Living with dementia forum

Healthwatch Bolton undertook research on the experiences of people living with dementia and their families. They spoke to 35 people at a dementia forum in November 2017 and collected 87 comments about diagnosis, support, care services and living with dementia.

Participants described difficulties recognising the early signs of dementia, uncertainty about where to seek help and concerns about receiving a diagnosis. Many felt there was insufficient information and support immediately after diagnosis, particularly regarding legal issues such as power of attorney, future planning and available support services. Stigma, denial and poor communication were identified as barriers that could delay diagnosis and access to help. 

People living with dementia and their families highlighted the importance of ongoing support from services such as dementia cafés, carers' organisations and befriending schemes. However, concerns were raised about poor communication between services, inconsistent care, lack of dementia awareness among some healthcare and care staff, difficulties obtaining information and challenges maintaining dignity and independence as dementia progressed. Several participants also reported poor experiences during hospital admissions and transitions between services. 

Healthwatch Bolton recommended improving access to clear and consistent information, increasing dementia awareness across health and care services, supporting dementia-friendly community services and exploring greater support for carers. The report concluded that people living with dementia and their families need better coordinated services, improved communication and more personalised support throughout the dementia journey.