From diagnosis to end of life: The lived experiences of dementia care and support

Published October 2020

Our new report analyses the gaps between what care and support current guidance and legislation affords people living with dementia and what care and support people are receiving. A recurring theme throughout people’s experiences is a sense of disjointed, fragmented care. 

The report sets out a roadmap of how we can achieve change. The recommendations to national and local health and social care actors will address the current care and support needs of people living with dementia. 

What are the key findings of the report?

Diagnosing Well

People are struggling to access a timely and high-quality diagnosis, as well as get a subtype diagnosis. A timely and accurate diagnosis can often set the tone for how people living with dementia experience the rest of their pathway, as well as the condition itself. 

Supporting Well

Access to post-diagnostic care and support, as well as access to dementia advisers and care coordinators is variable across the country. The lack of access to these services can leave people feeling unsupported and unable to manage their dementia symptoms effectively. 

The lack of integration between care plans between services and professionals as well the lack of ownership of advance care planning can leave people without the appropriate support to manage their condition. 

Living Well

Access to coordinated, proactive and ongoing care and support is limited. There is variation in the provision of follow-up care and people reported inconsistent care plan reviews, which were not meaningful. 

Many people receive most of their support from their primary informal carer, but carers are struggling to access support services for their own wellbeing. This is a result of inconsistent needs assessments, as well as the quality of formal care acting as a deterrent to them seeking help. 

Many people living with dementia will be admitted to hospital and transition to a care home. However, people are struggling to access the appropriate care for their level of need within these settings. 

Dying Well

Dementia is a terminal condition, yet people living with the condition struggle to access appropriate palliative and end of life support, which often exacerbates unnecessary hospital admissions.

Summary of recommendations 

This report makes recommendations for the Department for Health and Social Care, Care Quality Commission and NHS England and NHS Improvement to make further progress on dementia care quality and outcomes. However, it is local decision makers, services and professionals who are best-placed to take ownership of developing dementia pathways. 

The report provides a roadmap for action to improve dementia care from pre-diagnosis to end of life. It offers insight from people affected by dementia about what makes a good pathway and how meaningful change can be implemented. 

• Tackle variation in memory services, through developing and publishing good practice commissioning guidance. This must be underpinned by regular memory service data and an annual audit.  
• Proactive, consistent and integrated care post-diagnosis, including ongoing access to post-diagnostic support interventions for people with dementia and carers. This must be underpinned by good practice commissioning guidance for ongoing post-diagnostic support, recognising the role of Allied Health Professionals. 
• Provision of culturally appropriate care and support, through reviewing current provision and considering projected future population trends to ensure dementia care services meet communication and cultural needs. 
• Enhanced access to professionals within care homes, through local multidisciplinary teams, which include palliative care teams, Allied Health Professionals, and wider support services such as dentistry. All professionals should be trained to at least Tier 2 of the NHS-backed Dementia Training Standards Framework. 
• Access to end of life care, through conducing a national review of capacity and access to palliative care in care home settings, including an audit of training for care home staff as well as access to out-of-hours support.
• Enhanced data collection, through the establishment of a National Dementia Observatory that brings together new and existing data. There should also be further indicators for dementia added to the Quality and Outcomes Framework, and data on the implementation of The Enhanced Health in Care Homes model.