To receive a presentation from Laura Vicinanza, Regional Public Affairs and Campaigns Officer Alzheimer’s Society, on the 'From diagnosis to end of life: The lived experiences of dementia care and support' Alzheimer's Society Report and the implications for Wokingham.

The Board received a presentation from Laura Vicinanza, Regional Public Affairs and Campaigns Officer Alzheimer’s Society, on ‘From diagnosis to end of life: The lived experienced of dementia and support’ from the Alzheimer’s Society.

During the discussion of this item, the following points were made:

·       The report analysed the gaps between what care and support the current guidance and legislation afforded people with dementia and what care and support they were actually receiving from diagnosis until the end of life.  The Alzheimer Society had made specific recommendations to local authorities on how to address the care and support needs of those with dementia.

·       The report had been researched and written prior to the pandemic.

·       The Alzheimer Society was pleased that supporting people living with dementia and their carers as a group of people at high risk of bad health outcomes to live healthy lives had been identified as a priority in the Berkshire West Health and Wellbeing Strategy.

·       The report had been structured into different sections; diagnosing well; supporting well; living well; and dying well.  

·       Laura Vicinanza highlighted how evidence had been gathered.

·       A key theme across all stages of the pathway was a sense of disjointed and fragmented care. 

·       Examples of best practice had also been included within the report.

·       Diagnosing well – The Board noted key findings with regards to diagnosing well.  Recommendations around this area included:

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

Ø  Multidisciplinary team meetings between memory service clinicians, neurology and neuroradiology;

Ø  Clear referral pathways to enable access to Allied Health Professionals;

Ø  Memory services to include dementia adviser services, with people automatically referred to the service unless they opted out;

Ø  Access to follow-up opportunities to discuss diagnosis.

·       Nationally, diagnosis rates had decreased during the pandemic.  Referrals from primary care to the Memory Services had also decreased.  A backlog in assessments would worsen wait times. 

·       People needed to be able to access their GP, face-to-face, to discuss concerns with cognitive impairment or memory.  In addition, Secondary care specialist diagnostic services needed sufficient workforce and resources to cope with the current and expected backlog of appointments.

·       Supporting well - The Board noted key findings with regards to supporting well.  Recommendations around this area included:

Ø  All people should have a named care coordinator;

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

Ø  Integration of dementia adviser services within primary care;

Ø  Clear local responsibility for advance care planning.

·       Living well – The Board noted key findings with regards to living well.  Recommendations around this area included:

Ø  Straightforward methods of booking day care and overnight care in advance;

Ø  Accessible lists of recommended local respite care services;

Ø  Care homes to have enhanced access to professionals through local multidisciplinary teams;

Ø  All professionals trained to at least Tier 2 of the Dementia Training Standards Framework.

·       The pandemic had had an impact on those with dementia.  A deterioration in mental health and cognitive decline had been seen, due to restrictions around social contact, particularly for those living in care homes.  In addition, the numbers of people receiving care plans or care plan reviews over the last year had decreased.

·       The pandemic had exacerbated many issues that carers had already been facing.  During the pandemic many carers had reported that their caring responsibilities had significantly increased during lockdown.

·       Dying well – The Board noted key findings with regards to dying well.  Recommendations around this area included:

Ø  Manage hospitalisations through integrating services, upskilling care home staff and increasing access to out-of-hours specialist support;

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

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

·       Councillor Hare asked about support for carers, particularly during the early stages of a loved one receiving a dementia diagnosis. He went on to comment that it was good for carers to be able to take respite.  Many felt guilty about taking time away from their loved one.  Laura Vicinanza emphasised that carers needed to be supported so that they could understand how to deal with dementia.  She agreed that taking respite was important for carers and that if they did not have access, it could have a very negative impact on the carer.

·       Matt Pope indicated that Laura Vicinanza had had discussions regarding the report recommendations with officers and these would be incorporated in the dementia workstream.  Work was being undertaken regarding the formation of a dementia alliance across the Borough.

·       Katie Summers stated that the CCG had done a lot of dedicated training around dementia for GPs but that this could be reaffirmed.  Multi-disciplinary meetings were already in place but that Memory Service clinicians could be incorporated.  She went on to state that the Memory Service already included Dementia Advisors.

·       Katie Summers questioned whether the report had been shared with Berkshire Healthcare Foundation Trust and Royal Berkshire Healthcare Trust as major clinicians and was informed that it had been presented to the Health and Wellbeing Boards.  Katie Summers commented that the Royal Berkshire Hospital was looking at their clinical services strategy and it was a good opportunity to shape how the major local providers took forwards the recommendations from the report.

·       Dr Milligan outlined some of the measures already in place around dementia.  She emphasised the importance of the voluntary sector.

RESOLVED:  That the presentation on From diagnosis to end of life: The lived experienced of dementia and support’ from the Alzheimer’s Society, be noted and Laura Vicinanza be thanked for her presentation.