Decisions that caregivers must make as a loved one approaches the end of life are among the hardest decisions that anyone ever has to make. Often, none of the options are easy, and choices must be made when the family is already mired in stress and grief. The last thing anyone wants to do is choose between quantity and quality of life for people with dementia, and there’s never a good time to do it.

That’s why it’s so important to come to the decision-making process with a clear idea of what the patient really wants, so that you’re able to make the best possible choices at an extremely difficult time.

Paying Attention to What Our Loved Ones Want

A 2011 poll conducted by the California Health Care Foundation asked participants what they hoped to experience during their own end-of-life care. Two-thirds of respondents hoped that they wouldn’t be a burden on their loved ones and that they could experience as little pain as possible.

Unfortunately, the same survey found that fewer than half of patients’ wishes were completely followed by medical providers during end-of-life care. The problem was much more pronounced when a language barrier existed between patients and providers.

Why is there such a disconnect between the wishes of patients and the care they actually receive? Often the problem boils down to communication. When it comes time to make crucial decisions about end-of-life care, patients are often unable to communicate their wishes to loved ones and providers.

The default goal of providers is to extend life at all costs, and grieving loved ones also often want to do whatever they can to prolong the patient’s life. When quality of life (as opposed to quantity of life) is more important to the patient–but the patient is unable to express that preference–they’re unlikely to get what they want from their treatment.

Evaluate Quality of Life for People with Dementia Early – Proactive Care

People with late-stage Alzheimer’s and other forms of dementia are usually unable to express their wishes for their own care. By the time life-extending medical interventions are required in late-stage dementia, the patient is unable to communicate effectively, leaving the decisions up to loved ones and medical providers.

A potential solution is for those diagnosed with dementia to consider their end-of-life wishes early on, before communication of those wishes is impossible. Frankly, early consideration of these issues is something we should all do, whether or not we’ve been diagnosed with dementia.

Very few of us plan for our end-of-life care. The California survey found that less than half of respondents had talked to a loved one about their end-of-life preferences, and less than a quarter had put their wishes in writing. Without having these frank discussions when you are able,, even more importantly, making a written plan for your own end-of-life care, it’s very likely your wishes won’t be followed (or even known) when the time comes. By defining a plan early on, directives about what kind, and how long care should be provided can greatly impact the quality of life for people with dementia as the disease progresses.

Creating an Advance Directive

An Advance Directive is a legal document that lays out a care plan for medical providers to follow when the patient is unable to make decisions or ask for care in the moment. It gives providers a clear idea of what the patient wants to happen (or not happen), and it takes some of the pressure off loved ones at a very difficult time.

The video below underlines the importance of an Advance Directive and offers some tips about how to begin to make one:

Advance Directives | Your Voice Matters – From Johns Hopkins Medicine

What to Consider for End-of-Life Care

As you contemplate what you want in your end-of-life care, there are several important issues to keep in mind:

  • Life-Extending Treatments. Medical issues that arise in late-stage Alzheimer’s often require decisions about treatments that will extend the patient’s life but that may have a negative impact on quality of life. You should consider whether you want providers to pursue treatments such as feeding tubes, respirators, IV hydration, dialysis, or surgeries. If you don’t want these treatments, say so in your Advance Directive.
  • Do-Not-Resuscitate (DNR) Orders. A DNR stipulates that you don’t want a provider to administer resuscitating efforts such as cardio-pulmonary resuscitation (CPR) or cardiac defibrillation. Without a DNR, providers are legally required to pursue these efforts.
  • Palliative Care. Palliative or hospice care focuses on providing comfort and dignity for the patient, rather than on extending life. Some types of this care require a doctor’s order, so you should make clear in an Advance Directive that that’s what you want when the time comes.

The late stages of Alzheimer’s are invariably an ordeal, both for patients and for those who love them. The ordeal is even harder to get through when caregivers have to grapple with choices and uncertainties about the course of care, and too often the ultimate result is that the patient’s wishes aren’t followed. Facing these decisions well ahead of time ensures that patients have a voice in their own care and they are able to come to the end of their lives with peace, comfort, and dignity.

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