The Hidden Burden: The Journey of Caregiving for Loved Ones with Alzheimer's

Caregiving for someone with Alzheimer's is a profoundly challenging journey, marked by emotional and physical strains, as caregivers navigate the complexities of the disease. The responsibility often brings significant burdens, including financial stress and the emotional toll of watching a loved one's cognitive decline.

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The Hidden Burden: The Journey of Caregiving for Loved Ones with Alzheimer's
5 Min Read December 13th, 2023

The role of a caregiver for someone with Alzheimer's or another form of dementia is often a labor of love, but it comes with significant physical, emotional, and financial challenges. When families fail to plan for long-term care, these burdens can become overwhelming, affecting the well-being of both the patient and the caregiver.

Physically, family caregivers often experience exhaustion due to the constant demands of caregiving, which can include managing medications, providing daily care, and addressing safety concerns. Emotionally, watching a loved one's mental faculties decline is heart-wrenching. 

Caregivers commonly face feelings of grief, stress, and isolation.

Financially, the impact can be just as profound. According to the LTC NEWS Cost of Care Calculator, the cost of long-term care services is rising steadily. Families without advance planning often struggle to cover these expenses, which can deplete savings rapidly, impacting not just the lifestyle but also the legacy left behind. Often, family members must take time off work to provide care at least part-time, if not full-time. 

Loved One's Lives Change

Matt, whose story was shared by the Alzheimer's Foundation of America, experienced this firsthand. He grew up admiring his father, a Vietnam veteran and community leader. 

Matt recalls that after his father's Alzheimer's diagnosis, Matt and his brother struggled to provide the necessary care, eventually resorting to 24-hour professional care.

I was always in awe of my father, John, a man that served our country in Vietnam and then his family and community for decades. However, once we lost my mother, he deteriorated quickly. The man I looked up to my whole life, the strongest person I knew, was no longer present.

The financial impact on Matt's family was significant, as is often true for families without a long-term care plan. The spouse or family members may need to adjust their lifestyle or dip into retirement savings to cover the costs of care, which can amount to thousands of dollars monthly.

Matt's father passed away in May 2020, leaving Matt with a mission to ensure that no one else feels as lost and helpless as he did. His journey led him to the Alzheimer's Foundation of America, where he advocates for better support and resources for those affected by this disease.

This story underscores the importance of early planning for long-term care. Advance preparation can alleviate some of the stresses associated with caregiving, preserving the caregiver's health, financial stability, and the ability to provide quality care for their loved one.

The Story Could Be Different

The story could have been different if Matt's father had Long-Term Care Insurance. Alzheimer's, a common reason why many need long-term care, particularly as they age, places a heavy burden on families both emotionally and financially. A Long-Term Care Insurance policy could have significantly eased the strain on Matt and his family.

Long-Term Care Insurance covers the costs of care that are not typically covered by traditional health insurance, Medicare, or Medicaid. This includes the type of daily personal care that Alzheimer's patients often require. Had Matt's father been covered by such an LTC policy, it could have provided the necessary funds to pay for professional care, whether in-home assistance, adult day care, or even a stay in a memory care facility. This would have lifted the heavy burden from Matt and his brother, allowing them to focus more on spending quality time with their father and less on being caregivers or finding ways to finance his care.

Moreover, the emotional toll on families is often as significant as the financial one. The stress of caregiving, coupled with worrying about the cost of care, can be overwhelming. An LTC policy helps to alleviate these stresses by ensuring that quality professional care is readily available without the added worry of depleting savings or assets.

More Women Impacted - But Men Catching Up

Alzheimer's disease disproportionately affects women, both as patients and as caregivers. Statistically, women are more likely to develop Alzheimer's compared to men, with studies indicating that almost two-thirds of Americans living with Alzheimer's are women. 

The reasons for this disparity are not entirely clear but are believed to be linked to a combination of biological, genetic, and possibly lifestyle factors. Beyond being more prone to the disease, women also bear the brunt of caregiving responsibilities for family members with Alzheimer's. 

A new study from Cleveland Clinic sheds some light on why that is. According to Jessica Caldwell, PhD, neuropsychologist for Cleveland Clinic, they found that certain sex differences could play a role. 

Jessica Caldwell

This study was designed to better understand the sex differences in Alzheimer's disease, and specifically we looked at whether or not the immune system and cell metabolism actually interact in different ways in men and women.

Researchers ultimately discovered that there is a difference. Dr. Caldwell says that it shows how Alzheimer's disease goes beyond the brain; there is a connection between gut health and inflammation. Since those things can be measured earlier in life, physicians could detect who is at risk for the disease much sooner. 

Currently, Alzheimer's can't be diagnosed until a person has symptoms. 

This dual role for women significantly impacts their emotional well-being, career trajectories, and financial stability. The heightened risk and increased caregiving burden underscore the need for targeted support and resources for women in the context of Alzheimer's disease.

Increasing Number of Men Being Impacted by Memory Loss

However, more men are now being diagnosed with Alzheimer's and related dementia. According to a 2023 report by the Alzheimer's Association, the prevalence of Alzheimer's disease among men aged 65 and older is projected to rise by 32.6% between 2020 and 2040, compared to a 26.9% increase for women. This means that by 2040, nearly 3.3 million men in the United States will be living with Alzheimer's disease, a significant increase from the 2.5 million in 2020. 

This trend is likely fueled by a combination of factors, including an aging population, increased awareness and diagnosis of the disease, and potential risk factors specific to men, such as cardiovascular disease and sleep apnea.

Planning is Essential

Planning for long-term care is an essential component of a comprehensive retirement strategy. It's not just about the financial aspects; it's also about considering the impact on family members. Most people opt for Long-Term Care Insurance in their 40s or 50s when premiums are more affordable. However, affordable options are available for those in their 60s and beyond, provided they are in good health. 

Indeed, reasonably good health is a prerequisite for obtaining an LTC policy, highlighting the importance of planning now before health issues arise. Every insurance company has its own underwriting rules, but poor health will make it hard, if not impossible, to obtain coverage.

An experienced Long-Term Care Insurance specialist who represents the top-rated insurance companies offering these products will help you navigate the options based on your age, health, and even family history.

Unfortunately, too many people think something will never happen to them. Yet, our health, body, and mind will decline with age. The decline we experience with longevity often results in needing help with everyday living activities or supervision due to dementia. 

Delaying will not benefit you, your family, or your assets. Aging is a reality, and the consequences of dementia and other aging issues that result in long-term care can dramatically change the lives of those you love. The ideal time to consider planning is when you are in your 40s or 50s, but those in their 60s and beyond can find affordable options if their health allows. 

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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

Planning for potential future needs is crucial as you embark on the journey towards retirement. While securing your financial well-being is paramount, safeguarding your independence and quality of life is equally important. This is where Long-Term Care Insurance emerges as a vital element of a comprehensive retirement plan.

Protecting Your Assets and Savings

Long-term care can be expensive, with the average annual cost exceeding $100,000 for a private nursing home. These costs can quickly deplete your carefully saved retirement funds and assets, leaving you financially vulnerable and potentially impacting your loved ones. Long-Term Care Insurance helps alleviate this financial burden by providing coverage for a range of long-term care services, including assisted living, home care, and skilled nursing care. This ensures your assets and savings remain protected, allowing you to enjoy financial security and peace of mind throughout your golden years.

Ensuring Access to Quality Care

With Long-Term Care Insurance, you have the freedom to choose the type and setting of care that best suits your needs and preferences. Whether you prefer the comfort of your own home or a specialized care facility, an LTC policy can help cover the costs associated with these choices. This empowers you to maintain control over your life and receive the quality care you deserve, promoting dignity and independence as you age.

Reducing Family Burden

Caring for a loved one with long-term care needs can be physically, emotionally, and financially taxing for families. Long-Term Care Insurance can ease this burden by providing financial resources to cover the cost of care. This allows your family members to focus on offering emotional support and companionship instead of being burdened by financial anxieties.

Peace of Mind and Security

Planning proactively for potential long-term care needs offers invaluable peace of mind. Knowing that you have a financial plan in place to cover potential long-term care costs allows you to relax and enjoy your retirement without financial concerns. This sense of security and protection fosters greater well-being. It will enable you to focus on living life to the fullest in your later years.

Obtaining Long-Term Care Insurance is a wise decision that ensures you have the resources and support needed to maintain your independence and quality of life throughout your golden years. By protecting your assets, ensuring access to quality care, and offering your family peace of mind, Long-Term Care Insurance becomes a cornerstone of a comprehensive retirement plan, empowering you to enjoy a secure and fulfilling future.

The ideal time to add an LTC policy to your retirement plan is in your 40s or 50s, but depending on your health, you can find affordable options in your 60s and beyond.

Seek Professional Help

The best way to ensure you get the most comprehensive coverage at the lowest premium is by working with a qualified Long-Term Care Insurance specialist. Be sure the agent is a real specialist representing the top-rated insurance companies, not just one or two. Top specialists help 100 or more people annually, and not every insurance agent or financial advisor who claims to be a specialist is a specialist. 

An LTC Insurance specialist will ask numerous questions about your health, family history, and finances to match you with the right insurance company. Premiums and underwriting rules vary dramatically between insurance companies. The result is that a Long-Term Care Insurance specialist will provide accurate quotes from all the top insurance companies and offer professional recommendations for plan design. 

What if a Loved Ones Needs Care Now?

Loved ones deserve quality care, and LTC NEWS provides assistance for you and your family to ensure they get the care they need and deserve. A top resource is the LTC NEWS Caregiver Directory, which offers an extensive listing of all kinds of long-term care services available, regardless of where your loved one resides.

You can search from over 80,000 providers, including in-home caregivers, adult day care centers, assisted living facilities, memory care facilities, rehabilitation facilities, and nursing homes. Just enter the town or zip code, and you will see all the available options - - Long-Term Care Services Directory | Find Care Near You.

LTC NEWS, in partnership with Amada Senior Care, a nationally recognized in-home health care agency, ensures that you and your loved ones receive the quality care you deserve. 

 For those with an LTC policy, we also assist in processing claims from any Long-Term Care Insurance policy. This service, dedicated to Filing a Long-Term Care Insurance Claim, comes at no additional cost or obligation. 

 Even without an LTC policy, Amada stands ready to craft a personalized care plan and introduce a range of budget-friendly in-home care solutions. Discover more today - Explore Top-Tier In-Home Care Options.

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