Foundation of rights and autonomy
People with Alzheimer's disease do not lose their fundamental human rights upon diagnosis. While cognitive abilities decline, the principles of dignity, autonomy, and non-discrimination remain in effect. In the early stages, while a person still has legal capacity, it is critical to engage in planning to ensure their wishes are respected as the disease progresses. Legal capacity is the ability to understand information and the consequences of decisions, and this ability can fluctuate throughout the disease's progression. Caregivers and medical professionals must always presume a person has capacity unless a formal assessment proves otherwise. Any decision made on behalf of a person lacking capacity must be in their best interests and be the least restrictive option available.
Dignity and quality of life
Individuals with Alzheimer's have a right to be treated with dignity and respect, not condescension. This includes the right to a safe, comfortable living environment and participation in meaningful activities. In long-term care settings, this also means freedom from unnecessary physical or chemical restraints. The goal is to provide a sense of purpose and inclusion for as long as possible, rather than isolating or infantilizing the individual. Communication should be adapted to the person's needs, and their expressed feelings should be taken seriously, even if they cannot fully articulate their concerns.
Americans with Disabilities Act (ADA) protections
Since dementia is considered a cognitive disability under the ADA, individuals with Alzheimer's are protected against discrimination in several key areas.
- Employment: Employers cannot discriminate against someone based on an Alzheimer's diagnosis if the person can still perform the essential functions of their job with or without reasonable accommodations. This protection is especially relevant in the early stages of the disease. Accommodations might include things like a modified work schedule or adaptive equipment.
- Public Accommodations: Public spaces and services, including restaurants, hotels, and medical offices, cannot discriminate against individuals with Alzheimer's and must make reasonable modifications to ensure access.
- Access to Services: The ADA ensures equal access to public services and facilities, along with effective communication.
Comparison of legal planning tools
Making decisions early with legal documents is the most effective way to protect the rights and wishes of a person with Alzheimer's. The table below compares two common legal tools used for this purpose.
| Feature | Durable Power of Attorney | Guardianship (Conservatorship) |
|---|---|---|
| Initiation | Appointed by the individual with capacity. | Appointed by a court when the individual lacks capacity. |
| Authority | Legally authorized to make decisions on the individual's behalf. | Court-appointed to make decisions when other options aren't in place. |
| Scope of Power | Can be tailored to financial, health care, or both areas. | Authority is determined by the court, often more comprehensive, and may grant control over financial and personal matters. |
| Cost and Complexity | Less expensive and complex to establish than a court-ordered guardianship. | More costly, time-consuming, and involves court oversight. |
| Revocability | Can be revoked by the individual as long as they retain capacity. | Requires a court order to modify or terminate. |
| Oversight | Limited oversight by the courts unless there is a dispute or suspicion of misuse. | Ongoing court supervision is typically required. |
Rights related to health and finances
When a person with Alzheimer's can no longer make their own decisions, their designated legal representative or court-appointed guardian steps in. Federal and state laws protect these decisions.
Healthcare rights
- Informed Consent: In the early stages, a person with Alzheimer's has the right to give or refuse consent for medical treatment. As capacity declines, this authority transfers to a health care agent designated in an advance directive.
- Advance Directives: These are legal documents created while a person still has capacity to express their wishes regarding future medical care. They include a living will, which specifies preferences for end-of-life care, and a durable power of attorney for health care, which appoints a proxy decision-maker.
- Honoring Preferences: Healthcare providers are legally and ethically obligated to honor a person’s wishes documented in advance directives, even if their capacity has been lost. Without an advance directive, decisions must be made in the person's best interest, guided by their known beliefs and values.
- Right to Quality Care: Residents in nursing homes and assisted living facilities have the right to high-quality care, including properly trained staff and adequate staffing levels.
Financial rights
- Property Management: The use of a durable power of attorney for finances allows a designated agent to manage the individual’s assets and pay bills. This prevents court intervention and ensures a trusted person handles financial affairs.
- Access to Benefits: People with early-onset Alzheimer's have the right to expedited Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) through the Compassionate Allowances program. Veterans with dementia are also entitled to specific VA benefits.
- Medicaid and Insurance: Medicaid can help cover long-term care costs, and Medicare offers specific plans for beneficiaries with dementia. It is a right to have affordable and expeditious insurance coverage for approved diagnostics and treatments.
Conclusion: Proactive planning is key
It is imperative to recognize that a diagnosis of Alzheimer's does not erase a person's rights. They retain the right to be treated with dignity, to have their wishes respected, and to be protected from discrimination. The most impactful action a person can take is to create comprehensive legal plans, such as advance directives and powers of attorney, in the early stages of the disease when they still have legal capacity. This proactive approach ensures that their autonomy is preserved and that those acting on their behalf are guided by the person’s own preferences. For caregivers, understanding and upholding these rights is central to providing compassionate and ethical care. Seeking guidance from elder law attorneys and advocacy organizations can provide invaluable support in navigating these legal and ethical considerations.
