The Gayle Wells Foundation for Early Onset Alzheimer’s & Care is here to walk this journey with you and your loved ones. We can provide you with “What to Expect” tips and suggestions as you and your loved ones notice new symptoms. We can assist in finding local community and medical services within your area. We can provide additional ideas and suggestions for home safety guidelines, behavioral situations, personal care activities, and other concerns that you and your loved ones encounter as the disease progresses.
One of the most important matters to take care of upon receiving a diagnosis of early onset Alzheimer’s disease is to plan for your financial, medical, and estate needs. It is beneficial for you and your loved ones to have these conversations to ensure that your wishes are carried out and that your assets are protected.
Financial and legal planning allows you to assess your financial situation so that you know what resources you have with respect to your medical and long-term care needs.
It is a good idea to organize all of your financial and legal documents, as well as other important information (i.e. insurance policies, Social Security information, bank account information, monthly and/or outstanding bills, stock and bond certificates, wills, etc.) as you begin to assess your financial situation.
If you are employed at the time of your diagnosis, you can refer to your employee benefits handbook or check with the benefits/human resource specialist at your place of employment, to find out what benefits you are entitled to receive.
If you have private health insurance, contact your health insurance company to inquire about available benefits and coverage. If you will be applying for new insurance coverage, please be sure to find out how soon Alzheimer’s disease expenses will be covered under the new insurance policy.
Medicaid eligibility and benefits vary from state to state. Therefore, it is highly recommended that before you consider applying for Medicaid, you speak with an elder law attorney or estate planning specialist. Each state has very specific laws regarding giving away assets to family members, so you want to make sure you speak with an expert in this area so that you do not jeopardize any of your assets.
The Social Security Administration (SSA) has added early onset/younger-onset Alzheimer’s to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
Social Security disability benefits (SSDI) are paid to individuals who have worked for enough years and have a condition that is so severe that they are not able to work any longer. Administered by the Social Security Administration, SSDI makes monthly payments to eligible disabled individuals and is a significant benefit for individuals with early-onset Alzheimer’s disease. In addition to a monthly payment, it serves as entry to Medicare benefits for those under the age of 65. Family members (e.g., spouses and minor children) may also be eligible for benefits based on the applicant’s work record.
Supplemental Security Income benefits (SSI) are paid each month to individuals who are aged, blind or disabled and have limited income and resources (assets). The “disability” criteria for SSI are the same as for SSDI benefits. Unlike SSDI, eligibility for SSI is not based on prior work experience. In addition, in most states, individuals who receive SSI are also automatically eligible for Medicaid (medical assistance) benefits.
The Compassionate Allowance Initiative finds that individuals with certain diseases/conditions eligible for Social Security disability (SSDI) and Supplemental Security Income (SSI) benefits by the nature of the disease. While applicants still have to meet other SSDI criteria and/or SSI criteria, when it comes to the disability criterion, they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for SSDI and SSI benefits.
The Alzheimer’s Association has created a wonderful checklist for the application process: Checklist and Links to Apply for Social Security Disability Benefits & Supplemental Security Income benefits: www.alz.org/documents/national/ssdi_checklist.pdf
If you have served in the armed forces, regardless of the branch or length of service, you may be eligible for veterans benefits that could help with your expenses. Click on the following link to determine eligibility and/or to contact your local Veterans Administration office: http://www.va.gov/opa/persona/index.asp
Proper legal and estate planning helps to ensure your medical and financial needs are met. It is important that these documents be finalized as soon as possible so that you are able to express your wishes.
Even though you may be under the age of 60, it is recommended that you visit with an elder law attorney, as they are the most specialized in knowing which documents are needed to best protect your assets. They can also provide guidance on how to best utilize your resources for your medical and long-term care needs.
We have provided a brief description of estate planning documents so that you can better understand the importance and purpose they serve in protecting your legal and medical rights.
Also known as a Living Will or a Health Care Directive, this document allows you to state your wishes as to whether you choose to have artificial life support should you become permanently unconscious or are otherwise dying and unable to speak for yourself.
Financial Power of Attorney
Also known as a Durable Power of Attorney, this document authorizes the person of your choice, to make financial decisions and handle your financial affairs on your behalf. This document goes into effect when you are physically or mentally unable to handle your financial affairs. Make sure that the Financial Power of Attorney allows your representative to handle Medicare and Medicaid issues.
Last Will & Testament
This document allows you to distribute your property and assets to the individuals or organizations of your choice, upon your death. When someone dies without a Will, then the estate is distributed based upon the strict laws of the state where you reside. Even if you do not own property, it is crucial to have this document completed and executed.
Medical Power of Attorney
This document allows your agent (the person you select) to make medical decisions on your behalf. The person you name in this document is the only one that will have the authority to make your medical decisions. Once this document has been completed and executed, it is honored in all 50 states and must be adhered to by hospitals and the medical profession.
Guardianships and Living Trusts are two other legal matters that might need to be considered, based upon an individual’s circumstances. We have provided a basic description of each. Should you find that you have a need for either one of these, it is best to consult with an estate planning attorney.
Guardianship is a legal process used to provide protection to adults who are incapacitated. Definitions of “incapacitated” may differ from state to state, but the general definition is as follows: “An adult individual who, because of a physical or mental condition, is substantially unable to provide food, clothing, or shelter to himself or herself, to care for the individual’s own physical health, or to manage the individual’s own financial affairs.”
The guardian will be a court-appointed person or entity that will make decisions on your behalf. Guardianships typically occur when there is not a family member, friend or interested party that is willing to take over financial and healthcare decisions for the individual.
Revocable living trusts are similar to a Last Will and Testament, in that you use them to leave your property/assets to others, and if you change your mind at any time while you’re alive, you can change the terms of the trust or revoke it altogether. Property/assets in the trust is controlled by the person you named to take over as successor trustee, and that person has the power to distribute the property to inheritors without any probate court involvement.
The details on each type of legal document are provided for informational purposes only. The Gayle Wells Foundation for Early Onset Alzheimer’s & Care advises you to consult with an estate planning attorney so that they can assist you with making the best decision as it relates to your circumstances.
If you currently live by yourself, it will be extremely important to have a strong system of support in place to help you maintain your independence for as long as possible. Please keep in mind that the most important thing is your safety—financial, medical, and physical.
Whether it is family members or close friends, you will need to let others help you through this process. You can refer these individuals to the Gayle Wells Foundation for Early Onset Alzheimer’s website so they can learn about the disease. We can also create custom information to send to them as it relates to your diagnosis and the progression of the disease.
In addition to family, friends, and colleagues, it is recommended that you let others know about your diagnosis so that they can keep a watchful eye out for any changes in behaviors or routine. These individuals would be those with whom you do business with or have direct contact with, on a regular basis (i.e. bank, pharmacy, grocery store, church, etc.)
Protecting your finances and ensuring you can meet your financial obligations is one of the most important areas to consider upon your diagnosis. Executing a Financial Power of Attorney will be critical. Some additional recommendations include:
Set up as many systems for direct payment as you can. If this is not possible then the companies affected should be informed of your diagnosis so that services, such as water, electricity, phone, and cable, are not cut off.
Have the person you named as your Financial Power of Attorney added to all of your bank, savings, stock, and bond accounts as an additional/authorized signer.
With respect to your personal safety, the Gayle Wells Foundation for Early Onset Alzheimer’s & Care can provide your support system with home, medication, and personal safety checklists.
MedicAlert + Safe Return
Three out of five individuals with Alzheimer’s will wander during the course of the disease. MedicAlert + Alzheimer’s Association Safe Return is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. They provide 24-hour assistance, no matter when or where the person is reported missing.
If an individual with Alzheimer’s or a related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line to report it. A community support network will be activated, including local Alzheimer’s Association chapters and law enforcement agencies, to help reunite the family or caregiver with the person who wandered. With this enhanced service, critical medical information will be provided to emergency responders when needed.
To get more information and to enroll for the MedicAlert + Safe Return program, please call 1-888-572-8566 or register online at: medicalert.org/safereturn.