the hands of an elderly man

Seeking help for costs and care of family members with dementia

Dear Rita: My partner is only 66 and has early onset Alzheimer’s. For several years, he has needed custodial care day and night. To provide this for him, I am spending $120,000 a year on non-medical care. While I know I am lucky to have these funds available, if I keep paying at this rate, our entire life savings will be depleted in two years. How am I going to keep caring for him and also provide for myself later in life? — J.R., Oakland

Dear J.R.: While there is no cure for Alzheimer’s disease and other dementias, it is incredibly important that our society develop better support for caregivers, especially low-income people. We need targeted interventions and public policies to address these issues. We need to support the financial well-being of family caregivers, and limit the extent to which this role contributes to an increased risk of poverty and long-term financial insecurity in later life. As more and more baby boomers reach retirement age and face the range of unexpected health complications, I am hopeful that some of these shifts will begin to happen.

Few of us are fully prepared for the care and costs that often come with cognitive decline. As dementia progresses, individuals lose their ability to function independently, which leaves their partner or caregiver responsible for almost all aspects of their daily living. A person with moderate to severe dementia may require 24-hour supervision and assistance with bathing, dressing, grooming, feeding and toileting. Some individuals with dementia lose their ability to speak, and many face difficulties related to gait, placing them at high risk for falls. All of this may take place while the person remains physically healthy, which means that they do not meet the criteria to receive care in a skilled nursing facility. It sounds like this may be the case with your partner, forcing you to pay out of pocket for custodial care.

Many people incorrectly assume that Medicare and personal savings will be enough to cover the diseases of aging. However, Medicare does not cover the costs of nursing homes, assisted living facilities, memory care and non-medical home care. Medicaid, the government health insurance for low-income individuals, might help once your partner meets the standard of poverty. However, to use Medicaid for long-term care, your partner must meet the requirements for a skilled nursing level of care. If a person has dementia issues but is physically healthy, Medicaid will not cover long-term care needs.

Another option available to those who can afford it is long-term care insurance, which is designed to pay for skilled nursing care, assisted living or basic in-home assistance. However, these insurance policies are expensive, premiums rise as you age and the coverage may be limited. It can be a good investment early on in life, but because a lot of people simply do not anticipate their needs in later life, many choose not to purchase it.

Many people incorrectly assume that Medicare and savings will cover diseases of aging.

You are clearly not alone in facing the financial stressors that come with caring for a partner with dementia. The Alzheimer’s Association estimates that families spent $60 billion for the care of their loved ones in 2018. As the number of older Americans climbs, so does the prevalence of dementia — and the financial crisis facing families will only continue to grow. In the U.S., about 200,000 people are currently living with early onset Alzheimer’s. The average lifetime cost of care for a person living with dementia was $341,840 in 2017, with 70 percent of this cost absorbed by families through out-of-pocket payments and the value of unpaid care.

One possible change that will bring some relief to families is currently being implemented by the Centers for Medicare and Medicaid Services (CMS). Starting this year, Medicare Advantage plans can now offer supplemental health care benefits. These benefits may cover services that prevent or care for an injury, or lessen the likelihood of requiring emergency or health care. Therefore, several in-home services, such as home health aides, personal care assistance, palliative care, and meal delivery, may be available through one’s Medicare Advantage plan. Other benefits may include adult day care, non-medical and medical transportation, and home modifications to aid aging in place. While this may ease the financial stressors of caring for your partner, it is not a complete solution.

The honest answer is that there just isn’t a strong enough social safety net for families in your situation. Low-income families are at particular risk for significant financial challenges, and even people who have saved their entire lives and have decent retirement accounts can find that those funds get disbursed much faster than anticipated. To me, this points to the need for better education in general about the costs of care in later life, as well as the need for more streamlined social services.

While I wish I could provide a solution that would take away your worries, I can provide some guidance. Building a support network is incredibly important. As a caregiver, you may be feeling forced to neglect your own physical, emotional or spiritual needs. I encourage you to research community resources in your area and connect with others who may share your experience.. An app that you may find helpful is CaringBridge, which allows caregivers to coordinate care, receive support and share updates on a relative’s condition.

Another important option is respite care. In order to provide the best care you can for your partner, you will need a break every now and then to take care of yourself. Some local organizations have family caregiver support programs that are worth checking into. JFCS East Bay has a respite program, as does the Family Caregiver Alliance. Caring Hands, a volunteer program of John Muir Health, can also provide some respite. In the region served by the S.F.-based Jewish Family & Children’s Services, the Seniors At Home program offers respite care as well as counseling for family members.

Rita Clancy

Rita Clancy, LCSW, is the director of adult services at Jewish Family & Community Services of the East Bay. Have questions about your aging parents? Email rclancy@jfcs-eastbay.org or call (510) 558-7800, ext. 257.