Through Their Eyes: Defining 'good life' in dementia for health economics and outcomes research.

Despite progress in involving people living with dementia in health research, disparities remain, particularly in the field of health economics and outcomes research, where excessive reliance on proxy reports from care partners or healthcare professionals persists even when people are capable of self-reporting, leading to inequitable inclusion. This study aimed to understand the concept of a 'good life' from the perspectives of people living with dementia and examine how well current preference-based outcome measures used in health economics and outcomes research capture these perspectives. Twenty-three community-dwelling people with mild to moderate dementia in Ireland participated in in-depth interviews (September 2022-February 2023).

Inclusion in neurological research: empowering people living with neurological diseases.

The value of involving people living with diseases in the research process is increasingly recognized by professional associations and regulatory agencies alike. Patient contributions range from disease prevention and diagnosis to medication planning, and from advocacy to guideline production and clinical trial design. Thanks to the efforts of activists and advocates, new models of patient inclusion in medical research are being developed to replace outdated non-participative and tokenistic paradigms.

Adaptation in communication technology utilization: caring for individuals with chronic conditions in South Asia during the Covid-19 pandemic.

Background: During the Covid-19 pandemic, people with chronic conditions experienced delayed or missed care, while their carers endured social isolation, loneliness, and reduced support. Information communication technology (ICT) can be utilized to encourage continuity of care, address misinformation, and allocate support. This study aimed to identify factors associated with the ICT adaptation of South Asian carers of individuals with chronic conditions by comparing changes in ICT utilization and preferences before and during the pandemic.

Factors associated with loneliness in Latin-American family care partners during the COVID-19 pandemic.

Background: COVID-19-related restrictions led to an increase in overall loneliness and social isolation. Before the pandemic, care partners reported higher levels of loneliness and higher loneliness prevalence compared to non-care partners. Because of the spread and severity of the infections, and the access to support spread, we expect a different impact of the COVID-19 pandemic on LATAM care partners.