Understanding Experiences of Dementia Care and Support in Kirklees and Calderdale

Healthwatch Kirklees and Calderdale gathered feedback from over 130 people affected by dementia to understand experiences of diagnosis, care and support. While many praised services such as Dementia Hubs, Admiral Nurses and community support groups, the overall picture was one of a fragmented and difficult-to-navigate system. Many people experienced long waits for diagnosis, poor communication and limited support after diagnosis. 

A key finding was that families often recognised symptoms long before services responded, and many felt concerns were initially dismissed as normal ageing. After diagnosis, people frequently reported being given little information about what would happen next, with many describing a lack of a clear pathway and having to find support themselves. 

Key Findings

• Delays in diagnosis were common, and concerns were often initially attributed to ageing. 
• Many people reported receiving a diagnosis without clear information, follow-up support or guidance on next steps. 
• Carers frequently felt overlooked, unsupported and under significant emotional strain. 
• Access to respite care and social care support was a major concern, particularly in Calderdale. 
• Communication and coordination between services were often poor. 
• Dementia Hubs, Admiral Nurses, support groups and voluntary organisations were consistently praised. 
• Most people were not informed about opportunities to take part in dementia research or clinical trials. 
• Hospital experiences varied widely, with examples of both excellent dementia care and poor understanding of dementia among staff. 

Conclusion

The report concludes that people need a clearer, more coordinated dementia pathway with better post-diagnosis support, improved access to respite and social care, stronger support for unpaid carers, and a named contact or dementia navigator to help families navigate services. Despite examples of excellent care, over half of respondents rated their overall experience as poor or very poor, highlighting the need for system-wide improvements.