Learning from lived experience: Diagnosis to end of life
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NHS Universal Personalised Care wants to improve the experience of dementia care and support by transforming the relationships between health professionals and people. But how successful has other practice  guidance and legislation been at shaping people’s experience and what are the lessons and opportunities for personalised care? A new Alzheimer’s Society report gives us some ideas. 

By Ella Robinson

I’m Ella and I work as a Policy Manager at  Alzheimer’s Society.  We have recently published a new report titled ‘From diagnosis to end of life:  the lived experiences of dementia care and support’. 

This report is structured around four stages of the NHS England’s Well Pathway for Dementia – Diagnosing Well, Supporting Well, Living Well and Dying Well. 

 To produce the report, we used national guidance and legislation as a benchmark of what care people should expect. We undertook a thorough literature review of existing pathways, standards and datasets. We ran focus groups and interviews with people affected by dementia and we interviewed and surveyed professionals. The research was done before the pandemic, however there is a COVID-19 chapter to provide context and highlight how issues have been exacerbated during the pandemic. 

The report covers people’s struggles to get a timely and accurate diagnosis, difficulties in getting ongoing support following a diagnosis, and the challenges of receiving care that helps to make people as comfortable as possible, particularly at the end of life. 

The report highlights the inconsistent provision of high quality, integrated care and support for people affected by dementia from diagnosis to end of life. It finds that people with dementia face challenges in accessing effective care and support. A recurring theme at each stage of the pathway is the sense of disjointed, fragmented care. 

This report makes recommendations for the Department of 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 therefore makes recommendations to support local authorities or Integrated Care Systems to produce dementia pathways, that set out clear responsibilities in order to promote streamlined and consistent support. 

We want action on the following areas:

  • 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 appropriately.  
  • Access to end of life care, through conducting 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.

There is great potential for making dementia care and support more personalised.

Whilst not a part of this report, we look forward to working with the Dementia Change Action Network to understand how Universal Personalised Care components will enhance lives from diagnosis to end of life, and what will be needed to make it happen for everyone.

You can read the full report “From Diagnosis to End of Life: The Lived Experience of Dementia Care & Support” here 

Find out more about our plans to personalise dementia care with our ‘Right at the Start’ Enquiry.

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