An unexplored territory
I was struggling with my own health issues during the early part of the coronavirus lockdown and could do little more that observe as the evidence mounted on the increased risk the disease posed to people from BAME communities. While the academic and research communities made a start on developing an evidence base the government, allegedly intent on following the science, took a while to notice this was a problem. One suspects that, as with the Windrush scandal it was the pressure of media reporting that galvanised it into reluctant action. When PHE (Public Health England) was tasked with reporting on the issue, I was not reassured. Anyone who has been working on the impact on dementia on BAME communities will be aware that the PHE’s record on creating meaningful change in this area is less than stellar, despite the fact that awareness of longstanding disparities in health for BAME communities has been around for a long time and reports of the higher risks of dementia in some BAME populations have received significant media attention in the last few years.
Unsurprisingly, the PHE’s initial report said little more than the ONS (Office of National Statistics) had already reported on. The government sought to bury the inconvenient commentary from the 4,000 people who responded to the request to provide an account of their experience of the coronavirus. When this report was finally released the PHE was refreshingly assertive in making clear the broad systemic and cumulative discrimination faced by BAME communities underlying the increased risk COVID 19 poses to BAME communities. The PHE should stick to its guns and take a similarly more robust approach to challenging other ethnic health inequalities in the future. It could start with dementia. The PHE COVID19 report is available here and for a sobering, but still not exactly surprising, account of the attempts to deny and sideline it read Professor Raj Bhopal’s British Medical Journal article here
DACE (The Dementia Alliance for Culture and Ethnicity) posted information resources on coronavirus in community languages that were being developed in the UK and internationally on Twitter on 25th March, 26th March, 2nd April, 15th April, 21st April and 27th April. I would have liked to have seen PHE and other government sources doing more on this front with the far greater resources they have at their disposal than me in my living room with a laptop, several cups of coffee and a jazz piano playlist from Spotify
I posted a query on Twitter in the aftermath on a report on excess nursing home deaths asking if anyone had looked at BAME deaths in nursing homes and if they were proportionate. Despite this been one of the most retweeted posts I’ve ever had, no one has got back to me with any reference to any work being done.
As far as I know the only other sources picking up on and developing resources that capture the interface at the moment between COVID19, dementia and BAME communities are @Shahid_MoSardar, @MeriYaadainCiC, @MaryTilki, @tide_carers, @CultureDementia and @MikeClarkeAlz.
Ronald Amanaze’s Talk Dementia (@arts_dementia ) creative initiative in response to the pandemic lockdown needs wider promotion and this is something I will be directly supporting.
I assume there will be more resources and initiatives out there that address this interface and I’d welcome contact from those who I have missed out on. We should also better recognise the scale of devastating loss across many community organisations during the pandemic as these already hard pressed organisations have lost staff, family members and volunteers.
Collating Resources
DACE have pulled together a coronavirus information resource page for their website that we hope will be useful for people living with dementia and their carers, supplementing the other general information on dementia for BAME communities and service providers which can also be found elsewhere on the site. The coronavirus webpage includes:
1. Advice on managing coronavirus risk in a variety of community languages
2. Links to public domain research reports that cover the impact of coronavirus on BAME communities and/or those living with dementia
3. Key general resources on wellbeing in later life and supporting agencies that are likely to be less well known than the major dementia charities
We will update it as more information is available in the public domain.
Unanswered questions on the impact of the pandemic on those in BAME community living with dementia
Important questions remain to be raised and answered regarding the experience of those from BAME communities living with dementia and their carers during the pandemic. These also need to be part of the wider examination being publicly called for on the impact of coronavirus on BAME communities.
These questions include:
· Since it is generally accepted that there is both a higher risk of dementia in BAME communities and an under diagnosis of dementia for people from BAME communities, why was there not recognition of the BAME elders over 65 as being at potentially exceptionally high risk in the pandemic and targeted information campaigns?
· What is the ethnicity breakdown of care home deaths and is this proportionate to local ethnic demography?
· Access to domiciliary care is vital for many BAME carers. What impact has coronavirus had for BAME carers on access to domiciliary care support and access to respite care?
· A common theme in narrative accounts of BAME carers is community isolation. The experience of lockdown has increased this isolation. What has the impact been on the physical and mental health of BAME carers?
· What impact has the coronavirus had on the resources of community organisations, who are in many instances a vital resource for those from BAME communities living with dementia and their carers?
Many people from BAME communities and their carers struggle to get the most basic appropriate support even in ordinary times as myself and colleagues detailed in a recent book Supporting People Living with Dementia in Black , Asian and Minority Ethnic Communities but the coronavirus has brought a perfect storm into the lives of many people who were already barely clinging on.
#coronavirus #dementia #minorityethnic #Alzheimers #carers
David Truswell
Executive Director, Dementia Alliance for Culture and Ethnicity
Contact: @davidondementia