Receiving a diagnosis of Alzheimer’s disease or another form of dementia often brings a focus on managing daily challenges. Yet, proactively planning for the future is a crucial step that can lead to a more manageable journey ahead.
As Alzheimer’s and similar dementias evolve, they can significantly impair cognitive abilities, making forward-thinking decision-making increasingly difficult. The sooner you begin to plan, the more you can ensure that your preferences and instructions are clearly delineated and communicated effectively to those who need to know.
Highlighted here are essential legal considerations, accompanied by a selection of resources and practical advice. These tools can help guide you as you arrange for health care, financial matters, long-term care options, and end-of-life decisions.
Implementing Health Care Directives for Future Medical Decisions
Advance directives play an essential role in health care planning as legal instruments that convey your health care wishes. These documents come into effect when you can no longer express your decisions personally. Health care providers use these directives to follow your pre-stated preferences for medical treatment. The cornerstone of advance directives includes two primary documents:
A living will is designed to communicate to medical personnel your preferences about life-sustaining treatments if you find yourself terminally ill or in a persistent unconscious state where you are unable to make decisions on your own.
A durable power of attorney for health care appoints an individual — also known as a health care proxy — who you trust to make health care decisions on your behalf if you become incapacitated.
In the absence of advance directives, alternative parties may be necessitated to make health care decisions for a patient unable to voice their own wishes. Engaging in discussions with family, friends, and your health care providers regarding your care preferences is crucial.
For illustrative purposes, let’s consider the advanced stages of Alzheimer’s disease, where complications like difficulty swallowing might arise. This issue could lead to aspiration pneumonia due to the inadvertent inhalation of food or liquids. Treatment may comprise interventions like feeding tubes for sustenance, ventilators for respiratory support, and antibiotics to counteract infections. Nonetheless, individuals may prefer comfort-focused end-of-life care instead of aggressive treatment measures when facing terminal stages of an illness. It’s paramount to convey such preferences clearly in your health care planning.
When engaging in advance health care planning, several critical directives are worth considering to ensure your medical preferences are honored:
- A do not intubate (DNI) order is a directive to medical personnel, indicating your wish to decline mechanical ventilation.
- A do not resuscitate (DNR) order communicates to health care providers that you choose not to have CPR or advanced life-saving measures if your heart stops or you stop breathing.
- Additional medical orders, often referred to as POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment), detail your choices regarding various life-sustaining treatments during an emergency.
- Options for organ and tissue donation, wherein viable organs and tissues can be donated to individuals in need post-mortem.
- Brain donation for scientific studies contributes to a deeper understanding of Alzheimer’s and related dementias, possibly leading to more effective treatments and preventative strategies.
Financial Planning Advance Directives
Advance directives for financial planning are essential documents that outline an individual’s financial preferences. These directives must be established while the individual is still legally capable of making informed decisions. Typically, a financial directive includes three key documents:
A will outlines the distribution and management of an individual’s estate – including property, money, and other assets – after their passing. It may also detail provisions for the care of minors, allocation of gifts, and final arrangements such as funeral and burial preferences.
A durable power of attorney for finances designates a trusted individual to handle financial matters on your behalf if you become incapacitated.
A living trust appoints a trustee to oversee and allocate your property and financial assets according to your wishes, should you become unable to manage your affairs.
Seeking legal assistance from a lawyer is advisable to ensure these documents are properly crafted and in accordance with your and your family’s needs.
Long-Term Care Considerations for Progressive Conditions
As certain health conditions like Alzheimer’s or related dementias evolve, the necessity for long-term care arises. It is crucial for individuals diagnosed with these conditions, along with their families, to initiate the planning process for potential long-term care needs at the earliest stage. Professionals specializing in geriatric care management, such as qualified nurses or social workers, are available to collaborate with individuals and families to devise a comprehensive plan for ongoing care requirements.
Long-term care may be administered in the comfort of one’s home or at specialized external facilities. As the progression of dementia intensifies, the affected individual might require continuous care or might display behaviors, like aggression or wandering, which compromise their safety at home. For those requiring constant assistance, options include transitioning to an assisted living facility, a nursing home, or a residential care establishment that caters to the multitude of their long-term care needs.
When contemplating long-term care strategies, consideration should be given to:
- The future living arrangements for the individual as they advance in age, and how to adapt their living space to ensure it meets their evolving needs and maintains their safety.
- The scope and cost of long-term care services accessible within their community.
- The importance of timely planning to enable the individual in question to participate actively in critical decision-making while they still retain the cognitive ability to do so.
End-of-Life Considerations
As the reality stands, there is currently no cure for Alzheimer’s disease and other forms of dementia. While certain treatments can alleviate symptoms temporarily, the inevitable progression of the disease leads to a decline in health and eventually, death. Thus, it’s essential to initiate discussions and make decisions regarding end-of-life care well in advance. Plan for maintaining the quality of life, and consider if and when to focus on comfort care rather than treatments intended to prolong life.
In situations where a health care proxy has not been designated or advance directives are ambiguous, someone else may need to step in to make end-of-life choices on your behalf. These instances are typically fraught with emotional weight. For those who find themselves responsible for these determinations, it may be beneficial to reflect on the patient’s values and desires to guide these critical choices.
Strategies for End-of-Life Planning
Essential tips and checklists are available to guide you through the steps to take following a diagnosis of Alzheimer’s or a related dementia. To better equip yourself and your loved ones for the future, consider the following:
- Engage in early conversations with family members about your wishes.
- Organize important documents in one central location and inform a trusted confidant of this place.
- Review and amend documents as circumstances evolve.
- Distribute copies of healthcare directives across all medical folders.
- Grant your physician or legal representative prior consent to communicate directly with a caregiver when necessary.