Today on the 25th of November, we mark the International Day for the Elimination of Violence against Women. Join our anonymous member as they bravely share their experiences living with younger onset dementia. Unravel the impact on emotions, intimacy, and the importance of sexual consent. Let's foster understanding and respect for all, ensuring safety and dignity.
I was diagnosed with younger onset dementia when I was in my mid forties. It became apparent over time that dementia was much more than a loss of memory. In fact my memory in general was ok, it was the functioning of daily life that I could no longer manage well.
I’ve come here today to share one of these functional challenges related to intimacy - and what we can learn from my experience.
We know from statistics from the Aged Care Royal Commission that there are about 50 sexual assaults in residential care every week in Australia. Shocking to me is the fact that staff believe that in 58% of these assaults, there was no ill effect on the victim.
I’ve learned from having dementia that I have changed from a thinking woman with feelings, to a feeling woman with thoughts. I’ve spoken with other people living with dementia and they’ve had similar experiences.
For example, you can ask me what I had for dinner last night. I won’t have a picture memory of that, but I may have a feeling in response to your question. I can use that as a clue to what dinner might have been, in terms of whether or not I enjoyed it. I may feel the feeling I associate with contentment, or perhaps repulsion if cabbage was on the menu. In other words, I have resorted to interpreting or translating the subtle feeling inside of me, as a basis for how to respond or behave.
But this other way of living can also be unreliable. You can understand that the feelings I have, like most people, were learned in my childhood and are not necessarily logical or based on fact. At the moment, I can make sense of these feelings, but not always, and not in the moment.
Now that I’ve given you some context, I’d like to talk about intimacy in dementia. It’s a delicate and taboo subject, as we are supposed to be ‘past all that’ and in ‘god's waiting room’. The real world is not like this of course. In my case, dementia rudely intruded on my personal life in a most distressing way.
My husband and I have a respectful and fulfilling relationship, however I was finding that I was increasingly reluctant to be intimate. I had feelings of resentment, revulsion, fear, panic, nausea and could not find any reason - so I carried on without listening. Eventually, at a very personal time, I had a very extreme response. I was crying, shaking and extremely upset. He couldn’t understand. He had not hurt me.
After some personal thought, I realised that my great system of navigating the world through my emotions had backfired.
As a young girl, I was sexually abused by an older man for a number of years. My mind had taken me back in time, and I truly felt like it was happening again. My ability to separate the past and the present subconsciously was gone.
However, something good came from this horrible experience. My husband and I had to take a fresh look at how we relate to each other, and consent will never, ever be taken for granted again. We have implemented a clumsy but effective system of process consent, where he constantly checks in and makes sure I'm with him and that I’m ok. Sure it’s not very spontaneous, but this respect has helped me build trust.
Now my purpose in sharing this experience is not to elicit compassion or emotion, but to show you that even when a person is living with dementia, our feelings and emotions are fully intact. We experience everything inside, even more than everyone else. The only difference is that these emotions are generated inside of us and not necessarily in response to what is happening in real time.
To say that there are no negative effects of sexual assault, is really saying that the victim is not displaying the emotions you expect to your satisfaction. This is unacceptable. There is no other disability where this lack of education would be tolerated. There is always harm from sexual assault, and we should not have to be giving you behavioural cues, we expect you to have the education and professionalism to already know this.
When I think into the future about when I might need residential care I feel scared and vulnerable. Will I be one of the 58% that are just left to live with it? Will staff assume that I ‘wanted it’ because I didn’t say no? Sexual consent is critical at any time in our lives. It doesn’t become less important as we get older.
What can residential aged care service providers do?
There are many things residential aged care service providers can do to promote sexual consent for people living with dementia.
The Charter of Sexual Rights and Responsibilities
The #ReadyToListen Charter of Sexual Rights and Responsibilities in Residential Aged care is a good start to guide staff. However, if it doesn’t make sure staff take into account the wishes of the resident – it's just noise.
We would really like to be consulted about our wishes. Just as you ask all the questions for consumer centred care, maybe consider privately asking the individual about their wishes in relation to sex. When they can no longer consent or can no longer respect the other person’s wishes – what do they want? Staff should discuss this with residents, and sometimes they might need to make sure the resident's partner is not present.
Having the resident’s wishes documented formally will empower you to protect us from ourselves and from others. This will preserve our dignity and the memory of the person we were. Most men living with dementia I’ve spoken to are horrified at the thought that they might become a ‘sex pest’ and deeply want to protect themselves and others. Applying the Charter to our care could give all of us some certainty that you will ask us what we want, and that you will try to make sure we are safe from ourselves and others.
Sexual consent is included in the Charter. Affirmative consent is important– and it's more than the absence of yes means no. Include free agreement – make sure the resident is not being coerced or isn’t mistaking the identity of their sexual partner or the nature of the sexual act. Make it clear how decisions about sexual consent are made and who makes them.
Staff are always encouraged to do more training, but it would be so valuable and empowering if we residents were also trained to some degree. The laws and community values around sexual consent have changed over time, and these changes are so empowering, especially for older women. Please consider sharing this empowerment with your residents, and help them contribute to their own sexual safety.
Report, - always
When a sexual assault occurs, there is no question that there is harm to the victim. This is a given, and how the victim displays their pain bears no relationship to the action that must be taken. Sexual assault must always be reported to the Serious Incident Response Scheme (SIRS) as a Priority 1 incident.
Trauma informed care
Staff need to understand that so many residents have experienced trauma – whether they have told you about it or not. If a person with dementia says they have been sexually assaulted in residential aged care, that does not automatically mean they are recalling a childhood sexual assault. A sexual assault in aged care can also trigger memories of earlier trauma. You need to listen and you need to provide support.
Please imagine you are in the situation of having been sexually assaulted, you have the feelings of it, but can’t communicate those feelings, or relate them to any event as the memory is gone. You still feel the distress but can’t say what it relates to.
Understand what the resident is feeling and act to make sure they feel safe and are not distressed. Understand that there may be triggers, for example if the victim is in the same room, same surroundings, same everything – it may not help them feel safer. Please consider changing at least something, by way of acknowledgement, and to signal to the resident that they have been heard and are being actively protected.
Give them the option to access a sexual assault counsellor – they don’t have to be able to speak to benefit from someone who can provide them with professional support.
This may seem meaningless to you, if you are still in the head space that action is not worthwhile unless the recipient is grateful or responsive, but I'd argue that inside the heart of the person, it will be appreciated.
This paper is about sexual consent – but it has focused on sexuality and intimacy more broadly. If you are going to help people living with dementia navigate sexual consent you need to be confident and comfortable talking about sexual intimacy. We need you to know that intimacy matters to us – because we are human beings. We want you to know the facts about sexuality and we want you to ask us about what we want. Sexual consent isn’t a tick box. It's about understanding our human right to sexual intimacy – and understanding that we all need to have the conversations, even when they are not comfortable. We need you to help make sure we are safe.