Fong Law Group

Resources for Caregivers of Older Adults with Dementia

Every year, 16 million people in the United States care for family and friends with dementia, the Centers for Disease Control and Prevention reports. Caregivers of people with dementia provide care for longer durations than those who assist individuals with other conditions. They also have comparably higher risks for anxiety, depression, and reduced quality of life. One-third of caregivers of elders with dementia are older adults themselves.

Although caring for people with dementia can be challenging, a variety of resources can help caregivers assist their loved ones. Apps, devices, activity subscription services, caregiver training, and online resources can aid caregivers with their responsibilities, providing valuable information, structure, and support.

Technology for Caregivers of People With Dementia

Research suggests that technology may benefit people caring for those with dementia, alleviating some of the stress associated with caregiving. Technology should be inexpensive, scalable, and user-friendly to be effective. Among the numerous mobile apps and wearable devices available today are the following:

• Carely — Carely is a free, easy-to-use smartphone app for caregivers. The app facilitates care coordination, connecting families, friends, and healthcare providers. App users can share information about the daily schedule of an older adult with dementia as well as organize appointments and activities on the app’s calendar. Fostering communication between loved ones and caregivers, Carely promotes more companionship for older adults and seeks to lessen families’ stress.
• Care Predict — Individuals with cognitive decline may wear devices that keep loved ones informed about how they are doing. Care Predict provides this kind of technology, recording wearers’ daily patterns, such as how long they spend in bed or in the kitchen and revealing possible health issues family members may otherwise miss. For instance, spending all day in bed could indicate depression or other physical health issues.
  
  CarePredict’s Care Circle App alerts family members of changes and potential concerns. For example, when people living with dementia are at risk for falls, the technology notifies family members, and when falls occur, individuals can use the wearable device to contact family.
  
  The service requires an initial fee for the CarePredict™ @Home device plus a monthly subscription fee.

Activities for Dementia Patients and Loved Ones

Whereas tools such as wearable devices may support the health and safety of individuals with dementia, enrichment activities can also be beneficial. Engaging individuals with dementia promotes higher life satisfaction and better connections with family, friends, and other caregivers.

Caregivers looking to find things to do with their loved ones may subscribe to Connectivities, a monthly subscription box with activities for adults with dementia. Each kit contains eight activities with written and digital instructions, as well as exercise and music therapy videos.

Information for Caregivers

When their loved ones receive a dementia diagnosis, families may feel overwhelmed. Many resources can help those caring for people with dementia learn about the disease and caregiving strategies.

• The Savvy Caregiver is a free, nationally recognized training program for family members of people with dementia. The main program has six weekly two-hour video sessions — available in person or online. Those who have completed the training course reported less depression and distress.

The course covers:

• Understanding dementia diseases
• The elements of cognition
• Confusion in dementia
• Caregiver self-care
• Dementia’s progression
• Methods for helping with daily activities
• Decision making
• Community resources
• Family support

• Individuals caring for people with dementia can make an account on the Family Caregiver Alliance website, which provides a dashboard with resources all in one place and a list of services by state.
   
• The Alzheimer’s Association offers information specific to Alzheimer’s disease, which 50 percent to 80 percent of adults with dementia have.

Are You Missing Out on Benefits? Identify the Programs Available to Seniors Like You

Older adults have access to hundreds of federal and state benefits programs. Many retirees meet the requirements for these aids, yet do not know they are eligible and miss opportunities to receive assistance. Others can feel overwhelmed by complex application processes.

BenefitsCheckUp, the National Council on Aging’s online resource, helps elders identify the federal and state assistance programs for which they are qualified. The database is free to access, and the National Council on Aging ensures personal information people enter into the website remains confidential.

The resource provides older people not only with individualized reports of the assistance programs that cover them, but also the details they may need on each program before applying, including contact information for the agencies administering the assistance.

How to Obtain an Eligibility Results Report

To get personalized Eligibility Results detailing the benefits programs to which you may apply, enter your information into the database on the BenefitsCheckUp website, starting with your ZIP code. Then select the programs that interest you, which offer support on any number of services, including:

• Health care and medication
• Food and nutrition
• Housing and utilities
• Aging in place and in-home care
• Income
• Disability services
• Long-term care, such as skilled nursing facilities
• Discounts and activities
• Tax help
• Crisis, legal, and general assistance
• Veterans’ programs

Once you enter details such as your date of birth and marital status, BenefitsCheckUp generates a report outlining the specific programs accessible to you, and identifies what other information each program requires.

The Eligibility Results reports have several user-friendly features:

• If you make errors filling in details or want to provide additional information, the website allows you to go back and revise your answers.
• After the website creates an individualized Eligibility Results report, you can save it as a PDF and email it to yourself or a loved one.

Family and Caregivers Can Use BenefitsCheckUp to Assist Their Loved Ones

Family members or caregivers of older adults can also use BenefitsCheckUp to help their loved ones learn about benefits programs. They can enter an individual’s information into the website on their behalf and get a report, which they can use to support their loved ones in applying for state or federal benefits.

This easy-to-use resource can help older adults and their families alleviate the stress associated with applying to state and federal benefits programs. Visit the BenefitsCheckUp website to use the tool.

Hiring a Caregiver: Should You Employ One Yourself or Go Through an Agency?

Most seniors prefer to stay at home as long as possible rather than move into a nursing home. For many families, this means eventually hiring a caregiver to look after an aging relative. There are two main ways to hire someone: directly or through a home health agency.

Hiring directly
When you hire a caregiver directly, you need to consider all the tax and liability issues. As an employer, you are responsible for filing payroll taxes, tax forms, and verifying that the employee can legally work in the United States. If you pay $2,300 or more in wages in 2021 to any one employee, you need to withhold and pay Social Security and Medicare taxes. If you pay more than $1,500 in wages in 2021, you need to pay unemployment taxes. In addition, a private caregiver may not carry his or her own liability insurance or workers' compensation. If an accident occurs on the job, you could be responsible.

The benefit of hiring a caregiver directly is that you have more control over whom you hire and can choose someone whom you feel is right for your family. Another benefit is that hiring privately is usually cheaper than hiring through a home health agency. For more information from Caring.com on hiring a caregiver directly, click here.

The agency route
When you hire through a home health agency, the agency is the employer, so you don't need to worry about tax and liability issues. The agency takes care of screening the employees, doing background checks, and providing insurance. In addition, a licensed home care agency must provide ongoing supervision to its employees. It can help the employees deal with difficult family situations or changing needs. The agency may also be able to provide back-up if a regular caregiver is not available.

The downside of going through an agency is not having as much input into the selection of the caregiver. Another consideration is that caregivers may change or alternate, causing a disruption in care and confusion. To find a home health care agency near you, click here.

Online Survey Helps Older Adults Assess Their Financial Vulnerability

All older Americans are vulnerable to financial abuse, but there are certain circumstances that make someone more likely to be scammed. An online survey can help older adults (or their caregivers) assess their risk of being exploited based on how they make financial decisions. 

It is hard to ascertain the exact number of people affected by financial exploitation because studies show that elder abuse is underreported. However, one study found that monetary loss from financial elder abuse could be close to $3 billion a year. 

Experts have found that there are certain risk factors that can help indicate when someone is more likely to fall prey to a financial scam.  Peter Lichtenberg, director of the Institute of Gerontology at Wayne State University, found that older adults’ physical and mental health, along with their family and friend network, help predict their financial vulnerability. 

Lichtenberg has created a website (www.olderadultnestegg.com) with resources for professionals, older adults, and family members to assess whether someone is at-risk. He provides trainings for caregivers on how to determine if a loved one is experiencing cognitive decline and how to spot financial mismanagement. The website also includes a financial vulnerability survey that assesses a person’s risk of exploitation by asking 17 targeted questions. At the end of the survey, participants get a low, moderate, or high risk assessment. There are also resources to direct older adults and caregivers on how to get help. 

To take the survey and see the resources, click here.  

Online Survey Helps Older Adults Assess Their Financial Vulnerability

All older Americans are vulnerable to financial abuse, but there are certain circumstances that make someone more likely to be scammed. An online survey can help older adults (or their caregivers) assess their risk of being exploited based on how they make financial decisions. 

It is hard to ascertain the exact number of people affected by financial exploitation because studies show that elder abuse is underreported. However, one study found that monetary loss from financial elder abuse could be close to $3 billion a year. 

Experts have found that there are certain risk factors that can help indicate when someone is more likely to fall prey to a financial scam.  Peter Lichtenberg, director of the Institute of Gerontology at Wayne State University, found that older adults’ physical and mental health, along with their family and friend network, help predict their financial vulnerability. 

Lichtenberg has created a website (www.olderadultnestegg.com) with resources for professionals, older adults, and family members to assess whether someone is at-risk. He provides trainings for caregivers on how to determine if a loved one is experiencing cognitive decline and how to spot financial mismanagement. The website also includes a financial vulnerability survey that assesses a person’s risk of exploitation by asking 17 targeted questions. At the end of the survey, participants get a low, moderate, or high risk assessment. There are also resources to direct older adults and caregivers on how to get help. 

To take the survey and see the resources, click here.  

President Biden Proposes Billions in Increased Funding for Home Health Care

President Biden has introduced a plan to spend $400 billion over eight years on home and community-based care for the elderly and people with disabilities. The money would go to expand access to care and support higher-paying caregiving jobs. 

As the elderly population grows, our long-term care system is becoming increasingly strained. The AARP found that in 2020, more than one out of every five Americans -- 21.3 percent -- were acting as caregivers, either caring for a relative or a close friend. Many women have had to drop out of the workforce to care for aging family members. In the meantime, paid caregivers are typically underpaid and overworked, with one in six paid caregivers living in poverty. And our elderly population is only expected to grow: By 2030, one in five Americans is projected to be over 65.

Recognizing that the United States is “in the midst of a caregiving crisis,” President Biden has proposed boosting funding for home and community based long-term care as part of his $2 trillion American Jobs Plan. While the plan does not have specifics, it proposes to expand access to long-term care services under Medicaid that help people stay at home and avoid care in an institution. Currently, only nursing home care is mandated under Medicaid, with states providing care at home or in the community at their discretion. Waiting lists for home and community-based services under state Medicaid programs can stretch on for years, and only a small fraction of those who need care receive these services, according to Kaiser Health News.

Among other things, President Biden wants to extend the Money Follows the Person program, which is a federal initiative designed to move people out of nursing homes and into home-based care. The program provides grants to states to create innovative home and community-based programs. 

President Biden is also proposing that money be put toward creating well-paying caregiving jobs and that home health care workers be able to join a union and engage in collective bargaining. The White House states that this “will improve wages and quality of life for essential home health workers and yield significant economic benefits for low-income communities and communities of color.”

President Biden’s plan does not provide details, leaving It up to Congress to fill in the particulars when drafting its legislation. It is unclear how much of Biden’s proposed funding will make it into a final bill. 

To read about the American Jobs Plan, click here.  

For more about the home health care proposal, click here and here.

What is Long-Term Care and Who Provides It?

Long-term care is the care you need if you can’t perform daily activities on your own for an extended period of time. There are a number of different ways that long-term care can be provided. 

Most long-term care involves assisting with basic personal needs rather than providing medical care. You are usually determined to need long-term care if you need help with two or more “activities of daily living” (such as bathing, dressing, eating, and going to the bathroom). Family members usually provide long-term care to start, but as an illness escalates paid care may become necessary. 

The following are the types of long-term care:

• Home care from family member. The most basic form of long-term care is when a family member becomes the caregiver. It can involve simple tasks like buying groceries or more complicated ones like bathing and dressing. Sometimes family members can be paid for their work.
• Home care aide. Home care aides provide companionship and socialization and assist with meal preparation, housecleaning, laundry, shopping, and errands. They are also called homemaker or chore aides.
• Home health care aide. Health care aides provide personal care (bathing, grooming, etc.), assist with range-of-motion exercises, provide some medically-related care (empty colostomy bags, dress dry wounds, check blood pressure, etc.), and provide assistance with housekeeping and errands. They are often referred to as personal care assistants
• Adult day care. Adult day care allows family members to get a respite from caregiving. In general, there are three types of centers: those that focus on social interaction, those that focus on health care, and special Alzheimer's care centers.  
• Assisted living facility. Assisted living facilities are a housing option for people who can still live independently but who need some assistance. Depending on the facility, that assistance may include help with meal preparation, housekeeping, medication management, bathing, dressing, transportation and some nursing care. Residents usually live on their own, in small apartments. Despite the emphasis on independence, supportive services are available 24 hours a day in order to provide different levels of help with activities of daily living. The level of medical supervision depends on the facility.
• Nursing home. Nursing homes are the highest level of long-term care. They provide 24-hour care to residents. Staff provide help with daily activities such as feeding, dressing, and bathing along with medical care and physical, occupational, and speech therapy.

Costs for care can vary widely, from a few hundred dollars a week to pay for coverage when family members are at work to $300,000 or more a year for around-the-clock home care or care in the most expensive nursing homes, perhaps with private aides hired on the side. 

Long-term care costs, whether at home, in assisted living or in a nursing home, are paid primarily from three sources: out-of-pocket, Medicaid, and long-term care insurance. Medicare, the health insurance for people over age 65, only pays for up to 100 days of skilled nursing facility care following a hospitalization, and only for so long as the patient is deemed to need skilled care. It will also pay for skilled care at home -- in theory indefinitely, but this may take some advocacy.

Can You Visit Nursing Home Residents After They are Vaccinated?

COVID vaccines are starting to roll out to nursing homes across the country, signaling the beginning of the end of the pandemic. Once your loved one has had both doses of the vaccine, you may be able to visit, but precautions are still necessary. 

The federal government entered into a partnership with CVS and Walgreens to deliver the vaccines to nursing home residents, who have high priority for being vaccinated, according to the Centers for Disease Control and Prevention (CDC) guidelines. The pharmacy companies began administering vaccines in 12 states in mid-December and will expand to 36 states before year’s end. Both the Pfizer the Moderna vaccines require two shots three or four weeks apart. 

Restrictions on nursing home visitors vary from state to state, with some states limiting them and others allowing more visitation. Currently, the CDC recommends that nursing homes allow indoor visitors if the facility has had no COVID cases for 14 days. Once vaccines have been distributed, restrictions may ease further. 

According to the New York Times, experts recommend that to be safe, you should wait until two weeks after your loved one gets the second dose of the vaccine before visiting. The safest time to visit would be after all the residents and staff have been vaccinated and you receive the vaccine as well. Even if you and your loved one are vaccinated, you should still wear a mask when visiting. As long as COVID is spreading in the community, mask wearing is still recommended. 

Noting that the vast majority of older adults with chronic conditions live at home, long-term care consultant Howard Gleckman asserts that these vulnerable adults along with their caregivers should also be vaccinated as soon as possible.  As states ration their limited initial supplies of the vaccines, Gleckman says, "they should remember the millions of people who are at high risk of severe illness or death from the virus, but who are living at home."

For more information about the vaccine rollout to nursing homes, click here and here.

Caregiver Contracts: How to Pay a Family Member for Care

Although people are willing to voluntarily care for a parent or loved one without any promise of compensation, entering into a caregiver contract (also called personal service or personal care agreement) with a family member can have many benefits. It rewards the family member doing the work. It can help alleviate tension between family members by making sure the work is fairly compensated. In addition, it can be a be a key part of Medicaid planning, helping to spend down savings so that the elder might more easily be able to qualify for Medicaid long-term care coverage, if necessary.

The following are some things to keep in mind when drafting a caregiver contract:

• Meet with your attorney. It is important to get your attorney's help in drafting the contract, especially if qualifying for Medicaid is a goal.
• Caregiver's duties. The contract should set out the caregiver's duties, which can be anything from driving to doctor's appointments and attending doctor's meetings to grocery shopping to help with paying bills. The length of the term of the contract is usually for the elder's lifetime, so it is important to cover all possibilities, even if they are not currently needed. The contract can continue even if the elder enters a nursing home, with the caregiver acting as the elder's advocate to ensure the best possible care.
• Payment. Payment to the caregiver can either be made with a lump-sum payment or in weekly or monthly installments. For Medicaid purposes, it is very important that the pay not be excessive. Excessive pay could be viewed as a gift for Medicaid eligibility purposes. The pay should be similar to what other caregivers in the area are making, or less. To calculate a lump-sum payment, take the monthly rate and multiply it by the elder's life expectancy. (Note that some states, Georgia for example, do not recognize the ability to create a lump sum contract based upon life expectancy.)
• Taxes. Keep in mind that there are tax consequences. The caregiver will have to pay taxes on the income he or she receives.

Other sources of payment. If the elder does not have enough money to pay his or her caregiver, there may be other sources of payment. A long-term care insurance policy may cover family caregivers, for example. Also, there may be state or federal government programs that compensate family caregivers. Check with your local Agency on Aging to get more information.

Caregivers Are Getting Younger, Making Planning for Long-Term Care Even More Important

As baby boomers age, more and more millennials are becoming caregivers. Many are taking on this role while just getting started in their own lives, leading to difficult decisions about priorities. Proper planning can help them navigate this terrain. 

The term “sandwich generation” was coined to refer to baby boomers who were taking care of their parents while also having young children of their own. Now millennials are moving into the sandwich generation at a younger age than their parents did. According to a study by the AARP, one in four family caregivers is part of the millennial generation (generally defined as being born between 1980 and 1996). And a study by Genworth found that the average age of caregivers in 2018 was 47, down from 53 in 2010. Gretchen Alkema, vice president of policy and communications at the SCAN Foundation, told the New York Times that the rise in younger caregivers may be because baby boomers had kids later in life than their predecessors and many are divorced, so they do not have a spouse to provide care. 

Younger caregivers have different challenges than older caregivers. They may have younger kids to manage and careers that are just beginning, rather than established. In addition, more millennial men are caregivers compared to previous generations. The AARP study found that millennials spend an average of 21 hours a week on caregiving, and one in four spend more than 20 hours per week. More than half (53 percent) also hold a full-time job in addition to their caregiving duties and 31 percent work part time. Younger caregivers are also less likely to discuss their caregiving duties with their employer than previous generations.

Managing caregiving duties, family, and employment is stressful. Having plans in place can help alleviate some of the stress, and the earlier you plan ahead the better. The following are resources you can use to put together a long-term care plan: 

• Long-term care insurance can help lessen some of the costs of caregiving if it is purchased early enough. 
• A geriatric care manager can help determine what care is needed and where to find resources. 
• An elder law attorney can draft essential documents like a power of attorney and a health care proxy, as well as advise you on available benefits, such as Medicare, Medicaid, or Veteran’s Administration benefits. 
• Adult day care can give caregivers a much-needed break. 

Having resources in place will help, but you also need to be mindful of when you need help. Recognize when you are being stretched too thin and consider your priorities. If possible, talk to your employer about flexible hours. Consult with other family members and do not be afraid to delegate tasks. Take care of yourself by eating well, exercising, and finding time to relax. For some tips on handling the caregiver/life balance, click here.

For an article on the unique caregiving challenges facing the women of Generation X, click here.