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

  1. I turned 66 this year, but I did not chose to apply for Social Security Benefits yet. But on my personal page, it is still showing the amount for full retirement benefit. Why is it not showing the monthly increase based on the .667? And come this January 2019, will the 2.8% COLA apply to the added monthly increases amount even though it is not being reflected on my personal page?
    Thank you for your assistance.

    • Hello Linda. You will automatically earn Delayed Retirement Credits if you decide to delay your retirement beyond your full retirement age. Delayed retirement credits are added for months of non-payment between full retirement age and age 70. The yearly rate of increase for those born in 1943 or later is 8%.
      The 2.8 percent cost-of-living adjustment (COLA) will begin with benefits payable to Social Security beneficiaries in January 2019.
      For further assistance call us toll-free at 1-800-772-1213. Representatives are available Monday through Friday, between 7 a.m. and 7 p.m. Thanks!

  2. Need information on how to get my mother in memory care. She has been diagnose with dementia and it is getting worst. I need to put her in a facility that has memory care. My problem is that my mother retirement is 3400.00 a month and the facilities I have tried to put her in charges 6000-7000 a month and with her stoma it adds another 1000 a month. I was told that she makes too much money for Medicaid or Medicare help however, she doesn’t make enough for private care. I do not know what to do. She is 78 and is now in a assistance living facility that charges 6000 month. Her IRA has been depleted and there just isn’t any more money. What program can a apply for to help offset the balance from her retirement. Thanks

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    • Hi Dawn. Your brother may be eligible to receive social services from the state in which you live. These services include free meals, housekeeping help, transportation, or help with other problems. To get information about services in your area, and find out if your brother qualifies, you will need to contact your state or local social services or welfare office. If your brother has not applied for Social Security disability benefits yet, we encourage him to do so immediately. Here some information on how to apply for this benefits. We hope this helps.

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