The last sweet years or bad romance? Handling infidelity in the nursing home

Ulf suffers dementia and lives in a nursing home. He often interacts with Lena, who also has dementia. They seek each other out, invite each other to their rooms, hold hands and kiss. They can clearly express what they prefer (or not). The staff think they enjoy life and each other’s company. There is just one problem for the happy couple: Ulf is married, and his wife is not happy. She and their children strongly dislikes the relation between Ulf and Lena and asks the staff to keep them apart. They argue that if Ulf had been free of dementia he would not have desired contact with Lena; he might sometimes even be confused and think Lena is his wife.

The situation was posed as a question to the ethics committee of the National Board of Health and Welfare in Sweden, and it recently responded that the staff should not try to interfere in the relationship: the welfare and autonomy of Ulf is prior to the wishes of the family. An earlier question dealt with a somewhat similar case, where the cuckolded wife demanded that her husband be both separated from the other woman and medicated to “dampen” him. The committee found that it would be against the autonomy of the man to be medicated against his will, and the staff did not have a right (legally or morally) to prevent patients from seeing each other.

The interesting question is what to make of romances that come about due to dementia. Are they authentic? How do they relate to the interests expressed earlier in life?

First, it is pretty clear that the patients at least in these cases do have autonomy. They have clear preferences in the present, they do make choices, and likely have capacity to deal with their own lives within the nursing home. However, if a person consistently confuses another one for their spouse it can be argued that they do not have the capacity of making the right choices about their love. Capacity might not be true in all cases, but in the following I will assume the patients have the elements of capacity.

Is a love that come about due to dementia authentic and worth respecting?

One approach would be to ask, since attraction happens due to mechanisms in the brain, why we should think attraction in one brain is any more authentic than attraction in any other brain – demented or not. But typically romantic love is believed to be an expression of a whole person: it is not just the result of a small partner-detection subsystem triggering independently of everything else, but linked to a complex web of personality, past emotions and memories, social ideas, subconscious patterns of attraction and repulsion. The whole person is (ideally) involved on all levels. Somebody getting attracted to another just because of an external or internal stimuli cannot be said to have the same level of authenticity, especially if the target is somebody who they would (given past experience) not be attracted to. A good example is the case where a brain tumor caused a man to develop pedophilia (paper), and where the urges disappeared when the tumor was removed. The desires and behavior was not consistent with his past, or with his moral understanding.

So the question is whether the romantic relations in the above cases are due to the whole person or just a malfunctioning brain. I doubt there is any simple answer. But it is worth considering that at least some people with dementia appear to regress to an earlier age: they retain well-consolidated memories from youth and core personality traits remain, despite the losses in other dimensions. In this case one might argue that attraction might be quite authentic: it is due to the strong core elements of the person, shorn of later complications. In other cases there is personality change that might make the relationship plausible given the current personality but not the past one: it might be authentic in the present but not when considering the entire life of the patient.

If we cannot recall past promises (and cannot avoid forgetting them), we are not morally bound by them. It can be argued that the past, healthy person would not have wished to be unfaithful. They presumably had interests about the shape of their future marital life, traditionally expressed in wedding vows. We should generally respect stated interests of people even when they are no longer capable. However, wedding vows rarely seem to prevent infidelity. People often underestimate how much their personalities, values and preferences are going to change in the future, making their stated commitments a great deal less reliable than they intended. People fall in (and out of) love not just because of their brains but their overall life context. Suffering dementia and living separated from one’s spouse in a nursing home is a serious change of life context: it would be strange if people did not react to it, including by changing their relationships. We might not want to be unfaithful due to dementia, but the dementia is a necessary precondition for the unfaithfulness in this case: what we really want is not to get dementia in the first place, since it no doubt is going to cause many other undesirable future behaviors and experiences.

If we are serious about enforcing our earlier commitments we might create advance directives, constraining what our future self can do regardless of what they think (for example, telling the nursing home staff on admission to help maintain one’s fidelity). But the thought of being constrained what an earlier self desired – given that we have grown and changed – is often disagreeable, so such directives will likely be rare. It is also debatable to what extent “Ulysses contracts” can be morally or legally binding. While autonomy includes the power to bind oneself to a course of action, it also includes the freedom to change one’s mind. The standard problems are compounded here because dementia might weaken the identity link to the future self: they are literally a different person, and the past self cannot morally claim any paternalistic power over them.

We might find it unfortunate that respecting the autonomy and well-being of people may force staff and family to tolerate infidelity. But insofar it is an expression of genuine will and produces genuine happiness, it might still be a gleam of sunlight in the late autumn of life.