Disability

Relief for Thousands Suffering from Alzheimer’s Disease

November 29, 2016 • By

Reading Time: 2 Minutes

Last Updated: August 19, 2021

woman and husband posing for a pictureToday, there are nearly 5.4 million Americans living with Alzheimer’s disease. While most people associate the disease with old age, there are 200,000 Americans under the age of 65 living with it today. As with all forms of the disease, Early Onset Alzheimer’s is a progressive, terminal disease, which cannot be prevented, cured or even slowed.

Since the onset can occur in people as early as their thirties and forties, it often strikes during an individual’s prime working years, and as the disease progresses it prevents gainful employment. As a result, individuals are coming to grips with a devastating diagnosis all while losing employment and the salary and benefits that come with being employed. These individuals and their caregivers then must figure out how they will pay for their care.

Thankfully, since 2010 Social Security has helped by adding Alzheimer’s disease to its Compassionate Allowances Initiative. The initiative identifies debilitating diseases and medical conditions so severe they obviously meet Social Security’s disability standards. Compassionate Allowances allow for faster payment of Social Security benefits to individuals with Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia.

The inclusion of Alzheimer’s disease in Social Security’s Compassionate Allowances has had a profound impact on the Alzheimer’s community, helping thousands of families including Tom and Julie Allen. Tom was looking for a way to help manage the costs of Julie’s Alzheimer’s care, since his retirement and two part-time jobs were not enough to cover the large costs of Alzheimer’s disease. Through the Alzheimer’s Association and Social Security, he was able to apply for disability benefits for Julie.

Social Security benefits are very important to individuals with early-onset who are unable to work and have no other source of income. At the Alzheimer’s Association, we hear from family caregivers about the challenges they face paying for care. As was the case with Tom, the financial complications fall to the caregiver as well as finding the day-to-day care solutions. That is just one of the reasons why we celebrate November as National Family Caregiver Month and we take time to honor the 15 million caregivers for those living with Alzheimer’s disease.

To learn more about how Social Security disability insurance works, visit Social Security’s disability page and visit Social Security’s Compassionate Allowances page nyhttps://ssa.gov/compassionateallowances/ to learn more about other medical conditions under the Compassionate Allowances Initiative. The Alzheimer’s Association is also here to help, visit www.alz.org (see external link disclaimer below) or call our 24/7 Call Center at 1-800-272-3900 for additional support.

You are exiting the Social Security Administration's website. SSA cannot attest to the accuracy of information provided by such websites. If we provide a link to such a website, this does not constitute an endorsement by SSA or any of its employees of the information or products presented on the non-SSA website. Also, such websites are not within our control and may not follow the same privacy, security or accessibility policies. Once you visit such a website you are subject to the policies of that site.

About Robert Egge, Alzheimer’s Association, Chief Public Policy Officer

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  1. tony

    When will Social Security tell us the exact amount we will pay for Medicare Part B in 2017.
    https://www.medicare.gov/your-medicare-costs/part-b-costs/part-b-costs.html

    I heard that Obamacare might lead the way to privatizing Medicare. I use to work for a local government that was self insured. Being self insured was costing them more monew. They had to remain self insured because many of the employees had a pre-existing condition and couldn’t get private insurance to cover them. When Obamacare eliminated pre-existing conditions, everyone had to go to the private insurance.

    Original Medicare is similar to being self insured. Billions of dollars is lost to fraud with Original Medicare. It is time to force everyone to the private Medicare Advantage Plans and eliminate Original Medicare if it saves Medicare money. Their pre-existing conditions should be covered and the Medicare Advantage Plans by law covers everything Original Medicare covers.

  2. smh

    Now that the full retirement age is over 65, it’s not accurate to say that people with Alzheimer’s all qualify for a compassionate allowance. Only early onset Alzheimer’s is a CA disorder, meaning under 65. A lot of people on SSDI (over 5%) are 65 and up. SSA should update the CA list to say all Alzheimer’s, not just early onset.

  3. MIchael W.

    Funny you make no mention of providing a stipend for those relatives or individuals who provide homecare for 80 year old individuals who have been diagnosed with Alzheimer’s. I have written SSA and SSA has refused to acknowledge or provide me a citizen with any type of relief. Instead you want to burden people with paperwork and other stupid requirements. Its easy for you to write the main Hospitals here in Atlanta Georgia to find out if anyone is telling the truth. Keep on being stubborn and dam nasty

    • kathy

      Iwould like to know what being black has to do with it? If you are white you don’t have to do paperwork or you don’t have any requirements? Well, that sounds pretty prejudice and damn nasty to me.

    • Chris

      I am going to assume that you are a caregiver or someone you know for someone with Alzheimer’s Mr. Wilson. I know what you and others are going through caring for someone with this horrid wasting disease. My father and us kids helped take care of my Mom at home til the end and it really does take a toll. A mixed blessing in disguise was when she was diagnosed with a fast growing cancer and it took her before the last stages of Alzheimers. The help you are seeking is through DSHS or if the person or spouse with the Alzheimer’s served in the military there is also additional help through the VA and you would need to contact them. My father also attended support groups to help cope and get other info and your local hospital or Aging Services probably has information about those. SSA has no program to help with the caregiving and that may be why nobody has responded to you but they should have at least responded and provided you with the info that I have given you as referral info. I wish you well… it is a very long and difficult road and so heartbreaking.

  4. Phyllis B.

    That is deadly disease of the mind. Sometimes I wander how it occur to the body plus it’s slow modification to end processes of life. The best treatment that I can think of..smoke you herb or take your medication properly_maybe even drink a shot of france whiskey or boubon.I read in magazine where whiskey don’t damage the brain cells but help the brain cells build to enteract with the strong ones…read ‘Healther Living..I believe its publish by better homes. I wish the Board of Medicine
    would update the Subpt.A and Subpt B-especially for children due to rise of healthcare.They are being to have health related issues that have not been adding to some of the listing. such as …types of cancer,type of diseases that can be both viral or bacterial, types of disorders.ADHD is the most vasive for children and adults even though children complication I believe got added to the book in the early 90’s.We as individuals want our Chief Health Advisor to keep us inform about plans,premiums,and new preventive services.

  5. Anna

    My husband has early on set Alzheimer’s. The cost of the medicine is bankrupting us. Even with prescription drug coverage it’s more than we can afford. What can a person do??

    • D. L.

      Have you looked into ordering meds through Canada?

    • Dana

      Also a lot of drug companies offer financial assistance if you meet the financial requirements. They will reduce your costs of the drugs. Your Dr. should be able to get you information on this. Or a Pharmacist. Or go to the drug manufacturer’s website. My girlfriend did this with her depression medications and she got them for $5/mo after the company discounted them.

    • Ray F.

      Hi Anna. If you meet certain income and resource limits, you may qualify for Extra Help from Medicare to pay the costs of Medicare prescription drug coverage. If you don’t qualify for Extra Help, your state may have programs that can help pay your prescription drug costs. Contact your Medicaid office or your State Health Insurance Assistance Program (SHIP) for more information.

  6. John B.

    I forget many things, but I’m lucky i don’t have that yet.

  7. Chee H.

    Hope that I can had had some articles on my Social Security Benefit that I am entiltle for as ***-**-**** card holder.

  8. Dawn

    Great news for so many people struggling!

  9. Tony S.

    Hospitals & Asylums

    Sanders, Tony J. Social Security Amendments of January 1, 2016. Hospitals & Asylums HA-6-6-16 http://www.title24uscode.org/ss1.htm

    Dear Robert Egge, SSA Chief Public Policy Advisor:

    Carolyn Colvin must stop being a grinch in December after Vilsack’s SNAP harvest and give us our 6% COLA in 2017 to make a 3% annual COLA law against attrition to 2.7% average CPI in 2018 to comprehend Sec. 215(i) of the Social Security Act 42USC415(i) for the first time. Congress may not be blamed anymore since their OASDI tax contribution statute was hacked or amended to stop being divided between DI and OASI Trust Funds this year the 2.37% DI tax rate is unprinted on the paystub. To do it right SSA must for ourself get the tax rate right 2.4% DI 10.0% OASI 2017 going down to 2.2% DI 10.2% OASI in 2018 and for the intermediate term. I can either be the Social Security Commissioner who keeps the national accounts for the alcoholic Acting Social Security Commissioner who must purchase and publish my Social Security Amendments of January 1, 2016 and First Annual Summer Solstice Report http://www.title24uscode.org/ss1.doc

    Please forget the previous blog postings regarding (1) a 0.3% COLA and (2) a $127,700 limit on taxable income in 2017. The DI Trust Fund has enough to pay a 6% COLA in 2017 and have better than 20 percent trust fund ratio and everyone wants to make a small withdrawal from OASI and then in 2018 we will make the 3% COLA law and have the intermediate tax rate of 2.2% DI and 10.2% OASI. 2017 should be adjusted to 2.4% DI 10.0% OASI so it an be printed on paystubs. OASDI tax contribution statute has been amended or hacked so that burden of proof is not upon Congress as insinuated in the previous article(s). The OASDI tax rate is the responsibility of the Social Security Commissioner and that is equally me and my Social Security Amendments of January 1, 2016. Let us not be unequal this December when Carolyn Colvin gives us a 6% COLA in 2017 and 3% COLA every year thereafter to stay ahead of 2.7% average inflation. Denial of a 3% COLA two years in a row constitutes deprivation of relief benefits under 18USC246, the 11th amendment under 42USC2000d-7 and Sec. 204(c) of the Social Security Act 42USC404(c). Elect me Commissioner or let me elect you Commissioner this December 2016 of the 6% COLA to make a 3% COLA the law beginning in 2018.

    Your beneficiary,

  10. christian

    so i see all these disabilitys and SCOLIOSIS is not one wow

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