People with advanced dementia face particular challenges in not being able to tell anyone directly about their experiences, especially if care is poor. They are also more likely to be vulnerable to the risk of abuse, neglect and loss of dignity. Whilst it is recognised that much can be gained by interviews and focus groups, the perspective of those with significant communication problems is likely to be under-represented in research.
One of our early research projects was to develop a robust and sensitive tool to capture the experience of people with advanced dementia. The aims were to develop a tool that:
- Focused on the experience of people with advanced dementia to ensure that their perspective is included in research;
- Could capture both positive and negative experiences of care which could help differentiate between care environments where abuse, neglect and loss of dignity were more or less likely to occur;
- Could be used both by researchers and practitioners with minimal training to assess the experience of those with very limited or fluctuating cognitive abilities;
- Focused specifically on observable signs of abuse and neglect or risk factors associated with this.