Serving as a caregiver for someone with Alzheimer’s disease is an awesome responsibility, often taken on with little time for preparation and formal training. When you start out as a caregiver, the tasks may seem overwhelming and it may be difficult to know where to begin. Establishing a precedent: a standard of understanding roles, responsibilities and the legalities of finances, estate, and health care are essential to the care of your loved one as well as your role as the caregiver.
During the early stage of diagnosis, both the caregiver and the person diagnosed with Alzheimer’s disease will want to take the time to adjust to the new reality and to start making plans for the future. It is important that these decisions are made while the person diagnosed is still deemed medically capable of making their own decisions and signing legal documents. It also eases the caregiver burden when your loved one can make their wishes known and are able to take an active role in the decision-making of their health and well-being.
Establishing a Power of Attorney for Finances and a Power of Attorney for Healthcare will cut-down on confusion and family squabbles and will ensure that trusted family members or friends are attending to your loved one’s health care and financial affairs. Without clear legal documentation in place, family members could experience limitations on their access to medical records and their ability to make medical decisions on behalf of their loved one. They could also lose access to bank accounts, real estate property and other vital financial resources such as Social Security and pension benefits.
Taking care of an elderly person, especially one living with Alzheimer’s disease or other forms of dementia, can be very demanding and require a caregiver to take significant time off work. Understanding your rights and protections under such laws as the Family Medical Leave Act (FMLA) and Equal Employment Opportunity Commission (EEOC) will better prepare you to open the lines of communication and negotiate time away from work with your employer.
The American Bar Association Commission on Law & Aging (ABA), recommends the following points to consider when taking on the role of a caregiver:
- Consult an Attorney. Know your rights as a caregiver. The legal rights of a caregiver can vary from state to state and in some cases, from city to city. Consult with an attorney in your city or state to learn about your exact rights in relation to your caregiving responsibilities. See “Find a Lawyer” at the National Academy of Elder Law Attorneys: www.NAELA.org.
- Understand Decisional Capacity. The person living with Alzheimer’s disease will start to experience a decline in some capacities, such as financial capacity (the ability to manage their own finances), before other functions. Seek professional help in getting your loved one evaluated so that you will have a clearer picture of their diagnoses, disease progression, and current capacity level. Contact the Eldercare Locator at: www.eldercare.acl.gov to help find services in your area, including health insurance counseling, free and low-cost legal assistance and community resource agencies.
- Know what legal authority you are seeking: financial power of attorney and or health power of attorney. Discuss with your relative important financial information such as the location of important documents and gaining access to bank accounts to take over financial responsibilities.
- Complete a Health Care Power of Attorney. The Health Insurance Portability and Accountability Act (HIPAA) prevents a healthcare organization or business from disclosing a patient’s personal health information without consent. Being appointed as the Health Care Power of Attorney affords you full access to all medical records and decision making on behalf of your loved one. Look over the resources listed at: http://ambar.org/healthdecisions.
- Complete a Financial Power of Attorney. Being named on a joint bank account can work for handling small amounts of money but later could raise serious questions about ownership and misuse of funds. A financial power of attorney designates a trusted person to manage all financial affairs. A power of attorney can be tailored to individual needs and circumstances.
- Discuss a Living Will with your loved one. Not to be confused with a Last Will and Testament, which deals with property and possessions, a Living Will, also called an Advance Directive, is a document that allows a person, who is no longer able to communicate for themselves, to state their wishes for end-of-life medical care and life pro-longing procedures.
- Manage Social Security/Veterans Benefits. Powers of Attorney are not recognized by the SSA (Social Security Administration), In order to manager someone else’s Social Security benefits, you must be appointed as the “representative payee”. For more information, go to: www.ssa.gov. Similarly, the Veterans Administration (VA), requires that you be appointed as the VA fiduciary. Contact the VA at: www.va.gov.
- Know the Signs of Abuse, Neglect and Exploitation. Caregivers are in the most visible position to witness and defend the elderly and those living with dementia against abuse, neglect, and financial exploitation. Go to the National Center on Elder Abuse for more information about spotting and responding to elder abuse at: http://ncea.acl.gov.
- Consider a Personal Care Agreement. A formal personal care agreement between a caregiver and a loved one with the financial means, can provide financial compensation to the caregiver for unpaid time off of work and other related expenses such as travel.
- Understand your legal rights.
- The FMLA entitles you to up to 12 weeks per year of unpaid (job-protected) leave from work to care for qualifying family members. To learn more, go to www.dol.gov/whd/fmla.
- The EEOC provides protection from discrimination or termination under the Family Responsibilities Discrimination Act (FRD). FRD is employment discrimination based on one’s caregiving responsibilities and not based on quality of work. If you think you are encountering FRD, file your complaint with EEOC at www.eeoc.gov.
- The American Disabilities Act (ADA) prohibits discriminating against or retaliating against people who are acting as caregivers for certain disabled persons.
**Statues and laws vary from state to state. Be sure to consult with an attorney specializing in Elder Law in your state.
Assists older adults and their caregivers to find local services including health care, insurance counseling, low-cost legal services, and community agencies.
The American Bar Association
The American Bar Association Commission on Law & Aging
The Alzheimer’s Association
Provides education, support and services to people diagnosed with Alzheimer’s disease and related conditions.
The National Academy of Elder Law Attorneys
Write to Chrishun Brown at Chrishun_m_brown@rush.edu