Redesigning Primary Care to provide Post-diagnostic Support for people with dementia

Receiving a diagnosis of dementia is life-changing news for individuals and their families.

However, receiving early support can be truly transformational in helping to come to terms with this.

The ihub Focus on Dementia team is working with services to test approaches to delivering this support from primary care. This is enabling earlier diagnosis and timely support to people and their families following a diagnosis.

Post-diagnostic Support in Scotland
Scotland is the only country in the world that has a government guarantee that anyone newly diagnosed with dementia in Scotland will receive a minimum of one year's Post-diagnostic Support (PDS) from a named practitioner.

PDS helps people to live as well as possible with the condition and to plan for the future. Scotland has made great strides on the delivery of this target with many people receiving high quality PDS when they need it. In some areas however, people diagnosed with dementia are on long waiting lists and the quality of the support can be variable.

PDS practitioners are based within community mental health teams and dementia diagnoses tend to be made from psychiatry services rather than from primary care (also known as general practice). Overall, people tend to receive a diagnosis when their dementia is fairly advanced which makes it difficult to maximise the potential of PDS.

To improve the accessibility and delivery of PDS, Commitment 2 of Scotland's third National Dementia Strategy laid out the aim to explore whether relocation of dementia expertise into primary care will make dementia support more accessible and "normalised" to individuals and families.

New ways of working
To fulfil this aim, the PDS in Primary Care project was established in March 2017 and is due to run until September 2020. The ihub Focus on Dementia team is working in partnership with Alzheimer Scotland and NHS Education for Scotland in taking this work forward.

The project involves working with three GP Clusters across Scotland (Nithsdale in Dumfries and Galloway, Shetland and East Edinburgh) to test the relocation, or closer alignment, of PDS into primary care. This involves 27 GP practices and each site has been encouraged to try new ways of working.

So far these include:

  • Employing a PDS practitioner within the practices
  • Working with people with memory problems who do not have a diagnosis of dementia
  • GPs diagnosing non-complex cases of dementia earlier
  • Dementia training for practice staff
  • Dementia information stands in practices
  • Delivering PDS in group sessions in addition to one-to-one support
  • Using occupational therapy-led home-based memory rehabilitation to give individual's strategies to cope with their memory problems
  • Working in partnership with the Alzheimer's Society and Alzheimer Scotland to produce a Dementia Friendly General Practice Guide for GP practices to improve the GP surgery environment

Improvements and benefits
Through this work, people with dementia have been able to directly access PDS from a primary care setting. To date, over 100 people have benefitted from this support.

The test sites have seen some great improvements including:

  • one of the sites showing a 47% increase in uptake of post diagnostic support
  • Reduced waiting times for PDS. Wait time reduced by 9 months in some cases from 12 months to 3 months
  • People with dementia and carers experiencing high-quality PDS from a primary care setting. People with dementia have reported positive experiences from their support:

"Your service seems to be the main one who supports us and frequently phones. You’ve given me confidence to call social work or other community care resources that I wouldn't have done previously." - person with dementia

"It is very helpful, comforting having the dementia support facilitator visit. I have a friend who helps me with what I am going through. I have found acceptance! I needed support in how to cope. I am finding new ways to communicate my needs." - person with dementia

  • 58% increase in staff confidence following dementia training in one area
  • 86% increase in diagnosis rates in another area
  • improved anticipatory care planning
  • reduced number of visits to GP

"You helped [this gentleman] move forward by helping him understand the disease and the impact it was having on his mum. He also got support as a carer. I didn’t see them back in surgery as much as I had anticipated." - General Practitioner

Next steps
The three GP Clusters are continuing to innovate, collect statistics and capture feedback.

The remaining year of the project involves working closely with external evaluators Blake Stevenson to fully capture and report on the impact of relocating post-diagnostic support to primary care. The full report will be available in November 2020.

The Focus on Dementia web pages have more information about our work with PDS.