Sexual interactions and people living with dementia is a topic that causes much discussion and concern among family members and professionals who are asked to guide or support decision making about these important interactions.
For many people who live with dementia sex remains and in some cases becomes an important part of their wellbeing. They want to experience sexual interaction in some form. In addition to the issue of where the interactions occur (i.e., public situations vs private) the question that causes distress for many is that of consent. If the person is not capable of giving consent because of their diagnosis how can they be regarded as capable of saying yes to something for which we normally require the capacity to give consent?
My proposal is as follows. Although the person may not be able to give full legal consent such as required by law to sign documents or enter into contracts, they may still be able to provide what is known as implied consent. This is the type of consent recognised by law that is based on signs of the person’s behaviour and words that imply or communicate their intent or willingness to engage in the activity. The experience they have is often at an emotional level of attraction or contentment, or anxiety about being in close proximity to another person who may or may not remind them for important attachment figures such as a spouse. In this situation it is not simply sexual experience that is important but intimacy, the experience of closeness and bond that expresses love and affection. This is the social and emotional context of them being able to signal to you that they either want to be in the relationship/interaction or they do not.
The signals they give you by their behaviour are important signals of their internal willingness to participate or not. These signals may include: leaning toward the other person, moving toward the other person, relaxed posture, making and holding eye contact, touching in a relaxed or affectionate manner, smiling at the person and others while with the other person, being content with receiving touch from another, and talking in a relaxed tone and volume. These are the signals that they wish to engage or remain with the interaction. If you do not see any of these signals the interaction should be interrupted.
The signals that the person is not OK or willing to remain in the interaction may include: staring ahead, lack of verbal communication where you would expect there to be some, tense body posture or rigidity, lack of eye contact, movement away from the person, passive cooperation, tension in the voice, other overt signs of anxiety such as shaking, chest pain, headache, and trembling.
Some of the second group of signals above are indicators of freezing that are commonly associated with traumatic reaction to overwhelming experience and may indicate that the person is experiencing something overwhelming that they do not have the words to communicate to you or to the person they are with. They may freeze and show only passive cooperation and no overt signals of distress, i.e., they look calm but on further examination they may not be calm but frozen with fear. What you see is the absence of what you would expect to see if there was overt distress or pleasure. You see nothing. If all you see is calm and no signals of overt pleasure or enjoyment you should interrupt the interaction until such time as you have enough evidence to facilitate it continuing, if at all. No one has the right to impose themselves on others regardless of their diagnosis or marital status.
Some may see this move to interrupt as overbearing paternalistic control. However, the action is required by our duty of care where there is a risk to emotional wellbeing. The risks must be weighed up. What is the benefit if i facilitate this relationship by not doing anything? What is the risk if I interrupt it and one of the parties is annoyed and the other is relieved and can no relax and enjoy him/herself?
I hope this focus on socio-emotional consent and the listing of specific behavioural indicators may help in guiding people to make decisions that either facilitate in the right place or interrupt in the right place, all for the wellbeing of the people involved.