The Elderly in Sub-Saharan Africa: the Case of Ghana

C. Charles Mate-Kole, PhD, Professor in the Department of Psychology, Consultant Clinical Neuropsychologist in the Department of Psychiatry and Founding Director of the Centre for Ageing Studies at the University of Ghana will present “The Elderly in Sub-Saharan Africa: the Case of Ghana” at the June 6, 2022 Center on Aging & Health Scientific Seminar  Series.  We invite you to attend in person.  Masks are required.  You may also view via Zoom by registering at https://bit.ly/3vTcnEi.  This event is sponsored by: The Matthew Tayback, Sc.D., Memorial Lecture Fund; Center on Aging and Health; Division of Geriatric Medicine and Gerontology; Johns Hopkins Older Americans Independence Center; Epidemiology and Biostatistics of Aging Training Program.

senior Latina couple

Family Caregivers Share Both Positive and Challenging Experiences in New Study

An old adage goes something like this: “Growing old is not for the faint of heart.” Perhaps there’s something else about the aging human condition at parity with this wisdom: caregiving is both challenging and rewarding. And perhaps listening to caregiver experiences individually and as an aggregate can help us prepare for a culture and society where aging and caregiving can be less challenging and more rewarding.

Now is the time to do so.

According to Aging Care’s Caregiver Statistics, in 2020, the AARP Public Policy Institute and the National Alliance for Caregiving reported that 53 million Americans are providing unpaid care to family and friends, and family caregivers provide an average of 23.7 hours of care each week—and if they cohabitate, the number of hours increases to 37.4 hours weekly.

Baby boomers are getting older and living longer, and the Population Reference Bureau projects the number of Americans over the age of 65 will practically double between 2018 to 2060, from 52 million to 95 million people. Additionally, given the fact that many older adults develop chronic conditions as they age, combined with the scarcity of affordable care, we can only expect the number of “informal” or “family caregivers” to grow over time, especially as older adults overwhelmingly desire to age in place, in their own homes.

participants characteristicsMany quantitative studies have examined the health impact of providing care on those who care for family and friends, but few qualitative studies looked into the nuances of how they think, feel, and perceive their experience as a caregiver. To better understand and support them, that’s precisely what Drs. Marcela Blinka, Orla Sheehan, and David L. Roth from JHU’s COAH investigated along with colleagues from the University of Vermont and the University of Alabama at Birmingham.  The results of the study, “Family caregivers emphasize patience and personal growth: a qualitative analysis from the Caregiving Transitions Study,” was published in Age and Ageing in February, 2022.

They examined 251 responses to an open-ended question on the Caregiving Transitions Study—an ancillary of the Reasons for Geographic and Racial Differences in Stroke study—that gathers data about family caregiving and its effect on family caregivers: “Is there any other information that you can think of about your experience in being a caregiver that we should know about or you think might be beneficial to the study?” Upon a thorough review of the answers, the team identified four themes:

  • Cultural/family expectations
  • Growth opportunities
  • Reciprocity
  • Stressors/challenges and recommendations

These caregivers provided about 50 hours of care per week, well above the national average. Most of the caregivers were White women in their 70s providing care to a spouse with dementia. For some, it was their second turn at caregiving, having already cared for a parent. Reflecting a few of the themes above, here is a sample of moving, heart-felt, and all-too-real responses from caregivers in their own words:

  • “I promised my father-in-law that I would do whatever it takes to not put [my mother-in-law] in a nursing home.”
  • “It is something you have to do from the heart, if your heart is not in it you will not be able to stick with it… remember that when things get tough, and your loved one says things that hurt you, you have to realize it’s not that person saying things to you, it is their disease.”
  • “I do not like the word ‘caregiver.’ We are married. I do not get paid. I do what I do out of love.”
  • “‘We have a faith-based view that places great importance on honoring your parents.”
  • “You treat them the way that you would want to be treated because… one of these days we will all need help.”
  • “[Even though] there are a lot of resources out there to help… programs are not available to everyone so we have to pay out of pocket which I am not capable of doing.”
  • “If there was a way to get a mental break from everything for just a little while it would help a lot.”
  • Very difficult emotionally [and] I also feel like a prisoner.”
  • “There is a time period where you have to come to the realization that this is the way it is and do the best you can.”
  • “He refuses to let me [help him], because he doesn’t want to be a burden to me… I have a feeling that many care-recipients feel the same way.”

Many individuals who have been caregivers may identify with these themes.  Essential to understanding the enormity of it all is the reality that the caregiving experience is in fact paradoxical. It isn’t all easy or fun, and it can be anguishing sacrifice. But sometimes, it has a silver lining, too, and encompasses “both/and.” Caregiving can push people to grow in ways previously unimagined and spur deep human growth and awareness. This realization can teach us to be aware of what we must do to anticipate and prepare for an aging society that relies upon their informal and family caregivers. What do they need right now?  How can interventions help people become better, healthier caregivers?  What resources need to be developed to support them?

The insights from this qualitative review are useful and impactful because “The projected need for informal caregiving for older adults is expected to outpace the number of available caregivers dramatically in the next decade.  As such, caregivers’ readiness and/or burden in their role are of great importance to an ever-increasing proportion of the population.”

The research team’s key takeaways from the study were:

  • Caregiving was viewed as an unquestioned obligation, repayment of benefits provided by the family member, acts of love, or the fulfilment of promises.
  • Opportunities for growth and reciprocity were the important aspects of the caregiving experience.
  • Caregivers experienced lifestyle changes, financial burdens, and desire for more support in their role.

Dr. Blinka, the first author, wrote: “Informal caregivers are essential to an aging society, especially as there is an increasing emphasis to allow older adults to age in place. Our findings show that caregivers can meet the challenges of caregiving by finding meaning, engaging in mutual support with the care recipient and identifying opportunities for growth. A more comprehensive understanding of the caregiving experience can help inform future interventions as well as provide guidance for how individuals and systems can most effectively support caregivers in fulfilling their roles.”

Dr. Blinka is available for interviews and comments.

By Anthony L. Teano, MLA
Communication Specialist

 

 

The Global Gateway to Aging: An Interview with Dr. Alden Gross

The Global Gateway to Aging is “A platform for population survey data on aging around the world.” COAH collaborator Dr. Alden Gross from the Bloomberg School of Public Health is one of three principle investigators with the Global Gateway to Aging (GGA), which was recently renewed for an additional five years of funding. I had the pleasure of meeting with Alden to ask a few questions and learn more about the interesting and valuable work the Global Gateway to Aging contributes to scientists’ understanding of aging around the world.

Tony: What is the Global Gateway to Aging all about?

Alden: Our NIA [National Institute on Aging] and other countries have funded aging studies around the world that are similar to the Health & Retirement Study (HRS) in the US. These are partner studies to the HRS. To access those data, you have to go to individual study websites and apply for permissions to use the data, which for academics is pretty easy. The Gateway makes it more convenient by telling you in one place where to find each study. Additionally, they create harmonizable variables you use to link across studies. Let’s take wealth/expenditures for instance; how you ask about these things is different across countries (e.g., housing and mortgages), but the Gateway figured out how to make it comparable for anybody who wants to conduct cross-national research. The Global Gateway to Aging’s goal is to create a platform where researchers can conduct cross-national research and use these data that has been collected by governments and supported by their taxpayers. We want researchers to use this data. The Gateway is one way to facilitate that goal.

Tony: Why would someone want to conduct cross-national research?

Alden: Let’s say you want to examine the effects of some exposure on an outcome. The association you find with your sample might vary by the prevalence, background protective and risk factors, and even government policies. If an outcome can be replicated cross-nationally, it lends additional credence to an association that may be causal across multiple settings and not due to a background variable responsible for the association.

Tony: What excites you about the Global Gateway to Aging?

Alden: The quality of the data and detailed documentation. Do you need to know whether a word list was repeated in the same order or different order across trials, or whether words were presented verbally or visually? It’s documented. There are high-quality efforts that go in to collecting the data.

Tony: What Gateway studies in particular interest you?

Alden: Cognitive aging research. In the future, about 2/3’s of dementia cases will be in third-world countries, but only 10% of research dollars are spent outside of European countries and the US.  I work with the Gateway’s Harmonized Cognitive Assessment Protocols (HCAP).

Tony: Tell me more!

Alden: Pretty well. I am part of a Multiple PI team focusing on harmonization of cognitive data in HCAPs as well as derivation of dementia— common ways of measuring dementia across several countries. We’re getting down into the really nitty-gritty stuff… item-level details. Here’s a great example from the Congo, although the Congo study isn’t part of HCAP: one of the most common cognitive tests out there is the Animal Fluency Test, and it only takes about 60 seconds to conduct; the test administrator asks the subject to name as many animals as the can, and it assesses language recall as well as executive function. Typically, a person produces about 30 to 40 words. But let’s say you grew up in a culture where kids aren’t familiar with a lot of animals, and they don’t have access to a zoo. They may not actually know of a lot of different types of animals. Instead, it may be more appropriate to ask them for the kinds of fruits they can name. If we asked about different fruits in the US, we’d get a highly-gendered result… we don’t want to measure sex, we want to measure language production. Identifying the correct set of common tests and making sure that the meaning of the variable is the same across these different contexts is tantamount to harmonizing research data.  The Gateway is producing in-depth documentation these data sets for cross-country comparability. Internally, the Gateway is having a mini-conference for HCAPs at the end of May where we are going to look at relationships and risk factors and outcomes among different countries endeavoring to find commonalities and data sets across different settings.

Tony: What else is on the horizon for the Gateway to Global Aging in which you are particularly involved?

Alden:  There’s lots of workshops all the time! Soon, the PI teams are going to plan out details in science and operations in next 5 years, and also organize user workshops annually for Gateway data.  In 2022 and 2024, we will focus on pollution data, and we will focus on HCAP data in 2023 and 2025—those are our big themes over the next 5 years.

By Anthony L. Teano, MLA, COAH Communications

Frailty in People Living with HIV: An Accelerated Phenotype

Todd T. Brown, MD, PhD, Professor of Medicine and Epidemiology in the Division of Endocrinology, Diabetes, and Metabolism at the Johns Hopkins University School of Medicine will present “Frailty in People Living with HIV: An Accelerated Phenotype” at the May 2nd Scientific Seminar Series.  In person attendance is encouraged.  Light refreshments will be served.  To attend via Zoom, registration is required at https://bit.ly/37aHdyD .