The dementia pathway across Sussex – patient and carer experience

Healthwatch Brighton and Hove undertook interviews with 38 carers and seven people (service-users) with a dementia diagnosis between December 2022 and May 2023. 

The findings show the varied experiences of using dementia services, followed by recommendations for how these experiences can be improved. 

People reported a range of different experiences that showed no discernible pattern by age, gender, or location. It was impossible to conclude whether experiences differed by place (West- or East- Sussex or Brighton and Hove). For example, people in West Sussex received different levels of support to those who were similarly located, often in the same town. Similarly, some people in the west of East Sussex reported different experiences to those living in the east of East Sussex. The one area where people’s experience was almost universal was regarding the initial appointment with the GP when first suspecting memory issues. The vast majority thought their GP was caring, empathetic, thorough, gave them enough time and was clear about the next steps in terms of a referral to the Memory Assessment Service (MAS).

The findings inform many recommendations, which are grouped into 5 areas:

1. First Contact
2. Memory Assessment Service
3. Support immediately after diagnosis
4. Longer-term support
5. Services