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Are Alzheimer’s-related suicides an emerging trend?

Are Alzheimer’s-related suicides an emerging trend?

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A paid death notice in The New York Times last week caught the eye of one of my colleagues, who circulated it around the office. It was for Sandra Lipsitz Bem, an emerita professor of psychology at Cornell who . Upon her diagnosis in 2010, it said, she made known “her intention to end her life while she could still do so without assistance if and when the disease became too debilitating for a meaningful quality of life.” It described her end as “peaceful.”

In some respects, this death notice wasn’t surprising to my colleagues and me. We work at The Hastings Center, a bioethics research institute concerned with ethical dilemmas in medicine. Bioethicists have been anticipating the possibility that as the population ages and more people develop Alzheimer’s disease, many of them will want to end their lives to avoid lingering for years with relentless decline. Increasing the odds is the availability of tests that estimate a person’s risk of the disease years before symptoms appear and that identify biomarkers – signs of the disease inside the body. The tests include , which is associated with increased risk, and a that reveals amyloid plaque, a sign of the disease. Someone who learns that he or she is likely to get Alzheimer’s can take action before it progresses to the point that taking action, let alone making decisions, is no longer possible.

In another respect, the death notice came as a shock. It was the first one that any of us had seen that identified suicide as an Alzheimer’s-related death. Did it indicate a trend? A quick Google search turned up an obituary for Bem in the , also citing suicide as the cause of death. But what about other death notices and obituaries?

I emailed Andrew Meacham, president of The Society of Professional Obituary Writers and an obit writer for the Tampa Bay News. He said he’d seen a slight increase in the number of death notices that mention suicide, although not related to Alzheimer’s disease. But that might change.

Over the last few years there have been news reports about and involving people with Alzheimer’s. In addition, articles in law and bioethics journals ( and , for example) have started exploring an ethical and legal gray area: the use of advance directives for people to request aid in dying if they develop dementia and reach a specified state of decline.

Here’s where the law is clear. It is legal for a person who is mentally competent to refuse interventions of any kind, as well as to refuse to eat and drink, even if doing so will hasten death. It is also legal for a person to refuse life-sustaining treatment through an advance directive; the directive would speak for the person should he or she lose decision-making capacity. In the states where physician aid in dying is legal, people who are terminally ill (with a life-expectancy of six months or less) and mentally competent can request and receive a physician’s help in ending their lives.

But these options are not available to most people with Alzheimer’s disease. While people in the early and middle stages are likely to have decision-making capacity, they might not want to die just yet, when they can still interact with friends and family and take part in activities they enjoy. In the advanced stage, people are not mentally competent, which eliminates the possibility of voluntarily refusing interventions (and nutrition and hydration) or requesting a physician’s aid in dying. And advance directives that express the wish to forgo life-sustaining treatment, such as mechanical ventilation, are of little or no use to people with Alzheimer’s, since Alzheimer’s by itself usually does not involve heroic medicine.

What some bioethicists propose is the option to use advance directives to refuse food and water. Since people with late-stage Alzheimer’s usually need help eating, the directives could tell caregivers – whether at home or in a health care facility – to stop feeding them.

“Such directives are not a stretch legally; in fact, they are arguably already legal,” write Paul T. Menzel and M. Colette Chandler-Cramer in the . “They follow logically from the intersection of two existing legal rights: directives for the refusal of life support and VSED [voluntarily stopping eating and drinking].” A to this view and a also appear in the journal.

Of course, this idea raises all sorts of questions. What if a person writes in an advance directive that she does not want food or water if she develops advanced dementia, but when that time comes, she seems to enjoy eating? Or she shows distress when she isn’t given food and water? What about the distress experienced by the caregiver who must make the decision to withhold food and water?

Debates on these and other questions will inevitably play out in the media. There will be commentaries, op-eds, and articles. And there may well be groundbreaking revelations comparable in the magnitude of its impact to the disclosure by Timothy Quill in the New England Journal of Medicine 23 years ago that he helped a patient with advanced leukemia commit suicide by prescribing a lethal dose of barbiturates. Quill’s article was shocking at the time, and it was the subject of coverage in newspapers and other general-interest publications. He touched off a national debate over physician aid in dying that continues to this day.

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Comments

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I am a 61-year-old woman with the presence of both tau and amalyoid in my spinal fluid. My mother and each of her sisters, as well as my paternal grandmother, had Alzheimer's. I am already quite forgetful and wish to plan and commit suicide while I still can, yet also protect my husband from having to see my body and handle my remains. I have spoken with my husband (who approves, at least in concept) and our attorney (who does not, and would only provide info on Alz. care facilities, which we already have explored). Any informant, experience and/or thoughts would be more than welcome. Many thanks.

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LJP, I am very touched by your post. You are a young woman. My husband was diagnosed with progressive Alzheimer's 5 yeras ago. Last October he killed himself to "Save us". I cannot even think to say I understand what you are feeling. But I can tell you what I was feeling. If God had given me a disabled child whould I have taken his/her life? No. My husband did it I know to save us from further heart ache. BUT what he left us with is the very worst kind of heart ache., He took from us the right to choose to provide care for him, he stole the memories of his sons that trusted him to lead and face the future no matter what. He stole the very core of our family to always protect and provide for each other. Do I think God has taken him into peace now? Yes I do. But the pain and not a peace hearts he left behinmd are devestating. My heart and prayers will be with you.

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K C I am sorry you feel this way. I watched my father die of this disease and now aiI am watching my 64 year old sister in the late stages of the disease. My sister is suffering tremendously with extreme terror likely caused by horrible hallucinations. I am tempted to film my sister to show people what she is going through. No one could say she is not suffering well beyond what we would let an animal suffer. Have you watched someone from the beginning of Alzheimers’s until their death. It is cruel and unusual punishment what some go through. Please do not let anything cloud you from seeing what they go through. Trust me, your husband did everyone a huge favour by not letting them witness the horror of what awaited him. God gave us free will to determine what is right in a given situation and for us to act courageously when necessarily. God waits for us to respect life by our choices and to prevent horrendous suffering when necessary.

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I just had to place my mom in a nursing facility bec of Alzheimer's disease. My mom never wanted to live in a nursing facility so it broke my heart to place her in one. However, it was endangering all of our family's life by keeping her at home. Stoves left on, switching of meds and a last switch of clorox for water in drinking water bottles including a two year old nephew who almost got poisoned.

She use to tell me she would prefer death to a nursing home but so far she has forgotten this but I struggle with the long term sequelae of this disease and just wanted to check if suicide could be a risk in Alzheimer's disease.

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I found out Thursday that my grandfather had shot himself in the head because he couldn't deal with the Alzheimer's disease. He had gone to his routine tests, went to breakfast and got into an argument with my grandma because he was driving. He walked into the office of my grandmothers house and had wrote a note saying take care of ginger and Toby (his and my grandmas dogs) and to sell his Rolex. He walked to his bedroom and grabbed his gun, walked out into the laundry room, looked at my grandma and said, "I'm sorry, I love you" she looked and him and said the same thing and had looked down at his hand as he walked away to the bedroom.y grandma rushed into my moms and step dads room yelling that he had a gun. My mom and step dad rushed into the bedroom and had stood at the bed room door pleading for him to come out. He said "I'm sorry but I have to do this, I'm sick of suffering, tell declan I love him" he pulled the trigger and after the gun shot there was silence. The police were called and the shower was cleaned up.

I didn't hear about this until Thursday morning. I did research and there was nothing mentioning the fact that he had committed suicide because of his Alzheimers. I've lived the past two years believing he had taken a nap and never woke up. There needs to be more awareness for Alzheimer's related suicide.

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I am married female in my mid-60s. I married late in life and have always been independent, self sufficient and hard working and have no significant health problems. Because I've been experiencing significant problems with my short-term memory, I decided to get a medical opinion of my problem but feared the worst because there is Alzheimer's in my family and I have been the primary care giver for a family member with Alzheimer's. Based on recent exams, my brain storage is significantly impaired and an MRI showed my brain has shrunken more than usual for my age. Both my neurologist and reps from a study for an emerging Alzheimer's drug believe I have Alzheimer's disease. My husband is several years older and has some serious health issues that will no doubt shorten his life. I have no family within hundreds of miles and have no children. I've seen Alzheimer's disease up close and personal. I truly believe that as the disease progresses I will have no meaningful life and will have a dismal future. I believe I deserve to have the right to end my life when I feel it is time and would appreciate any information knowledgeable readers can provide me on this subject. Thank you.

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I can understand all of what you are going thru, my family has a history of Frontal Temporal Lobe Dementia( FTLD). It's a genetic defect on the MAPT gene, it hits early in life - mid to late 40's- it took my grandmother, who was adopted, my mother, 3 aunts and 3 uncles out of 10 children. Our family was hoping it wouldn't be as devastating to our generation, if a parent had the disease, we have a 50% chance of having the defective gene. My younger sister was diagnosed 3 years ago and now is in a nursing home. She was 53 when she had to leave her home. My older sister, 56, is showing symptoms and a younger cousin also is symptomatic. I do not want to live if I have this. My family knows, my doctor knows. So far I'm not showing symptoms and there is a genetic test that I will be having done. I have 2 children who have seen what is this dementia is like, my oldest won't even listen to why I want to end my life, my youngest understands and my husband is in agreement but lately has voiced that he doesn't think he could actually help me. My doctor said " move to a state where it's legal". Reading this artical I know it's just not that easy now. Unlike Alzheimer's this dementia takes your mind so I may not remember what I wanted to do, so I'd have to act before the dementia gets really bad. I understand the dilemma you all are facing, I wish you luck, hope you are able to get what you want.

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my mom suffered with this for years having your mom look at you a be afraid of you is not what I want for my kids I am suffering with depression for many years have always been unhappy I have told my family what I will do when I am ready I have notes with my picture on them all over my bedroom incase I forget when the time comes I will not be a victum of this or make my kids live with it it is my life and right to choose how to end it and why I understand all the thoughts that goes through your mind and your kids its not pleasant for them and they fear they live with

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I'm sixty-one and getting adjusted to both Alzheimer's and the doubts, questions, and feelings that have come with it. We face a conundrum, while we are competent we are not far enough along the decline for any jurisdiction to enable death with dignity. By the time someone is ill enough, usually from other than Alzheimer's itself, they are far past competency to make "the Decision." An unspoken assumption is that my society, my culture, is properly authorized in the moral sense to prevent me from ending my life. For many people it's a given that they must force upon me a life I no long want. Who says? O have the same motives as others. I want to spare my family. I don't want the indignity of having my body, my shell, to live on after my memory and my memories have departed. What right does society have to deny this. My motives aside, this question hasn't been pondered by enough people.

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I'm 75, diagnosed with ALZ 4 months ago. Ex Marine med evac pilot in Vietnam for 13 months. I want to shoot myself when the time comes that I cannot recognize my wife, kids and grand kids. Problem is that when that time comes, I will not remember my intentions. I have a plan to take care of that problem. Let me know if you want to hear it.
Tom Pack

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I would like to hear your plan.

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I was diagnosed at 63 with mild Pre cognitive degeneration. I think I'm in denial because I'm still functioning at such a high executive level I absolutely am certain that I want to take my life before it's too late what are your plans I'm going to look into different States that allows right to die. Thank you for your service.

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I would also like to hear your plan. Alz runs in my family so I have had plenty of experience with it . I was in a drug study for a couple years that was eventually terminated because there was no evidence it was effective in combating this dreaded disease...I am now waiting to get into another drug study. I recently had a PET scan that verified TAU in my brain so there is absolutely no doubt I have it. .

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I am 58 yr old divorced female with no children.
My grandfather, father and 2 uncles had Alzheimer's. I want to be tested and I want the ability to have my life taken when I can no longer care for myself.
I am so disappointed that I can not have an advanced directive to do so.
Why should I have to be warehoused and deplete what minimal funds I have - and ultimately cost the taxpayers thousands of dollars for care I do not want?????

Having watched my loved ones experience mental death but continued physical existence I am researching what can be done to keep myself from this horrific fate.

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I do not know that Alzheimer's in my family. To my knowledge I had one relative with dementia, but that was after a stroke.
I am a nurse. I have seen the devastation of many diseases on the body. I do not wish to endure any of it. Now I am healthy and 57. But who knows what the future holds? I do not want to live with Alzheimer's or cancer treatment or stroke. I would rather die early on my own terms. I am not thinking about it now. But in the future if things decline.
It may seem silly to think about this...but I have seen so much devastation as a nurse. I want to be able to choose and not have that choice made for me.

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I am so very conflicted right now. Tonight a neighbour to my mother called and told me that she expressed a desire to end it all. She has been diagnosed with ALZ but is also an alcoholic. She was a very abusive mother and abandoned us when I was 13. Part of me doesn't care and part of me does. I understand the not wanting this life anymore but I also would hate for her to commit suicide. Sigh, such a very difficult thing to deal with for us all.

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I share all of the hopes and fears expressed above. I had one of those Helium tank hook-up sets, but my friend threw it away. My dexterity is failing fast. I now face the threat of stroke. Some doctor had me take a 3 hour memory test. My overwhelming shame at my own dismal failure was like a gun to the head. I feel that the Alzheimer's Association is good for nothing except wearing purple T-shirts and begging for money. I need a female friendly way to die. Any suggestions? Praying for cancer...refuse all check-ups but so far nothing.

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This was over 35 years ago, my dad was diagnosed with early onset Alzheimer's at 56 years old. Two years later he committed suicide but before he did that he murdered my mom. It was shock to us, and still unanswered by medical professionals. How could this have happened? It is terrifying to see that Alzheimer's is still connected to suicide. However, I have to say, I wished my dad and mom could have grown old with me. They never knew their grandchildren. I don't believe suicide is the answer. We all have something to gain from living with whatever we have. I wanted them to be in my life in whatever condition. I wanted the burden. I am sorry for you that feel so discouraged that you want to die and not be a burden. I know it's your life and you should have control, but from a survivor's point of view, talk with your family, talk to lots of people, before you make that decision. Grief is hard enough but when you are the survivor, you always wonder what you could have done differently to help them to stay.

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Hello, Linda. This is Chinyere, the community editor for the Center for Health Journalism. Thank you for sharing your story, and very sorry to hear about what happened to your parents, and how the tragedies have affected your family. Would you be interested in writing more about your experience? If so, please email me at [email protected] and we can chat further.
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Depending on the purpose, I would share my story.

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My mother recently died of complications related to Alzheimers at a very young age. She had gotten to the point where she was resisting food and drink even when she'd said she was hungry or thirsty. After a hospital admission due to low potassium, we decided to respect that her brain was now shutting down the rest of her body. As stated in a posting on the Alzheimer's Association site, 'it is an ethical right to resist a technological assault on natural death.' It broke my heart to watch my mom waste away but frankly it was also a relief to know that she need not linger for several more years in such anxiety and misery. My mom's final years were hell. To be honest, if there had been a way for her to have an assisted suicide, I would have supported it with all my heart. There comes a point when the darkness of life with Alz is simply undignified. I have spoken with several people who witnessed years of their parents lingering in Alz and they say that even many years after their death, the heaviness of their parent's end overshadows the good memories. If it were me, I would want to go out with my dignity intact. In a peaceful way that gave me some sense of control. I respect and value life but do not understand this obsession with keeping the body alive at such a high price.

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My mother and maternal uncle (out of out of her 3 brothers and 1 sister) succumbed to Alzheimer's (I have no siblings). Having witnessed the humiliating horror of this disease I've become particularly concerned any time I forget a name or cannot come up w the right word. I just turned 71 and have decided to "call it a day" (as it were) rather than burden my wife should I be diagnosed with Alzheimer's (my wife would be well off financially so she would be fine). I may be cynical but finding a cure for this disease would be very costly to the Alzheimer's industry (e.g., health care providers, pharmaceutical, etc.). Thanks for the opportunity to vent.

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Dr. Dale Bredesen's book, "The End of Alzheimer's", has ideas for reversing memory loss. He doesn't think Alzheimer's is cured by just one thing; he says you have to fix a lot of little problems to let the brain repair itself. Some are easy to implement, like correcting a B12 deficiency, or changing what you eat.

Also, if you carry an APOE4 allele, visit the website APOE4.info. They have many ideas to forestall decline.

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In 1995, my father-in-law was diagnosed with early onset Alzheimer's. He was 60 years old at the time and was a very intelligent, caring, funny, handsome and proud man that I had the greatest respect for. He also enjoyed shooting as a hobby and had a small collection of shotguns, rifles and handguns which he kept in a safe.

It took 7 years for this man to slowly disintegrate into a vegetable and along the way he had the typical memory loss accompanied by horrific levels of paranoia. Four years in, we took the keys for his gun safe and hid them to prevent him from doing potential harm to himself as the disease advanced.

In the beginning of his 6th year with this disease, he came to me in a moment of complete clarity and tearfully begged me for the keys to the gun cabinet. I refused. He tried two more times in the weeks that followed and I refused each time. At that point in my life, I had never experienced the full force of Alzheimer's and had no idea what he was in for, so I felt I was making the right decision. I can now clearly say that I deeply regret that decision. However, if I HAD given him the keys, I would have forever regretted THAT decision - because I wouldn't have known the horrifying experience that he was about to go through.

Alzheimer's is a cruel disease that no one should have to endure the full brunt of. Everyone diagnosed with it should be given the option of deciding their own criteria in advance when their time is done. That end should come calmly and with grace - not with the violent, horrifying, undignified mutilation created by a gun.

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Having observed friends and family members succumb to various forms of increasing and irreversible dementia, I hold no sympathy for people or institutions which stand in the way of a person choosing to die with thoughtful consideration. We are persons early in these disease processes fully responsible for making decisions regarding our future. I have witnessed extreme suffering from disease and from the extreme medical, physical, emotional, and indeed sexual abuse of those who bear the burden of dementia. There is no safety for people without agency. Wake up ... suffering without hope is evil.

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Its not fair. I have tried to make a positive difference in this world and all i have recieved in return is alz
how can I spare myself and wife and children what this will do to them? Suicide has such a negative view. I dont want it. Nor do I want everyone to suffer. Im 64 and have not been officially diagnosed but its there. I know the symtomology.

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