Unique Challenges for Latino Family Caregivers in Dementia Care: Key Insights from a Recent Study

As the population ages, family caregiving for individuals with dementia has become an increasingly critical aspect of elder care planning. For Latino families, this role often comes with unique cultural, linguistic, and systemic barriers that can exacerbate the already demanding responsibilities. A new study published in October 2025 in the Journal of the American Geriatrics Society sheds light on these issues, highlighting the experiences of Latino caregivers in New York City. This research is particularly relevant for those involved in aging in place planning and elder law, as it underscores the need for tailored support systems to help families navigate dementia care while maintaining independence at home.

Overview of the StudyThe study involved in-depth interviews with 19 Latino family caregivers supporting loved ones with moderate to advanced dementia. Conducted between June and November 2024, the research focused on caregivers in New York City, where a diverse Latino population resides. Key demographics included:

• Care Recipients: Average age of 88.5 years, with 94.7% born outside the United States.
• Caregivers: Average age of 64.7 years, predominantly female (78.9%), reflecting common gender dynamics in caregiving roles.

Interviews were conducted in Spanish (26%) or Spanglish, ensuring cultural and linguistic sensitivity. Researchers identified two primary themes driving the challenges faced by these caregivers:

• Caregiving and Understanding of Dementia Shaped by Individual, Family, and Social Factors (Theme 1):
  This theme explores how personal knowledge, family dynamics, and cultural perspectives influence caregiving. Subthemes include:

• Caregiver's Own Understanding of Dementia: Many caregivers reported limited prior knowledge, leading to feelings of unpreparedness.
• Lack of Support from Family Members: Unequal distribution of responsibilities was common, with one participant noting, “In our culture, we [the women] are the caretakers,” highlighting gender-based expectations.
• Latino Cultural Perspectives on Dementia: Stigma plays a significant role, as dementia is often equated with being “crazy” in Spanish-speaking communities, deterring families from seeking help and perpetuating isolation.
• Navigating Formal Services Amid Gaps in Cultural Alignment and Support (Theme 2):
  This theme addresses interactions with healthcare systems and external resources. Subthemes include:

• Trial and Error in Care Management: Caregivers often learned through mistakes due to inadequate guidance.
• Education and Resources Gap: Participants received little to no dementia-specific education from healthcare providers, leaving them feeling isolated.
• Cultural Tension with Healthcare: Miscommunications arose from language barriers, such as misinterpretations of Spanish idioms or the provision of complex, non-Spanish resources. However, positive experiences occurred when providers spoke Spanish or shared cultural backgrounds.

The study's authors concluded that Latino family caregivers of persons living with dementia (PLWD) often lack support from family, community, and healthcare teams. They emphasized the isolation and unpreparedness caregivers felt, calling for improved communication in appointments, culturally centered educational resources, and empowerment for caregivers to voice their needs. Implications for Aging in PlaceAging in place, the preference to remain in one's home and community as one grows older, is a cornerstone of many elder care plans, especially within Latino families, where multigenerational living and family-centered care are cultural norms. However, this study reveals how cultural stigmas and systemic gaps can hinder effective home-based dementia management. For instance, the stigma associating dementia with mental instability may delay diagnosis and intervention, increasing the risk of crises that could force institutionalization.
From an elder law perspective, these findings highlight opportunities for legal advocacy. Attorneys specializing in elder law can assist families in accessing resources like Medicaid waivers for home care services, advance directives that incorporate cultural preferences, or informal guardianship arrangements that respect family dynamics. Additionally, promoting awareness of programs like the Family Caregiver Support Program under the Older Americans Act could provide respite care, counseling, and training specifically tailored to Latino communities.
To support aging in place, recommendations based on the study include:

• Culturally Sensitive Education: Develop bilingual resources that address dementia stigma and use simple, idiom-aware language.
• Healthcare System Reforms: Train providers in cultural competency and ensure Spanish-speaking staff are available during appointments.
• Community Support Networks: Encourage family involvement through workshops that challenge gender imbalances and foster shared responsibilities.

Moving Forward: Empowering Latino CaregiversThis research serves as a call to action for policymakers, healthcare providers, and elder law professionals to bridge the gaps identified. By fostering culturally aligned support, we can help Latino families sustain aging in place while reducing caregiver burnout. For those planning for the future, consulting an elder law attorney early can ensure legal protections are in place, allowing families to focus on compassionate care rather than navigating barriers alone.
If you're a caregiver or planning for a loved one with dementia, consider reaching out to local resources like the Alzheimer's Association's Spanish-language helpline or community health centers for personalized guidance. Studies like this remind us that effective elder care is not just medical, it's deeply cultural and communal.

Aging in Place: Multigenerational Living as a Strategy to Avoid Institutional Care and Support Family Caregiving

As the U.S. population ages, the desire to age in place—remaining in one’s home and community as one grows older—has become a priority for many older adults. According to a recent AARP survey, 77% of adults aged 50 and older want to stay in their homes for the long term, a trend unchanged for over a decade. However, rising healthcare costs, limited long-term care options, and the financial burden of institutional care (e.g., nursing homes costing over $100,000 annually) pose significant challenges.

A growing solution to these issues is multigenerational living, where families pool resources to care for aging loved ones at home. A recent article from National Mortgage Professional highlights this trend, noting that 17% of homebuyers in 2024 purchased multigenerational homes to reduce costs, care for aging parents, or accommodate adult children. This article explores how multigenerational living supports aging in place, aligns with elder law strategies to avoid institutional care spend-down, and strengthens family caregiving, with insights for Ohio residents.

Multigenerational Living: A Practical Solution for Aging in Place

The National Mortgage Professional article underscores a shift in homebuying trends, driven by economic and caregiving needs. According to the National Association of Realtors’ 2025 Profile of Home Buyers and Sellers, 36% of multigenerational buyers cited cost savings as their top reason, followed by caregiving for aging parents (25%) and supporting adult children (21%). Generation X buyers (36%) and Millennials (28%) are leading this trend, with some Gen Z buyers (44%) motivated by financial support. These homes often include features like mother-in-law suites or accessory dwelling units (ADUs), designed with grab bars, slip-resistant flooring, and zero-step entries to support seniors’ mobility needs.

Multigenerational living aligns with aging in place by allowing older adults to remain in a familiar environment while receiving care from family members. This setup contrasts with institutional care, which can deplete savings and disrupt emotional well-being. For example, the KFF Health News reports that 9 in 10 people find it “impossible or very difficult” to afford nursing home costs without Medicaid, and assisted living facilities average $54,000 annually. By sharing housing costs, families can redirect funds to home modifications (e.g., wider doorways, first-floor bedrooms) or in-home care services, enhancing safety and independence.

Elder Law Strategies: Avoiding Institutional Care Spend-Down

In elder law, a key goal is to avoid asset spend down, where seniors exhaust their assets in order to qualify for Medicaid, which covers long-term care but often requires institutional settings. Multigenerational living offers a financial and legal strategy to preserve assets while meeting care needs. By pooling resources, and aging in place, families can:

• Reduce Housing Costs: The Veterans United survey notes that multigenerational homes help families afford larger properties, lowering per-person expenses compared to separate households or senior living facilities.

• Delay or Avoid Medicaid Eligibility: Keeping seniors at home with family care reduces reliance on costly institutional care, preserving savings and assets for inheritance or other needs.

• Leverage Medicaid Home and Community-Based Services (HCBS): Ohio’s Medicaid program offers HCBS waivers, such as the PASSPORT program, which funds in-home care services (e.g., personal care aides, meal delivery) for eligible seniors, supporting aging in place without institutionalization.

• Eliminate the Inherent risks of Institutional Care: Institutional care comes with some profound inherent risks, such as medical and non-medical mistakes, security risks, infection risks, and guardianship risks, most of which can be eliminated or reduced by aging in place (for a discussion regarding these risks, attend an Aging in Place Planning Workshop).

These strategies are not, however, without complications or risks.  Families should fully consider title, security, and ultimate disposition issues carefully before reflexively doing what comes naturally; how these issues are confronted and resolved have tax and legal implications for all concerned.  Effective elder law, financial and health care planning is critical to maximize these benefits. Families should:

• Consult an Elder Law Attorney: An attorney can structure assets (e.g., through trusts) to protect them from Medicaid spend-down while ensuring eligibility for HCBS.

• Consult a Financial Planner/Insurance Specialist: Effective financial  and insurance planning can help assure that you are maximizing your financial resources to age in place, and provide opportunities for alternative to institutional care or spend down at a time of need (e.g., long-term care insurance, short term disability insurance, home health care policies, or Advantage Plans with robust aging in place benefits such as "hospital at home").

• Draft Powers of Attorney and Healthcare Directives: These documents ensure fiduciaries can manage financial assets, and make health care decisions minimizing the risk of the legal system intruding into what otherwise a family might consider private decisions.

• Plan for Care Costs: The Center for American Progress notes that unpaid family caregiving, common in multigenerational homes, saves families from hiring professional caregivers, but supplemental HCBS can bridge gaps when needs escalate.

Family Caregiving: Benefits and Challenges in Multigenerational Homes

Family caregiving is the backbone of multigenerational living, with 63% of older adults receiving care from family, often in their 20s to 40s. The National Mortgage Professional article emphasizes caregiving as a key motivator for multigenerational buyers, particularly for aging parents. Benefits include:

• Emotional and Social Support: The Institute on Aging highlights that multigenerational homes reduce isolation, a major health risk for seniors, by fostering daily interactions and shared activities like cooking or storytelling.

• Cost-Effective Care: Family caregivers provide unpaid care, saving thousands compared to professional services. The AARP reports that 1 in 5 Americans is a family caregiver, with 40% caring for someone in their home.

• Flexible Care Arrangements: ADUs allow caregivers to monitor seniors closely while maintaining privacy, supporting both independence and safety.

• Preferred Treatment or Protection of Assets: One key Medicaid provision that highlights these benefits is the two-year live-in child caregiver exemption for home transfers, which allows certain family caregivers to receive the home of a Medicaid applicant without triggering penalties or asset recovery.

However, caregiving can strain families, especially women, who face a median wage loss of $24,500 over two years when providing intensive care. Challenges include:

• Emotional and Physical Toll: Caregiver.com notes that caregivers often experience fatigue, irritability, and lack of personal time, particularly in multigenerational households with multiple care recipients (e.g., grandparents and grandchildren).

• Role Negotiation: Families must define responsibilities, as some members may prefer hands-on care while others focus on chores or finances.

• Conflict Risks: Lifestyle differences (e.g., noise levels, guest policies) can spark disputes, requiring open communication.

To address these challenges, families can:

• Involve Capable Children and Grandchildren: Young family members can assist with light tasks (e.g., reading to grandparents), fostering bonds and easing caregiver burdens.

• Seek Respite Care: Ohio’s Area Agencies on Aging offer respite services, allowing caregivers temporary relief.

• Use Technology: Technology can provide surprising solutions and necessary relief for caregiving burdens when employed properly.  More, use of technology can actually support cognitive health, and slow cognitive decline.

Practical Tips for Families

Assess Home Suitability: Use the National Institute on Aging’s Home Safety Checklist to identify modifications (e.g., stair railings, better lighting) for aging in place (make only necessary modifications to avoid unnecessary expenditures depleting funds for what may be alternate future needs).

Discuss Expectations: Hold a family meeting to clarify caregiving roles, financial contributions, and lifestyle preferences.

Incorporate Technology: Use technology where appropriate, and protect its availability and access by completing a Digital Asset Inventory, ensuring fiduciaries can act swiftly as needs arise.

Explore Housing Options: Consider ADUs or multigenerational homes with accessible features, as 59% of caregivers in the AARP survey value such designs.

Seek Legal Guidance: An Ohio elder law attorney can tailor plans to leverage HCBS, protect assets, and age in place.

Conclusion

Multigenerational living is a powerful strategy for aging in place, offering financial savings, emotional support, and caregiving flexibility. By reducing reliance on institutional care, families can avoid spend-down and preserve assets, aligning with elder law goals. However, success requires planning. In Ohio, leveraging programs like PASSPORT makes sense. As the National Mortgage Professional article shows, multigenerational homes are more than a trend—they’re a meaningful solution for families navigating the challenges of aging.

For some insight into the laws, rules and regulations governing ADU's in Ohio, go here and here.

CMA Brief Outlines Medicare Failure to Provide Home Health Care and Support Family Caregivers

Among the greatest achievements of the Trump Administration is embracing aging in place and home care for seniors under Medicare.  The federal bureaucracy has likewise, taken steps toward Aging in Place and home care for seniors, and these steps might be considered bold if one firmly believes that the first step in solving a problem is acknowledging its existence. The Center for Medicare Advocacy (CMA) recently released an issue brief on Medicare and Family Caregivers that makes acknowledgment of the problem, and suggested solutions easier. 

The Brief "examines the role Medicare currently plays, and could play, in assisting beneficiaries and their family caregivers,"  covers Medicare law, the need for coverage, issues with receiving Medicare home health care services, problems with access to coverage, the limited number of aides, and more. The Brief also discusses Medicare Advantage and in-home services.

The Brief acknowledges that Medicare has a problem:

"As the population ages, and lives longer with chronic conditions, the need for family caregiving, and support for caregivers, is increasing. Concurrently, however, access to Medicare-covered home health aide care continues to decline. This is often true even for individuals who meet the Medicare law’s qualifying criteria. Unfortunately, Medicare beneficiaries are often given inaccurate information regarding Medicare home health coverage in general, and home health aides in particular. Sometimes they are told Medicare simply does not cover home health aides. Harmful misinformation abounds. Further compounding this problem, Medicare does not provide coverage for family caregivers. Coverage is only available for personal care through home health aides, provided through a Medicare-certified home health agency; the individual must have an authorized practitioner’s order, be homebound, and need nursing or physical or speech therapy (citations omitted, emphasis added)."

The Brief then outlines the daunting financial burdens facing Medicare recipients who desire to Age in Place or receive care in-home:

Privately paying for in-home care/aides can cost around $3,000 per month, unaffordable for most Medicare beneficiaries. Basic facts about the Medicare population tell us why. Half of all Medicare beneficiaries live on annual incomes less than $29,650; 25% live on annual incomes below 2 $17,000; 50% have savings less than $73,800; 10% have no saving or are in debt. Data also shows that beneficiaries of advanced age and younger beneficiaries with disabilities have yet lower incomes: Among people ages 65 and older, median per capita income declined steadily with age, dropping from $35,200 between ages 65 to 74 to $22,750 at ages 85 and older. Across the entire Medicare population, median per capita income was considerably lower for beneficiaries under age 65 with permanent disabilities ($19,550) than among seniors. In 2018, about one in seven (15%) of Medicare beneficiaries were under age 65 and generally eligible for Medicare due to a long-term disability. Median income for individuals ages 65 and older was $31,450 per person in 2019, while one in four beneficiaries ages 65 and older had incomes below $18,150. Thus, out-of-pocket health costs, including for in-home care, often pose an access barrier, particularly for beneficiaries in fair or poor health. When Medicare coverage is unavailable or unfairly denied, beneficiaries are often unable to afford the home care they need. This places additional, avoidable stress on the beneficiary, family, and family caregivers. Unable to live safely in the community, it may also lead to preventable health complications, injuries, hospitalizations, and nursing home admissions (citations omitted, emphasis added).

CMA, therefore, made a series of recommendations: 

"1. Ensure the scope of current allowable home health benefits, generally, and home health aides, specifically, are actually provided. Simply put, ensure that current law is followed;

2. Create a new stand-alone home health aide benefit that would provide coverage without the current skilled care or homebound requirements, using Medicare’s existing infrastructure as the vehicle for the new coverage; and

3. Identify other opportunities for further exploration within and without the Medicare program, including additional Medicare revisions, demonstrations, and initiatives overseen by the Center for Medicare and Medicaid Innovation (CMMI)."

After providing some actual examples, the Brief provides insights into other additions to Medicare that would provide more services to beneficiaries.  The conclusion  provides that:

 "Medicare home health coverage is not being implemented to the full extent of the law. If it were, countless beneficiaries and families would be better off. Nonetheless, at best, the current Medicare benefit leaves far too many patients and caregivers behind. In order to provide quality home-based care for individuals, and support for their caregivers, significant changes are needed to the Medicare program and the broader health insurance system." 

The Brief is part of collaborative work to advance the RAISE Family Caregivers Act passed in 2018.  The RAISE Act directs the Department of Health and Human Services to develop and maintain a national family caregiver strategy that identifies actions and support for family caregivers in the United States. CMA's issue brief explores the role Medicare does, and could, play in supporting older and disabled beneficiaries and their caregivers. The issue brief was written with support from The John A. Hartford Foundation.

COVID-19: Caregiver Action Network Tips for Family Caregivers

If you are an in-home caregiver the rapid spread of COVID-19 has and will continue to affect how you do your job. The Caregiver Action Network (CAN) has posted some Tips for Family Caregivers.  CAN continues to recommend following the guidance of the CDC.

Tips include:

• Finding support through support groups, churches or community centers;
• Refilling prescriptions and making sure you are fulling stocked on medical supplies;
• Only going to the Emergency Room for emergencies;
• Knowing your own risk factors – chronic conditions or immunosuppressed;
• Being aware of any changes to visitation policies;
• Calling ahead before going to any medical appointments; and
• Preparing for possible quarantine.

CAN also offers several useful resources:

• Crisis Symptom Reporting Guide;
• Medication Checklist; and a
• Patient File Checklist.

CAN is a leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age. It is a nonprofit organization providing education, peer support and resources to family caregivers across the country free of charge.