Alzheimer’s and Ambiguous Loss: The Grief of Caring for a Loved One

It is possible to imagine a parent growing older, needing care and, one day, passing away. What is much harder to prepare for is the moment when, within that relationship, you find yourself becoming the parent to your own mother or father.

During World Alzheimer’s Month, exploring the perspective of family caregivers means looking closely at this profound transformation. The person living with the disease remains at the heart of care, but dementia affects an entire network of relationships: it changes family dynamics, disrupts established routines and reshapes the roles of everyone involved.

Healthcare professionals have knowledge, tools and protocols to help them deal with the disease, despite the emotional involvement that inevitably comes with caring for another person. For family members, however, the transformation is also deeply personal. They must learn to care for someone with whom they have built a shared history, while some of the familiar reference points within that history gradually begin to disappear.

In an interview with Revée News, Maria Angela Caputo, psychologist and psychotherapist at AIMA Firenze, describes this experience starting from one fundamental idea: “Dementia is not a disease that affects one person alone. It is a disease that affects the family and the entire support network.”

Her words highlight the social and relational impact of dementia alongside its clinical dimension.

Living with a family member who has dementia can mean experiencing anger and compassion, the desire to protect them and the need to step away, willingness to help and sheer exhaustion—all at the same time. Vulnerability affects both the person living with dementia and those caring for them. Understanding what is happening may take time, support and the freedom to acknowledge emotions that can sometimes be difficult to admit.

Ambiguous loss and the loss of one’s role in Alzheimer

Caputo has worked in the field of dementia for almost thirteen years. Her experience includes supporting families as well as her own personal experience as a caregiver. In her work with children and spouses of people with dementia, she often encounters the pain caused by the transformation of the relationship with someone they love.

This is what is sometimes described as ambiguous loss: grieving for a loss while the other person is still physically present.

“My mother, the person I used to turn to when I needed help, is no longer there in the same way, and now I have to become a mother to her,” the psychotherapist explains, describing the experience of a daughter caring for her mother.

A mother may look at her daughter and call her “Mum”. At that moment, the reversal becomes explicit: the person who once represented a source of guidance and security is now seeking protection from the very person she raised.

The pain involves not only what is happening to the parent, but also what is happening to the caregiver. “I also have to work through the loss of my role as a daughter,” Caputo observes. She describes the experience as “in some way becoming an orphan without actually being one.”

The expression captures the pain of no longer being able to rely on the relationship in the form in which it was once known. The person is still there, with their value and their needs, but reciprocity, recognition and the possibilities for communication begin to change.

For family members, holding these two realities together can be difficult: continuing to be present while simultaneously acknowledging that something has been lost. Caregiving therefore enters an intensely personal dimension, in which even ordinary daily gestures can bring back the contrast between what the relationship once was and what it has become.

Awareness without adding guilt

Faced with such a profound transformation, asking a caregiver to “accept” the disease may seem like a natural response. Caputo, however, encourages us to consider the weight carried by that word.

“It is difficult to accept a disease like this,” she says. In her work with families, she has seen how the expectation of acceptance can create an additional burden: caregivers may feel guilty because they are unable to experience the situation in the way others seem to expect them to.

A family member may understand the diagnosis and the explanations they have been given, yet still experience anger, pain or resistance. Knowing that a particular behaviour is caused by the disease does not automatically make experiencing it less painful. Understanding why a parent no longer recognises you does not erase the need to be recognised.

For this reason, Caputo prefers to speak of awareness: a process that involves understanding the disease and its effects while also paying attention to what is happening within the person providing care.

“We have to accompany the person on this journey,” Caputo explains, referring to the long course of the disease. She then adds another crucial point: “We also have to accompany ourselves.”

This is precisely where caregiver support becomes essential. It can help people understand the changes taking place, redefine relationships and find words for the emotions that accompany them.

Anger and compassion can exist at the same time. A caregiver can understand another person’s vulnerability while still feeling overwhelmed by their needs. They can want to protect someone while also desperately needing a break. Making room for this complexity means recognising the caregiver as a person going through an experience that also puts their own emotional balance to the test.

Alzheimer’s: when another person’s past becomes their present

One of the challenges discussed in the interview is the distance that can emerge between the reality experienced by family members and the reality experienced by a person with dementia.

Caputo gives the example of an elderly mother who says she is twelve years old and asks where her parents are. To the person beside her, the question may seem incomprehensible: they know her age, her history and how much time has passed. For the person with dementia, however, that memory may have become her present reality.

In such a situation, the psychotherapist explains, reminding her that her parents have died may cause her to experience the grief as though it were happening for the first time.

“I am not simply reminding someone that their parents are no longer alive,” Caputo observes. In her example, the information is being received by someone who feels like an adolescent and may experience the news of that loss as something entirely new.

The aim of support is therefore to help family members understand these situations and find appropriate ways of relating to the person.

“We can no longer expect them to enter our world. We are the ones who have to enter theirs, including their way of communicating,” Caputo emphasises.

This process can be emotionally demanding. Some family members describe it to her as living in a “world of lies”: they feel they are being asked to go along with a reality that no longer corresponds to the one they shared until recently.

Caputo offers a different interpretation, describing it instead as a “world of acceptance and understanding”. Recognising what the person is experiencing can make it possible to find a point of connection, even when familiar forms of communication no longer work. To do this, caregivers themselves may also need support.

Benjamin Button: an image that helps explain disorientation

During the interview, Caputo’s account suggests a connection with The Curious Case of Benjamin Button, the film in which the protagonist is born old and moves through life growing progressively younger.

It is an image that can help convey the disorientation experienced by family members when an adult they love appears to inhabit an earlier period of their own life.

The cinematic reference highlights the distance between two different experiences of time: that of the caregiver, who knows the person’s history and the years they have shared, and that of the person with dementia, for whom an experience from the past may become the reality of the present.

“I very much recognise the interpretation you give of the film,” Caputo says, referring to this “journey back through time”. She also adds an important qualification: “There is nothing romantic about the disease.”

The image helps make a difficult experience more understandable to those who have never lived through it.

“It is a world in which I, as the daughter, may no longer exist, or in which I may take on the role of the mother,” Caputo explains.

Understanding this dimension can help families find new ways of connecting with their loved one, but it also means confronting the pain created by that transformation.

The reference to Benjamin Button makes this reversal particularly visible. While the caregiver continues to live in the present of their shared history, the person they love may recognise them through a completely different moment in their own life.

Listening to what can no longer be expressed in words

The transformation of the relationship also affects language. When a person can no longer express themselves as they once did, family members have to learn to observe gestures, behaviours and other signals that may communicate a need.

Caputo recalls the case of a woman whose daughter described her as aggressive. A caregiver noticed that before these episodes of anger, the woman tended to touch her cheek. Medical examinations eventually revealed dental pain caused by tooth decay.

Her behaviour had been communicating discomfort that she was no longer able to explain verbally.

The example highlights the importance of not automatically attributing every behavioural change to dementia. Family members can observe and report what they notice, while the assessment of symptoms and any other possible medical conditions remains the responsibility of healthcare professionals.

This kind of daily attention forms part of the caregiving burden. Someone who once knew the person’s language, habits and reactions must now find new ways of understanding them, while living with the uncertainty of whether those signals are being interpreted correctly.

Changing the language and stereotypes surrounding Alzheimer’s

The burden experienced by families can also be intensified by the stigma that still surrounds dementia. Caputo notes that some people struggle to speak openly about a parent’s illness.

Language plays a role in perpetuating this stigma. During training sessions, the psychotherapist draws attention to the use of words associated with dementia as insults—terms used to describe someone as foolish or incapable of understanding.

A person with dementia, she explains, is instead someone who is progressively losing certain abilities because of a disease. Confusing a medical condition with a judgement about an individual’s worth only creates greater distance and misunderstanding.

“They are still people who are present. They are still people who are living,” Caputo stresses.

The way people with dementia are described also affects our ability to recognise their needs and ensure that they remain part of social and family relationships.

The same attention should be extended to caregivers. Describing them solely through the language of sacrifice risks overlooking an essential part of their experience. The willingness to care can coexist with anger, exhaustion and helplessness. These feelings also need space within the conversation because they are part of the transformation the caregiver is experiencing.

From World Alzheimer’s Day to World Alzheimer’s Month

September 21 remains World Alzheimer’s Day, within September’s broader World Alzheimer’s Month awareness campaign. Extending the conversation beyond a single day highlights the need for knowledge and awareness to reach the wider community and become part of everyday life.

Caputo also stresses that the awareness experienced by the person with dementia deserves attention. In the early stages of the disease, people may recognise the changes they are going through and suffer because of them. Bringing the caregiver’s perspective to the forefront therefore means adding another dimension to the story of the disease while keeping both experiences visible.

“If I only speak to people who already know this disease, the impact risks being limited,” she says.

For this reason, AIMA Firenze also promotes cultural initiatives aimed at a wider audience, helping people understand the suffering and isolation that families affected by dementia may experience.

Alongside these activities, the association provides guidance, support in navigating local services and psychological assistance. Caputo describes free programmes that are available even to people who are not members of the association, giving family members access to information and a space where they can be heard. This support also extends to practical challenges, including bureaucracy and finding appropriate local services.

“We know very well that the emotional burden on family members can be extremely heavy,” the psychotherapist says, “because the relationships and support networks within the family have to be redefined.”