An Australian organisation called Beyond Blue which is focused on supporting mental health said in a recent article it: “Recognises and understands the feelings of anxiety, distress and concern (BPSC-19) many people may be experiencing in relation to the coronavirus (COVID-19) and offers some advice on how to look after your wellbeing.”
Beyond Blue is one of literally thousands of organisations who have set up a Coronavirus Mental Wellbeing Support Service or similar service or resource page in response to the COVID-19 pandemic.
What this has highlighted, is that this support has been missing for people with dementia.
Many websites have a lot of really good information and advice for us all, including some which are more specific to dementia such as DAI’s Resource page and infographic and the ADI COVID-19 Resource page.
Organisations supporting people with dementia and our families are also now actively setting up similar online supports and resources; some are advocating even more now for the rights of people with disabilities, such as the International Disability Alliance during this pandemic, which is encouraging and helpful.
It is important though, that the disability community starts to more actively include people with dementia in their rhetoric and campaigning, and that they provide appropriate support for people with cognitive disabilities, in the same way they so proactvely do for all other disabilities.
It’s also imperative that the dementia community more actively campaign for dementia as a cause of disability, and for our rights. Dementia ia a major cause of disability and dependence (WHO), and as such, the symproms must be managed as as disabilities.
My questioning about all of this ‘new’ and very proacive support and advice for everyone since the COVID-19 pandemic, is why it’s taken a pandemic for people without dementia, and the organisations who are meant to be advocating for us, to realise what it is like for people with dementia and our families, from the time of diagnosis?
Why have there not been similar supports to help people newly diagnosed with dementia to cope with their diagnosis, to manage the cognitive changes they are facing as acquired disabilities (disabilities that will only get worse), and to be provided with emotional and psychological support to accept the reality that dementia is a terminal illness – prior to COVID-19?
The Beyond Blue site has a lot of interesting support and advice, and it’s definitely worth reading.
Almost every section does however, lead me to question even more why I was not provided with the same type of support when diagnosed with dementia, and why most people with dementia are still not being provided with these types of support. Here are two examples of COVID-support:
Where was the support for me when I lost my job due to the discrimination of dementia? Being supported to continue to work, or to be paid for time and expertise, is a human right.
Where was the support for me when I became isolated and lost many of my family, friends and connections? In spite of my now having many new friends and connectons, there are still times when my loneliness seeps into my bones. No one supported me when this happened, nor when a large percentage of my personal and professional connections including family and many friends who physically and socially distanced themselves from me after my diagnosis of dementia.
Obviously, I could go on… but I’m sure you get my point.
In truth, the lack of support for people with dementia was the main reason Dementia Alliance International (DAI) was founded on 1 January 2014.
It has taken people with dementia to proactively support themselves, then a global pandemic, to get others to understand our reality…