What are we doing?
Along with the dementia policy team at NHS England and NHS Improvement I’m working with DCAN to:
- find out what support is important to people experiencing memory problems while they wait for an appointment at a memory service, and
- share information about the support that is available and how to access it.
Why are we doing it?
As in all areas of healthcare, the COVID-19 pandemic has created challenges in the delivery of memory service appointments and assessments for dementia. Many memory service staff were redeployed to other teams; most services had to operate at reduced capacity and some services had to temporarily close.
Staff in memory services have worked extremely hard to adapt to provide a safe service during the pandemic and have done a magnificent job in embracing alternative approaches to assessing patients. This includes using telephone and video consultations and providing virtual occupational therapy, carer support sessions and neuropsychological testing.
Despite this, we know that the pandemic has impacted waiting times for memory assessments. Many people experiencing memory problems (and who may be worried they are developing dementia) are now waiting longer for their appointment, prolonging the period of anxiety and uncertainty of unexplained symptoms. Helplines such as Alzheimer’s Society Dementia Connect, Age UK Advice Line and Dementia UK Helpline have seen a significant increase in calls since the onset of COVID-19, indicating the need for help to manage the practical, emotional and clinical challenges that memory problems can cause.
This sharp focus on the issues that people face while waiting for a memory service assessment has galvanised work to give visibility to and increase awareness of the support available.
How are we doing it?
DCAN is speaking to people who are waiting for a memory assessment through forums, focus groups, a survey and one-to-one conversations, to better understand what is important to them and what their needs are.
DCAN is also developing a website to identify available support and share how to access it.
We know that many organisations in the voluntary, community and social enterprise (VCSE) sector provide support to people experiencing memory problems while they wait for a memory service appointment. This can range from providing the opportunity to talk about the assessment process, what to expect and how best to prepare, to providing advice to address additional concerns and who to contact, and signposting to organisations for specific support (e.g. care needs assessment).
All of this is vital to support people waiting for a memory assessment to help enable them to live as well as possible during this part of their healthcare journey.
Please help us!
The website we’re developing will compile a list of organisations that provide support for people experiencing memory problems. If you are part of an organisation in the VCSE sector that provides this or know of an organisation that does – please tell us about it!