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.


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

  1. I’m in the West Kendall Baptist hospitall ,
    I have disnees when I way up or standup
    Or when I sleep and I move different ways
    I disnees I don’t know what time, I left

  2. I guess you can say my mom was lucky in that my dad was a lifer in the army and left her with a house and check once a month form SS and VA .. so financially we won’t have to worry to much but it is for sure a labor of love, some days it is very unbearable for my sister i tell her go out for a few hours i can deal with the hate on those day that seems like hate buts not the. Disease all ways picks on one person, i mean that one person all way gets the hate when a attack starts that can last for hours and all we can do is not let her hurt her self an let her say what she will . by attacks i mean for no reason at all they start saying hateful stuff like get out my house , I ‘m gonna drive now, it got so bad one time to stop her from driving we called the cops and thy talked to her DR and then told she couldn’t drive any more . few tips don’t ague with them , don’t say no .say some thing like may be later or well look into it NO seems to be a real negative with the Disease an can make attacks last for hours were learning’s as wee go an taking her to a dementia Dr sorry don’t know what else to call them we tell her a memory DR that seems ok with her to see about getting some in home help give us a break some days we were told if the Dr thinks we need it, it is covered by medicare and tricare for life .bear with it if you love them it usually stops at night fall no idea why but when night hits it all stops. Me and my sister take care of her in her own home we live here if we didn’t she would be in a home i told her one time this is her home i won’t put her in a home … sorry about my bad typing it can be hell some days were lucky in that she has enough money and insurance for life from the army for her because of my dad … he died at 45 from service rated problems . hope i made sense .

      • I’m Disable and did apply for benefits after leaving the country, and isn’t getting the benefits I work over the years, (I need to talk with someone,

        • I’m Disable and did apply for benefits after leaving the country, and isn’t getting the benefits I work over the years, (I need to talk with someone, S.S.#*** – ** – ***.D.O.B.7-4-1956,PHONE NUMBER 18764728685,

          • Just a reminder – We do not have access to personal information, therefore, we do not do direct messaging in this venue. Please be cautious about posting personal information on social media and communicating personal information via email.

  3. on yea the only reason me and my sister can live here is were both disabled but i do feel for those not so lucky and who can’t stay home an give the kind of care a Alzheimer’s victims needs …

  4. May pay my benefits of ssa by social security at us embassy in manila ,Philippine, thank sir for assistance my case!

    • Unfortunately and because of security reasons we do not have access to personal records in this blog. Also, you cannot create a “my Social Security” account if living outside the United States. The “my Social Security” authentication system requires address verification as one of the essential criteria for issuing an account. At this time you must have a U. S. mailing address to create or to access your online account from outside the United States. People with APO/FPO/DPO addresses can create an account overseas, but our system does not support registration and account creation for users with a foreign address yet. When living abroad please contact your local U.S. embassy or consulate for any assistance related to your Social Security benefits. Our Office of International Operations home page provides more information to assist our customers living abroad. We hope this information helps.
      Just a reminder – please be cautious about posting personal information on social media channels. Thanks!

  5. I Tamika Milledge want to get approved for ssi for the first time in so long of trying I have no income 0 please help Lord Jesus to receive my SSI

  6. I have been taking care of my father since my mother as passed away. I would like to know how to become a caregiver to get compensated for taking care of him?

    • Hi Teresa. Some individuals may be eligible to receive social services from the state in which they live. These services include Medicaid, free meals, housekeeping help, transportation or help with other problems. You can get information about services in your area from your state or local social services or welfare office. Or you can visit the U. S. Department of Health and Human Services web page for more information. We hope this helps!

  7. 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!

  8. 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?

  9. 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.

  10. 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.

  11. 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.

  12. 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!

  13. 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

  14. 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.

  15. 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!

  16. 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

Leave a Reply to AKA Cancel reply

Your email address will not be published. Required fields are marked *