This week, peak body Dementia Australia released a new discussion paper it has developed in partnership with the University of Sydney.
The 36-page paper – titled ‘One day the support was gone’ – looks at the mental health impacts of COVID-19 on people living with dementia, families and carers – and it is not easy reading.
For many of those interviewed for the research, the pandemic saw the routines of day-to-day life significantly disrupted.
Daily supports lost
Dementia Australia Dementia Advocate Karen Glennen, who cares for her husband Kerin who is living with younger onset dementia, said living in Victoria in lockdown this year has had profound impacts on their lives.
“All of the supports, structures, community groups and community facilities that supported Kerin to maintain his purpose, agency and autonomy disappeared,” Mrs Glennen said.
“The very things that provided engagement, motivation, and hopefully slow the progression of the disease were gone.”
“Surprisingly, I had to acknowledge that it had been a difficult time and, given the increase in demands over that period, I realised that I hadn’t dealt with the psychological and emotional toll on myself because I was more concerned with establishing normalcy and routines for Kerin.”
COVID sees health decline
The report concludes that a number of people living with dementia saw a decline in their health due to having less contact with others.
“People impacted by dementia already experience lower levels of social engagement, inclusion and connectedness within their communities. This, coupled with the restrictions enforced through the COVID-19 pandemic, has meant that people living with dementia, their families and carers are even more vulnerable to adverse mental health outcomes,” Dementia Australia CEO Maree McCabe said.
Dementia Australia makes 14 recommendations aimed at preventing this situation from happening again, including:
- The development of future programs and supports that acknowledge the unique needs of people living with dementia.
- Mitigating isolation and loneliness in people living with dementia and family carers receiving home and residential aged care through ongoing mental health and aged care support services.
- People living with dementia having access to their designated carers by ensuring essential visits are safely integrated back into residential aged care settings following any lockdown period.
National plan needed to ensure people maintain contacts
Most importantly, Dementia Australia recommends that the Federal Government develop a national aged care pandemic response to ensure that both further outbreaks are prevented and the importance of families being able to visit relatives in aged care is recognised.
The recommendation for a national aged care pandemic response plan was contained in the Royal Commission’s special COVID report – but the Aged Care Minister, Senator Richard Colbeck has maintained the Federal Government already had a plan for aged care as part of the national pandemic response.
While lockdown restrictions have helped Australia to avoid the widespread outbreaks overseas, it is clear that there could have been more done to help those older Australians living with dementia and their loved ones during the pandemic.
With the Government due to report to Parliament on its progress on the report’s six recommendations by next Tuesday, 1 December, we hope that any future plan factors in the needs of our most vulnerable and their carers.
For support, please contact National Dementia Helpline on 1800 100 500, 8am to 8pm Monday to Friday excluding public holidays.
