Alzheimer’s: Do you know their wishes?

Are you ready to respect the wishes of the individual you are caring for, especially when dealing with dementia?

In cases of advanced and terminal illnesses like later-stage dementia, various medications, technologies, and care options exist to enhance comfort and address symptoms and pain. As a caregiver, how familiar are you with the preferences of the person with dementia under your care? While we often contemplate our own healthcare needs and life journey, discussing these matters doesn’t always happen.

Even though individuals with memory impairment may struggle to express their needs and desires, these still hold significance. Emotions and family dynamics can significantly influence end-of-life care when the person is unable to communicate their wishes. In the absence of crucial instructions, such as advance directives, Do Not Resuscitate (DNR), and Do Not Hospitalize documents, healthcare professionals, caregivers, and family members may find themselves making educated guesses, potentially leading to disagreements or outcomes not aligned with the individual’s true desires.

Though broaching this topic can be uncomfortable, initiating this conversation is crucial. A report from the Institute of Medicine highlighted widespread dissatisfaction with end-of-life care, revealing that many individuals preferred to die at home but often ended up in hospitals receiving more aggressive care than they desired.

Advance directives for healthcare are vital documents that convey the healthcare preferences of someone living with dementia, to be implemented when they are no longer capable of making decisions. These documents usually need preparation while the person is still legally competent.

A living will outlines a person’s preferences for medical treatment near the end of life or when they are permanently unconscious and unable to decide on emergency treatment. A durable power of attorney for health care appoints a designated person (an agent or proxy) to make healthcare decisions on behalf of the person with Alzheimer’s when they are no longer able.

A Do Not Resuscitate Order instructs healthcare professionals not to perform CPR if the person’s heart stops or if they stop breathing. This order, signed by a doctor, is placed in the person’s medical chart.

For more information on advanced directives for healthcare, refer to the National Institute on Aging.

Another critical aspect is the accessibility of these directives. Often stored in a ‘safe place,’ important paperwork might be unknown or inaccessible, especially during emergencies. While safe deposit boxes or hidden spots may seem secure, they can be challenging for others to access when needed.

Even if individuals have legally documented their wishes, the information is not always shared. According to a report from the Agency on Aging for Healthcare Research and Quality, a significant percentage of physicians were unaware of the existence of advanced directives for their patients.

We recommend not only making time for this conversation but also ensuring that these essential documents are stored in an easily accessible location, especially if caregivers are present in the home. Placing them on the fridge or in a designated folder on the counter could be practical.

Ensure the person you care for is safeguarded and living according to their desires, especially if you are a healthcare proxy. You’ll be thankful you did – after all, isn’t that what we all want and deserve?