A recent report from the International Long-Term Care Policy Network found that the COVID-19 pandemic had a disproportionate negative impact on people living with dementia. The authors collected data from 9 countries: the United Kingdom, Spain, Ireland, Italy, Australia, the United States, India, Kenya and Brazil.
They found that people with dementia accounted for between 29% and 75% of COVID-19 deaths in these countries. Many of these deaths are linked to care homes. Containing the spread of COVID-19 in care homes is very challenging due to the close living conditions, as well as the difficulty of enforcing mask-wearing among residents with dementia.
In order to contain the spread of the virus, many care homes have implemented social distancing measures. However, many of these adjustments could have contributed to worse patient outcomes, as an abrupt change in routine can greatly impair quality of life for dementia patients and lead to physical deterioration.
For example, personal protective equipment (PPE) such as masks, which can cause distress to dementia patients by making it difficult for them to recognize or communicate with their caregivers. In addition, many care homes experienced PPE shortages, causing widespread COVID-19 infections. Furthermore, only half of the care homes surveyed had the proper facilities to isolate a resident who tested positive for COVID-19.
The rapid spread of COVID-19 in care homes led to many staff members testing positive for the virus. As a result, staff shortages were common and residents were often left alone without assistance for long periods of time. One study found that this chronic isolation was an even higher cause of mortality among dementia patients than the virus itself, often due to dehydration.
In addition, many care homes have banned family visits and reduced contact between residents in order to contain the spread of the virus. These measures have caused many patients to experience loneliness, confusion, or depression. Many care homes have not implemented alternative forms of communication, such as video calls or phone calls.
The impact of COVID-19 is not limited to care homes. Studies have found that dementia patients living at home have experienced worse cognitive symptoms, while caregivers report increased stress and burnout. Many sources of support and respite for dementia caregivers are no longer available during the pandemic. In addition, many centers that offer therapies for dementia patients, such as cognitive stimulation therapy or speech and langauge therapy, have closed.
The authors also noted that ageism and ableism have both worsened health outcomes for dementia patients. Ageism is prejudice against people based on their age, while ableism is prejudice against disabled people. Both of these factors compound on each other for dementia patients. As a result, with many ICUs overrun by COVID-19 cases and short on beds and supplies, dementia patients are often denied treatment in favor of younger patients or individuals without a cognitive disability. The lives of dementia patients, and elderly people general, are seen as less valuable by many people, and thus their deaths are downplayed during discussions of the pandemic.
The current situation is certainly harmful for dementia patients and their caregivers. However, the report offered several suggestions for how to keep patients safe from the virus while promoting social interaction. These include increased use of video calling between care home residents and their families, redesigning activities for social distancing (such as hallway bingo), and allowing family visits through glass windows.
They also emphasized that governments must remedy the PPE shortage in order to protect the staff and residents in care homes. Care home staff should also be financially compensated at higher rates due to the huge emotional and physical burden of their position. Finally, the healthcare and elder care systems must be redesigned in order to prevent a future pandemic from having this kind of impact on dementia patients.
For individuals with dementia and their caregivers, here are some helpful resources related to COVID-19:
- Coronavirus (COVID-19): Tips for Dementia Caregivers (Alzheimer’s Association)
- Additional COVID-19 Guidance for Caregivers of People Living with Dementia in Community Settings (Centers for Disease Control and Prevention)
- Information About COVID-19 for Alzheimer’s Disease Patients (Alzheimer’s News Today)
[Note to readers: Due to the demands of graduate school, I have not been publishing articles nearly as frequently as I used to. I am planning to resume a more regular publishing schedule moving forward, though I likely will not be as prolific as I was in the past. Thank you for your patience and for sticking with me.]