Room 04 · Playable installation
Caregiver Crush
Where dementia caregiving meets administrative burden.
Watch gamer Andi B as she navigates the world of Caregiver Crush. Can YOU handle the crush?
Game play
With commentary from Gamer Andi B
Game play
No commentary
Essay
Creating Policies & Protocols That "Take Care of the Caregiver"
Calls abound in academia, online forums, and other media to take care of the caregiver who, often in cases of dementia, become "invisible second patients." I take the stance that one way to bring this call to life is to unpack policy and protocol in public and private services that are riddled with what are called administrative burdens, burdens that increase existing stress, anxiety, and hopelessness in caregivers while also acting as barriers to appropriate care for the person they are caring for.
Administrative burden and its impacts have been studied extensively by Pamela Herd and other scholars seeking to better understand the ways in which these burdens act as barriers to services, who these burdens impact the most, and in what ways. Administrative burdens are the tensions and management of the education, exorbitant time, emotional labor, resilience, resourcefulness, and advocacy required to obtain private and public sector services. It is the forms, the waiting in lines or on the phone, filling out the form again, sending the form again, researching how to answer the questions on the forms, locating the correct documentation, and so on. While much of the research on administrative burden focuses on the primary recipient of the good or service, I extend this work onto the experiences of dementia caregivers who must themselves jump through hoops created specifically due to dementia, such as not remembering where documents might be located or the inability of the dementia patient to advocate on behalf of themselves.
"Burdens are often not just a result of inattention or lack of capacity, but also the product of deliberate design." - Herd et al.
It is therefore the job of those of us involved in research on dementia caregiving to understand how these burdens operate specifically in the realm of dementia policy, protocol, and services in order to, on purpose, develop updated, appropriate, and thoughtful policies and protocols that reduce caregiver stress and anxiety, and with this, fulfills on actually taking care of the caregiver.
Across sectors, including healthcare, administrative burdens have a greater negative impact on "those deemed undeserving," this is to say, minorities including women, people of color, those with disabilities, and the elderly. Looking at administrative burdens beyond possible nefarious policy and protocol design, these burdens are at once the result of existing inequalities while bolstering those same inequalities.
For burdens that not only take a huge amount of time but that are additionally complex and nearly impossible to understand, those lacking resources such as education, money, social support, flexibility of schedule, and physical health are at a much greater disadvantage of actually achieving the task at hand than those with such resources. Per Herd et al., an "administrative burden Catch-22 emerges" wherein those who need the help the most are often the least equipped to navigate access requirements. Additionally, when a third-party has been outsourced to aid in the management, administration, and/or delivery of social goods and services, this can often increase the burdens.
Herd et al. place the costs of administrative burdens into three categories: learning, compliance, and psychological. To take advantage of a program or service, one must know about that program and understand program eligibility, both of which are often opaque. Then there are the "tedious tasks" of complying with the requirements, which can include waiting, forms, fees, and using funds, goods, or services received in just the right manner to ensure compliance. Additional psychological costs of administrative burden include fear, managing stigma, and losing one's sense of autonomy.
For unpaid family dementia caregivers, these costs are on top of the existing stress, pressure, and fears of caring for someone with dementia. As the stress of these burdens accumulates over time, and as dementia is a durational illness that often lasts years if not decades, the accumulation overload of these costs on unpaid family dementia caregivers is extensive.
While decision-makers are busy creating policies and protocols to manage public and private social goods and services, the administrative burdens themselves are creating hidden policies and protocols. Herd et al. refer to this as "policymaking by other means." What is to be done and how can we reduce administrative burdens for unpaid family dementia caregivers?
Dementia family caregiving can be brutal. This is a call for organizations and institutions to engage with experts on dementia caregiving to better understand where and in what ways accessing the goods and services they provide create barriers. We could call this an administrative burden audit, if you will. Herd et al. state that "to 'see' burdens, we need to better examine where they come from and how they operate." Organizations and institutions that unpaid family dementia caregivers, and the public at large, depend on must broaden their understanding of dementia and unpaid family caregiving when evaluating how and through what processes people are able to access social goods and services. To take care of the caregiver, we actually have to think about the caregiver and caregiving.
Credits
The "game" was designed in Keynote. All graphic elements sourced from Canva. Music and SFX sourced from Artlist.io.