Study Highlights Caregivers' Struggles with Dementia

The growing number of people with dementia and other aging issues who need long-term care adds stress and burden to family caregivers who are often untrained and unprepared for the job. New research findings will aid the design of a new national digital platform supporting caregivers.

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Study Highlights Caregivers' Struggles with Dementia
3 Min Read October 12th, 2023

A Texas A&M University School of Public Health study in collaboration with, highlights the growing concerns and unique challenges faced by the 11 million American caregivers for dementia patients. This partnership aims to improve the support offered to these caregivers through a digital platform backed by a $2.3 million grant from the National Institute on Aging.

Approximately 6.5 million Americans aged 65 and older currently live with Alzheimer's and related dementias, a number projected to reach 13.8 million by 2060. While the root cause of dementia remains a mystery, the disease's repercussions are evident, manifesting in memory loss, motor function decline, and other severe conditions. 

Most dementia caregivers are spouses, adult children, or in-laws, predominantly older females juggling other significant responsibilities. In 2021, they contributed over 16 billion hours of care, translating to an economic toll of approximately $272 billion.

Many people are unprepared with no plan for long-term care or a Long-Term Care Insurance policy. The lack of planning places the full responsibility of caregiving and paying for professional care on families and finances. 

Caregiving Services Needed

The study, led by Dr. Marcia Ory, emphasizes caregivers' pressing need for high-quality, trustworthy, and adaptable caregiving services. It further addresses the chronic stress, depression, anxiety, and health problems caregivers experience due to inadequate support. Qiping Fan spearheaded the research, analyzing caregivers' financial, legal, and functional challenges.

For the research, 30 caregivers, predominantly over 50, white, non-Hispanic, and holding at least a bachelor's degree, were interviewed about their caregiving challenges and needs. Common challenges reported were balancing work and family responsibilities, managing finances, finding trustworthy services, navigating legal processes, and accessing emotional health resources. 

The study also stressed the importance of considering the interconnected dynamics within families when making care decisions. Feedback from the study will play an integral role in developing a specialized digital platform to support caregivers.

Ory commended the collaborative effort, attributing its success to the Aggie community's collective creativity. Logan DuBose, a principal at, expressed optimism for the future, anticipating the tailored resources and interventions to which the study's insights could lead.

Caregiving is Hard - Professional Care is Expensive

Family caregivers play an invaluable role in supporting loved ones, especially when that individual has a complex condition like dementia. While rewarding, this role comes with its own set of challenges as they attempt to balance caregiving duties and their personal and professional responsibilities. 

Many caregivers find themselves sandwiched between raising their own children, managing their careers, and providing full-time care to an ailing family member. This juggling act can become immensely stressful, often leading to caregiver burnout, a condition characterized by overwhelming fatigue, anxiety, and even depression.

Dementia caregiving is notably demanding due to the progressive nature of the disease. As dementia advances, the person affected becomes more dependent, requiring constant supervision and assistance with daily activities. This can mean round-the-clock care, which becomes mentally, emotionally, and physically taxing for the caregiver. 

The constant need to be vigilant and the emotional pain of seeing a loved one deteriorate mentally make this caregiving incredibly challenging. Siblings often find themselves at odds on whose responsibility caregiving will fall to, and often, one sibling is left with most of the responsibility, adding to tremendous resentment. 

Professional Care Costs Rising

While professional caregiving services provide a potential respite and can share the load, they come with their own set of challenges—cost being primary among them. Hiring a professional caregiver or placing a loved one in a dedicated care facility is a significant financial burden. Over the past few years, these costs have been on a steady incline, making it increasingly difficult for many families to afford. Many are left in a situation where they have to make difficult choices, weighing the need for professional help against their financial realities.

Long-term care costs vary depending on where you live.

Furthermore, the rising costs of professional caregiving services are reflective of the growing demand and the complexities involved in dementia care. With an aging population and increasing dementia diagnoses, there's a greater need than ever for specialized caregiving services. 

While these services offer relief to family caregivers, their soaring costs emphasize the need for advance planning. It is too late for older adults already needing care; however, for those in their 40s and 50s, it is the ideal time to consider Long-Term Care Insurance. 

Good health is the primary consideration, so those in their 60s and sometimes even in their 70s can find coverage. Seek a professional Long-Term Care Insurance specialist to help find affordable coverage based on your age, health, and other factors. 

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About the Author

Linda is a freelance writer interested in retirement planning, health and aging.

LTC News Contributor Linda Kople

Linda Kople

Contributor since October 31st, 2017

Editor's Note

As we journey through life, aging is an inevitable phase. With it come potential health issues, unforeseen medical challenges, and the general vulnerabilities of growing older. Long-Term Care Insurance stands as a beacon, offering tax-free resources to cover expenses for home health care, adult day care, assisted living, and nursing homes—expenses typically not covered by standard health insurance or Medicare. It's worth noting that Medicaid steps in primarily when one's finances are nearly depleted, so for many people, that is not an option and something to avoid. Therefore, integrating Long-Term Care Insurance into retirement strategies is a prudent decision.

Without Long-Term Care Insurance, the financial drain of long-term care expenses could seriously impact your retirement savings and monthly income. Beyond the monetary aspect, LTC Insurance offers a priceless sense of security. It helps mitigate the emotional and practical challenges that might otherwise fall on your family's shoulders. 

Seeing a family member grapple with the aftermath of a medical event like a stroke is heart-wrenching. The responsibility of caregiving or managing their care adds another layer of stress. In essence, an LTC policy serves not just as a financial safeguard but also as a means to ease potential burdens for both the individual and their family.

Consult an Expert: An Independent Long-Term Care Insurance Specialist

Insurance providers utilize specific underwriting criteria to assess eligibility. Your present health status is pivotal in determining if you qualify for coverage. An adept independent Long-Term Care Insurance specialist possesses knowledge of these criteria and can align your age, health, and other considerations with the insurer that offers optimal coverage at the most economical rate.

Keep in mind premium rates can differ significantly among insurance providers. An independent LTC Insurance specialist will shop all the top-tier insurance companies to deliver precise quotes from every leading insurer offering long-term care solutions.

LTC specialists have specialized training to tailor your policy so you only purchase the benefits essential to your needs. Given that premiums are based on factors like your age, health, family history, and the extent of your policy benefits, a specialist can offer substantial savings. Top specialists represent the top-rated companies, so it makes the process of getting accurate quotes much easier. 

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You probably have seen some of the resources and articles available on LTC NEWS. In addition to our many articles about aging, caregiving, health, lifestyle, long-term care, and retirement planning, we have many tools and resources to help educate yourself on long-term care planning.

Older Family Members Deserve a Better Quality of Life - So Do You

Quality care means a better quality of life when you or a loved one needs long-term care. If a loved one needs care now and has a Long-Term Care Insurance policy we can help. LTC NEWS has combined efforts with Amada Senior Care, a leading in-home health care agency with locations throughout the country, to help you process a claim from any LTC Insurance policy.

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