How to prepare for end-of-life care for a loved one with dementia

Despite all the important reasons to plan for a good end-of-life experience, it’s often a task that is prolonged because of the emotional nature of the conversation. Yet if a family member is diagnosed with a terminal illness such as Alzheimer’s disease, these preparations become all the more important, serving as a guide for one’s preferences and a voice of reason down the road—especially if the individual ends up living with a disease such as Alzheimer’s for many years. 

Alzheimer’s disease is a specific brain disease that affects memory, thinking, and behavior. While Alzheimer’s disease is more common in individuals 65 and older, some people can receive an early-onset diagnosis of the disease before age 65. Alzheimer's disease accounts for 60-80% of dementia cases. It is a progressive disease with early-, mid-, and late-stage symptoms, which grow more severe overtime and ultimately interfere with daily tasks. While an individual may be in good physical health, they are deteriorating on a cognitive level.

The diagnosis of Alzheimer’s disease or other dementias alone is overwhelming, and may make it especially difficult to think about preparing for later stages of the disease or end-of-life. But once the news has sunk in, it is essential that families make preparations. To that end, here are three strategies to help you and your loved ones prepare:

1. After an Alzheimer’s disease diagnosis, you and your loved one should discuss end-of-life planning. As the disease progresses, your loved one may no longer have the cognitive ability to express their desired treatment plans or end-of-life wishes. Taking action now will prevent future crisis decision making and family conflict. Peacefully’s checklist can help guide the conversation in making sure end of life tasks are handled thoroughly. Below are important end-of-life topics to discuss and document with your loved one: 

   • Communciating values and defining quality of life

   • Documenting medical wishes

   • Filling out an advanced directive

   • Identifying a health care proxy

   • Establishing power of attorney

   • Authoring a living will 

   • Choosing placement of care

   • Estate planning

   • Deciding how to be memorialized

   • If necessary, writing a social media tribute and/or memorial  

2. Acquire knowledge and resources related to Alzheimer’s disease. 

   1. Learn about what you can expect during the early, middle and late-stages of Alzheimer’s disease. There are behavioral changes, triggers and care strategies to help your loved one feel comfortable and safe. 

   2. Alzconnected is an online community to support everyone affected by Alzheimer’s disease. Creating a support network for both you and your loved one is vital.

   3. Alzheimer’s navigator helps curate specific Alzheirmer’s disease information, support and local resources for caregivers to help everyone affected throughout their journey and end-of-life care. 

3. Prepare for mid and late-stage Alzheimer’s care as it becomes increasingly complex. During the early-stage of Alzheimer’s, your loved one may receive additional medical or nonmedical care at home or at an adult day care. 

1. Placement of care during mid to late-stages may require 24-hour supervision services from the setting of skilled nursing homes. Plan early and search for nursing homes in your area here. 

2. Hospice care provides comfort care at the end-of-life. The hospice care team may include a doctor, nurse, social worker, dietician, clergy, or trained volunteers to help your loved one manage symptoms and pain. They work together to address your loved one’s goals through physical, emotional and spiritual support as well as that of your family. 

3. Donating your loved one’s brain to research. This decision must be made well in advance of the disease progression. This is a way to help humankind in search for a cure for Alzheimer’s disease. 

Alzheimer’s disease is complex, and with so much to consider as you plan, it may make the most sense to contact us directly for help with planning for end-of-life. If you’re interested in additional help, contact Kiley at kiley@peacefully.com or call 657-999-0791 to speak to our concierge service.

—Lesley Hellow