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Caring for dementia care-givers – a novel approach

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NR Times meets Sara Masoud, programme leader of a groundbreaking dementia carers initiative that recognises the importance of culture, community and research representation.

As a teenager living in Southern Texas, Sara Masoud found herself caring for her elderly grandfather as he began to develop signs of dementia. Her family knew nothing of the condition.

“We didn’t even really have a word for it in our family,” Masoud told NR Times.

After Masoud left high school and began her undergraduate degree, her grandfather’s condition worsened and her role as a caregiver took a more prominent position in her life.

“We operated from a place of love and compassion, but we had no idea what dementia was,” she said.

“We were still buying into the concept of dementia as just something that happens when you get older. There [was] a sort of dismissal and diminishing of the condition.

“I think that led to potential feelings of isolation and panic for him. And culturally, from his family background, they don’t really talk about health. It was very much like, ‘Let’s just power through this, everything’s fine’.”

Masoud spent some of her childhood in the United Arab Emirates, before growing up in El Paso, Texas. Her Palestinian father emigrated to the US for his education.

During the time she spent caring for her grandfather, she started to notice disparities in the way people of different communities experience care.

As a majority-Hispanic city, the way people experience healthcare in El Paso differs from other parts of the country and it is known for being an underserved city when it comes to healthcare, Masoud explained. In a lot of cases, people do not identify as caregivers.

The responsibility of caring for family is rarely questioned and care roles are typically spread across multiple family members. There is a similar dynamic in many Arabic families, which Masoud experienced firsthand.

“I started to piece it together, that this was dementia and that I was a caregiver,” she said. “That word wasn’t something I related to because ‘you’re a granddaughter, you’re doing what you’re supposed to do’.”

“In Central and South Texas, we have a predominantly Latino and Hispanic population. Culturally, there are differences. I clued in on that with my dynamic, being an Arab, being Palestinian and being raised in a culture where you don’t question your role.

“You provide care to your family members and your elders because they hold a special place in a family structure. That cultural dynamics sometimes lead people to not ask questions.”

While culture plays a prominent role in how and to what extent people access care, Masoud believes it’s important not to blame culture. “Culture is a very beautiful thing,” she said. “I think it was my culture that was the strength in our care provision, but it also was the barrier to me asking questions.”

Cultural nuances have a greater impact on accessibility to care than we might think.

The care that is available to people in El Paso is not necessarily aligned with people’s experiences and cultures.

A trained neurologist may be brought into an area, for example, but a lack of training in the workings of that community can lead to barriers forming.

Having experienced caring for her grandfather and living in a city with a history of low access to healthcare, Masoud developed an interest in public health and how underserved communities navigate systems of care.

A translational scientist in training, she now works as a programme manager for the University of Texas’ Caring for the Caregivers programme which supports families impacted by dementia.

The grants and donation-funded programme includes education and engagement initiatives, including classes that teach caregivers about the typical trajectory of dementia and the financial, legal and emotional challenges that they might face along the way.

The programme also conducts research that seeks to better understand the impact of culture on healthcare.

“There is an incredible push for research at the national level [and] at the global level to tease out these nuanced differences,” Masoud said.

“The experiences of a white family caregiver versus a Latino family caregiver versus the black family caregiver are very important nuances to identify through research.”

Now, the work of Caring for the Caregivers is extending to the world of academic research, which has historically seen low engagement from Latino and other minority communities.

Some studies suggest that the Latino population is at 1.5 times greater risk of developing dementia compared to white Americans.

However, despite making up almost 19 per cent of the US population, Latino people constitute just one to ten per cent of participants in clinical trials on dementia.

Meanwhile, the black population is suggested to be at two times greater risk of dementia while being similarly underrepresented in clinical trials in the US.

According to a 2021 study, black patients account for just 5 per cent of clinical trial participants. This could lead to big implications when testing the safety and efficacy of medications.

Interestingly, despite there being limited numbers of Latino people participating in clinical research, there is enough evidence to suggest that Latino people are very willing to participate in research. In reality, the reasons for this lack of participation are complex.

Research suggests that it is due to factors such as a lack of awareness of trial opportunities, lack of transportation, language barriers and mistrust of research and the medical system.

“You can no longer point the finger at communities and say, It’s all your fault,” Masoud said.

“We need to democratise the research process. I’ve seen the way that the research community often discusses the absence of representation.

“Rather than using terms like ‘excluding communities from participation’, we will say, ‘underrepresented’, and that to me is a really effective way of avoiding the topic of what is preventing communities from participating in research, because we know that there is an interest.”

While researchers may leave the door open to minority groups, more is needed to engage with communities that are excluded from clinical research. Much of Masoud’s work with Caring for the Caregivers seeks to address this issue, which she describes as “systematic”.

The project sets an example of what relationship-led research can look like in a real-world setting. Several years ago, Masoud, along with her mentor, Dr Carol White, kickstarted a community project to engage families impacted by dementia in the South Texas region.

“My whole focus is that if we bring communities into the research process as leaders in research, then maybe that research will be more responsive, will be safer, will be more relevant to those communities because who knows better than the communities themselves?”

Studies have identified multiple barriers to research that impact individuals, such as language and transportation, and the research community appears to be taking note, to an extent.

The NIH, for example, introduced a policy in 2021 that requires grant applicants to actively recruit women and members of minority groups.

The Food and Drug Administration issued similar guidance in 2020 to encourage trials to “reflect the population most likely to use the drug”.

The University of Alabama’s O’Neal Comprehensive Cancer Centre, meanwhile, has introduced an initiative to reduce the travel burden by partnering with local oncology clinics and other medical facilities across the state.

While these initiatives are a step in the right direction, Sara believes the issue has deeper roots that need to be addressed.

These issues are more nuanced than individual barriers, like transport, and are linked to systems of power that have dictated who, how and why research is conducted.

Last month, Masoud was selected for the Aspen Institute’s Healthy Communities Fellowship which aims to shift this power into the hands of local, community leaders who have historically been underfunded and have lacked access to larger networks and resources.

“We tend to try to stay focused on the individual barriers like ‘they don’t speak English’ or ‘they don’t have transportation’.

“This is true and that’s our responsibility as researchers to develop research in their language and to provide transportation.

“But, I think the exclusion is something that I would tie to a systematic exclusion that’s woven into the way research is conducted, the way we ask questions and who asks the questions; it’s multi-levelled.

While community-led research is beginning to gain more attention in the States and in other parts of the world, transforming the institutions that dictate research practice will take time.

For Sara, this will be about “demystifying, decentralising and democratising” research and shifting some of the power away from institutions and towards communities.

It’s an ambitious aim, but “we’re building up towards a movement,” she said.

“We need to produce the language of research at the community level because when that happens, we can see people taking a sense of ownership of research.

“We need people to have entitlement to these spaces, to this knowledge and to these discussions. Moving institutions is inherently difficult because they’re built to sustain power structures.”

 

HIWIN

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