Throughout the pandemic, Alzheimer’s Society has seen friends and family members going above and beyond to care for loved ones affected by dementia. In fact, we estimate that between March and August 2020, an extra 92 million hours of care was provided by informal carers.
There are an estimated 850,000 people living with dementia in the UK, including around 17,000 in Lancashire.
A caring role is often one people fall into, or is a title they acquire. It can be incredibly rewarding, but it can also feel overwhelming and isolating at times.
Carers of people living with dementia face unique challenges, one of them being that dementia is a degenerative disease. This means that as well as dealing with early symptoms such as behavioural changes, people also have to come to terms with seeing these symptoms progress.
There are currently around 700,000 informal carers of people living with dementia in the UK. We believe carers of people with dementia need to be supported to understand dementia and how they can manage those symptoms. They need knowledge of, and access to, support services which can help them in their role.
Carers also need to be supported to look after their own health and wellbeing, with access to appropriate respite care and peer support.
The impact of the pandemic
The coronavirus pandemic has taken its toll on everyone, but unpaid carers in particular have been hugely impacted. An overwhelming 92% of people said the pandemic had caused a more rapid increase in their loved one’s dementia symptoms, with some losing the ability to speak or feed themselves.
It is no wonder that since coronavirus hit, our support services have been used over five million times, with people telling us it is their lifeline.
While creating new challenges for carers, the pandemic exacerbated existing ones. As we slowly start to come out of the pandemic, we have an opportunity to improve the health and social care system for people affected by dementia.
With no drugs to cure or slow down the condition, it’s social care that people with dementia rely on every day. Decades of chronic underfunding and neglect have led to a care system that’s inadequate and deeply unfair – the pandemic has exposed these failings like never before. People with dementia have been worst hit, accounting for over a quarter of all deaths and many more rapidly deteriorating from the knock-on effects of successive lockdowns and shielding requirements.
This cannot be the kind of society that we expect today and that we want to grow old in – never again must people affected by dementia face such devastation.
The need for recovery and change
The legacy of this terrible year must be a reformed social care system, which is free at the point of use and put on an equal footing with the NHS. We need a system that gives every person with dementia the quality care and support they deserve and so desperately need.
Until the issue of social care is addressed, thousands of people affected by dementia, and those caring for them, will be left to struggle.
So, this Carers Week, Alzheimer’s Society is calling for an increase in the support for those caring for people with dementia.
As local governments refresh their carers strategies, Alzheimer’s Society would like to see councils proactively offering carers of people living with dementia assessments of their needs rather than waiting for them to ask for support.
Carers should feel as though they can take breaks away from caring when they need by making available to them lists of recommended local respite care places.
It is also vital that face to face support groups and respite places are reopened at the earliest opportunity and when safe to do so. These respite services also need to be appropriate for everyone living with dementia, including younger people with dementia.
Lastly, for anyone who provides care and support to those living with dementia, thank you for everything you do and continue to do.
And if you or the person with dementia you care for ever need support, help or advice, we are here for you. Visit alzheimers.org.uk to find out more or call Alzheimer’s Society’s Dementia Connect support line today on 0333 150 3456.
Area Manager, Alzheimer’s Society in Lancashire