New survey reveals two-in-three family caregivers feel undervalued by society

PRINCETON, N.J. – Almost half (47%) of caregivers caring for a loved one with Alzheimer’s disease or dementia report they feel like they’re drowning and unprepared for the role. That’s according to a new survey — “America’s Unseen Workforce: The Struggles and Silver Linings of Family Caregivers” — conducted by Wakefield Research and sponsored by Otsuka America Pharmaceutical, Inc. (Otsuka). The survey is a part of larger corporate caregiver commitment by Otsuka to advocate for visibility and support of family caregivers everywhere. The program was announced in November at the start of National Family Caregivers and Alzheimer’s Awareness Month. 

Findings from the survey among 500 U.S. unpaid caregivers who provide care to a relative living with Alzheimer’s disease or dementia revealed more than half (55%) describe their role as the most important responsibility they’ve ever had, yet two-in-three feel undervalued by society. Furthermore, nearly two-thirds (65%) say their role is more stressful than any job they have held in the past. Capturing the full picture of caregivers’ often unseen struggles as well as the silver linings across various life stages, the survey emphasized the need for more visibility of caregivers’ stories and opportunities to provide support. 

“Many of us know that caring for a loved one with Alzheimer’s disease or dementia can be a selfless and personally rewarding experience. However, the reality is that it can also feel overwhelming with significant emotional, sociological, and financial consequences for the person providing the care,” said Tarek Rabah, president & CEO, Otsuka North America Pharmaceutical Business. “Behind every family caregiver is an immeasurable love and an unimaginable strength. At Otsuka, we’re committed to continuously gaining a deeper understanding of how the lives of family caregivers are impacted so that we can offer meaningful resources that provide support and alleviate some of the challenges experienced along their unique journeys.”  

As part of the company’s corporate caregiver commitment, Otsuka: 

  • Created The Agitation In Alzheimer’s Screener For Caregivers (AASC™) – a new tool to assist family caregivers with screening for agitation in Alzheimer’s disease. 

  • Is offering employees a new caregiver benefit that provides comprehensive support throughout the caregiving journey. 

  • Is hosting ongoing caregiver roundtables to cultivate a sense of community and ensure the company is supporting their unique, unmet needs.  

  • Launched a docuseries featuring the lived experiences and personal stories of caregivers.  

  • Created a new website and Instagram page, @otsuka_us, dedicated to caregivers.  

The complexities facing the “sandwich generation” 

The survey also explored how caregiving affects careers, finances, and family life, honing in on the “sandwich generation,” who are navigating the trifecta of caring for a loved one, juggling a career and the pressures of parenting. The findings revealed: 

  • Explaining Alzheimer’s disease or dementia is a difficult conversation: The overwhelming majority (96%) of parents found it challenging to explain or discuss their loved one’s diagnosis with their children. 

  • Caregiving takes a toll in the workplace. Nearly three in four (72%) office workers report higher levels of stress from their caregiving responsibilities compared to 58% of non-office workers.      

  • Caregiving comes with a cost. Nearly two in three (64%) caregivers surveyed are being forced to make tough financial choices. Furthermore, 42% of sandwich generation caregivers report not knowing if they could cover next month's rent or mortgage and provide care for their family member. 

“Sandwich generation caregivers negotiate a daily tug-of-war in trying to care for an aging parent while caring for their own children, while often juggling job and financial pressures too,” said Merle Griff, Ph.D., family therapist and leading authority on senior care in the U.S. “However, it must be recognized that half report feeling a stronger connection to the loved one they care for and cite love and helpfulness, alongside stress. Due to the nature of Alzheimer’s disease, every journey is different and it's important to not overly simplify a caregiver’s needs."  

To learn more about Otsuka’s caregiver commitment visit otsuka-us.com/valued-minds/caregiver.  

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Survey Methodology 

The survey, America’s Unseen Workforce: The Struggles and Silver Linings of Family Caregivers, was conducted by Wakefield Research (www.wakefieldresearch.com) among 500 U.S. unpaid caregivers of Alzheimer’s disease or dementia patients between September 19th and September 27th, 2023, using an email invitation and an online survey. Results from the full survey have a margin of error of +/- 4.4 percentage points.  

The term ‘caregivers surveyed’ is used to refer to the family caregivers caring for a loved one with Alzheimer’s disease or dementia.  

  • All 500 caregivers surveyed provide care to a relative without being paid.  

  • All 500 caregivers surveyed provide care to a relative living with Alzheimer’s disease or dementia.  

The ‘sandwich generation’ is a term for those caring for their own children as well as a loved one with Alzheimer’s disease or dementia. Of the 500 caregivers surveyed, 181 (36%) have children under the age of 18 currently living in their home.