CAREGIVER CRUSH

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” (Brodaty and Donkin 217; Caregiving; Makic 546; Reinhard et al. 1–353). 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 (Herd et al. 1).

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 (Herd et al. 1). 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 (1). 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.

The research also shows that, beyond blocking access to care, “burdens are often not just a result of inattention or lack of capacity, but also the product of deliberate design” (Herd et al. 2). 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 (2).

Across sectors, including healthcare, administrative burdens have a greater negative impact on “those deemed undeserving” (Herd et al. 10), this is to say, minorities including women, people of color, those with disabilities, and the elderly (Herd 53). 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 (Herd et al. 9). 

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 (Herd et al. 11). Per Herd et al., an “administrative burden Catch-22 emerges” (11) 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 (2, 12). 

Herd et al. place the costs of administrative burdens into three categories: learning compliance, and psychological (4). To take advantage of a program or service, one must know about that program and understand program eligibility, both of which are often opaque (4). Then there are the “tedious tasks” (5) 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 (6). 

For unpaid family dementia caregivers, these costs are on top of the existing stress, pressure, and fears of caring for someone with dementia. I argue that as the stress of these burdens “accumulate over time” (Herd et al. 11), 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. 12). Herd et al. refer to this as “policymaking by other means” (12).  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 to the goods and services. We could call this an administrative burden audit, if you will. Herd et al. states that “to “see” burdens, we need to better examine where they come from and how they operate” (2). 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. 

Works Cited

Brodaty, Henry, and Marika Donkin. “Family caregivers of people with dementia.” Dialogues in Clinical Neuroscience, vol. 11, no. 2, 2009, pp. 217–228. https://doi.org/10.31887/DCNS.2009.11.2/hbrodaty.

Caregiving. Directed by Chris Durrance, performance by Uzo Aduba as narrator, executive producer Bradley Cooper, Well Beings, WETA Washington, D.C., PBS, 24 June 2025, www.pbs.org/show/caregiving/.

Herd, Pamela, Hilary Hoynes, Jamila Michener, and Donald P. Moynihan. "Introduction: Administrative Burden as a Mechanism of Inequality in Policy Implementation." RSF: The Russell Sage Foundation Journal of the Social Sciences, vol. 9, no. 5, 2023, pp. 1–30. https://doi.org/10.7758/RSF.2023.9.5.01.

Herd, Pamela. “How Administrative Burdens Are Preventing Access to Critical Income Supports for Older Adults: The Case of the Supplemental Nutrition Assistance Program.” The Public Policy and Aging Report, vol. 25, no. 2, 2015, pp. 52–55. https://doi.org/10.1093/ppar/prv007.

Makic, Mary Beth Flynn. "Taking Care of the Caregiver: Compassion Satisfaction and Compassion Fatigue." Journal of PeriAnesthesia Nursing, vol. 30, no. 6, Dec. 2015, pp. 546–547.

Reinhard, Susan C., Barbara Given, Nirvana Huhtala Petlick, and Ann Bemis. “Supporting Family Caregivers in Providing Care.” Patient Safety and Quality: An Evidence-Based Handbook for Nurses, edited by Ronda G. Hughes, Agency for Healthcare Research and Quality (US), 2008, pp. 1–64. Publication no. 08-0043.

Materials List

Members Only Jackets

Display Hangars

Twine

Fabric Letters

Clothing Tags

Walker

Adult Diapers

Photograph with Frame

Photograph

Credits

The “game” was designed in Keynote. All graphic elements were sourced from my paid account with Canva. All music and SFX were sourced from my paid account with Artlist.io. All assets were accessed between February and August 2025.

Graphic Assets/Elements Credits - www.canva.com

Abstract Geometric Forget Me Not Flower by Sketchify Italy.

Back View Laptop by theimg.

Birth Certificate by Nadya Bilqis.

Car Outline Icon by @andrigraphic.

Clean Lined Buildable Interiors Queen Bed by Sketchify Korea.

Desk Table by pikgura.

Doctor Office Icon Style by Asim Faraz from asim faraz.

Document Gradient Icon by Eucalyp from amethyststudio.

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Green Tree by Nisrin from Soccares Studio.

Hand Drawn Illustration of a 20 Dollar Bill by irasutoya from いらすとや.

ID Card with Electronic Chip by Pixelhound.

Illustration of a Social Security Card by irasutoya from いらすとや.

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Note by TitikTiga Project's Images.

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White Closet Icon by Davids47.

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Young Woman Character by iconsy.

*Additional graphic assets, including fonts, layout components, and design shapes such as lines and circles, did not list individual designers. 

Music & SFX Credits - www.artlist.io

Adam Pietruszko  - Whooshes and Transitions - Riser Piercing Metallic Sweep

Adi Goldstein - Quiet Rain

Airborne Sound - Eat - Eating a banana

Airborne Sound - Personal Hygiene - Urinating Into Toilet Bowl Adult Male Tinkle

Airborne Sound - Video game modern game-play accent harp

Alberto Sueri - RPG Game - Magical Crystals

Alberto Sueri - Sonic Transitions - Magic Spell Impact

Apple Hill Studios - Core Phrases - Female Saying Ahh

Apple Hill Studios - Core Phrases - Female Saying Amazing

Apple Hill Studios - Core Phrases - Female Saying Come On

Apple Hill Studios - Core Phrases - Female Saying Finally

Apple Hill Studios - Core Phrases - Female Saying For Me

Apple Hill Studios - Core Phrases - Female Saying I See You

Apple Hill Studios - Core Phrases - Female Saying Nice Excited

Apple Hill Studios - Core Phrases - Female Saying Oh My Goodness

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Apple Hill Studios - Core Phrases - Female Saying Unbelievable

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Articulated Sounds - Hocus Pocus - White Fairy Dust

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Artlist Original - LOGOs - Legendary harp suffix upwards progression

Artlist Original - Pixel Game - Game Over Downer.

Artlist Original - Tech Glitch - Crystal Magic

Artlist Original - The Princess Quest - Harp Melodic Ending D Major

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Artlist Studios - Toony Tunes - Stretchy Reverse

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CB Sounddesign - All That Glitters - Rattling Chimes

CB Sounddesign - All That Glitters - Shining Chimes

CB Sounddesign - All That Glitters - Shining Chimes

CB Sounddesign - Prime Logos - Ascending Synth Arpeggio Rain Stick Whoosh

CB Sounddesign - Prime Logos - Ascending Synth Arpeggio Rain Stick Whoosh

CB Sounddesign - Prime Logos - Flipping Pages Synth Bells Arpeggio

CB Sounddesign - Prime Logos - Magical Synth Chord Wind Chimes

Cristian Lucchetta - Black Magic - Whizzing Whoosh Wand Spell Cast

Cristian Lucchetta - Practical Magic - Magical Transition

Cristian Lucchetta - Practical Magic - Protections Breaking

Cristian Lucchetta - Practical Magic - Stardust Chimes

Cristian Lucchetta - White Magic - Casting a Healing Spell.

Cristian Lucchetta - White Magic - Swift Power Up Positive

Cristian Lucchetta - White Magic - Wand Gesture Vanishing Spell

Dauzkobza - Folklore - Harp Glissando

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DB studios - Analog wall clock ticking seconds

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DB studios - Wind chimes metallic magical

DeanKR - Christmas Vibes - Long Ascending Chimes Pass By 02

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DeanKR - Christmas Vibes - Long Descending Chimes Pass By 01

DeanKR - Christmas Vibes - Long Descending Chimes Pass By 02

DeanKR - Christmas Vibes - Magical Windy Whoosh Long  02

DeanKR - Christmas Vibes - Passing Chimes Descending 01

DeanKR - Glitch Transitions - Signal Crash Stuttering

Eiravaein Works - Flourish - Eerie Metallic Synth Phrase

Eiravaein Works - Start Select Vol 3 - Positive Chime Logo

Eiravaein Works - Start Select Vol 3 - Symphonic Magic Spell Logo

Epic Stock Media - Explainer Video - Falling Harp Negative Notification Alert

Epic Stock Media - Mobile Game - Crystal Break

Epic Stock Media - Percussive - Descending Magical Chimes Sweep

Epic Stock Media - Percussive - Magical Chimes Sweep

Epic Stock Media - Quest Game - Accept Mission Mysterious Dark Tone Unlock Chime

Gamemaster Audio - Magic Spells - Open Popping Delight Trophy Chime Bells

HD Audio - Christmas Spirit - Whoosh Festive Wind

Library - HEAL Impact shiny wobble and thud

Library - HEAL Whoosh choir with chimes

Manos Mars - The Tuning

Marc Robillard – Carousel

Marcello Del Monaco - Logo Legends - Enchanted Fantasy  Theme Female Choir Harp 160 BPM Fm

Marcello Del Monaco - Logo Legends - White Magic Wind Healing Angelic.

Modern UI - Classic Positive Chime

Ni Sound - Cute Interface -  Clinking Chimes Notification

Ni Sound - Cute Interface -  Shiny Synth Bells Positive Notification

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Ni Sound - Heartwarming Transitions - Fast Playing Dreamy Harp Sparkly C Major

Ni Sound - Heartwarming Transitions - Melodic Harp Playing Positive Arpeggiating

Ni Sound - Matching Game - Chimes Rising  Reverse Appearance

Ni Sound - Matching Game - Game Win Long Chimes Sweep

Ni Sound - Matching Game - Game Win Short Chime Sweep

Ni Sound - Melodic Transitions -  Harp Arpeggio Downturn Sad Reflective

Ni Sound - Modern UI - Smart Startup

Ni Sound - Modern UI - Smart Startup

Ni Sound - Soft UI - Positive Notification Chimes

Ni Sound - Timeless Logos - Magical Harp Arpeggio Chord Melodic Transition

Phil Michalski - Sci fi tech robotics high bleep acknowledge quick low mech load open transformation

Selkor Studio - Classic Recalls - Playful Glockenspiel Chime

SilenceOther Sounds - Sparkly Logos - Climbing Chime Notes Achievement

SilenceOther Sounds - Sparkly Logos - Gliding Down Chime Notes

SilenceOther Sounds - Sparkly Logos - Simmering Notes Reverberant

Skygaze - Musical Logos - Falling From The Heavens Magical Celesta Descending Arpeggio

SoundCrib - Bright UI - Task Completed 02

SoundCrib - Sweet UI - Bright Metallic Strum

SoundCrib - Sweet UI - Bright Popup

Soundkrampf - Gaming Keyboards - Mechanical Keyboard Red Switch Typing Sequence

Stuart Duffield - Spellcast - Healing Magic Choir

Stuart Duffield - Spellcast - Healing Magic Choir

Yael Heim - Deep Impact - Rising Sweet Pop

Yehezkel Raz – Icicles

Yotam Agam - Unconscious Mind Delta