A family discussing financial plans for elder care.

The Unexpected Costs of Care: How to Protect Your Loved Ones (and Your Finances)

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Samir D’Costa in Health & Wellness June 2025 • 4 min read.

"Navigating the financial challenges of progressive neurological diseases like Alzheimer's doesn't have to be overwhelming. Arm yourself with expert advice to safeguard your family's future."


Receiving a diagnosis of Alzheimer's disease or another progressive neurological disorder can bring emotional challenges, and the financial implications can be just as significant. Many express a desire for financial guidance alongside the medical diagnosis, wishing they had understood the potential expenses of long-term care and strategies to protect their assets.

Estate planner Fiona Van Dyck emphasizes that early planning is crucial. Delaying or avoiding these discussions can limit available options. The longer you wait, the fewer options you have to protect your family and assets.

The cost of caring for someone with advanced Parkinson's disease, multiple sclerosis, or Alzheimer's can range from $6,000 a month for residential care to over $20,000 in urban areas. Attorney Bernie A. Krooks points out that families are often unprepared for these costs, either because they don't anticipate the need or overestimate Medicare's coverage, leading to shock when faced with the financial realities.

Understanding the True Cost of Neurological Care: What to Expect

A family discussing financial plans for elder care.

Alzheimer's disease presents unique financial challenges compared to other conditions. Many costs for people with dementia are not covered by insurance. People with dementia may require assistance with daily activities like feeding and dressing, unlike someone with a heart condition. The Mount Sinai study highlights that out-of-pocket costs are high regardless of insurance type, covering premiums, copays, deductibles, and uncovered services.

For those with Alzheimer's disease, the financial impact can be particularly significant. Healthcare costs for individuals 65 and older with Alzheimer's or other dementias are three times higher ($49,126 versus $15,550) than for Medicare beneficiaries without dementia, according to a 2016 report by the Alzheimer's Association. The Alzheimer's Association reported average out-of-pocket costs for a person with dementia were $10,495 a year. The highest out-of-pocket costs—$20,207, on average, per year were for people in assisted living or other residential care settings, and they were about six times greater than for people still at home or otherwise living in their communities.

  • Unpaid Caregiver Burden: Family members often provide unpaid care, leading to lost wages, reduced work hours, and career stagnation. The emotional and physical toll on caregivers can also translate to increased healthcare costs for themselves.
  • Home Modifications: Adapting a home to accommodate mobility limitations or safety concerns can be expensive. Ramps, widened doorways, bathroom modifications, and specialized equipment add to the financial strain.
  • Specialized Medical Equipment: Depending on the specific neurological condition, individuals may require specialized equipment such as wheelchairs, walkers, hospital beds, or communication devices. These items can be costly and may not be fully covered by insurance.
  • Transportation Costs: Frequent medical appointments, therapy sessions, and social activities can lead to significant transportation expenses, especially if specialized transportation services are required.
The financial hardship is even more pronounced for women and minorities. Latinos, the nation's fastest-growing ethnic group, are projected to have 3.5 million individuals living with Alzheimer's by 2060. This community often faces lower incomes and fewer resources to manage these costs. A higher percentage of Latinos care for older adults with dementia while balancing childcare responsibilities.

Planning for the Future: Resources and Support

Navigating the financial aspects of neurological care requires proactive planning and informed decision-making. By understanding potential costs, exploring available resources, and seeking professional guidance, families can protect their loved ones and their financial well-being throughout the caregiving journey.

Everything You Need To Know

1

What are progressive neurological diseases, and why is it important to understand their financial implications?

Progressive neurological diseases, such as Alzheimer's disease, Parkinson's disease and multiple sclerosis, lead to a gradual decline in cognitive and physical functions, creating an increasing need for care. The significance lies in understanding that these conditions often require long-term care, which can be incredibly expensive, potentially impacting a family's financial stability. This is further complicated because the expenses may include assisted living, specialized medical equipment, and home modifications, straining resources and requiring careful planning.

2

Why is early financial planning so important when someone is diagnosed with a progressive neurological condition?

Early financial planning, particularly when dealing with progressive neurological conditions, involves anticipating future care needs and costs, assessing available resources, and making informed decisions about how to manage expenses. It is important because it allows families to explore options like long-term care insurance, asset protection strategies, and government assistance programs before the need becomes urgent. Without early planning, families may face limited options and increased financial strain as the disease progresses.

3

What role does Medicare play in covering the costs of care for progressive neurological diseases?

Medicare is a federal health insurance program primarily for people aged 65 and older and certain younger people with disabilities. Its role in covering the costs associated with progressive neurological diseases is often overestimated by families. While Medicare covers some medical expenses, it typically doesn't cover long-term care services, such as assisted living or in-home care, which are often required for individuals with conditions like Alzheimer's disease. This limitation can lead to significant out-of-pocket expenses for families.

4

What is 'unpaid caregiving,' and why is it a significant burden in the context of progressive neurological diseases?

Unpaid caregiving refers to the support provided by family members or friends to individuals with progressive neurological diseases without receiving direct financial compensation. It's a significant burden because it often results in lost wages, reduced work hours, and career stagnation for the caregiver. Additionally, the emotional and physical toll of caregiving can lead to increased healthcare costs for the caregivers themselves, further straining the family's financial resources. Addressing this burden may involve seeking respite care or support services to alleviate caregiver stress and financial strain.

5

How does the projected increase in Alzheimer's among Latinos impact their financial well-being and caregiving responsibilities?

The Latino community is projected to experience a significant increase in the number of individuals living with Alzheimer's disease by 2060. This projection is particularly concerning because this community often faces socioeconomic challenges, such as lower incomes and limited access to resources, making it more difficult to manage the financial burdens of neurological care. Furthermore, a higher percentage of Latinos may be balancing caregiving responsibilities with childcare, intensifying the financial strain on these families. Culturally sensitive resources and support are needed to address these disparities.

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