Quality of life, social interaction and cognitive stimulation therapy : understanding the perspectives of people with dementia and their carers

Dementia is a progressive condition that can profoundly affect the lives of individuals and their families. With no known cure for the disease, the focus has shifted towards promoting well-being and enabling individuals to maintain an optimum quality of life. Understanding of the perspectives of both people with dementia and their carers in this area will provide greater insight into to the provision of dementia care services. The first paper systematically reviewed the literature exploring the level of agreement between self and family-proxy ratings of patient quality of life. Twenty-six studies were identified for review. The overall level of agreement between ratings was low. Patients were found to consistently rate their quality of life as higher, compared to family-proxy ratings. A range of factors influencing this discrepancy were identified: neuropsychiatric symptoms, cognition, awareness of disease, caregiver burden and stress, relationship factors, activities of daily living and sociodemographic characteristics. The need for further interventions to address these factors is highlighted, as well as implications for future research. The second paper aimed to explore people with dementia and their carers lived experience of social interaction and communication after attending a Cognitive Stimulation Therapy (CST) group. Interpretative Phenomenological Analysis revealed six superordinate themes. These captured the difficulties faced by people with dementia in accessing social opportunities and the positive experience of being in the CST group. Several challenges experienced by carers were highlighted and the subsequent impact this had on their emotional well-being. Improvements for people with dementia were noticed in areas of social communication, confidence and emotional wellbeing, with no noticeable change in memory. Carers expressed a desire for on-going support and intervention following the group. These findings have important implications for future research, dementia care and increased carer support.