Inequity in care burdens

90% of caregivers of persons with dementia suffer from the burden, including higher levels of loneliness and social isolation

Loneliness is a silent killer. Even deadlier in a post-pandemic world of increased isolation

The Atlantic Fellows took initiative to investigate care burdens, loneliness and social isolation in care partners/families of people with neurodegenerative disorders, informing COVID-19 responses internationally. The questionnaire survey that was translated into Arabic, French and Bengali and disseminated in several countries through partnering charities.

The Spark

More than 80% of people living with dementia or neurodegenerative disorders (NDD) depend on a non-professional care partner or family member for support and care.

Even before COVID-19, more than 90% of NDD care partners experienced a significant burden and higher levels of loneliness and social isolation compared to non-carers. Given that data is essential to eliciting action from governments, care agencies and the community, this group of Fellows investigated the significant secondary impacts of COVID-19 physical distancing on the mental well-being and care burden on care-givers, many of whom are older and physically vulnerable themselves.

"COVID-19 tremendously impacts dementia care, specifically carers’ mental health and burden. The Atlantic Institute funds contributed to understanding the carers’ burden globally, and facilitated the collaboration among Atlantic Fellows from different countries."

Yaohua Chen, Atlantic Fellow for Equity in Brain Health

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Call to Action

Based on a Global Brain Health Institute initiative, this project included non-English speaking countries, specifically, Arab, French and Bengali speaking countries. Funding from the Atlantic Institute meant the survey could be translated into three languages, thereby reaching a greater number of identified target groups.

The Initiatives

Overall, the survey revealed vital perspectives on the impact of COVID-19 on caregivers of a broad range of communities; mental health being a prominent issue for carers of people living with dementia. As expected, responses varied in different countries; those in Egypt were dissimilar to those in Oman or Qatar and were in contrast to the results in Ireland and the United States.

  • In the Arabic speaking world, the group contacted appropriate stakeholders with a strategy built on two pillars, first, the dissemination of the survey through various community websites for relevant populations.
  • The second approach was to speak to foundations working in the area of elderly care, e.g. Alzheimer’s Disease Research Group of Oman. Even though Egypt and Gulf countries speak Arabic, they have different cultures and demographics and this approach in Oman resulted in a fresh community care initiative, with the possibility of expansion to other Gulf countries.
  • In French speaking countries, various and diverse stakeholders were also engaged. Almost all of them were very enthusiastic, demonstrating the importance and relevance of the topic. In addition, national and local associations of patients and care-givers published the survey on their websites and/ or social media.
  • The survey has also been distributed to Bengali-speaking populations where lack of access to the internet has been one challenge the Fellows worked with the Alzheimer Society of Bengal to overcome this.

The Initiatives

Overall, the survey revealed vital perspectives on the impact of COVID-19 on caregivers of a broad range of communities; mental health being a prominent issue for carers of people living with dementia. As expected, responses varied in different countries; those in Egypt were dissimilar to those in Oman or Qatar and were in contrast to the results in Ireland and the United States.

  • In the Arabic speaking world, the group contacted appropriate stakeholders with a strategy built on two pillars, first, the dissemination of the survey through various community websites for relevant populations.
  • The second approach was to speak to foundations working in the area of elderly care, e.g. Alzheimer’s Disease Research Group of Oman. Even though Egypt and Gulf countries speak Arabic, they have different cultures and demographics and this approach in Oman resulted in a fresh community care initiative, with the possibility of expansion to other Gulf countries.
  • In French speaking countries, various and diverse stakeholders were also engaged. Almost all of them were very enthusiastic, demonstrating the importance and relevance of the topic. In addition, national and local associations of patients and care-givers published the survey on their websites and/ or social media.
  • The survey has also been distributed to Bengali-speaking populations where lack of access to the internet has been one challenge the Fellows worked with the Alzheimer Society of Bengal to overcome this.

The Scale

"Funding for the survey was a tool to face the health inequity challenges posed by the COVID-19 situation, through providing chances to carers from different populations to express their feelings, problems and needs."

Mohamed Salama, Atlantic Fellow for Equity in Brain Health

"The fund was helpful in evaluating the many and diverse problems of caregivers for people living with dementia during the COVID-19 pandemic across several countries.”

Sanjib Saha,
Atlantic Fellow for Equity in Brain Health

The Future

In order to be prepared for any future global public health crises and their impact on dementia care-givers, we need to learn from the COVID-19 pandemic. This study gives us the opportunity to do that; it is but one approach - the analysis of the data will give us a better understanding of the range of impacts of future pandemics on dementia care-givers. It also allows us to develop a strategy to mitigate these impacts.

See the action in action

Click on the interactive map to see how our Fellows collaborate
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Egypt 2nd Project
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Egypt 2nd Project
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United Kingdom 2nd
United Kingdom
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Sweden
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Get to know the Fellows

Mohamed Salama

Associate professor and associate director, Institute of Global Health and Human Ecology, The American University in Cairo

Sthandiwe 'Stha' Yeni

Ph.D. candidate, University of Western Cape

Devon Simmons

Global ambassador for education programs; and research assistant, Incarceration Nations Network

Anjali Sarker

Program manager, The Oxford Character Project, University of Oxford

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