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New Study Examines Death With Dignity for People With Dementia

By | April 30th, 2019

Gerda Saunders, an author and former gender studies professor in Salt Lake City, Utah, was diagnosed with microvascular dementia in 2010 at age 60.

The time leading up to diagnosis and immediately after can be a whirlwind of emotions and confusion. But one thing, said Saunders, helped put her at ease: putting a plan in place for end-of-life care.

My children and my family have given me an enormous gift in that promise.

Saunders has chosen to pursue physician-assisted death when the time comes. “Preparation for the uncertain future is the most calming thing I’ve ever done,” she recently told Being Patient in an interview.

Saunders’ approach to end-of-life care is becoming more popular and accepted amongst people with a high risk of Alzheimer’s, a new study published in JAMA Neurology found. While we still can’t predict who will get dementia, there are several biomarkers that indicate a heightened risk for the disease. Researchers at the University of Pennsylvania interviewed people with one of these biomarkers, beta-amyloid, about their attitudes toward physician-assisted death once they knew their brains contained higher levels of the protein, which forms into plaques that destroy neurons in the brains of Alzheimer’s patients.

What is it like to live with vascular dementia? Gerda Saunders is a former atomic energy research scientist and math teacher who now writes about living with dementia. From sharing insights on diagnosis to the difficult topic of planing for end of life, Gerda gives us an honest look at what it means to live with dementia.

Posted by Being Patient Alzheimer's on Tuesday, April 23, 2019

Of the 47 people interviewed, one in five said they would be interested in pursuing physician-assisted suicide if they were diagnosed with dementia and it progressed to the point of suffering or burdening others.

Physician-assisted suicide is legal in eight places in the U.S.—California, Colorado, Hawaii, Vermont, Washington, New Jersey, Montana and Washington, D.C.—but excludes dementia patients because states require the patient be of sound mind and have less than six months to live. Because the last stages of dementia can stretch out for much longer than six months, people with Alzheimer’s and other dementias do not qualify for “death with dignity” laws.

Most Americans support “death with dignity” laws, according to a 2018 Gallup poll that found 72 percent of people agreed that doctors should be able to assist a patient with a terminal illness in dying at their request. But the laws have always excluded patients with degenerative brain diseases who are deemed unable to make decisions for themselves.

Dementia patients can put advance directives into place, instructing hospital staff not to put extreme measures like feeding tubes into place. But those measures are not legally or ethically binding for medical staff.

Once she meets a set of criteria she has set for herself to determine quality of life, said Saunders, she will likely travel to Europe for physician-assisted death. She plans to carry it out herself and video it in order to avoid putting her husband, Peter, in legal jeopardy.

“We are managing it with all the intellect that we have and that is the best our family can do,” said Saunders, who has the support of her children and also promised to do the same for her husband if he meets certain criteria for quality of life before she does.

“I’ve put down a number of checkpoints: Do I appear or act happy for more hours in the day than I appear or act unhappy? Am I scared of people or my grandchildren or do I scare them? Do I consume more hours of care per day than I live on my own?”

It’s not always easy for family members to come around to the idea of a physician-assisted death—but for a patient who feels control has been snatched away, it can be a comfort. “It’s the hardest thing in his life to promise me that,” said Saunders of her husband’s commitment, “but he also asks it of me. My children and my family have given me an enormous gift in that promise.”

[ Next: Opinion | When Dementia Takes Hold, Give Patients the Right to Die ]

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11 thoughts on “New Study Examines Death With Dignity for People With Dementia

  1. Every week I visit my 91yr old mother n law who has severe dimensia. She does not know any of her children, grandchildren, friends or even herself. According to the Death with Dignity she has to be alert enough to approve it. If my mother could she would, but she obviously cannot.
    So because she does not meet the criteria, the government still pays the Nursing homes her Medicaid and the remainder paid by the children, even if it is a financial strain on them. If she was actually conscience of those around her rather than a living person in the body of a Zombie, we would spend every dime to have the privilege of having her in our lives.
    What this boils down to is that the Nursing homes and government are making money off the living dead.
    I think the Death With Dignity rules need to be broadened to include final stage dimentia as well.

    1. I totally agree. Both my parents died of dementia. I believe my parents would each have liked to choose to die before they “naturally” did. I worry about my own mental future and what choices I will have. It would be much comforting to be able to choose a Death with Dignity option while I have all my mental faculties, rather than burdening a family member and making them wait until I am at the point where I can’t swallow water or food and have to withhold sustenance to make me die.

      Susan in California

  2. I want to become an advocate for the right to sign a death with dignity when people find out they have dementia or before they find out. So anyone can have an advanced directive whether they are at the beginning stages of dementia or don’t even have it yet.
    If you can tell me how I can start an effective fight for legislation, that would be wonderful.

    1. I totally agree. I want to petition the government for the right to die to be extended to dementia patients. I just barely started reaching this, but I am fairly certain there are advocacy groups for this. I need to keep looking around.

    2. Do you live in Oregon by any chance? There is currently legislation there (HB2903) that proposes expanding the Death With Dignity Act. There is an Oregonian gentleman named Bruce Yelle, who himself was diagnosed with Parkinson’s, who started an advocacy group called End Choices.

  3. I feel it is imperative that People have the right to have a directive in place for Right to Die prerogative!!!! Why must we live 3 to 5 years, barely knowing our name and creating such a financial burden for which our Relatives are then Responsible. WHO would really want to wander the halls of some institution having NO knowledge of who they are or being able to perform the basic essentials of existence ???? That’s Really Crazy !!! Decisions for these circumstances, Made in Advance…. ARE A MUST!!!

  4. Totally agree. Dealing with this issue with my dad and it is horrific and sad. How do we fight for this right to have dementia included in death with dignity laws?

  5. I watched my mother decline slowly until she couldn’t speak intelligible words or understand what was said to her. This was a vital, highly intelligent, dynamic personality reduced to a zombie state. It broke my heart to watch the decline, knowing that were she able to think or talk, she would never want to exist in this state. One of my greatest fears and nightmares is to end up in this way myself – a burden to my family and dependent on others for every bit of my care. I would like to have a plan for assisted suicide in place before I need it. I’m totally in favor of advocating for this to be a legal choice in any US state.

  6. My mother passed away in April of 2020 from Lewy Body Dementia. The way my mother died was inconsistent with the way she lived her life. She would have been horrified to see how her life ended and it left me traumatized. I am interested in advocating for death with dignity, or medical aid in dying for those with dementia. They deserve to have choices as to when and how they pass away.

  7. I live in Florida and have now watched my father and my mother-in-law die from dementia, and I am leaning toward becoming an advocate for a right-to-die option. The arguments against such an option based on “do no harm” discount the perspective of the patient that wishes to protect his/her loved ones from the emotional and financial stresses of caring for them. To avoid that situation and be remembered with dignity is my end game, as I’m sure it is for most.

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