More than a decade of research and policy has collectively outlined the improvements required in health and care services for people living with dementia.
As a health system we have worked hard to improve diagnosis rates in an attempt to ‘seek out’ people living with dementia and their families. Our logic is that being aware of people living with dementia will help us provide support services. Despite the hard work of healthcare providers, access to care is still widely variable with some reporting rapid access to assessment whilst others report long waits for appointments and confusing or even contradictory advice.
As a generation of healthcare providers we must tackle these inconsistencies and deliver reliable care for every person every time. There are no excuses.
Quality of care for people with dementia should be consistent across all health and social care settings. National guidelines exist that aim to support health and social care professionals to provide quality care to people with dementia (NICE, 2010, 2011, 2013a, 2013b) and workforce development is increasingly prioritised. Despite this, care quality is highly variable, and there are particular issues in the care that people with dementia receive when moving between different settings, for instance from hospital back into the community.
A recent survey by the Alzheimer’s society survey found that 27% of people affected by dementia are not involved in decisions about their care and support.
Support following a diagnosis is not available to everyone, as there is no mandatory minimum provision of support. It is also unclear whether the responsibility for providing services should sit with the NHS or social care, or both. This means that too often access to a diagnosis and appropriate post-diagnosis support depends on where people live and the care and support options available in that area. As a result access to support after a diagnosis is inconsistent.
Whilst the lucky ones report excellent support, to many families are left to find their own solutions, feel very isolated and reach crisis before seeking help.
Our future is dependent upon a meaningful and ongoing conversation between people delivering health and care services and people living with dementia. Imagine a future where every person living with dementia is asked ‘what is it like to live around here?’, what could we do today that would improve things for you and your family?’ at least once per month. Imagine a health and care system with the ability to listen, process and prioritorise this information. Imagine a health and care system whose primary purpose is to provide high quality, safe and reliable care which can be personalized to individuals. This is possible and this is the mission for us all.
As part of the Greater Manchester Health and Social Care devolution the ‘Dementia United’ strategy and coalition seeks to address these issues and make GM the best place in the world to live if you have dementia.
This is a bold ambition and one which will require an army of health and social care professionals from across the 10 localities to work hand in hand with people living with dementia and those providing support. Our mission is common to many health economies and marks an evolution in dementia health and care provision.
Article by Professor Maxine Power, Chief Executive of Haelo, Salford’s Innovation and Improvement Science Centre.
To hear more about Professor Maxine Power and the work that Haelo is doing around dementia, join us at Dementia 2017: Implementing Better Care on April 2oth at The Bridgewater Hall, Manchester.