Dementia is often described as “the long goodbye”. Although the person is still alive, dementia slowly and irreversibly chips away at their memories and the qualities that make someone “them”.

Dementia eventually takes away the person’s ability to communicate, eat and drink on their own, understand where they are, and recognise family members.

Since as early as the 19th century, stories from loved ones, caregivers and health-care workers have described some people with dementia suddenly becoming lucid. They have described the person engaging in meaningful conversation, sharing memories that were assumed to have been lost, making jokes, and even requesting meals.

It is estimated 43% of people who experience this brief lucidity die within 24 hours, and 84% within a week.

Why does this happen?

Terminal lucidity or paradoxical lucidity?

In 2009, researchers Michael Nahm and Bruce Greyson coined the term “terminal lucidity”, since these lucid episodes often occurred shortly before death.

But not all lucid episodes indicate death is imminent. One study found many people with advanced dementia will show brief glimmers of their old selves more than six months before death.

Lucidity has also been reported in other conditions that affect the brain or thinking skills, such as meningitis, schizophrenia, and in people with brain tumours or who have sustained a brain injury.

Moments of lucidity that do not necessarily indicate death are sometimes called paradoxical lucidity. It is considered paradoxical as it defies the expected course of neurodegenerative diseases such as dementia.

But it’s important to note these episodes of lucidity are temporary and sadly do not represent a reversal of neurodegenerative disease.

Why does terminal lucidity happen?

Scientists have struggled to explain why terminal lucidity happens. Some episodes of lucidity have been reported to occur in the presence of loved ones. Others have reported that music can sometimes improve lucidity. But many episodes of lucidity do not have a distinct trigger.

A research team from New York University speculated that changes in brain activity before death may cause terminal lucidity. But this doesn’t fully explain why people suddenly recover abilities that were assumed to be lost.

Paradoxical and terminal lucidity are also very difficult to study. Not everyone with advanced dementia will experience episodes of lucidity before death. Lucid episodes are also unpredictable and typically occur without a particular trigger.

And as terminal lucidity can be a joyous time for those who witness the episode, it would be unethical for scientists to use that time to conduct their research. At the time of death, it’s also difficult for scientists to interview caregivers about any lucid moments that may have occurred.

Explanations for terminal lucidity extend beyond science. These moments of mental clarity may be a way for the dying person to say final goodbyes, gain closure before death, and reconnect with family and friends. Some believe episodes of terminal lucidity are representative of the person connecting with an afterlife.

Why is it important to know about terminal lucidity?

People can have a variety of reactions to seeing terminal lucidity in a person with advanced dementia. While some will experience it as being peaceful and bittersweet, others may find it deeply confusing and upsetting. There may also be an urge to modify care plans and request lifesaving measures for the dying person.

Being aware of terminal lucidity can help loved ones understand it is part of the dying process, acknowledge the person with dementia will not recover, and allow them to make the most of the time they have with the lucid person.

For those who witness it, terminal lucidity can be a final, precious opportunity to reconnect with the person that existed before dementia took hold and the “long goodbye” began.

Yen Ying Lim, Associate Professor, Turner Institute for Brain and Mental Health, Monash University and Diny Thomson, PhD (Clinical Neuropsychology) Candidate and Provisional Psychologist, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

In the aftermath of the tragic Bondi knife attack, Joel Cauchi’s parents have spoken about their son’s long history of mental illness, having been diagnosed with schizophrenia at age 17. They said they were “devastated and horrified” by their son’s actions. “To you he’s a monster,” said his father. “But to me he was a very sick boy.”

Globally, one out of every eight people report a mental illness. In Australia, one in five people experience a mental illness in their lifetime.

Mental illness and distress affects not only the person living with the condition, but family members and communities. As the prevalence of mental health problems grows, the flow-on effect to family members, including caregivers, and the impact on families as a unit, is also rising.

While every family is different, the words of the Cauchis draw attention to how families can experience distress, stress, fear, powerlessness, and still love, despite the challenges and trauma. How can they help a loved one? And who can they turn to for support?

The role of caregivers

Informal caregivers help others within the context of an existing relationship, such as a family member. The care they provide goes beyond the usual expectations or demands of such relationships.

Around 2.7 million Australians provide informal care. For almost a third of these the person’s primary medical diagnosis is psychological or psychiatric.

It has long been acknowledged that those supporting a family member with ongoing mental illness need support themselves.

In the 1980s, interest grew in caregiving dynamics within families of people grappling with mental health issues. Subsequent research recognised chronic health conditions not only affect the quality of life and wellbeing of the people experiencing them, but also impose burdens that reverberate within relationships, caregiving roles, and family dynamics over time.

Past studies have shown families of those diagnosed with chronic mental illness are increasingly forced to manage their own depression, experience elevated levels of emotional stress, negative states of mind and decreased overall mental health.

Conditions such as depression, anxiety disorders, bipolar disorder, and schizophrenia can severely impact daily functioning, relationships, and overall quality of life. Living with mental illness is often accompanied by a myriad of challenges. From stigma and discrimination to difficulty accessing adequate health care and support services. Patients and their families navigate a complex and often isolating journey.

The family is a system

The concept of family health acknowledges the physical and psychological wellbeing of a person is significantly affected by the family.

Amid these challenges, family support emerges as a beacon of hope. Research consistently demonstrates strong familial relationships and support systems play a pivotal role in mitigating the adverse effects of mental illness. Families provide emotional support, practical assistance, and a sense of belonging that are vital for people struggling with mental illness.

My recent research highlights the profound impact of mental illness on family dynamics, emphasising the resilience and endurance shown by participants. Families struggling with mental illness often experience heightened emotional fluctuations, with extreme highs and lows. The enduring nature of family caregiving entails both stress and adaptation over an extended period. Stress associated with caregiving and the demands on personal resources and coping mechanisms builds and builds.

Yet families I’ve interviewed find ways to live “a good life”. They prepare for the peaks and troughs, and show endurance and persistence. They make space for mental illness in their daily lives, describing how it spurs adaptation, acceptance and inner strength within the family unit.

When treating a person with mental illness, health practitioners need to consider the entire family’s needs and engage with family members. By fostering open and early dialogue and providing comprehensive support, health-care professionals can empower families to navigate the complexities of mental illness while fostering resilience and hope for the future. Family members express stories of an inner struggle, isolation and exhaustion.

Shifting the focus

There is a pressing need for a shift in research priorities, from illness-centered perspectives to a strengths-based focus when considering families “managing” mental illness.

There is transformative potential in harnessing strengths to respond to challenges posed by mental illnesses, while also supporting family members.

For people facing mental health challenges, having loved ones who listen without judgement and offer empathy can alleviate feelings of despair. Beyond emotional support, families often serve as crucial caregivers, assisting with daily tasks, medication management and navigating the health-care system.

As the Cauchi family so painfully articulated, providing support for a family member with mental illness is intensely challenging. Research shows caregiver burnout, financial strain and strained relationships are common.

Health-care professionals should prioritise support for family members at an early stage. In Australia, there are various support options available for families living with mental illness. Carer Gateway provides information, support and access to services. Headspace offers mental health services and supports to young people and their families.

Beyond these national services, GPs, nurses, nurse practitioners and local community health centres are key to early conversations. Mental health clinics and hospitals often target family involvement in treatment plans.

While Australia has made strides in recognising the importance of family support, challenges persist. Access to services can vary based on geographic location and demand, leaving some families under-served or facing long wait times. And the level of funding and resources allocated to family-oriented mental health support often does not align with the demand or complexity of need.

In the realm of mental illness, family support serves as a lifeline for people navigating the complexities of their conditions.

If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.

Amanda Cole, Lead, Mental Health, Edith Cowan University

This article is republished from The Conversation under a Creative Commons license. Read the original article.