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What Does Incapacitated Mean in Elder Law & Estate Planning?

When working with an attorney to prepare for your future and address the challenges associated with aging, you will likely come across the term “incapacitated.”

Incapacitated Definition

Someone who is incapacitated cannot make personal decisions or understand legal documents. An incapacitated person requires a surrogate decision-maker, such as an agent under a health care power of attorney or a guardian.

When a person has the mental state to execute a valid legal document, such as a will or trust, this is known as having capacity. Capacity is the opposite of incapacity. If a court finds that a person signed a will while incapacitated, the court can invalidate the will.

(Note that while certain states use the term “incapacity,” others refer to this same concept as “incompentence.”)

Causes of Incapacity

You or your loved one could become incapacitated for a variety of reasons, including illnesses, injuries, and disabilities. A person with a severe developmental disability may be legally incapacitated for their entire adult life.

Someone who experiences a disability later in life may become incapacitated after the onset of an illness or injury. For example, an older adult who develops dementia may become incapacitated once the dementia progresses, such that the individual cannot understand a legal document or make personal decisions.

Incapacity in Elder Law

Elder law involves preparing for and addressing incapacity associated with injury, illness, disability, or aging. It is essential to understand the concept of incapacity applies to power of attorneys, wills and estate planning, and guardianship of an adult.

Power of Attorney

A power of attorney is a legal document that allows you to appoint someone else to make decisions for you.

  • A health care power of attorney allows you to select someone to make health care decisions for you. You can also give your agent instructions for the type of care you would like to receive, including end-of-life care.
  • With a power of attorney for property, you can give someone the authority to handle your financial affairs, such as paying your bills and managing your accounts.

Creating a valid power of attorney requires you to have mental capacity to understand the contents of the power of attorney. If you become incapacitated, a power of attorney allows you to preserve your autonomy, as you have selected a surrogate decision-maker to make decisions according to your wishes.

Depending on how you and your attorney structure your power of attorney, it could take effect only after you become incapacitated, once a physician determines that you cannot make decisions for yourself. However, many choose to allow trusted individuals authority as soon as they create a power of attorney, as this avoids having to wait for a physician’s determination of incapacity.

The court may appoint a guardian for those who become incapacitated without a power of attorney.

Guardianship of an Adult

Incapacity is a central concept in the guardianship of an adult. Guardianship of an adult is a court-supervised arrangement where one person assumes responsibility for an adult who is incapacitated.

The court must first determine that a person is incapacitated before permitting someone to become the legal guardian of an adult. In making this determination, the court relies on evidence from the individual’s physician.

According to the National Core Indicators Data Brief, those with significant autism, severe intellectual disability, or Down syndrome are more likely to have guardians.

Wills and Estate Planning

Making a will or any estate planning document that needs your signature, such as a trust or transfer on death deed, requires you to have capacity. You must understand what you are signing.

A will is only valid if you had the required mental capacity when you signed it. The court can invalidate your will if it finds that you were incapacitated when you signed it.

For people with cognitive difficulties impacting capacity, it is possible for capacity to fluctuate. A person with dementia may cycle through periods of lucidity and incapacity.

Consult With an Estate Planner

As you age, it is a good idea to meet with your estate planner early and begin the process of developing a will and estate plan. Dementia, a disease that can affect capacity, impacts approximately 10 percent of adults 65 and older, according to Columbia University.

By working with an estate planner, you can help prevent others from challenging the validity of your will after you pass and ensure that you have a valid will in place. Find a qualified attorney near you today.

6 Ways the Sandwich Generation Can Plan for The Future

Anyone experiencing the struggle of simultaneously caring for children and aging parents is part of the sandwich generation. Although “generation” is part of the phrase, it doesn’t refer to people born at a specific time. Typically, these family caregivers will be in the 30- to 40-year-old age range, providing for their families and balancing care duties between the needs of children and parents.

Trends That Led to an Increasing Sandwich Generation

The rise in the numbers in the sandwich generation is a byproduct of two influential trends: Women are giving birth later in life, and the senior population is increasing. A third contributing factor was the COVID-19 pandemic and the fear of placing aging parents into long-term care facilities where viruses spread easily in communities of people with declining health. Many families pivoted to caring for their loved ones at home.

If this sounds familiar, you are not alone. You are most likely experiencing significant anxiety and stress as you juggle school and activities for your children, expectations at work, changing family dynamics, and daily caregiver duties. Though this is a challenging time in your life, it doesn’t have to be as hard as it seems. There are steps to take to minimize frustration.

6 Ways for Caregivers of the Sandwich Generation to Plan

  1. Start by reprioritizing daily routines. If there seems to be an overwhelming number of tasks to accomplish in a day, prioritize between urgent and non-urgent categories to determine what needs to be addressed first.
  2. Make time for self-care to avoid caregiver burnout. Focusing on basics like nutritious meals, adequate sleep, and exercise will serve you and your loved ones well.
  3. Know your rights at your workplace. Programs like the Family Medical Leave Act (FMLA) offer job security to those taking a leave of absence for family medical reasons. While it’s not a paid benefit, you will maintain access to your health insurance benefits for up to 12 weeks off. If you haven’t already, explore working remotely to put you in the same physical location as those you care for in your home.
  4. Share your feelings about the challenges you are facing and get extra help when you need it. Talking things through with family members can better manage everyone’s expectations. There are also forums and community resources that can put you in touch with others in the sandwich generation, where you can share information and offload burdens.
  5. Make an honest evaluation of your available financial resources before determining a new course of action.
    • Are your parents able to pay for their care on their own, even within your own home?
    • Do they carry long-term care insurance or whole life insurance policies with living benefits?
    • Are other family members willing to contribute financially, or is a public assistance option viable?
  6. Talk things through with your parents about their preferences and abilities to pay for health care services. Discuss ideas with siblings and figure out who can help provide care and whose home provides the best solution. If external help is a must, research local possibilities and costs.

Preparing Estate Planning Documents

It’s an excellent idea to consult an estate planning attorney about legal documents if a sudden financial or medical decision presents itself. You need to have the legal power to make important decisions for your aging parents and minor children.

Your parents may need more help as their health declines or they experience dementia. You may need to renovate your home as your parents age for their comfort and safety, or eventually look for professional services and facilities. Also, review your retirement savings and other investments that can protect your children’s lifestyle and future.

  • College funds need to be a priority, as is a 401(k) plan if your place of employment offers one.
  • Consider the purchase of a term or whole life insurance policy to protect your family’s future in the event a tragedy affects your ability to care for your family.
  • Start an emergency fund to help cover incidental costs, unexpected medical bills, and a potential long-term hospital stay. Unexpected costs can throw off your budget.

If your sandwich generation status continues for an extended time, re-evaluate your finances periodically. Goals will change, and updating your estate plan (and your parents’ estate plan, too) may help you stay on track to meet your family’s long-term goals.

Money management and estate planning are critical elements to creating a mutually beneficial living experience as part of the sandwich generation. While this may not be the easiest time of your life with the extra demands placed on you, it’s possible to manage and even thrive with adequate planning.

Speak with an attorney who is familiar with structuring these types of plans. Find a qualified estate planning attorney in your area today. They educate families about issues faced by seniors who may be experiencing declining health, evaluate health care facilities and services, and provide family resources for caregiver support.

Affordable Housing Options for Low-Income Older Adults

Safe housing that meets older adults’ needs is essential to healthy aging in communities. Many seniors with low, fixed incomes struggle to balance housing expenses with the costs of health care, transportation, and groceries.

Finding inexpensive, safe, and accessible housing can be challenging. However, several affordable housing options are available for older people with low incomes.

Section 202 Supportive Housing for the Elderly

The Section 202 Supportive Housing for the Elderly Program provides affordable housing and supportive services for older people with limited means. Through this program, seniors can maintain independence while receiving benefits such as transportation and assistance with activities of daily living (ADLs). The support allows them to continue living independently.

The United States Department of Housing and Urban Development (HUD) requires Section 202 facility owners to maintain the buildings and regularly inspect them to ensure the tenants have a safe environment. Rent typically comprises 30 percent of the tenant’s income.

Older adults who meet specific thresholds may enroll in Section 202 Supportive Housing for the Elderly Program.

  • The head of the household must be 62 years old or older.
  • There are also income requirements, which vary depending on location. Seniors must meet HUD’s income limits criteria. Generally, it is less than 50 percent or less of the area’s median family income.

The program has several benefits for those who qualify:

  • Low housing costs provide peace of mind and stability.
  • Units designed for older adults are more accessible, including features such as wheelchair ramps, wider doors, and bathroom grab bars.
  • Senior communities ease loneliness and foster social connections.

Housing Vouchers

Housing vouchers are another option for seniors. Local housing agencies provide housing vouchers to low-income households that help cover rent. These vouchers are available to families living below 50 percent to 80 percent of the poverty level; income thresholds vary by area and agency. Dwellings must satisfy housing quality standards, and owners must maintain the units.

While families can obtain vouchers regardless of age, elders and those with disabilities can receive an additional deduction.

Although housing vouchers can help some older adults and their families, limited availability and long waiting lists characterize housing voucher programs. Per the Center on Budget and Policy Priorities, only one in four qualifying households receive vouchers.

Home Sharing

Home-sharing programs can help older adults living alone stay in their homes while providing an affordable housing option for older adults. In addition to helping with costs, home-sharing can prevent loneliness, particularly benefiting older adults whose spouses have passed or children have moved away.

Through Senior Homeshares, older adults with homes can find housemates who are also elderly, helping to lessen the cost of living. The service pairs older adults with spare rooms in their homes with those on fixed incomes searching for safe, affordable housing.

Additional Options

Most affordable housing programs, such as Section 202 and housing vouchers, have waiting lists as demand exceeds availability. Additional options exist for older adults who need more immediate help with housing costs.

  • Older adults who own their homes can apply for a reverse mortgage, allowing them to continue living at home. Reverse mortgages draw upon existing equity in a home to supply regular payments, which can supplement retirement income. The federal government insures the Home Equity Conversion Mortgage (HECM).
  • For those with health care needs who have very low incomes and few assets, Medicaid could cover the cost of nursing home care.
  • Medicare pays for certain in-home health services for homebound older adults. Although Medicare does not cover rent or mortgage payments, in-home care covered by Medicare can lessen total expenses.
  • Individuals might consider moving in with family or friends to share living expenses and benefit from support.

For older adults struggling to afford housing costs, several options exist. The best choice depends on your unique circumstances. For assistance obtaining more affordable housing as you age, consider consulting with your attorney in your area.

Which Should I Choose? Nursing Home Care vs. Hospice Care

End-of-life decisions are never easy. One of the most important decisions you may make regarding health care as you age could be whether you need a nursing home or hospice care.

To make the best choice for you and your family, it helps to know the difference between the nature of the care provided through a nursing home as compared with hospice.

Nursing Home Care

Nursing home facilities offer residential care for the elderly and disabled. The treatment patients receive from a nursing home differs from what is available in hospice care. Residents at nursing homes receive treatment to extend their lives. Care that you can expect from a nursing home may include custodial and some skilled care.

Custodial care includes nonmedical treatment, such as assistance with dressing, bathing, cooking, laundry, and other types of personal care. The provider does not need a medical license to give residents this type of care.

Skilled nursing care is provided by licensed medical practitioners. Nursing home residents may receive some skilled care, including wound care, physical therapy, injections, and other care that they may need to ensure their physical well-being.

Note that Medicare generally does not cover custodial care. And while Medicare Part A (hospital insurance) coverage may be available for enrollees with certain medical conditions, it is often limited to those who need short-term care in a skilled nursing facility, rather than a nursing home. (Learn more about Medicare’s limited nursing home coverage.)

If you are eligible for Medicaid, a program for individuals with limited income and assets, there are nursing homes in many states that accept Medicaid patients.

What Is Hospice Care?

Hospice care is an option for patients who do not wish to receive treatment to help improve their condition or extend their life, but want comfort care as they reach the end of their lives. Your hospice care team may include doctors, nurses, social workers, spiritual advisors, and volunteers.

A hospice care team is trained in treating end-of-life pain. Hospice care can be administered in a patient’s home or in an institutional setting. It also may provide support to family members and caretakers, including respite care.

If a patient has Medicare Part A and meets the following qualifications, they may have hospice care services, including pain-relieving medication and home aide services, covered:

  • A primary care physician, or a hospice care doctor, confirms that the patient’s condition is terminal and they will not live for more than six months.
  • The patient is willing to receive palliative care only and not care that is intended to try and improve their condition.
  • The patient signs a statement confirming that they will receive hospice care instead of any other Medicare-covered treatments related to their physical condition.

For Medicaid recipients with a terminal illness, certain states may provide help in paying for hospice.

A Note on Concurrent Care                                         

Complicating matters is the fact that Medicare will generally not cover nursing home care and hospice care, known as concurrent care, at the same time. Currently, individuals on Medicare must give up Medicare payment for care related to their terminal condition if they want to receive Medicare’s hospice benefit. As a result, many individuals facing a terminal illness may not opt for hospice support services.

Policymakers have been pushing for a benefit within Medicare that would allow patients who wish to benefit from hospice care services (for example, a hospice aide, in-home respite care, or nutritional support) to receive curative treatment (for example, chemotherapy) simultaneously.

The Centers for Medicare and Medicaid Services has spent the past several years testing various models, including one known as the Medicare Care Choices Model (MCCM). MCCM has been shown to improve the quality of patients’ end-of-life while also resulting in Medicare savings. However, this option has not yet been made permanent.

End-of-Life Dilemma: Which Should I Choose?

While considering the next steps to take in your health care plan, speak candidly with your family and health care team about your needs and how you see your future.

If you have questions about coverage options that may be available to you in a nursing home or with hospice care, you may consider speaking to an elder law attorney in your area.

Will Robotics and AI Be the Future of Elder Care?

Adults 65 and older constitute the fasting-growing age demographic in the United States. When it comes to elder care, this expanding population is facing a scarcity in people equipped to support them as they get older.

One estimate predicts a shortage of 151,000 paid direct care workers and 3.8 unpaid family caregivers by 2030, increasing to a gap of 355,000 paid workers with 11 million unpaid family caregivers by 2040.

Technological advancements in robotics and artificial intelligence may be opening the doors to new possibilities for supporting aging people.

Innovations for Aging in Place and Beyond

Many older adults wish to stay in their homes for as long as possible. According to AARP, 77 percent of adults over 50 want to continue residing in their homes for as long as they can.

Yet aging can lead to challenges with mobility and memory, such that older individuals often need additional assistance to live independently. Innovations in robotics and artificial intelligence may have the potential to provide support on this front, allowing seniors to continue living at home as they age.

Developments in robotics and AI could also fulfill unmet needs in nursing homes and assisted living, increasing efficiency, helping caregivers complete tasks, and reducing the number of staff required.

Meanwhile, artificial intelligence technologies may be able to help older adults manage health conditions from home as well as receive more efficient care in hospital settings.

Robots Helping Out in Health Care Facilities

How might robots help seniors in their homes, nursing homes, assisted living facilities, and beyond? Here is a glimpse into some emerging products:

  • Panasonic has developed robotic exoskeletons designed to augment wearers’ abilities. This self-reliance support robot aims to help aging people perform everyday tasks, get in and out of bed, and sit on chairs or the toilet. The device could help individuals to perform physical tasks without assistance. Another portable exoskeleton, the APO, may be another type widely used one day in health care to help prevent falls in seniors.
  • The TUG robot is already assisting in hospitals by delivering medicine, meals, supplies, and tests, freeing nursing staff to focus on tasks requiring more education and expertise.
  • Social robots may prove another avenue for improving older adults’ mental health. Paro, a robotic seal, gives patients the benefits of pet therapy in health care settings and dementia wards where bringing live animals would be impractical. Similar to pet therapy, some individuals may find it easier to connect with robots than with people.

In the coming years, other kinds of socially assistive robots may become increasingly common in elder care. These types of robots engage with residents, provide entertainment and interaction, perform tasks, or help ensure safety:

  • A socially assistive robot called Stevie, designed at Trinity College Dublin in Ireland, was tested at a Washington, D.C., nursing home from 2018 to 2020. Stevie entertained residents by telling jokes, playing bingo, and leading karaoke. It also provided reminiscence therapy using stories and music and could clean the facility with ultraviolet light. Recognizing commands like “help me,” the robot also can alert staff when residents needed assistance.
  • Pepper, a humanoid robot funded by the Minnesota Department of Human Services, is similarly designed for socializing with residents. Able to recognize faces and read human emotions, Pepper is being introduced into nursing homes and other elder care facilities.
  • Aeo, a robot created by Aeolus Robotics, interacts with residents socially. In addition to taking selfies with residents, it performs various essential functions, such as disinfecting surfaces, opening doors, pressing elevator buttons, and alerting staff when a resident has fallen or needs help.

Technology at Home

Older adults who live alone and people with disabilities can already use Personal Emergency Response Systems (PERS), also known as Medical Emergency Response Systems. These lightweight, battery-powered wearable devices allow individuals to call for help at the push of a button. For an installation fee and a monthly monitoring charge, users receive a device that contains a radio transmitter and a console that connects to a telephone. An emergency response center monitors incoming calls.

Technology using artificial intelligence, motion sensors, and camera monitors can also provide more comprehensive assistance and monitoring for seniors aging in place:

  • CarePredict, a device worn on one’s dominant arm, tracks the wearer’s activity. When it detects deviations from behavioral patterns, it alerts a caregiver.
  • With Envoy at Home, caregivers can place small sensors in their loved one’s home that alert them when their loved one could be at risk, such as when they leave home, exhibit disturbed sleep, visit the restroom frequently, or display inactivity.
  • Integrating AI with smartphone usage is one more emerging area in senior care. A 2021 survey by Pew Research Center found that the majority of older adults use smartphones. Technology utilizing smartphones could make in-home health monitoring more accessible, particularly for homebound seniors who may postpone doctor visits or rely on telehealth.
  • With AliveCor, older adults can monitor and track their heart activity on their phones. AliveCor is a wireless personal electrocardiogram (EKG) placed on the back of the smartphone. Using an application, individuals can view their EKG results and can share results with their cardiologists.
  • Using the smartphone’s camera, artificial intelligence, and machine learning, Healthy.io makes medical assessments of urine by analyzing the concentration of chemical elements and chemical compounds in urine.
    Healthy.io also empowers users to take photos of their wounds for a digitalized wound assessment, which can track healing and help doctors make recommendations.
  • Luminostics is a diagnostic platform that attaches to a smartphone. It can recognize bacteria, viruses, proteins, and hormones from bodily fluids.

A Growing Market

Advances in medical technology are already helping health care providers manage, identify, and treat medical conditions in older adults.

According to Healthcare Dive, the Food and Drug Administration (FDA) authorized 91 AI- or machine-learning-enabled medical devices in 2022 alone. These include tools for radiology, cardiology, neurology, and more.

Going forward, AI may also become the norm for performing administrative tasks in clinical settings, giving health care workers more time to spend directly helping patients.

Is “Aging in Place” Right for Me?

Most older adults want to remain in their homes and communities as they age rather than move into assisted living facilities or nursing homes.

For those who wish to maintain their independence and continue living at home as they grow older, taking certain steps to protect their physical, mental, and financial welfare is essential.

What Does It Mean to Age in Place?

The Centers for Disease Control and Prevention defines aging in place as a senior’s “ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” According to 2021 data from AARP, more than three-quarters of adults 50 and older say they would prefer to age in place.

Health Considerations for Older Americans Aging in Place

Older adults must consider their physical, emotional, and social well-being when deciding where to spend their later years. They may consider adding supplemental services over time to help improve their quality of life.

To ensure that you will have the support you need for safely aging in place, take the following into consideration:

Resources to Manage Chronic Diseases

Disease management is vital for anyone, especially an older person with a chronic illness. Many older people suffer from at least one chronic illness. If a senior has a chronic disease and wants to age in place, they and their caregivers should focus on:

  • Ensuring that spaces in the home are safe and easily accessible to make getting around easier;
  • Learning about proper nutrition; and
  • Increasing access to dental health services. Research has found that proper oral care can help prevent the progression of many chronic diseases.

Eating Well While Aging at Home

Proper nutrition is a vital part of caring for yourself at home. In facing potential changes to your financial situation after retirement, you may need help buying nutritious meals even after budgeting.

If you find yourself in need of meals, community resources may be available. Neighborhood senior centers, places of worship, and charities may provide a hot meal while you make new friends. If you cannot leave your home, some meal delivery services drop off food at your door for little or no cost.

Support for Mobility

Exercise and maintaining your mobility can increase overall physical and mental health even as you grow older. Seniors aging in place need to be able to move around their homes and neighborhoods safely. Aging in place is a much more realistic goal if you can walk for exercise, access transportation to medical appointments and errands, and maintain a safe environment at home, free from increased fall risks.

If you desire to age in place, consider simple changes you can make to your home to promote your safety. Examples of helpful modifications around the house include handrails, temporary ramps, no-slip bath rugs, and assistive seating.

Mental Health, Substance Abuse, and Memory Care Services

There is an increased need among older adults for mental health, substance abuse, and memory care services. An estimated 20 percent of older adults have a mental health disorder, and the total number of seniors with a mental health or memory care diagnosis is likely to increase over time.

Suggestions for addressing mental health concerns among older people include:

  • Focusing on preventative care. Seniors and their caregivers should work with their primary care physician to identify warning signs of depression, anxiety, other mood disorders, and memory care problems. Preventative care can help mitigate the progress of these disorders and improve quality of life.
  • Looking for common signs of a substance abuse problem. This is an often overlooked area of older adult mental health care. Older adults may turn to substances to deal with unresolved childhood problems or to avoid a feeling of loss of meaning and purpose. Some common signs to watch for include reduced hygiene, unexplained bruises, erratic behavior, and the smell of alcohol on their breath.

    If you are a senior’s caregiver and suspect substance abuse, you can find resources and support through the Substance Abuse and Mental Health Services Administration (SAMHSA).

The Need for Social Connection Among Aging Adults

Older adults benefit tremendously from social connections and interaction. People over 65 are likely to live alone, so creating a community outside the home is necessary. Feeling a sense of purpose is beneficial to mental and physical health. For seniors looking to create a sense of community and purpose, they may benefit from such activities as:

  • Joining an organization or social club
  • Volunteering for a cause close to their hearts
  • Learning a new hobby
  • Attending a religious institution
  • Adopting or fostering a pet
  • Using technology to stay in touch with friends and family

Wearables and Smart Monitoring Devices

Technology can help us not only remain connected to one another, but also monitor our health and that of our aging loved ones. Many devices make detailed health information readily available at our fingertips. These devices benefit seniors because they can learn more about their health and make the most of doctor’s visits by communicating effectively about their medical needs.

Examples of wearable health and smart-home monitoring devices include:

  • Smartwatches and smartphones, which can track your cardiac health, fitness activity, and sleep patterns
  • Medical alert bracelets and personal alert necklaces, which can aid in detecting falls or contacting emergency services when necessary
  • Contact sensors and smart locks, devices that can alert caregivers when their loved one living at home leaves a window, garage, or door open, or has forgotten to lock them
  • Smart plugs, which can automatically turn on and off lights, space heaters, thermostats, security cameras, and more

Money Management While Aging in Place

Money management can also be an area of concern for seniors and caretakers. Seniors want to make sure they have sufficient financial resources to remain in their homes and communities comfortably, eat well, care for their medical needs, and have fun.

Creating a budget with the help of financial counselors and geriatric care managers can benefit someone on a fixed income. There may even be volunteers in your area that offer a similar service. Being aware of how to prevent and avoid common types of scams that target the senior population is equally as important.

How Can Caregivers Help Seniors Age in Place?

Seniors often choose to age in place to remain independent and avoid becoming a burden to their family. Caregivers can support their goal by teaching them to use technology to communicate and track their health, helping them establish a budget, and setting them up with a routine that may include visiting their doctor, running errands, and making time to socialize.

There is nonmedical support that your loved one will need, too. Caregivers may opt to support their aging loved ones by pitching in with or hiring services for lawn care, cleaning, cooking, laundry, or pet care.

Is Aging in Place Right for You?

Careful planning is the best way to accomplish your goal of staying home as you age. If you are considering plans to age in place and want assistance, elder law planning help is available in your area. Find a qualified elder care attorney to learn more about your options.

2023 AARP Report Recommends Supports for Family Caregivers

Many older Americans choose to have their family members care for them as they age. Despite the comfort a familiar face may provide, there is a significant cost for the loved ones who sacrifice their time, and often their upward economic mobility, to ensure that they can secure proper care for their senior parent.

In a report issued in March 2023, AARP stresses the importance of supporting family caregivers in their financial, emotional, physical, and professional lives. The analysis gives a glimpse into the experiences of family caregivers and also offers recommendations on policies, practices, and programs – across public as well as private realms – that policymakers should consider enacting or enhancing in support of caregivers and the individuals who are in their care.

How Much Does It Cost to Be a Family Caregiver?

Being a family caregiver can come at a great financial cost. The average cost of caregiving has risen exponentially in the past several years, and the trend is expected to increase more over time.

In its report, AARP estimates the value of family caregiving in 2021 at $600 billion dollars in unpaid contributions – up from $470 billion dollars in 2017.

The monetary value of caregiving is not the only cost of care. For family caregivers, some of the intangible costs of included:

  • spending an average of 18 hours per week to tend to the needs of their loved ones
  • facing higher risks of chronic loneliness, which may have negative health effects
  • neglecting their own self-care

What Are the Major Issues in Family Caregiving?

According to the AARP report, by 2034, the population of people over 65 will outnumber the population of children under 18. With this historic shift, the researchers suggest that the impact on family caregiving will become even more prominent in several key areas:

The Need for Tailored Support for Diverse Caregivers and Their Families

Family caregivers across diverse cultures, ethnicities, sexual orientations, and gender identities often face concerns about access to support that is specific to their community. Ensuring that affordable, inclusive, readily available policies and services are in place to meet these needs of these caregivers will continue to be critical.

Direct Care Workforce Shortage

Amid a shortage of professional caregivers that only worsened during the COVID-19 pandemic, AARP notes that the turnover rate among the direct care workforce averages between 40 percent and 60 percent each year. Failing to recruit and retain a dedicated workforce in caregiving as the aging population grows will inevitably add to the burden carried by unpaid family caregivers.

Economic Impact on Working Caregivers

Most family caregivers – nearly two-thirds of them in 2019, according to AARP – hold a full- or part-time job in addition to caring for their loved ones. These workers often take an economic hit because they need to split their time between their jobs and their home responsibilities.

Without such supports as telecommuting, paid leave, and respite care, they may have no choice but to call out of work, turn down promotions, or even leave their job altogether to dedicate themselves fully to providing care. This can then mean additional financial stress as well as adverse effects on their career and future earning potential.

A Growing Sandwich Generation

In 2019, about 30 percent of older Americans were living with their children or grandchildren. The so-called “sandwich” generation represents those who are responsible for caring for their children and their aging parents at the same time, while also working. These caregivers, who are likely to report more emotional and financial pressure, now tend to include workers across an ever-expanding age span – from 35 to 64.

Recommendations

The AARP’s report recommends specific policies and practices to support family caregivers going forward. These recommendations to policymakers include the following:

  • Including family caregivers in planning and decision making across health care settings
  • Improving access to respite care for family caregivers
  • Ensuring that publicly funded programs and supports for caregivers are inclusive, culturally appropriate, and designed to meet the needs of diverse populations
  • Offering family caregivers a tax credit
  • Expanding protections for workers who rely on the Family and Medical Leave Act and related state programs while providing long-term care for family members, including instituting paid leave for working family caregivers
  • Allowing for other programs that pay family caregivers
  • Improving Social Security benefits for people who provide long-term care services to family members

Additional Resources

Having a care plan in place for your loved ones in advance may help decrease the financial costs and other stresses associated with paying for long-term care for aging adults. Your elder law attorney can help you create a comprehensive long-term care plan that will address the costs associated with tending to the people you love.

What Is Hospice Care at Home?

Hospice care is a type of health care that patients with terminally ill conditions rely on at the end of their lives. This type of care focuses on pain management and emotional, spiritual, and familial support for patients nearing the end of their lives.

There are several options for receiving hospice care, including being cared for at home. The type of intimate care a patient receives while in hospice is more conducive to being received at the patient’s home. This becomes a team effort, and it helps to have a peaceful environment when receiving care.

Who Can Benefit From This Type of Care?

Patients with serious illnesses like cancer, heart disease, dementia, kidney failure, or other fatal conditions benefit from hospice care. This type of care can help the patient live a more comfortable life while decreasing the emotional burden of grief for families by preparing them for the loss of their loved one.

When Is Hospice Recommended?

Hospice care should not only be considered by those who have loved ones nearing the end of their lives. While most of these services are generally reserved for people with six months or less to live, early hospice care can be beneficial for patients and their families as well.

You may wish to consider such services in the following cases:

  • The patient has a serious decline in their physical well-being
  • After a diagnosis of Alzheimer’s disease or dementia
  • You have decided to forgo any treatment to improve your physical treatment or care for your illness

Who Makes Up a Hospice Care Team?

Your hospice team can consist of many different types of people. Various professionals and volunteers may be involved in end-of-life care. Some of those you may see on your care team can include:

  • Doctors
  • Nurses
  • Social workers
  • Spiritual advisors
  • Trained volunteers

Who Pays for Hospice Home Care?

Like any other health care option, these services can quickly become very expensive. Fortunately, there are several ways to cover the cost, including:

Government Programs

If you qualify for government assistance, there may be insurance plans specifically designed to cover the cost of hospice care.

Seniors enrolled in Medicare Part A may qualify for a Medicare hospice care benefit. This benefit program allocates money to pay for such care at home.

For terminally ill patients on Medicaid, hospice care may be covered depending on the state.

The Department of Veterans Affairs may also provide coverage for these care benefits for seniors who have served our country.

Private Insurance

Check the terms of your insurance policy to determine if your health insurance covers hospice care. Your policy may cover all or part of your hospice care needs.

Options for Uninsured Patients

Even if you do not have health insurance, you may still have coverage options. There are charitable organizations that work with elderly and disabled individuals who need help paying for hospice care services. Hospice care organizations also often have internal departments that work with patients who qualify for this type of care but are indigent or do not have health insurance.

Is In-Home Hospice Right For You?

Making this choice is an important part of your end-of-life care plan. Be sure to gather as much information as you can before deciding whether this type o care is best for you. For example, you may want to consult Medicare’s hospice compare website or CaringInfo.org’s website for other hospice locator tools.

If you have questions about Medicare or Medicaid, contact your elder law attorney to learn more.

Bill Advocates for Seniors Who Seek At-Home Medicaid Care

Seniors who need assistance with everyday activities such as dressing, bathing, and eating are eligible for Medicaid Long-Term Services and Supports (LTSS). Unfortunately, hundreds of thousands of people who qualify for these services – but wish to receive them in their homes or a community setting – end up on extended waiting lists.

In many cases, these seniors then find themselves with no choice but to live in nursing homes or other institutional facilities for months, or even years, if it is the only way they can access the day-to-day support on which they rely.

A piece of legislation focused on meeting the needs of this population of older adults has recently been reintroduced to Congress by U.S. Sen. Bob Casey (D-PA) and U.S. Rep. Debbie Dingell (D-MI).

Aging in Place: When You Want to Live Independently

Living at home as you grow older can have a positive impact on your physical and emotional health, as well as on your wallet. According to one 2022 study, aging in place includes such benefits as the following:

  • Maintaining a sense of independence and autonomy in one’s community
  • Living in a familiar setting
  • Enjoying a more fulfilling social network
  • Decreasing feelings of loneliness
  • Saving on the cost of long-term care facilities

Where Does the Medicaid Waiver Fit Into HCBS?

Older adults qualifying for Medicaid LTSS who wish to receive services in their home or community generally must wait to be granted a waiver before Medicaid will cover the cost of their home care.

As each state administers its own Medicaid system and waiver program, the wait time can vary depending on where you live. The income and asset thresholds for waiver programs can also differ from state to state, as can the types of home care that are covered.

These are among the main reasons why you may want to consult with your elder law attorney, who knows the rules and regulations specific to the state where you reside.

Home and Community Based Services (HCBS) Access Act

The Home and Community Based Services (HCBS) Access Act, originally introduced in 2021, seeks to secure for these seniors a real choice between receiving care at home or in an institution.

one-page PDF summary of the HBCS Access Act outlines six specific steps that the proposed legislation is designed to provide:

  • Enhanced Medicaid funding for HCBS
  • Grant funding for states that would develop their capacity to serve individuals who prefer to receive home care
  • Resources for states meant to ensure professional caregivers have stable jobs and wages
  • A stronger workforce in home care
  • Training for family caregivers
  • Improved methods for evaluating the quality of HCBS

According to a 2021 report from Justice in Aging, 25 of the 50 states spend twice as much on institutional care as on HCBS for seniors and people with disabilities.

In addition to seniors eligible for Medicaid LTSS, many people with disabilities would benefit from the legislation if it is passed.

Support From Others

Sixteen U.S. representatives are co-sponsoring the HCBS Access Act, and numerous advocacy organizations for older adults have endorsed the legislation as well.

“I’m helping introduce the HCBS Access Act, which expands Medicaid HCBS funding that will help ensure Americans don’t have unnecessary delays in accessing the care they need,” U.S. Sen. Jeanne Shaheen (D-NH), one co-sponsor, said in a news release about the Act. “This bill is an important investment not only in the accessibility of care, but also in creating better jobs for home care workers and support for family caregivers.”

Earlier this year, Sen. Casey and Rep. Dingell also reintroduced a related bill, the Better Care Better Jobs Act. The goals of this legislation are to boost funding for HCBS, make millions more individuals on Medicaid eligible for these services, and create new jobs for home care workers.

Because Medicaid can be such a complex system to navigate, be sure to consider consulting with your elder law attorney.

Study: Certain Social Risks May Cause Early Death in Seniors

Using survey data from more than 8,000 adults aged 65 and older, researchers have identified eight social factors that may lead to early death in older adults.

As part of the study, researchers from Massachusetts General Hospital and the University of California, San Francisco, developed a tool called the Social Frailty Index to examine factors that predict mortality, including age, gender, and medical conditions, as well as social characteristics.

The findings have applications in clinical, population health, and research settings. Clinicians may be able to use the index to help their older patients participate in advanced care planning. The index also helps identify at-risk seniors who could benefit from changes to their social interactions that could extend their lives.

8 Social Characteristics Shared by Study Participants Who Died Prematurely

Following 8,250 seniors for four years, the research team discovered that 22 percent of the group died within four years of their baseline interview.

The participants who died prematurely had the following eight social characteristics in common:

  1. Poor neighborhood cleanliness
  2. Low perceived control over their financial situation
  3. Meeting with children less than yearly
  4. Not working for a salary
  5. Not being active with children
  6. Not volunteering
  7. Feeling isolated
  8. Being treated with less courtesy or respect

Why Are the Social Frailty Index Findings Important for Older Adults?

The Social Frailty Index reveals the potential impact of healthy social connections on seniors’ physical health, according to the study’s authors. These findings, they state, are significant because medical providers previously had not accounted for these characteristics. Health care providers taking these findings into account may be able to give patients a complete care management plan.

“We often overemphasize the importance of medical conditions when thinking about longevity,” Sachin J. Shah, the study’s lead researcher, said in a news release. “This research demonstrates that our social lives are as important as medical conditions.”

The data collected from the study also helps predict the likelihood that a senior can safely and comfortably age in place. Solid social connections correlate with the ability of older adults to live independently.

Failure to consider social factors can lead to more significant inequities. For example, one of the authors states, Medicare penalizes hospital readmissions. Because of the expense of rehospitalization, some hospitals may refuse to admit Medicare recipients. Omitting risk factors creates a more significant barrier to proper treatment for marginalized groups. Patients can therefore avoid rehospitalizations if clinicians recognize and account for social factors when assessing a patient’s risk factors.

What Can Seniors Take From the Study?

This study’s findings suggest that friends, family, and community can help you live a longer and happier life. Armed with the knowledge from this study, seniors and their caretakers can structure their lives to address the eight social factors listed above.

This study also provides older adults and caregivers with the language to address these conditions with doctors, estate planners, geriatric care managers, and other family members to help ensure their needs get met.

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