The pandemic has been catastrophic for those living with dementia, but new innovations provide hope

The human rights of people living with dementia have been compromised during the COVID-19 pandemic, according to a research paper prepared by an international panel of dementia experts.

People living with dementia have made up a high proportion of COVID-19 deaths internationally, reflecting the high death rates in residential care facilities, where large number of residents have dementia, the report states.

The report, ‘Impact and mortality of COVID-19 on people living with dementia: cross-country report’, was prepared by an international panel of experts, including Australia’s Lee-Fay Low, Associate Professor Ageing and Health at the Faculty of Health Sciences, The University of Sydney.

Associate Professor Low told HelloCare that Australia was no exception when it came to people living with dementia having their human rights compromised during the pandemic.

“We’ve seen media reports on how residents, including those with dementia, have been neglected in terms of basic care needs during COVID-19 outbreaks in Melbourne,” Ms Low said. 

“Shutting residential aged care facilities to family carers without ensuring that we are putting in additional support to keep having those relationships (regular phone calls, videochats) means that their rights to family have been compromised,” she said. 

“In addition, some residents with dementia find videochat and phone calls confusing and even distressing, so they are not good options for them in terms of being connected with family. 

“Regulation to safeguard resident wellbeing has probably been inadequate during COVID-19,” Associate Professor Low said.

As the pandemic has progressed, Associate Professor Low said the situation has improved in some parts of Australia, but remains troubling in hotspots.

“In some parts of Australia, the situation has improved, where residents are having family carers and more general visitors again. However in hotspots, residents again aren’t able to see their families. Border restrictions mean that some families can’t visit. Some aged care facilities have also put in more stringent restrictions than the guidelines suggest,” she noted.

The percentage of people who died from COVID-19 who were living in residential care and who had dementia ranges from 29 per cent to 75 per cent across the countries included in the report: United Kingdom, Spain, Ireland, Italy, Australia, the United States, India, Kenya and Brazil.

Innovations helping to maintain bonds

The report provides examples of “excellent” innovations that have been developed to help to restore the bonds between residents living with dementia and loved ones and carers.

The report includes short-term and long-term actions that can ensure people with dementia are not being “left behind” during this pandemic – or future ones.

• Regular activities have been redesigned, for example residents take part in hallway bingo and doorway exercise classes so they can take part in their regular activities while remaining socially distanced.

• Visits have been adapted, for example window, garden or car visits have been made permissible.

• Therapeutic visits take place in a window or courtyard, allowing therapists to engage residents with music, humour, art or creative writing. These activities provide both cognitive stimulation and social connectivity.

• In the UK, ‘drive-through’ facilities enable family and friends to visit residents.

• In the Netherlands, visiting cabins made of glass allow residents to meet family and friends in a safe environment where they can see each other through a glass wall.

• NGOs, charities and health agencies have responded to the pandemic by repurposing their services so that they can be delivered virtually to support people living with dementia and their families. For example:
  • TADA exercise videos
  • ALZI music therapy
  • Poco-Poco dancing, yoga and Pilates
  • The Alzheimer Society in the UK provides Singing for the Brain sessions.
  • The University of Hong Kong, in collaboration with University College London, is running a pilot program using cognitive stimulation therapy for people with dementia online.

Support for care homes

The report lists the support residential care homes need to ensure residents who are living with dementia are protected.

• Governments must ensure a guaranteed supply of PPE.
• All staff must be trained in infection prevention and control and training should be ongoing.
• All staff must receive training specific to the needs of those living with dementia during COVID-19, and include topics such as: 
  • How to implement spatial distancing
  • How to manage visitors
  • How to use PPE
  • Creative ways for staff to reduce fear, anxiety, apathy, depression and boredom – emotions that many residents living with dementia will experience during the pandemic.
• Care homes must ensure they have immediate access to medical specialists such as geriatricians or general practitioners.
• Close family members must be able to continue to deliver care “in partnership” with paid staff. 
• Testing must be available for visitors, residents and staff, even for those who are asymptomatic. Regular and repeated testing in all residents and staff is recommended. 

Better pay for care staff

The authors of the report also note the low pay and incredibly stressful conditions experienced by aged care workers, and recognise the need for higher rates of pay and psychological support for care workers.

“Staff in care homes are usually not well paid, and are under enormous physical and emotional strain during a pandemic of this magnitude,” the report states. 

“There is a need for greater financial recognition of the frontline caregiving work they undertake.”

The Australian government has provided psychological support for the healthcare workforce including aged care workers, in contrast with some other countries in the world.

“There is also a need for greater recognition of the psychological support including counselling they may require for coping with the trauma sometimes experienced,” the report states.

Pandemic raises questions about facility design

Care homes should be “re-imagined” so their design enables better management of pandemic conditions. 

For example, where people can live together in small group settings, such as in The Green House model, with their own bedroom to help minimise the risk of transmission within the home.

“All nursing homes/care homes that provide multiple bed occupancy accommodation should be re-configured to ensure that single rooms are available to all residents,” the report suggests. 

Better integration between care homes and public health services to improve cooperation during situations such as a pandemic, heat waves or extreme pollution

Looking for more information?

If you would like more information about caring for those living with dementia during the pandemic, Associate Professor Low recommends the following resources. 

For practical resources, visit Dementia Australia or Dementia Alliance International. 
And for policy resources visit Alzheimer’s Disease International.