We Need to Talk About Dementia

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A resident at the Rachel Lichak Home for Senior Citizens, in August.

As I left the movie theater last weekend after watching “The Father,” I overheard a man ask his female companion, “Was that what we needed for a night out on Friday?” And then, in a slightly more empathetic tone: “Is that what your mother has?” We had been nearly alone in the tiny theater. Last month, too, after “Supernova,” the closing film of the Tel Aviv International LGBT Film Festival, it seemed that not everyone had been emotionally prepared for the movie’s candid depiction of dementia.

These movies, along with others from recent years like “Still Alice” and “Remember Me,” indicate that cinema has become a key arena for a discussion that most of us seek to avoid – about the unprecedented situation in human history, in which, due to increasing longevity, a large proportion of people experience significant cognitive decline in old age. According to Health Ministry figures, about 10 percent of us after age 65 and 30 percent after 85 will experience this incurable condition, most commonly in the form of Alzheimer’s disease. The World Health Organization reports that about 55 million people worldwide live with dementia, with 10 million more joining each year.

The two recent movies present two very different angles. “The Father” aims to provide a glimpse into what is happening in the brain of someone who is already experiencing confusion and memory loss, and also depicts the heavy burden that falls on family members when their loved one is in a state of advanced dementia. “Supernova” is about the difficult and controversial decision of a man who knows his brain is going to steadily lose more and more of its abilities to end his life, because he doesn’t want to lose who he is or become a burden on his loved ones.

Both movies feature top-tier actors. As the lead in “The Father,” Anthony Hopkins brings to the screen a range of emotions and behaviors that only a phenomenal actor like him could pull off: denial, anger, forgetfulness, wariness, confusion and fear, while his relationship with his caretaker daughter, the marvelous Olivia Coleman, veers between tenderness and fierce clashes. Throughout the film, it’s unclear to viewers what is actually happening and what are illusions produced by the father’s brain, as he loses his grip on reality.

In “Supernova,” Stanley Tucci plays a writer in the early stages of dementia; Colin Firth is his loving partner. These two wonderful actors poignantly illustrate the dilemmas that arise when one learns they have the disease and are aware of its implications, and have to face questions about what makes a life worth living, and about the right to die with dignity.

In a study I conducted of men and women with a widowed parent with dementia, I heard very moving stories about the challenges this situation poses. From what I learned from the study’s participants, I defined this as a situation in which the children become parents to their parents. To the question I asked at the end of the interviews – whether their journey with the parent led them to any conclusion regarding themselves, most of the subjects replied that their wish for themselves was never to be in this situation.

As a sociologist and legal scholar, I am interested in the ways in which the law and society shape these challenging situations. I have found that, when it comes to dealing with dementia, Israel tends to the extreme, in at least two ways. On the one hand, the state does not allow people to choose to end their lives with dignity. Euthanasia and assisted suicide are illegal; moreover, it is forbidden to disconnect people from machines that prolong life after they have been attached to them, even if they request it. The law does permit us to ask from the outset not to be hooked up to machines, but this request is only taken into consideration in end-of-life situations, and dementia per se does not fall into this category.

On the other hand, Israeli families insist on medical treatment in situations where, in other countries, it would commonly be withheld in order to spare a person more suffering from unnecessary interventions. For example, a study by Efrat Gil and others, published in 2020 in the (Hebrew) book “End of Life,” (Tel Aviv University and Hakibbutz Hameuhad Press), found that, in Israel, legal guardians of advanced dementia patients who have stopped eating usually instruct that a feeding tube be inserted. Even though this failure to eat generally indicates end-stage illness, and despite the worldwide consensus that this invasive procedure provides no benefit, and that force-feeding should be avoided in cases of severe dementia.

The two new films offer an opportunity for forthright conversations about severe dementia – conversations with ourselves and with our family about our wishes; with lawyers and doctors who can help to formulate relevant legal and medical documents (such as a durable power of attorney and advanced medical directives); and among the policymakers regarding the law, which needs to be adapted to the new reality. All of these conversations are necessary in order to ensure that longer life spans do not have to come at the cost of terrible and pointless suffering.

Daphna Hacker is a professor in the law school and the head of the women and gender studies program, both at Tel Aviv University.

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