Caring for someone with Alzheimer's or another type of dementia can be demanding, especially when it involves healthcare decisions. Families frequently encounter tough choices about treatment options, symptom management, enhancing quality of life, and end-of-life care, all while trying to understand the specific needs and behaviors of the individual with dementia. Caregivers often experience significant emotional stress as they juggle compassion and practicality while navigating their caregiving journey and aiming to make the best choices for their loved ones.
Advance directives can significantly reduce the stress experienced by caregivers and allow individuals with dementia to maintain autonomy by enabling them to express their medical care preferences, even when they can no longer make their wishes known. By planning, families and caregivers can ensure that care aligns with their loved one's values, which eases stress during challenging times.
WHAT ARE ADVANCE DIRECTIVES?
Advance directives are legal documents that outline an individual's healthcare preferences and designate a trusted decision-maker for times when they can no longer communicate their wishes. Due to the progressive nature of dementia-causing illnesses, these directives are especially vital for individuals with these conditions, which can impair decision-making over time.
Types of Advance Directives -
- Healthcare Power of Attorney (POA): This document appoints a healthcare agent or proxy to make medical decisions on an individual's behalf if they cannot do so. It ensures that someone familiar with their values can act in their best interest. In South Carolina, this document does not require an attorney or a notary to be completed.
- Living Will: A living will details specific medical treatments an individual does or does not want, particularly at the end of life. This document guides the use of interventions such as resuscitation, ventilators, and artificial nutrition. In South Carolina, a living will must be witnessed by two individuals and notarized to be valid.
- Five Wishes: Five Wishes is a user-friendly document combining a living will and a healthcare POA. It addresses:
- The person chosen to make healthcare decisions.
- Preferred types of medical treatment.
- Comfort preferences.
- Messages for loved ones.
- Wishes for how they want to be remembered.
- SC POST (Physician Orders for Scope of Treatment): Unlike a traditional advance directive, POST is a medical order completed by a healthcare provider. It specifies an individual's preferences for treatments like resuscitation and hospitalization during emergencies. POST is ideal for those with serious illnesses or advanced frailty, ensuring their wishes are followed immediately.
- Do Not Resuscitate (DNR) Order: Similar to POST, a DNR is a medical order completed by a healthcare provider. It signifies that medical staff should not perform CPR if the person’s heart stops or the individual stops breathing. This order is appropriate for those who do not want to undergo life-extending emergency procedures and should involve a discussion with a physician.
In South Carolina, Five Wishes requires notarization.
RESOURCES FOR ADVANCE CARE PLANNING:
Prepare for Your Care: Prepare for Your Care is an online resource that simplifies the process of making healthcare decisions and completing advance directives. With step-by-step instructions and easy-to-understand videos, it empowers individuals and their families to:
- Clarify personal values.
- Select a healthcare decision-maker.
- Complete and share advance directives.
This free tool makes advanced care planning accessible to people of all backgrounds.
The Conversation Project: This initiative helps families discuss and document their end-of-life care preferences before a crisis arises. Its free conversation guides encourage meaningful discussions about values, fears, and priorities, providing clarity and confidence for loved ones during critical moments.
WHY ADVANCE DIRECTIVES MATTER:
Preserve Autonomy: Advance care planning allows individuals to maintain control over their healthcare decisions, even as the disease progresses. It will enable them to voice their preferences regarding medical treatments, end-of-life care, and quality-of-life goals, thus preserving their autonomy and dignity throughout the journey.
Ease Family Burden: Clear and documented advance care plans lessen the burden on family members and caregivers who may otherwise struggle with making difficult decisions on behalf of their loved ones. Without these plans, conflicts can arise among family members who may have different interpretations of what their loved one would have wanted. By knowing the individual's wishes in advance, families can avoid potential conflicts and provide care that aligns with the person's values and beliefs.
Ensure Quality Care: Advance care planning goes beyond medical preferences; it encompasses the individual's holistic well-being and quality of life. Discussions may include preferences for living arrangements, social activities, spiritual or religious practices, and emotional support, enabling caregivers to provide comprehensive and person-centered care.
Navigating End-of-Life Decisions: As dementia-causing illnesses progress, individuals may reach a point where they can no longer make healthcare or end-of-life decisions for themselves. Advance directives, such as living wills or healthcare proxies, serve as guiding documents for healthcare professionals and family members, ensuring that end-of-life decisions are made by the person's previously expressed preferences.
Promoting Open Communication: Advance care planning supports open communication among individuals, families, caregivers, and healthcare providers. Regular discussions allow for ongoing updates and adjustments to the care plan, ensuring it remains in line with the individual's evolving needs and preferences. It's important to revisit and update these plans as the individual's condition changes or their preferences evolve.
GETTING STARTED
- Start conversations early—ideally upon diagnosis or sooner.
- Use tools like Prepare for Your Care or The Conversation Project to explore options.
- Consult an attorney or healthcare provider to complete legally binding documents.
- Share completed directives with loved ones, caregivers, and medical professionals.
CONCLUSION
Advance directives empower individuals with Alzheimer's and related dementias to plan. By initiating discussions early, respecting individual preferences, and documenting wishes in advance, we can ensure that the journey through dementia is guided by dignity, autonomy, and compassion. For more information, contact your local Area Agency on Aging or visit these valuable online resources:
National Institute on Aging – Advance Care Planning: A Conversation Guide
Tags:
Dementia; Alzheimer's disease; Education/Guides