Sex and dementia sounds like a strange recipe. Yet it is an area of growing concern for older people with dementia and those who care for them, both at home and in residential settings. As a clinical psychologist working in aged care settings and with older adults more generally I am often called on to provide behaviour management advice and reports or training to caregivers.
Older people are remaining more robust for longer and being interested in maintaining their sexual lives for longer. In the context of dementia this provides us with a challenge to be responded to well, with an eye on the benefits to the person with dementia and an eye on the risks to others and to the person themselves. The benefits are sustained wellbeing in the form of positive feelings from physical enjoyment as well as social interactions that are pleasurable, that satisfy that deep need we have to form attachments and bonds of affection. The comfort that comes from close physical contact as well as the presence of someone who loves us in an intimate closeness can bring deep comfort that is rare for a person whose brain is gradually limiting their ability to generate these experiences independently.
They must also evaluate risk to others and to the person themselves. The risks are generally in terms of the safety of others who may be affected by a person with dementia not judging the social appropriateness of an action or words. This can be in the form of touching a person in a way that is not welcomed or in a public place that causes embarrassment. It can also be in the form of dominance behaviour that causes distress to someone else who does not give their permission for it. Other risks can be in the form of intrusiveness into private rooms.
When judging whether it is OK for a behaviour or relationship to proceed it is important to check for signs or indicators of wellbeing and illbeing. Signs of wellbeing include positive mood, engagement with others, smiling, relaxed body posture and gestures, creativity. Signs of illbeing include negative mood, crying, depression, withdrawal, listlessness, apathy, being easily walked over. Using this checklist approach to signs of wellbeing and illbeing gives caregivers (paid and unpaid) a semi-objective set of criteria by which to make their judgment rather than just relying on their subjective feelings or personal mores.
In this person-centred approach it is important to recognise that the person with dementia can indicate that they are willing participants in a sexual interaction even though from a medico-legal standpoint they are not able to give consent. The presence of signs of wellbeing and the absence of signs of illbeing show that the person is a willing participant and is feeling good about the interaction. We must continue to monitor for change in this willingness to participate because it can change quickly with the person’s feelings and changes in the activity they are engaging in. It may be that Mary feels good about holding hands with Tom in the lounge as he sits beside her but when he begins to undo the buttons on her dress as they stand in her room she may well begin to feel uncomfortable. If this occurs staff must be ready to respond quickly to retrieve the person to a safe place. This monitoring can be done discretely but frequently.
So sexuality is an essential part of an happy life for most of us and this is the case as dementia progresses and people remain physically and socially interested in maintaining their relationships in their changing time in their lives.