Dementia Care Research and Psychosocial Factors

Area of Science:

• Public and Patient Involvement (PPI) in research
• Intervention development and adaptation
• Dementia and depression care

Background:

• Public contribution during research intervention development enhances relevance, acceptability, and effectiveness.
• Limited reporting exists on the experiences and impact of public contribution, especially during intervention design.
• This study integrated public contribution to inform a psychological intervention for individuals with dementia and depression.

Purpose of the Study:

• To explore the experiences, processes, and perceived impacts of involving informal caregivers as public contributors.
• To identify strategies for involving people with dementia and male caregivers in future public contribution activities.

Main Methods:

• A Public Advisory Group (PAG) of 4 informal caregivers (wives, daughters) was established.
• The PAG contributed to interpreting findings and co-designing the psychological intervention.
• Impact logs documented 9 public contribution activities, and semi-structured interviews with 4 contributors and 3 researchers were conducted and analyzed using manifest content analysis.

Main Results:

• Public contributors generated 158 recommendations across 9 meetings, with 76% implemented by the research team.
• Interviews revealed positive impacts on intervention acceptability and relevance, and on researchers and contributors (knowledge/skills gain).
• Contributors offered valuable suggestions for involving people with dementia and male caregivers in future public engagement.

Conclusions:

• Findings contribute to the evidence base on the impact of public contribution in research.
• The study offers insights into effective partnership models with public contributors.
• Further research is needed to explore meaningful involvement of people with dementia and male caregivers as public contributors.