Study Highlights Caregivers' Struggles with Dementia
![The number of people with dementia and other aging issues is growing, which can add stress and burden to family caregivers who are often untrained and unprepared for the job. New research findings will help design a new national digital platform supporting caregivers.](https://d2fgwbymbvlegs.cloudfront.net/articles/study-highlights-caregivers-struggles-with-dementia/cover-medium.jpg)
A Texas A&M University School of Public Health study in collaboration with Olera.care, 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 Olera.care, 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.