With substantial lockdown easements and the beginning of a new reality ahead of us, we examine the serious impact the COVID-19 pandemic continues to have on people affected by dementia.
The risk of infection may be falling, but lockdown measures are proving to have serious implications on the health and wellbeing of people living with dementia, their carers and loved ones.
There is an opportunity for the Government to do something about this and we can give multiple reasons on why they need to.
Coronavirus has had an excessive impact on people affected by dementia
Since the outbreak of COVID-19 earlier this year, life as we knew it has changed drastically. However, significant evidence has shown that people affected by dementia, living in both care homes and the community, have been excessively impacted.
Last month, data revealed that dementia is the most frequent pre-existing health condition for people dying with coronavirus. As well as being at risk of coronavirus, people affected by dementia are also facing devastating effects from social isolation and interrupted healthcare.
New data from the Office for National Statistics has shown that in March and April 25,000 people living with dementia passed away in England and Wales. This is more than double the number of deaths we’d expect for March and April without the pandemic.
Within the increase of deaths, 65% were due to COVID-19, but there is an additional increase of 35% in people with dementia passing away that were not registered due to coronavirus. We need to understand why and for the Government to address exactly how people with the condition are being impacted.
The death rate from the virus is falling but this doesn’t change the utter devastation families across the country have endured. Anxiety continues to grow as the Government has not specifically mentioned dementia in their future plans and strategies.
Families currently have no control over the care of their loved ones
Since the outbreak we have heard from thousands of people living with dementia, their carers and loved ones who feel that the pandemic has caused them to lose complete control.
The particularly slow response to address the vast impact of the virus on those who rely on social care has meant that many families have simply had to live with the circumstances, with no real guidance on what will happen next.
Rightfully, visits to care homes were stopped in March. However, the majority of loved ones will not have seen, or in some cases spoken to, their family members living in a care home for almost four months. There needs to be a plan with clear guidance on how this can start to change. A ‘blanket no’ approach is no longer appropriate or fair.
The nature of dementia means that people living with the condition need social contact and routine stimulation to keep cognitive deterioration at bay for as long as possible. With the pressure of this falling to under-resourced or unpaid carers, the Government must consider the implications for staff and the risk of carer burnout.
For many families, the quality and standard of care their loved ones receive in care homes or from home carers is exceptional and a real source of reassurance during this time. However, this doesn’t change the vital role that family care plays in supporting the progression of dementia.
People affected by dementia rely too much on the social care system to be forgotten
Long before the coronavirus outbreak, the social care system did not work for people affected by dementia. The pandemic has only exacerbated just how much we need social care reform and we will continue to call on government to Fix Dementia Care.
It is a greatly positive step that Government have committed to a Social Care Taskforce in response to COVID-19.
What people affected by dementia need now is for dementia to be prioritised on this taskforce. We are working hard to ensure that the following are included in those action plans.
We are asking Government to implement:
- An immediate and rapid investigation to better understand why people with dementia are being disproportionately impacted.
- Guidance on safe social contact between people living with dementia – either in a care home or in their own homes – and their loved ones.
- Improved communications to people affected by dementia that are clear, consistent and straightforward.
- Safe, regular, repeated and appropriate testing of people affected by dementia in care homes and those receiving domiciliary care.
- Visits from healthcare professionals are re-introduced to care settings as soon as possible.
What you can do now
We are doing all we can to influence Government, so their next steps consider the needs of people affected by dementia.
We can’t do this without you, please join our campaign.
Join our campaign today
We will keep you updated on our progress and provide actions you can take to ensure people affected by dementia get the support they need.