Dementia affects more than the person who receives the diagnosis. It can have a profound impact on the lives and wellbeing of the people who care for them too.

This World Alzheimer’s Day (21st September), we’re proud to share new research from Rare Dementia Support, led by Dr Samantha Stern, Professor Sebastian Crutch, Dr Xin Zhang and Professor Nick Fox, which explores how dementia affects carers’ quality of life, and whether current measures used to assess this capture the full picture. Thanks to the global healthcare communications agency OPEN Health, we have been able to share the research in a new animated video.

Research findings

The research involved more than 1,000 people, including people living with dementia and carers. It found that the impact on carers’ lives appeared greater when using dementia-specific questions than when using a more general health-related questionnaire which is frequently used for may health conditions, including dementia.

The findings suggest that the way we measure quality of life matters. If our measures do not fully capture the experience of caring for someone with dementia, then aspects of quality of life can be missed, and we risk underestimating its impact.

This matters for understanding the experiences of families when working in research and care. These findings are also relevant to the way treatments are assessed, including by NICE, and raise important questions about whether current approaches fully recognise the benefits that treatments can bring to people living with dementia and their carers.

Better ways of measuring quality of life could help ensure that the experiences of carers are properly considered alongside those of people living with dementia.

Thank you to OPEN Health for creating this video to help bring the research and its findings to life.