This study aims to explore the everyday experiences of people living with Lewy body dementia and their families, to deepen understanding of their care needs. Lewy body dementia is a neurodegenerative condition associated with shorter life-expectancy and poorer quality of life than other forms of dementia. Cognitive fluctuations, visual hallucinations, falls, and motor features of Parkinsonism gives rise to complex and debilitating symptoms. Other prominent features include behavioral and emotional problems, rapid eye movement sleep disorder, and autonomic dysfunction. Improving palliative care for people with dementia continues to be an international priority; however, little is known as to how a palliative care approach could support people living with Lewy body dementia and their families.

Drawing on narrative theory of self and personhood, a qualitative, longitudinal narrative approach provided unique insights into 5 couples’ experiences of living with Lewy body dementia. Analysis was conducted using Murray’s levels of narrative analysis in health psychology to explore stories at the personal, interpersonal, positional, and societal level.

Participants with Lewy body dementia described losses associated with communication, continence, and energy leading to a progressive loss of independence. For their family caregivers a loss of companionship was particularly salient. These losses, compounded by a perceived lack of clinical support, resulted in suffering both for the person with Lewy body dementia, and for those close to them.

There has been a societal and political shift to move beyond loss in dementia, to a focus on abilities and living well. However, acknowledging loss, while supporting symptom management is an important aspect of Lewy body dementia care. Providing person-centered, palliative supportive care throughout the disease trajectory could reduce suffering and enhance well-being.

Dignity is perceived as being valued and respected. Maintaining dignity throughout illness is a fundamental principle of palliative care. Dignity can be influenced through family caregiver’s communication, support, and acts of empathy or indifference among other factors. The perception of dignity and the practices adopted by family caregivers to preserve the dignity of their ill relative with serious illness in Lebanon are explored in this paper.

This is a part of a larger study that explored the understanding of dignity from patients’ and family caregivers’ perspectives in a palliative care context. Data collection involved in-depth interviews with 15 family caregivers. Interviews were analyzed using reflective thematic analysis.

Four main themes, that explained how family caregivers understand, and uphold their relative’s dignity during illness, were developed:

(a) Familial duty expressed through presence and compassion;

(b) Holistic care and financial stability;

(c) Social connection and family roles;

(d) Compassionate services and communication.

Family caregivers maintained the dignity of their ill relatives through being there, compassionate communication, supporting the personal and medical needs of the patient, and helping them preserve their family role. Family caregiving was often underpinned by religious values and a sense of duty. Compassionate services and effective communication were essential to preserve dignity of the ill relative during hospitalizations.

Family caregivers assume multiple roles in fostering the dignity of relatives with serious illnesses. It is crucial that family caregivers are supported by policies, healthcare systems, and community initiatives as patients cannot thrive nor sustain dignity without their support.