Shining a Light on Those Who Provide Dementia Care

younger woman hugging elderly woman Alzheimer’s takes a devastating toll, not just on those with the disease, but on their families. The effects of this disease, emotional as well as financial, are felt by many in our society. Caring for relatives suffering from this debilitating condition is truly a labor of love, and unfortunately, comes with high costs. This month, as we observe National Family Caregiver Month, we look to shine a light on some of the often overlooked aspects of caring for someone with this disease.

Today, more than 15 million Americans provide unpaid care for more than 5 million people living with Alzheimer’s or other dementias. It is estimated that in 2016 those caregivers delivered 18.2 billion hours of assistance, often at the cost of personal and financial sacrifices, according to a survey by the Alzheimer’s Association for the 2016 Alzheimer’s Disease Facts and Figures. A large percentage of those who are caregivers of someone with Alzheimer’s cut back on their own expenses (including food, transportation and medical care) to pay for dementia-related care of a family member or friend. Many caregivers reduce or quit working to provide care for a loved one, resulting in a loss of income.

Studies show that people age 65 and older survive an average of 4 to 8 years after a diagnosis of Alzheimer’s dementia, and some live as long as 20 years with Alzheimer’s. And with no known prevention, cure, or way to slow the disease’s progression, the impact on our nation and our caregivers continues to grow.

The high cost of Alzheimer’s on caregivers could be even higher; however, Social Security benefits help offset some of those costs of care and services. Traditional health insurance plans and Medicare do not typically cover long-term nursing home stays that people in the late stages of the disease often require. Social Security is used across the country to pay for critical care services for individuals living with dementia.

Since 2010, Social Security has included Early-Onset Alzheimer’s as a Compassionate Allowances condition for the Social Security Disability Insurance program, providing access to expedited review of Social Security benefit applications for those under the age of 65. The Alzheimer’s Association was proud to advocate for this inclusion for its constituents and others affected by this disease.

While we continue to work towards a cure and treatments that will both improve quality of life and reduce costs, it is important to have access to affordable support and services. This includes providing support for those who provide care. To learn more about how Social Security disability insurance works, visit Social Security’s disability page. You can also visit Social Security’s Compassionate Allowances site to learn more about Alzheimer’s and other medical conditions that allow expedited processing of Social Security disability benefits.

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41 thoughts on “Shining a Light on Those Who Provide Dementia Care

  1. If an individual is now drawing social security and has early onset Alzheimer’s, might that affect the benefits received?

    • Hi Dixie. Individuals can apply for Disability Benefits before they reach their full retirement age. Disability payments are established at the highest rate possible, meaning you could get a higher monthly benefit amount. We can continue paying your retirement benefits while we consider your application and wait for a medical decision.
      We pay disability benefits through two programs: the Social Security disability insurance program (SSDI) and the Supplemental Security Income (SSI).
      SSI is a needs based disability program that pays benefits to people with limited income and resources who are disabled, blind, or age 65 or older. To be eligible for SSI, we count your total household income.
      In addition to meeting our definition of disability, you must have worked long enough–and recently enough–under Social Security to qualify for disability benefits. For more information and to see if you should apply for disability benefits, call our toll free number at 1-800-772-1213. Representatives are available Monday through Friday, between 7 a.m. and 7 p.m. Generally, you will have a shorter wait time if you call later in the week. Thanks!

  2. My husband is 74yrs, dx with FTD at age of 66, already receiving SS, I tried to get SSD for him was told unable to . Now 10-11 yrs later I am paying for social day care, transportation, I may have to sell my home to help him with his care. He is now being cared for at home, I will not be able to continue this for much longer, I am 73, retired RN. Any suggestions for help?

  3. But people found disabled because of suffering from a Compassional allowance condition don’t get Medicare coverage any sooner, do they? They still have to have received SSDI monthly cash benefit for 24 months, don’t they?
    So, no health care for Alzheimer’s for 24 months (after the 5 month waiting period, so really 29 months of disability before becoming eligible for Medicare coverage). All of the SSDI benefit will be spent on medical care or the person get what charity care that health providers feel like providing.

    • Correct. Individuals become eligible for Medicare after they receive disability benefits for 24 months. We start counting the 24 months from the month you were entitled to receive disability, not the month when you received your first check.

  4. Dear sirs/madame:
    I have been taking care of my husband afflicted with Alzheimers for over 7 years and recently put him in a nursing facility. I just got approved by Medicaid but don’t understand any of the paperwork: that which involves my budget & allowances etc. Can I get an appointment to have an officer of Social Security to explain? How do I do that? Help please.

  5. I was the primary caretaker for my Mom who had dementia from 11/2009 to 12/2017, she passed away on Dec 9th.
    In Dec 2016 at age 62 I started receiving SS.
    From May 2017 to Dec 2017 {7 months} I was paid thru the medicaid CD-PAP program as her primary caretaker while also receiving my SS benefits.
    I just learned that I earned more than the maximum allowed for 2017. I have been told by SSA that I will lose approximately 2 monthly SS checks in 2018 if I do not payback the difference of over $3,000 in 30 days.
    My question: Is there an exemption from this penalty since I was my Mom’s primary caregiver and SS is my sole means of income. Thank you.

  6. My wife suffered two life threatening strokes in 2009. She was 58 at the time. Because she retired with a company pension at age 50 due to severe migraine headaches she was unable to qualify for SSDI. We are now almost 9 years post stroke and the dementia (memory loss) has worsened with each passing year. Since I am her caregiver and have P.O.A. in these matters are there and avenues I should explore on her behalf.

      • We are sorry to hear of your wife’s medical situation, Alfred. Social Security disability benefits automatically change to retirement benefits when disability beneficiaries attain their full retirement age. If a person has reached his or her full retirement age and is receiving Social Security retirement, they will not be eligible for disability benefits.
        Some individuals may be eligible to receive social services from the state in which they live. You can get information about services in your area from your state or local social services office. Or you can visit the U. S. Department of Health and Human Services web page for more information. We hope this helps!

  7. I need to know ASAP how I can put an elderly male into a living facilities that has been diagnosed with Dementia by a medical physician. With behavior problems such offensive language and actions. Lack of Bowel Control. A contact number is 301-577-1263

  8. My husband he is diabetic and Alzheimers, my son is taking care of him that is why he is not working will he be able to get payment for taking care of this patient.

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