Coronavirus (COVID-19) - dementia and COVID-19: action plan

Support for a timely diagnosis and post-diagnostic support

"The pandemic has exacerbated existing challenges with accessing appropriate post diagnostic support. We believe that this may be an opportunity to reimagine how PDS is delivered"

"COVID has intensified everything including inequalities and gaps in service provision. We can see this as an opportunity to improve aspects such as PDS"

"A dementia diagnosis is already an incredibly stressful time for both the person living with dementia and their unpaid carers. When this was then doubled up with the COVID crisis it was an incredibly difficult time for them"

• Getting a timely diagnosis of dementia is hugely important because it helps people with symptoms and their families to understand and make sense of the changes that are happening to them and, critically, entitles them to access support after diagnosis. Getting a diagnosis early on in the illness is important as it gives people time to come to terms with and plan for the future they want, whether they are alone of with family.
• Since 2013, Scotland has led the way in our national approach to supporting people after their diagnosis to access what they need to live well in their communities and with family and friends. The internationally recognised national post-diagnostic service offer is primarily a non-medical model which provides the person with dementia and their family with dedicated, skilled support from a named link worker over a minimum of a year, to help the person with dementia and their family carers understand and adjust to the diagnosis, connect with community resources and build a comprehensive, person-centred plan. The service is designed to retain, maximise and enhance individuals and families' 'natural' resources and assets and help retain connections to friends, clubs, churches and the wider community.
• The service is provided by Integration Joint Boards and is delivered by either the third sector, mental health teams or social care staff. For individuals with existing intensive social care packages, the service will be adjusted and integrated into the overall care package. We have recognised that too few people get access to this support. (Reference performance data). This plan sets out how we will work to systematically assess current provision and also how it has been impacted by the pandemic.
• As a result of restrictions, the pandemic has reduced people's likelihood of getting a timely diagnosis (with variation across Scotland because of the pandemic in the delivery of diagnostic scans in particular) and their opportunity to participate in our person centred post diagnostic support, particularly where peer support in groups was what they preferred. However, there is strong evidence that during the pandemic some 'virtual' post-diagnostic support using a range of on-line tools has worked well and we will take more action on what will have to be a more mixed type of service for the foreseeable future.
• In the engagement process, awareness of the post-diagnostic support (PDS) service and the one year entitlement was often low except amongst professional participants and families who had experienced the support of a PDS Link Worker. Amongst those who knew about PDS there was a recognition that before the pandemic post diagnostic support referrals have not been offered to enough eligible individuals and that we need to understand how referral rates have been impacted in 2020. There is concern that the one year guarantee is not long enough just now as diagnosis has been limited and so people will be getting diagnosed later and more likely to need a different form of PDS - one that looks more like care co-ordination.

Commitment 4: We will continue to support our national commitment on post-diagnostic support, to increase access to this service and to the community support individuals need to continue living well as part of the wider community. As part of this, in partnership with COSLA, local partnerships, Alzheimer Scotland and other stakeholders we will take forward work in the first four months of 2021 to review and assess the provision and design of post-diagnostic services and identify both best practice and barriers to further expansion of the service. We will also establish a process to engage regularly with local delivery partners to assess progress and identify and help address local issues.

Commitment 5: We will support an increase in dementia diagnosis rates to mitigate the impact of the restrictions to services including further engagement with primary care as the gateway to specialist diagnostic services. We will continue and expand, work with health and social care partnerships and others on supporting an increase in the number of people who get a referral into dementia post-diagnostic services through service innovation, service redesign and workforce support to improve the consistency and quality of PDS services.