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.

VA Initiates Family Caregiving Program

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Department of Veterans Affairs (VA) hospitals are undertaking a new effort focused on assuring family members and loved ones caring for veterans are included in treatment.  The practice is already implemented at some facilities, but wasn't before standard policy.

The initiative finds medical providers at a handful of VA centers across the country reaching out to veterans to determine whether they want their caregiver in the room during treatment. On paper, the caregiver would then be involved in the entire care process, including treatment planning with doctors.

The new effort, kicking off first in three VA regions, was spurred by the Elizabeth Dole Foundation, an advocacy group for the 5.5. million spouses, parents, family members and friends who take care of injured veterans at home.  Elizabeth Dole, a former Republican senator from North Carolina and secretary of labor and transportation issued a statement reading "They [caregivers] are the first line of defense against the worst of all possible outcomes — suicides.  These heroes provide care that is extensive, intimate and around the clock."

“It’s about including the caregiver as a true partner. We know the veteran in our clinics but we don’t know what’s happening the other 23 hours of the day,” Lisa Pape, deputy chief officer for patient care services at VA told Stars and Stripes. “That caregiver is experiencing that life journey. And they can fill in the pieces and paint the picture that we’re not able to see so we want to include them.”

Too many caregivers  find roadblocks while trying to accompany patients they care for during treatment or while trying to communicate with doctors. While there’s a trial period at a handful of hospitals in the northwest and Ohio, the VA hopes a full integration within two years.

The VA cites data from a 2009 National Alliance for Caregiving study that suggests one-quarter of caregivers have difficulty coordinating care with health care providers. That study did not consider exclusively VA patients.

VA Caregivers Support Line

As part of National Family Caregivers Month, we want to remind everyone that  VA's Caregiver Support Line assistance is just a quick phone call away. Whether you are in need of immediate assistance or have questions about what services you may be eligible for, the caring licensed social workers who answer the support line can:

• Provide you with information about assistance available from VA;
• Help you access services;
• Connect you with the Caregiver Support Coordinator at a VA Medical Center near you, or; 
• Just listen, if that's what you need right now.

If you're just getting started with VA, calling the Caregiver Support Line at 1-855-260-3274 is a great first step to learn more about the support that is available to you.

The VA Honors National Family Caregivers Month

While the VA honors and celebrates caregivers who selflessly provide care to ill, injured, or disabled Veterans, year-round, November is National Family Caregivers Month. The theme for 2019 is “#BeCareCurious.”

Many Veterans suffer from chronic conditions, disabilities, disease, or daily difficulties and benefit from having a caregiver. Because the need for caregivers is expected to increase, the Department of Veterans Affairs (VA) is ready to stand shoulder to shoulder with VA and community partners to meet their needs.

VA is leading the country in providing unprecedented benefits and services to caregivers in support of Veterans. The Caregiver Support Program has two programs, one of which is the Program of General Caregiver Support Services, for eligible Veterans of all eras. In addition, the VA is working with urgency to expand the Program of Comprehensive Assistance for Family Caregivers (PCAFC), of Veterans from all service eras. VA seeks to ensure the PCAFC meets the needs of those currently in the program and those it will serve as it expands.

The expansion will occur in two phases, beginning in the summer of 2020 or once the Secretary has certified that the new information technology (IT) system is fully implemented. In addition to IT being certified by the Secretary, final regulations must be published.

Concurrently, the Caregiver Support Program Office offers some fantastic projects, which include adopting new technology and increasing educational opportunities for caregivers, to enhance their experience. A few examples are:

• Annie Caregiver Text Support - Provides stress management tips via text messaging to caregivers;
• Caregiver Dementia Video Series - Development of three new caregiver videos;
• Suicide Prevention Toolkit - Educate caregivers of Veterans to know facts about suicide prevention and when to reach out for resources and help.

This November, during National Family Caregivers Month, VA encourages caregivers to take time to #BeCareCurious about their loved one's care. Caregivers are encouraged to ask questions, explore options and share in the care decisions that affect the health and well-being of their loved ones.

We join in honoring caregivers of Veterans and acknowledging their important role in the health and well-being of Veterans! Get involved by posting:

#VACaregivers

 on Twitter, Facebook, and VA Pulse!

Aging in Place- Postacute Care Payment Reform for Informal Caregivers

Health Affairs has published an excellent article describing the financial challenges imposed by the existing Medicare system for those planning to Age in Place, and making excellent suggestions for legislative changes to support Aging in Place.  Penned by Paula Chatterjee,  Allison K. Hoffman, and   Rachel M. Werner, the article describes in a few short paragraphs the financial challenges:

"In 2015, Medicare spent nearly $60 billion on institutional postacute care, an amount that has rapidly increased in recent years. In fact, nearly three-quarters of the geographic variation in total Medicare spending is driven by the variation in postacute care spending alone. Taken together, these patterns call into question the value of postacute care and especially its return on investment for patients.

Given its growing contribution to US health care costs, postacute care has become a common target for efforts to reduce costs under alternative payment models, such as bundled payments and accountable care organizations (ACOs). These models are increasingly holding hospitals responsible for the costs of care provided during the post-hospitalization period. Recent evaluations have found that cost savings achieved under alternative payment models are driven almost entirely by a decrease in the use of inpatient postacute care. This trend is largely the result of a compensatory increase in the number of patients who are being discharged directly home, and thus bypassing the postacute care setting altogether. 

The push to discharge more patients directly home after hospitalization may seem preferable in some circumstances. In addition to being financially sensible by decreasing spending on postacute care, patients might prefer to be discharged home rather than to an institutional setting. In this way, getting patients home may represent a rare opportunity to align goals across patients, payers, and health systems. However, these gains must be viewed in the context of the costs borne by those who care for patients once they are discharged home—informal caregivers. 

Informal Caregivers In The US 

An estimated 34.2 million US adults report serving as an informal caregiver, providing unpaid care to an adult age 50 or older in the prior year. The economic valuation of informal caregiving for older adults, based on hours spent caregiving, is estimated to be nearly $522 billion annually. However, this value likely underestimates the true cost of caregiving in that it does not account for the physical, emotional, economic, and health-associated burdens associated with these roles. Informal caregivers are more likely to take leave from a job, take out a loan or mortgage, spend savings; hold multiple jobs, or retire early; suffer harm to intimate relationships, family conflict, worsened health, decreased geographic mobility, and an inability to pursue life goals. These effects are more common among women; tend to be more severe among those with low educational attainment, depression, and social isolation; and can contribute to a cycle of household poverty. As a result, the potential spillover effects of payment policies designed to get patients home may cause particular harm to already vulnerable populations.

Do Existing Payment Policies Offer Support For Informal Caregivers? 

Payment policies designed to reduce institutional postacute care do little to support home-based care when patients are more quickly discharged than before. Medicare’s home health benefit provides limited home-based support, with at most one visit per day from a home health provider. Although Medicare Advantage expanded this benefit in 2019 to cover non-skilled needs such as help with daily activities, in the postacute period, when patients frequently need significant support in their activities of daily living, a once-daily visit is unlikely to alleviate caregiver burden. Other alternative payment models that encourage home-based care also do little to support home-based care. There have been a number of recent reforms that focus on improving support for caregivers. Various policies, such as the Caregiver Advise, Record, Enable (CARE) Act, have attempted to provide better supports for caregivers, but they fall short in addressing the true burden and insecurity caregivers face. 

How Could Payment Policies Be Changed?

Changes in payment policies could begin to address this burden. Strategies that directly fund informal caregivers who provide postacute care could begin to fill this gap. This approach is not untested. State Medicaid agencies pay for home-based custodial care for older adults who might otherwise need nursing home–based care, and in some states, family members can be the paid caregivers. Medicare policies could similarly support home-based informal caregivers in the postacute period. Bundled payments could redirect funds that were previously dedicated to institutional postacute care settings to compensate caregiving in home-based settings, including flexible funding to pay for caregiving, transportation, respite care, or compensation for a family caregiver.  

Alternative payment models could similarly incorporate innovative approaches to support informal caregivers. The Next Generation ACO model currently waives the direct supervision requirement for post-discharge home visits, in effect allowing payment for home visits by a licensed clinical staff member without a physician’s direct involvement. This waiver provides some flexibility to tailor home visits to meet patients’ needs and could be extended to include payments to informal caregivers who provide the bulk of daily care. Given their central tenet of care coordination, a logical next step could be for ACOs to incorporate informal caregivers into the care management team responsible for monitoring and treating patients and developing strategies for broader population health management. 

An alternative solution is to indirectly provide funding to informal caregivers through paid leave from work to care for family members requiring help in the postacute period. Several states have pursued a policy of paid family leave, including California, New Jersey, New York, Rhode Island, and Washington. A national policy of paid family leave could help offset the financial burden associated with needing to take leave from work to provide caregiving, especially when caregiving is temporary as it most often is in the postacute period. 

Finally, alternative payment models should balance incentives to control costs of care with incentives to measure and maintain good outcomes, both for patients and for family members during the postacute period. These outcomes might include perceived support and satisfaction with the care plan in the postacute period. Including such outcomes in financial incentives could motivate providers to invest in supporting caregivers and other in-home supports that benefit patients in the postacute period. 

Supporting The Unsung Heroes 

The push to discharge more patients directly home presents an opportunity to align the goals of clinicians, patients, and their friends and families during the postacute period. If support for caregiving is not addressed, however, payment reform will likely result in the unintended consequence of increasing caregiver burden. While hospitals and health systems work to reap the savings associated with alternative payment models, we must ensure that families do not ultimately bear the costs. Future policies must mitigate the burdens, inequities, and economic insecurities that result for families and friends who provide post-discharge care—these are the societal costs of caring for patients at home (emphasis added)."

This excellent article not only describes succinctly the financial disincentives imposed upon family caregiving, the resulting negative outcomes for family caregivers, and the reform necessary to facilitate aging in place planning.  Coupled with the obvious negative health outcomes institutional care presents for seniors, the case for reform is overwhelming. 

HHS Seats RAISE Family Caregiver Act Advisory Council

The RAISE Family Caregiver Act, which became law in January 2018, was created to support the development and execution of a national family caregiving strategy through the convening of a Family Caregiving Advisory Council. On August 28th-29th, the Advisory Council will meet for the first time.

The Department of Health and Human Services's (HHS) announcement also includes the complete list of advisory council members. In keeping with the RAISE Family Caregiver Act’s mandate, the council includes 15 voting members, representing the diversity of family caregivers and those who receive support. The council also includes 14 non-voting federal members from The Administration for Community Living (ACL), Centers for Medicaid and Medicare Services, Veterans Affairs, and other relevant departments and agencies overseeing labor and workforce, economic, government financial policies, community service, and other impacted populations. View the list of council members and get more information on the first meeting HERE.

The first meeting of the Supporting Grandparents Raising Grandchildren Advisory Council has also been announced, and is set to occur on August 28-29th. Information on this meeting can be found HERE. Both the RAISE Family Caregiving and the Supporting Grandparents Raising Grandchildren Advisory Council meetings are open to the public and will be available on live stream.

Care.com Rocked By WSJ Investigation - Conducts only Preliminary Screen of Caregivers

Care.com pledges to “help families make informed hiring decisions."  The company, however, undertakes only a "preliminary screening," of referred caregivers, leaving the heavy lifting up to the families themselves, sometimes with tragic consequences, according to Kirsten Grind, Gregory Zuckerman and Shane Shifflett writing in the WSJ.

The Journal found some nine instance in the last six years where caregivers on the site had police records, and later were accused of crimes while caring for customers' children or elderly relatives. The paper's probe also found hundreds of instances of day-care centers being improperly listed as state-licensed.

"Care.com is a marketplace platform," said CEO Sheila Marcelo."  The marketplace is designed for “shared responsibility overall," she adds.  Look for a greater effort by Care.com, but in the meantime, and nonetheless, family members should remain vigilant and conduct their own background checks.  Those who will take advantage of the most vulnerable will always seek others to confer upon them some imprimatur of integrity and responsibility.  Wisdom suggests caution in accepting referrals from any third party, especially where there is profit for the listing or referring service.

Long Distance Caregiving

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A new article, published by the Institute of Family Studies, authored by Professors Naomi Cahn and Amy Zietlow, The Sandwich Generation on Wheels: Tips for Long-Distance Family Caregivers, discusses the all too common issue of caregiving from afar.  Based on their respective research and experiences,  they note "that it is helpful for family caregivers to define the "sandwich" layers they face in order to proactively plan for what role they can and should play." 

The first layer requires one to "clarify who in your older generation depends on you in some way. List your parents, stepparents, in-laws, grandparents, aunts or uncles, etc. In conversation with them, formalize your caregiving role. This is particularly important in [a] stepfamily situation."  With this layer, not only must you identify who needs or might need assistance, you must identify the legal documents, and financial assets necessary to facilitate and provide help and assistance,  and you must articulate the limitations that arise from long-distance caregiving.  The authors briefly explore the potential for caregiving to help in such situations, and the practicalities of such planning:

"Then, acknowledge that by living at a distance, you cannot be available 24/7 to everyone, in person. Determine your trigger points for travel. For scheduled procedures, is there an acuity level that must be met before you fly or drive to be present? A major surgery? Yes. A physical therapy appointment? No. For emergencies, what is a reasonable expectation for arriving? Next, plan for how you will manage planned or emergency travel. We know this sounds a little advice column-y, but it’s good to be prepared for that 2 A.M. phone call that requires you to drive several hundred miles.   

The second layer, "your job, " focuses on caregivers who are employed and how to juggle a job and  caregiving responsibilities.  The third layer, "spouse and child" recognizes the sandwich issue- caregivers also have responsibilities to their own immediate family as well as the elders for whom they are caregiving.  "Communicating with your spouse and your children about your goals for this season of life is critical. Acknowledging how you will be dividing your time, and why, will help them feel engaged and involved. You will need their moral support in your role as caregiver."

Many of these circumstances will demand a "team approach," i.e., several different persons, sometimes including non-family lay persons, as well as third party professionals.  Consideration and utilization of a Private Care Agreement to define roles, responsibilities, expectations, and remuneration can aid in implementing a plan, managing expectations and concerns, and resolving foreseeable and unexpected disputes and disagreements.   

Technology can make such planning for care from a distance less risky and burdensome:

When you cannot be physically present, consider how you will stay connected and whether technology may help. Entire industries are developing applications that connect to smart homes, surveillance cameras, and interactive devices, such as Google’s Alexa, to meet the needs of elders and their family caregivers. Personal health monitors, as well as smart home technology, can monitor for falls and track weight gains and losses, play a favorite television show, or adjust thermostats, and thus contribute to the safety, entertainment, and comfort of older or ill adults. Already, senior-living residences have considered adopting “Addison,” a robot caregiver, who rewards residents when they meet goals, monitors changes in movement, and talks to the residents with screens strategically placed around the apartment or room. Technology can help connect when a loved one lives at a distance.

Of course, like with many solutions, senior appreciation, acceptance, and utilization may be vital to success.  In the past few years, we have watched and often guided seniors and their families in a suite of solutions for distance care.  These tools should be considered, and, if necessary, utilized in any Aging in Place Plan. 

Caregiving is complex, potentially overwhelming, and, draining, financially, mentally, emotionally, and physically. It is, nonetheless, rewarding and routinely ranked as “highly meaningful.”  Staying connected at a distance  is possible when expectations are clearly defined.   

Respite for Family Caregivers

Respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult. 

The ARCH National Respite Network and Resource Center provides useful resources on its website for family caregivers to navigate respite care. ARCH's Nine Steps to Respite for Family Caregivers, provides readers with facts sheets to guide caregivers to getting respite care. 

Each fact sheet is designed to be relevant to distinct caregiving situations, such as military caregivers and family caregivers of individuals with dementia.

Other resources on ARCH's website include the following:

• A Consumer Guide to Respite;
• The National Respite Locator;
• Financial Assistance for Family Caregivers.

The website also is where you can find Charting the LifeCourse Respite materials.  These materials include a Respite guide book, portfolio and other tools designed to help family caregivers caring for anyone of any age or disability and/or those who support them create a plan to access respite services within and outside the formal services system.

The materials provide:

• information on the importance of respite for the well-being of the family caregiver and all family members;
• tools for thinking about and planning for respite; and
• additional resources for finding respite in the community. 

Missouri Family to Family, which is housed within Missouri’s University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) at the University of Missouri–Kansas City Institute for Human Development, in collaboration with the ARCH National Respite Network and Resource Center, developed Charting the LifeCourse Respite materials. 

Reforming Social Security with Child Caregiver Credits

The Center for Retirement Research at Boston College has released an issue brief entitled, "Modernizing Social Security: Caregiver Credits."  The brief opens with the following statement of the challenge presented by recent demographic changes:

Women still tend to work fewer years and earn less than men, which leads to less income in retirement. One reason is that women are often still the main family caregiver. Traditionally, Social Security has recognized this role by providing spousal and widow benefits for married women. Today, however, many women are not eligible for these benefits because they never married or they divorced prior to the 10-year threshold needed to qualify. Even those who are married are less likely to receive a spousal benefit, as their worker benefit is larger. Thus, many mothers receive little to no support to offset lost earnings due to childrearing.

Of course, the population for whom Social Security was designed looks much different than the population for whom Social Security must provide benefits.  Social Security was designed in the 1930s when, typically, the husband was the sole breadwinner and the wife a homemaker. The program included spousal and widow benefits designed for this standard one-earner household. Although these family benefits are not gender based, they typically worked to benefit women because women generally work fewer years and earn less than men. The ability of women to receive family benefits, however. has declined sharply in recent decades as their employment patterns and the nature of the family unit have changed dramatically. 

On the employment front, the labor force activity of married women has increased significantly, which means that women increasingly receive benefits based on their own earnings record, and are much less likely to receive spousal or widow benefits.  Despite their increased workforce activity, though, research suggests that women continue to be at a disadvantage in the labor market compared to men. Research suggests that part of the reason is caregiving duties, which can reduce work hours and affect access to better-paying jobs.   For example, women ages 25-44 – those most likely to have young children – work part time more often than men. Even when working full time, women earn only about 80 percent as much as men.

Contributing to the challenge of providing a fair benefit for women is that fewer women are eligible for Social Security family benefits due to patterns of marriage and divorce. The increasing divorce rate has resulted in about 25 percent of first marriages ending within 10 years, the eligibility threshold needed for access to family benefits.  These short-lived marriages, which comprise a greater number of total marriages, unfortunately, are excluded from access to family benefits under Social Security, despite the continuing financial burdens the marriages place upon the individuals involved.      

Childbearing among unmarried women has also increased sharply – from 18 percent of all births in 1980 to 40 percent today. These trends have sharply increased the percentage of households headed by single mothers, leaving a wide swath of women with no access to family benefits.  Compared with married mothers, single mothers face even more labor market constraints from their childcare responsibilities, further impeding their job prospects and reducing their ability to earn an adequate Social Security benefit.

Overall, the changes in labor market and marital patterns mean that large numbers of women are going to move through retirement with more disadvantages than their earlier counterparts. Not surprisingly, among those ages 65 and over, poverty rates for unmarried women exceed those of unmarried men,  and unmarried women account for one-third of all households ages 65-69 and two-thirds of households ages 85 and over. Childcare responsibilities are a major contributor to low income in retirement. One study found that women ages 65-74 who spent at least 10 years as a single mother were 55 percent more likely to be poor than continuously married mothers of similar education and ethnicity. 

Because of the poor outlook for retirement income among single women and a growing sense that the economic value of caregiving should be recognized, many policy experts have advocated caregiver credits.  The 10 page brief looks at how the topic is handled in other countries and discusses two avenues for resolution in the U.S.: (1) "[i]ncrease the number of work years that are excluded from benefit calculations ... [and] (2) [p]rovide earnings credits to parents with a child under age six for up to five years."  The brief argues for earnings credits for child rearing.

The brief concludes in part:

"It is easy to understand the appeal of crediting Social Security records to reflect lost earnings due to caring for a child. In the past, this activity was usually compensated for by the spousal benefit, but changes in women’s work and marriage patterns have left fewer eligible for it. A credit is also more appealing than a spousal benefit if the goal is to compensate for the costs of child rearing, independent of marital status."

Regardless to which cause or causes you attribute these changes, there is little question that the disparity, at least in outcomes among single women, is real.  Moreover, our society is evolving to value more "caregiving," whether or not familial, and regardless of the age or needs of the person requiring care.  Nothing could better underscore the real value of caregiving, especially for children, than the government recognizing a financial value for the effort in order to provide a more effective safety net for seniors. 

Particularly as the government struggles to find effective solutions for care and support, and individuals, families, and communities design and construct their own, often non-governmental solutions, these efforts should find encouragement and support.  In other words, the decision to value caregiving will not only impact retirement income for a vulnerable group of retirees, but will suggest promise in addressing the caregiving needs , demands, and realities, of both the elderly, and the someday-to-be-elderly family caregivers.  

Raise Family Cargivers Act Becomes Law

The U.S. Congress recently passed, and President Trump signed, the "Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act.” The RAISE Act aims to help relatives and partners who provide medical, household and financial assistance to loved ones, including those family members providing care for the elderly.

Senators Susan Collins (R-Maine, Tammy Baldwin (D-Wis.),  Representatives Greg Harper (R-Miss.), and Kathy Castor (D-Fla.) spearheaded the legislation.  The legislation was championed by AARP, the nation’s largest non-profit, non-partisan organization dedicated to older Americans, which rallied more than 60 aging and disability organizations in support, including the Elizabeth Dole Foundation, Paralyzed Veterans of America, Michael J. Fox Foundation and the Alzheimer’s Association. 

The RAISE  Act requires the U.S. Secretary of Health and Human Services (HHS) to develop, maintain and update an integrated national strategy to support family caregivers.  Nancy A. LeaMond, AARP’s chief advocacy and engagement officer,  said in an issued statement:  “Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge."  According to AARP, family caregivers “commonly experience emotional strain and mental health problems, especially depression, and have poorer physical health than noncaregivers.” And they rarely receive training in providing care.   Most family caregivers juggle work and caregiving. And 78 percent of them incur out-of-pocket costs due to caregiving, spending $6,954 a year, on average, according to AARP’s Family Caregiving and Out-of-Pocket Costs: 2016 Report.As a result, according to the 2016 Families Caring for an Aging America report, family caregivers for adults 65 and older are “stressed, isolated and often suffering financially.”

Under the RAISE Act, HHS will create a national family caregiver strategy by bringing together federal agencies and representatives from the private and public sectors (like family caregivers, health care providers, employers and state and local officials) in public advisory council meetings designed to make recommendations. The agency will have 18 months to develop its initial strategy and then must provide annual updates.  The RAISE Act also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government and others may take to help caregivers.

The goals of the strategy include identifying actions that government, communities, health providers, employers and others can take to support family caregivers, including:

• Promoting greater adoption of person-centered care and family-centered care in health settings and long-term care settings
• Training for family caregivers
• Respite services and options for family caregivers
• Ways to increase financial security for family caregivers
• Workplace policies to help family caregivers keep working
• Collecting and sharing of information about innovative family caregiving models
• Assessing federal programs around family caregiving
• Addressing disparities and meeting the needs of the diverse caregiving population

Forbes, in reporting on passage of the Act observed:

In the midst of one of the most divisive political landscapes in America’s history, members of Congress as well as President Donald Trump have shown there is one thing we can all agree on--caregiving.  

America’s family caregivers are eagerly waiting to see what effect the law will have on health care policy, and long term care.