BGS Response on the Prime Minister's Challenge on Dementia 2020

A. Risk Reduction

1.  Do you think we are on track to meet the commitments in the dementia 2020 challenge?

While we are aware that progress is being made through the promotion of public health messages about risk factors for developing dementia, especially the message ‘what is good for the heart is good for the brain’, we are concerned that cuts to public health funding are a barrier to spreading the public health message.  Moving responsibility for and funding of public health into local authorities has exacerbated the barriers to developing awareness and understanding of the risk factors for dementia and increased variation in practice.   

It would be useful to have some research on levels of public awareness and understanding in order to better understand how much progress has been made in meeting the risk reduction objectives for 2020. 

a. Can you share any evidence that shows if we are/are not on track? 

The inclusion of dementia risk into health checks has been a positive development and we understand that the numbers are on track for 2020.  

b.  Do you think the objectives are achievable by 2020?

We believe the objectives are only achievable if some of the other obstacles to achieving them are urgently addressed.  They cannot be looked at in isolation. In our view the principal challenge is workforce planning. Without adequate staffing in health and especially social care there is – and will continue to be – insufficient resource to meet the needs of older people with dementia. 

2.  What actions do you think we need to prioritise to ensure we meet our commitments by 2020?

a. Which organisations are best placed to take these forward?

For the Health Check, our view is that Public Health England should continue to work collaboratively with the Alzheimer’s Society and Alzheimer’s Research UK. 

b.  Are new actions required to meet the commitments?

BGS would like to see a greater focus on the NHS Health Checks as a way of helping to focus people’s attention on the potentially modifiable aspects of dementia risk.  We are aware of the success of the pilots and hope that this can be built on. 

We would also like to see earlier action and investment to address the cardiovascular risks of dementia, for example through expansion of management programmes for diabetes, hypertension, and smoking cessation.  

An increased focus on addressing the specific needs of people from BME communities would be helpful.  Research published by the Alzheimer’s Society in 2017 showed that 75% of people are unaware that dementia risks are modifiable.  Focus on specific groups of people could increase effective engagement and help address specific risks, for example the higher rates of diabetes and hypertension among Asian and Afro-Caribbean populations.  The Social Care Institute for Excellence (SCIE) identifies some of the issues, including reluctance engage with health and social care services .  While good practice does exist there is evidence that is very patchy .   

3.  What do you think needs to happen beyond 2020?  Answers to this question will be acknowledged in the next phase of the Review

a. What would you propose are the next steps beyond the Challenge?

Greater use of evidence and data in targeting public health messages would help to increase impact.  We believe that the more we can use evidence-based messages to inform future strategies, the greater the likelihood of engaging the public and influencing behavioural changes.  This requires greater investment in research which provides data and insight into the specific challenges faced by different groups of people living with dementia.  

As the research base for the general population of people with dementia grows, the messages will need to be kept under review and updated regularly to take account of new knowledge and evidence.  

b.  What are the emerging/on-going issues that need to be tackled?

Delirium is a risk factor for dementia and currently receives little or no attention.  Increasing awareness of delirium prevention and symptoms should be considered as a public health message. 

B. Health and Care Delivery

1. Do you think we are on track to meet the Commitments in the Dementia 2020 Challenge?

We welcome the significant progress towards the commitments that has been made, for example, greater access to mental health liaison teams when people with dementia are admitted to hospital has been a positive development. 

However, there are some fundamental aspects of the 2020 challenge which we have concerns about, in particular the capacity of the NHS and social care workforce.  For example, GPs are not in a position to be Care Coordinators.  There is an urgent need for new models of primary care to be rolled out more rapidly and to more fully include the needs of people with dementia.  This requires recognition that dementia is a long term condition and most people with dementia also have other long term conditions.  

Many people with dementia are living with frailty and a person-centred approach is essential to meeting their health and care needs.  Their needs, post-diagnosis, are different to those of a younger independent person who has dementia. In this context it should be recognised that most people with dementia will ultimately die with dementia rather than of it. Palliative care services therefore need to be structured to take account of the specific needs of people with dementia as part of a broad spectrum of end-of-life care provision. 

Access to a multidisciplinary team where mental and physical health services are integrated and closely aligned with the voluntary sector, is essential for person-centred care.  We are still a long way from being able to deliver a person-centred approach to everyone who needs it.  Constraint of financial investment in health and social care is a key barrier.    

a.  Can you share any evidence that shows if we are/are not on track? 

The Alzheimer’s Society’s analysis of NHS England data on diagnosis rates shows a significant national improvement in diagnosis between April 2015 and March 2018, together with a reduction in the variation of diagnosis rates between CCG’s.   Overall though, we do not see enough evidence that Commitment 3 is on track.  We know that there is variation across the country and that while some GPs provide excellent support, there are some who are not aware themselves of what local support is available or how it can be accessed.  

BGS members’ experience of working directly with older people with dementia is that post-diagnosis support continues to be very patchy.  A report published by Age UK this year showed that one third of people are not getting the post-diagnosis support they need .  

We continue to be concerned by the funding crisis in health and social care and the negative impact this has on staffing levels which mean that people do not always get the follow up care and support they need.  

When people with dementia are admitted to hospital, it is essential that their care is appropriate and person-centred.  Current evidence, and our own experience, is that the care delivered often falls short.  The National Audit of Dementia 2017 organised by the Royal College of Psychiatrists provides clear evidence showing that care in acute hospitals is frequently sub-optimal .  If we don’t get care right when people are inpatients in an acute hospital setting there is a high risk of significant deterioration, especially for people whose dementia is already moderately advanced.  

b. Do you think the objectives are achievable by 2020? 

The objectives are achievable, but without significant additional investment in health and social care services together with a major leadership effort directed towards more person-centred care for people with dementia we do not believe that they are likely to be achieved.

2.  What actions do you think we need to prioritise to ensure we meet our commitments by 2020?

As referred to in S1. above, it has to be recognised that the commitments of the 2020 challenge will only be met when some of the other challenges that exist in health and social care are met.  Our view is that education, training and recruitment must be more closely aligned to the rapidly increasing population of older people.  While system reform is already underway, we need greater investment to accelerate reform.  

To ensure that people living with dementia receive person-centred care and support, we need increased education and training in frailty as a specific medical condition, enhanced knowledge and expertise in treating people living with multiple long-term conditions, and the recommendations in the Dementia Core Skills and Education Training Framework to be met.  

This means that staff who work with people with dementia on a regular basis need to be trained in dementia to Tier 2, which goes beyond awareness and includes training in person-centred dementia care, communication and promotion of independence, with families and carers becoming partners in that care.  This also requires support for families and carers who are themselves at risk of poorer health outcomes as a consequence of caring responsibilities. 

As with any training, support to put the training into practice is vital.  Our concern is that the workforce is so stretched that pressure of work may result in staff reverting to their old ways of working, and the changes and time needed to deliver the learning from training may not be fully realised. Though training is recommended in the Prime Minister’s Challenge 2020 it is often not deemed mandatory and organisations struggle to release staff time.  There is evidence of this in the National Audit of Dementia 2017 data.

In essence the actions and changes that need to be prioritised to ensure commitments are met by 2020 are fundamental: we need a lasting solution to the current crisis in social care; greater capacity in intermediate care; full integration of services and sufficient investment in health and social care. 

a.  Which organisations are best placed to take these forward? 

•    NHS England, CCGs and GPs for commitment 3.  
•    Health Education England and Skills for Care for commitment 4.  The caveat to this is that the challenge in reducing prescribing of antipsychotics is dependent on the availability of non-pharmacological treatments.  
•    Dementia Action Alliance for commitment 6

b.  Are new actions required to meet the commitments?

Greater investment in dementia specialist nurses such as Admiral nurses to increase access to them would be a positive step.  At the moment their availability is variable and so is their role.   Consistency in role and provision of specialist nurses would be helpful both for people with dementia, and the health and care workforce.  

More health professionals need to be fully trained in the specific needs of older people.  As part of that training we would like to see the capacity for Comprehensive Geriatric Assessment (CGA) developed and delivered more widely.  CGA is an interdisciplinary process focused on diagnosing an older person’s medical, psychological and functional capability.  There is a strong evidence base showing that use of CGA enhances an older person’s overall resilience, and when it is used following an emergency admission to hospital it increases by 25% the patient’s likelihood both of being alive and of being able to live in their own home six months later. 

3.  What do you think needs to happen beyond 2020?

There is potential to make better use of assistive technology as part of the support available to people living with dementia.  

a.  What would you propose are the next steps beyond the Challenge?
b.  What are the emerging/on-going issues that need to be tackled?

See answers to Q2 above.
C. DEMENTIA AWARENESS (including social action)

1. Do you think we are on track to meet the Commitments in the Dementia 2020 Challenge?  

BGS warmly welcomes the success of the Dementia Friends initiative.  Although the 2020 target may not be fully met, the numbers of Dementia Friends and the positive engagement with the programme by both the private and public sector has been an excellent development.  In making environments more dementia-friendly, there are benefits for everyone.  Having shown what potential there is we would like to see Government doing more to encourage, and if necessary put pressure on, large organisations so that they not only sign up to be dementia friendly but really understand the benefits and business case for doing so.  

D. Research  (including funding)

1. Do you think we are on track to meet the Commitments in the Dementia 2020 Challenge?

The investment and progress made in research is welcome.  The establishment of the Dementia Research Institute and its success in recruiting leading researchers has been a particular success.  

a. Can you share any evidence that shows if we are /are not on track? 

No additional comments

b. Do you think the objectives are achievable by 2020? 

The targets for recruitment are ambitious.  We are not confident that they will be achieved by 2020.

2.  What actions do you think we need to prioritise to ensure we meet our commitments by 2020? 

Publishing more detailed data on specific areas that research funding is allocated to would be useful for all with an interest in dementia research.

The recently published draft NICE Dementia Guidelines provide recommendations for future research; these can helpfully feed into priorities for the dementia research agenda.

Research which provides evidence of what works in terms of care and support for people with dementia is an important part of the research agenda, and could be made a higher priority, sitting alongside research into causes and pharmaceutical treatment.

Increased investment in the promotion and sharing of research findings, whether they are medical or social (eg effectiveness of different care models), would be useful in helping to meet the 2020 commitments.