Hidden Voices, Hidden Impact, Hidden Cost

Written by: Henry Simmons, Chief Executive, Alzheimer Scotland

Published: 31/05/2021

Dementia Awareness Week logo

Chief Executive of Alzheimer Scotland writes an open letter to launch Dementia Carers Week.

People with dementia and their families have been significantly impacted by the COVID-19 pandemic, and the subsequent measures put in place to mitigate the spread of the virus. Almost every component of what could, and should, be a good system of personalised care and support for people with dementia and their families has been shattered. For well over a year, with the exception of residential forms of care, almost all direct community support has been delivered exclusively by families themselves.

There is no doubt that there has been a good level of digital based support introduced, which was enabled by local authorities agreeing to the flexible use of their commissioned funds and registered services being allowed to adapt their support. This level of pragmatic partnership working, alongside the commitment of frontline staff to develop new skills and abilities in digital and online based care, has been invaluable in helping many people cope and get through this pandemic.
However it would be wrong not to recognise that, as a result of the pandemic, the fundamental foundations of high-quality person-centred care from the point of diagnosis to end of life that we have been promoting and advocating for many years, has been decimated.

The principles of a timely early diagnosis and high-quality post diagnostic support which builds on an individual’s own natural support networks, their hopes, strengths and ambitions, have been the bedrock of practice which have enabled people to live well with dementia. Over the last year, this has simply not been able to be fully delivered. The Scottish Government estimated that around 20,000 people will be diagnosed in 2020 and we know that prior to the pandemic fewer than 50% of this group were offered post diagnostic support. There is a community of people waiting to be diagnosed, as well as those individuals newly diagnosed, who have not had the opportunity to properly come to terms with the illness, to build a strong level of resilience and any form of meaningful self- management. If we do not quickly respond to their needs we will simply be accelerating the level of crisis and need for formal care services, such as care homes, to a level that we have not seen for decades, and perhaps never seen before.

Add into this those individuals who were managing to live well, using their well developed self-management approaches, attending community groups for peer support, therapeutic activities and expert advice on how to live well with dementia. They have experienced immense levels of loss, isolation and a disconnection from vital support which kept them well. We know that many of their needs have dramatically increased and they now need high levels of formal support – support which is simply not available. Families are filling this void, not just for this group but also for those with more advanced illness. Families – and not just primary carers – are essentially holding all of our social care infrastructure together. We owe them a great debt

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