Agenda item

To receive a presentation looking at what local authorities can do to enable people with dementia to live well with the condition at each stage of the dementia pathway.

The Board received a presentation from representatives of the Alzheimer’s Society, Laura Vicinanza and Kielan Arblaster. The report, aimed to shine a light on the inconsistent provision of high-quality, integrated care and support for people affected by dementia across England, from diagnosis to end of life. It also sought to provide a roadmap for action to improve dementia care from pre-diagnosis to end of life, offering insight from people affected by dementia about what makes a good pathway and how meaningful change can be implemented by local decision-makers.

Laura Vicinanza outlined a number of key points in the presentation:

Report structure:

·         Diagnosing Well - how to improve the services offered in terms of diagnosing dementia

·         Supporting Well - focusing on providing a high level of support for those suffering with dementia within 1 year of their diagnosis

·         Living Well – ensuring that those with dementia are supported to live as full a life as possible

·         Dying Well

Evidence:

·         Used national guidance and legislation as a benchmark

·         Literature review of existing pathways, standards and datasets

·         Included focus groups and interviews with people affected by dementia

·         Interviewed and surveyed professionals, such as GPs and nurses

·         A key theme was a sense of disjointed and fragmented care.

Diagnosing Well:

Findings:

·         People were being misdiagnosed or opportunities were being missed (some GPs reported feeling under-trained in diagnosis)

·         The referral processes could be confusing

·         Service improvements could be challenging due to variation between memory services and limited performance data

·         Delivery of a diagnosis, including a subtype and tailored information, is variable

Recommendations:

·         CCGs to have a dedicated dementia lead to train GPs on referral criteria and diagnosis

·         New ways of working within primary care

·         Multi-disciplinary team meetings between memory service clinicians, neurology and neuroradiology

·         Clear referral pathways to enable access to Allied Health Professionals

·         Memory services to include dementia adviser services, with people automatically referred to the service unless they opt out

·         Access to follow-up opportunities to discuss diagnosis

Supporting Well:

Findings:

·         Information provided at the point of diagnosis was not being delivered in the right way, if at all

·         People were struggling to access a care coordinator

·         Care planning, including advance care planning, if undertaken, could be insufficient and dementia-specific needs were not considered

·         The provision of post diagnostic support interventions could be variable and inappropriate

Recommendations:

·         All people should have a named care coordinator

·         Roll out training on personalised care and support planning

·         Appropriate and tailored post-diagnostic support interventions for people with dementia and their carers

·         Integration of dementia adviser services within primary care

·         Clarity on responsibility for initiation of medicines and follow up appointments

·         Clear local responsibility for advance care planning

Living Well:

Findings:

·         Limited access to coordinated, proactive, ongoing care and support

·         Follow-up care is not the same for everyone

·         Carers are struggling to access support services

·         Hospital and care homes need to identify and accommodate dementia specific needs

Recommendations:

·         Straightforward methods of booking overnight care in advance

·         Accessible lists of recommended local respite care services

·         People to have increased follow-up and step-up care post-diagnosis

·         Ongoing opportunities to access support interventions

·         Care homes to have enhanced access to professionals through local multidisciplinary teams

·         All professionals to be trained to at least Tier 2 of the Dementia Training Standards Framework

Dying Well:

Findings:

·         People often struggle to access palliative care, including end of life care

·         Advance decisions are sometimes ignored, meaning the interests of people and their wishes at end of life are not being fulfilled

Recommendations:

·         To manage hospitalisations through integrating services, upskilling care home staff and increasing access to out of hours specialist support

·         Local multidisciplinary teams should be formed to assist local care homes, and include palliative care teams

·         Local services should be set up to ensure that professionals involved in end of life care can easily and quickly access advance care plans

Conclusion:

·         From diagnosis to end of life, 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

·         Government and national bodies must make further progress on dementia care quality and outcomes

·         But local decision makers, services and professionals are best placed to take ownership of developing dementia pathways, to promote streamlined and consistent support.

Councillor Doherty pointed to the mixed picture throughout the UK and asked if Laura Vicinanza had any further details on the work needed for dementia care in West Berkshire. She noted that a large amount of work was done in West Berkshire to address issues with dementia care, but welcomed any further insight.

Laura Vicinanza noted that she did not have specific recommendations for West Berkshire, but she was happy to work with local leaders to further assess what needed further development in the district.

Councillor Vickers noted that dementia care was a growing issue and understanding its challenges were crucial. She stated that she believed that dementia care should be a priority in the Joint Health and Wellbeing Strategy. She also pointed to issues with the fact that dementia came under social care, meaning individuals had to pay for care.

Laura Vicinanza noted that the number of people with dementia was high and was only going to increase. She further noted that those with dementia tended to suffer with other health issues as a result of their diagnosis. She stated that their recommendations proposed for dementia care to be included in the national service so that they would not have to pay for their own care.

Gary Poulson suggested that it was important for there to be modes of transport available for those with dementia to access support groups.

Joanna Rice noted that in West Berkshire, the contract did not cover travel support, but that there were a number of voluntary sector organisations that enabled this to happen.

Shairoz Claridge stated that it was the right time to look into the recommendations further, given the gaps in dementia care. She pointed to a number of initiatives being conducted in West Berkshire, such as ‘Connected Care’, where dementia plans were shared across local partners. She also noted that the Locality Integration Board was working on MDTs, looking at patients who had specific diagnoses. She invited Laura Vicinanza to attend the Locality Integration Board to present her findings.

Councillor Bridgman indicated that it was important to clarify what West Berkshire was already doing in order to know which recommendations would be necessary and to understand what costs would be involved. He suggested that the Health and Wellbeing Board was the right arena for a discussion on dementia care improvements given the wide range of expertise that was on the board.

Joanna Rice indicated that she would be able to help in regards to what recommendations could be integrated locally, as she had also worked in neighbouring authorities. She also stated that she would be able to assist in implementing changes that were cost-free. She noted that she would be happy to remain engaged with the on-going conversation.

Andrew Sharp noted that an enormous amount of pressure had been put on family carers for those with dementia and that there were huge lessons to be learnt from Covid-19 about the gaps in the system. He noted that some fantastic work had been done in West Berkshire, but that Covid-19 had shown where there were still gaps.

RESOLVED that the report be noted and Laura Vicinanza be invited to present to the Locality Integration Board.