowledge on the disease. Despite having made tremendous advances in the field both from a human rights and HIV treatment standpoint, many people still have out-dated notions of how HIV is spread and what the legislation says about confidentiality and disclosure.
4. Sexual health for people with dementia must include the needs of LGBTI individuals
We simply cannot talk about sexual health without also talking about sexuality, and specifically the impact of homophobia and transphobia and other inequalities. It is important that when providers wade into the murky waters of sexual health, they are aware of these inequalities and how these inequalities may impact individuals, especially those living with dementia or HIV, who are already likely to experience multiple layers of stigma. We cannot forget that there is a power gap between the provider and recipient of care. Given the vulnerabilities that come with dementia, HIV, or any illness, and the genuine risks that may accompany prejudice, people may choose not to be open about how they identify. This can lead care providers to make the incorrect assumption that they do not support people who identify as LGBT. Increasing understanding and sensitivity to these issues can help empower service providers to address sexual health in an informed, equitable and inclusive fashion. And that’s really want we want for everyone.
Terrence Higgins Trust Scotland, Breckenridge House, 274 Sauchiehall Street, Glasgow, G2 3EH. Our bright, spacious facility is fully accessible.
This course will run on Tuesday 14 March, 10am-4pm
We offer a diverse range of training courses. Please join our mailing list if you wish to be kept up-to-date with opportunities as they emerge.
Eaton, A. “Exploring the Role of Social Work in Supporting People Affected by HIV-Associated Neurocognitive Disorder (HAND).” ProQuest Dissertations & Theses Global (2016).
Eaton, A., Craig, S., Watchorn, J., McCullagh, J., Mukandoli, C., Wallace, R., & McClure, D. “HIV, Social Work, and Brain Health: Community Report.” AIDS Committee of Toronto (2016). https://issuu.com/actoronto/docs/brain_health_report_final_web
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