New Alzheimer’s drugs renew focus on care for advanced dementia

New disease-modifying medicines for Alzheimer’s disease are raising hopes for some patients, while also highlighting how many people with dementia remain outside their reach. Kate Irving, writing for The Conversation, argues that the arrival of these drugs should not narrow attention to biology at the expense of care, identity and connection.

Alzheimer’s disease is the leading cause of dementia, Irving wrote, while dementia describes a group of symptoms that can include memory loss, confusion and changes in thinking. The newer Alzheimer’s treatments differ from older drugs because they aim to slow the disease process rather than only ease symptoms.

So far, Irving said, the benefit appears limited to delaying worsening symptoms by months rather than years. The drugs also carry a small risk of serious side effects, including brain swelling and bleeding, and they are currently appropriate only for some people in the early stages of Alzheimer’s disease.

That leaves many people with dementia, including those with more advanced illness, facing the condition without a cure. Irving said scientific progress remains essential, but public enthusiasm for drugs can pull attention away from the daily lives of people living with dementia.

Care beyond drug treatment

Social scientists have long pushed for a wider view of dementia, according to Irving. The condition begins with brain changes, but it also affects communication, relationships, memory and a person’s ability to make sense of the world.

Good care, Irving wrote, must therefore address more than decline measured in clinical terms. It should help people feel seen, connected and still recognized as themselves, even when medicine cannot stop the disease.

Creative and social practices can support that goal, she said. Music, poetry, storytelling, theater, visual art, dance and museum-based work may give people with dementia ways to respond and connect when ordinary conversation becomes difficult.

Those effects can be hard to capture in the same way researchers measure a drug response. Irving pointed to moments such as singing along to a familiar song, reacting to an image, laughing with others or briefly becoming more engaged as meaningful forms of connection.

She also warned that dementia is often described in harmful terms in print and on social media, including phrases that compare people with dementia to “zombies” or “empty shells.” Such language, Irving wrote, can suggest that a person has already vanished, even when they remain alive and capable of response.

Advanced dementia and silence

Irving said another divide can emerge if attention centers only on people who can still speak, sing, paint or respond in recognizable ways. People in the latest stages of dementia may then be treated as unreachable, excluded from research or overlooked in creative and relational care.

In a recent publication, Irving and colleagues examined engagement with people in very late-stage dementia through two ideas: narrative dispossession and critical fabulation. Narrative dispossession refers to losing control over one’s own story as the ability to explain, remember, correct or describe experience weakens.

Critical fabulation, Irving wrote, comes from work on history, archives and silence. In dementia care, it can mean carefully and modestly imagining what a person may be feeling or communicating when direct evidence is limited.

Irving stressed that such interpretation must remain restrained. Family members and caregivers may know someone’s history and habits well, but they can still project their own assumptions or take over another person’s story.

Refusing all imaginative engagement also carries a risk, she wrote, because silence can become erasure. For Irving, the challenge is to keep asking what a person may be experiencing while remaining honest about the limits of knowing.

This story draws on original reporting from Medical Xpress.