Sheffield dementia voices: what we already know

Healthwatch Sheffield reviewed ten sources of feedback from people with dementia, carers and families to identify what was already known about dementia care in the city. The review found that timely diagnosis, clear information and access to appropriate support were highly valued. While the period leading up to a diagnosis was often described as distressing, receiving a diagnosis and practical information about future support provided reassurance and helped people plan ahead. Peer support and opportunities to share experiences with other carers were also considered important. 

Social activities and community support emerged as key factors in helping people with dementia maintain wellbeing and reduce loneliness. People valued dementia-friendly environments where they could socialise without stigma, while carers highlighted the benefit of day centres, home care and dementia cafés in providing respite and enabling them to continue caring for relatives at home. Remaining in familiar surroundings, staying close to family and friends, and having access to services near home were also seen as important outcomes of good dementia care.

The qualities most associated with good services were friendly and respectful staff, enough time during appointments, flexibility to meet individual needs and calm, supportive environments. People appreciated professionals who listened, involved them in decisions and treated them with dignity. Feedback consistently highlighted the importance of environments that reduce anxiety and confusion, as well as services that adapt to the changing needs of individuals living with dementia. 

The review identified several evidence gaps that could benefit from further engagement, including the experiences of carers, people from Black and Minority Ethnic communities, those with sensory impairments or other health conditions, people with young-onset dementia and wider issues such as housing, technology, care coordination and prevention. Healthwatch concluded that future service planning should place lived experience at its centre and seek the views of groups whose experiences were not yet well represented.