Is Dementia a Priority?

This is a guest blog from  Jean Tottie, founder and chair of tide, and Life Story Network.

So, Dementia Action Week has gone by with a huge amount of social media, conferences and events held to continue to raise the awareness of dementia and its impact on so many people’s lives. Many passionate people, particularly at grass roots local level, have worked hard to get messages out there that dementia is still a priority. I thank you all.

But is it still a priority for the for the decision makers? Having been involved in the world of dementia for many years, as a former carer for my dad, and supporting other carers to influence those decision makers by hearing from those who are true experts by experience, I am concerned that dementia is now not recognised as the priority it should be in some quarters.

We’ve had the first Dementia Strategy in 2009 with its 17 objectives, many of them still not achieved. We then had the Prime Minister’s Challenge on Dementia 2020 in 2015. Great to get such high profile political support. A review of progress on this Challenge is currently taking place. What will it say and what will follow? I’ve heard some carers really struggling to find the right services.

In the Implementation Plan for the Challenge, published in March 2016, there was a real commitment for ongoing scrutiny of the proposed action by a panel of people affected by dementia – those with a diagnosis and also their carers. This panel has been set up by way of surveys with limited scope and not what was originally intended.

It is now mid 2018 and I fear we do not know how the DH or NHSE are deciding on priorities or advising local commissioners in health and social care how they should prioritise. The obvious target of maintaining the diagnostic rates is almost a default position but post diagnostic support for families is very much lacking in many areas. Given the parlous state of the NHS and our ever increasing population there is real fear amongst families that they will not get the support they need when they need it.

There are now published objectives for the new Department of Health and Social Care which includes implementing the Dementia Challenge. How can we hold the Ministers and civil servants to account? Given that decision making is much more of a local process with only guidelines from government we should take a look at what is happening in our own areas. We are already aware of the postcode lottery of care but the variations are quite enormous.

Take for example the desire for Greater Manchester, with its devolved budgets, to be the best place in the UK to live with dementia. They have a full partnership (long established) of all 10 local authorities and all the NHS bodies within that city region and have developed a specific programme, Dementia United, because dementia is recognised as a priority which impacts on health and social care enormously. Whereas the West Yorkshire and Harrogate Health and Care Partnership, where I live, does not recognise dementia as a priority and so no specific work programme is planned – just a focus on maintaining diagnostic rates.

These new organisations formed as Sustainability and Transformation Partnerships (STPs) of the NHS England 5 Year Forward View are now in place all over the country developing their plans for the local populations. I don’t envy them their difficult job even though I worked in this field. When resources are so scarce difficult choices must be made but given that dementia will affect all families at some stage in the next few years it makes sense to invest to save.

We know that family carers and friends are the biggest workforce in dementia care but many commissioners don’t understand that caring for someone with dementia is vastly different from caring for someone who has their cognition intact. This leads to services for carers being generic when specific post diagnostic support is needed for carers of people with dementia. Without this they will not be able to care for the person in the community for longer which is what families as well as services want. When crises happen it usually means an avoidable hospital admission or long term care with a carer becoming a patient also. Many of the solutions are simple if commissioners would only listen to the experts – carers and people living with dementia.

When carers talk about the stress of having to care manage the complex systems of health and care, that they must find and train the social carer workers to provide for their loved one without any support then have we really moved on? The answer for some is to use Direct Payments but we know that this is not always offered to families coping with dementia or taken up because of the complexity of doing so. It takes a certain sort of individual to take this on.

I hear many stories of commissioners not understanding that dementia is a neurological disease of the brain. Not all people with dementia will develop mental health symptoms but historically it has been classed as a mental illness. This is not helpful for families trying to understand how the dementia is affecting their loved one. Similarly many professionals still don’t recognise that dementia is terminal and that it is the leading cause of death in England and Wales.

Yes we have made progress and each year I am heartened that the voices of people living with dementia and family carers are getting louder but we still have a long way to go. I sincerely hope that the review of progress against the Challenge on Dementia 2020 is an honest reflection leading to commitment for a follow on strategy or action plan.