The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
Still Alice offers a devastating and intimate exploration of Alzheimer’s disease, a progressive brain disorder affecting millions of middle-aged and elderly Americans. The drama, directed by Richard Glatzer and Wash Westmoreland, is based off the 2007 best-selling novel of the same name.
The film focuses on acclaimed linguistics professor Dr. Alice Howland, played by Julianne Moore. Early in the film, Howland, a perfectionist, unexpectedly catches herself misspelling words, forgetting family recipes and getting lost in her neighborhood. She is soon diagnosed with familial early-onset Alzheimer’s, a disorder she passes on to a daughter.
Much of the film focuses on her rapid decline and her family’s struggle to find adequate care for her. In one particularly disturbing scene, Howland finds herself in her bathroom with a bottle of pills. No scene is glamorized.
“I am very proud and feel really lucky to have been involved on this project,” Moore told entertainment trade magazine Variety after winning the Golden Globe for best actress in a drama. “I wanted to bring specificity to absolutely everything I did. I didn’t want to represent anything onscreen that I hadn’t witnessed. It’s not fair to make it up. Too many people are dealing with this disease.” Moore received an Oscar nomination in January.
To depict the disease honestly, Moore spent four months researching it. The film has been warmly received by Alzheimer’s advocates, caregivers and physicians. It is expanding to theaters across the nation.
“The attention the movie is getting is very meaningful for the more than five million people in the United States living with the disease, and the millions of caregivers, friends and family members who manage their care,” said Carrie Jackson, an Illinois Alzheimer’s advocate, author and caregiver. “Moore talked with doctors and nurses, visited nursing facilities to meet women diagnosed with early-onset, and sat in on support groups for caregivers. Still Alice addresses the totality, futility and devastation of Alzheimer’s.”
According to the Alzheimer’s Association, nearly one in six women 65 and older will be diagnosed in their lifetimes. The decline can be slow, which makes caring for loved ones suffering from the disease especially difficult. In the film, Moore loses her ability to work, clean and even wash herself.
“Alzheimer’s disease is something that people are not always willing to open up and talk about. Still Alice can start the conversation and encourage people to start speaking out about Alzheimer’s,” according to an Alzheimer’s Association statement sent to Life Matters Media. “Many people with younger-onset Alzheimer’s are in their 40s and 50s. They have families, are at the height of their careers or are even caregivers themselves when Alzheimer’s disease strikes. In the United States, it is estimated that approximately 200,000 people have early onset Alzheimer’s.”
Still Alice holds a positive 85 percent rating on Rotten Tomatoes, a website that aggregates mainstream film critics. Many critics praise Moore’s understated performance. The National Board of Review Awards named Still Alice as one of the top ten independent films of 2014.
New York Times film critic A. O. Scott called it “a movie that addresses a nightmarish circumstance with calm, compassionate sensitivity,” due in part to Moore’s “exquisitely nuanced performance.”
Hundreds gathered at the Museum of Contemporary Art Thursday evening for “Mementos Mori,” a riveting exploration of death, disaster and chaos. Presented as part of the Chicago International Puppet Theater Festival, an innovative group of performers used paper puppets, live music and overhead projectors to tell three overlapping stories in which death targets unsuspecting individuals.
Manuel Cinema, a Chicago-based puppet company, offered a “meditation on how digital culture is changing our relationship to death and dying.” Death, disguised as a young and stylish blonde, is only notified of her next target by a smartphone app called “Reapr,” a play on the adult matchmaking service Tinder.
Her three victims– a twenty-something delivery woman, an unemployed middle-aged smoker and a grandmother– struggle with day-to-day tasks until she arrives to claim them. Death is impartial and may arrive at any moment, whether it comes as a result of a heart attack, a car crash or complications of old age. Much of the silent production focuses on a seven-year-old girl who must confront her own mortality.
“Mementos Mori” is a play on the Latin phrase meaning to “remember death.”
The audience remained transfixed throughout the brisk 90-minute performance. Audible gasps and sighs echoed during some of the more emotional moments.
“I’ve never seen anything like this before. I am fascinated by death and read a lot about it,” said Amanda Mobley, a 25-year-old strategist. “It’s fascinating to think about what happens to you after you die, and what it means to be alive. The technological aspect of the play is interesting, because everything we do now will live forever on the Internet.”
Many left the theatre tweeting and sharing their reactions on other social media platforms.
Mementos Mori runs through Jan. 18. Tickets are available here.
The Immortalists focuses on two outlandish and determined scientists as they struggle to create a formula for eternal youth in a world they call “blind to the tragedy of old age.”
The personal documentary, directed by David Alvarado and Jason Sussberg, addresses the inevitability of aging and death while encouraging debate regarding the limitations of medicine.
The “fountain of youth” research from scientists Bill Andrews, the “marathon man,” and the bearded Aubrey de Grey is never lampooned, but it is instead presented as theoretical science- just out of reach from becoming prescribed treatments.
“When we cure aging, it is going to be hailed as one of the most successful periods of time in human history,” Andrews says in the film’s opening scene. “I have no idea what my life is going to be like, but I know when I am a million years old, I know I am going to say, ‘today is not the day I am going to die.’”
Made on an “indie budget dime,” the film has been warmly received by both critics and audiences. Alvarado and Sussberg spoke with Life Matters Media about their inspirations, aging and health care.
What inspired you to create this documentary?
Sussberg: David and I were really interested in science and technology, and interested in examining the big issues that were happening in technology and where we were going as a species.
We heard that there was a group of scientists in Silicon Valley who were interested not only in prolonging life, but in defeating aging. As filmmakers, we were immediately interested in the idea.
Scientists hope to prolong life by exploring telomeres. What are those?
Sussberg: Telomeres are the very tips of our chromosomes. Inside our body, there are cells inside of our cells and DNA composed of chromosomes. As you age, telomeres get shorter and shorter and eventually fray. When they fray, chromosomes become tangled and mangled, and mutations can occur. That is when the aging process really takes full effect, and the deleterious effects begin to happen.
According to the scientists we profiled, aging is a disease.
Do you believe scientists will solve the “aging problem” and prolong life indefinitely? It seems highly unlikely.
Alvarado: If you talk to Bill or Aubrey, they’ll say things like, “Maybe we can’t live indefinitely, that’s the goal, but in the process of working, we’ll find ways to cure cancer or find a way to make elderly age not so fragile.” In one sense, you can’t hold it against them too hard, because they are trying to make people healthier.
My biggest concern is that today in the U.S., the only people that can afford the best medical care are the upper middle class and super wealthy. I don’t even have health insurance right now, it’s hard for me to budget for such a thing. If I got sick, I would be totally screwed. Yet, there are people like Dick Cheney that can easily afford a heart surgery and transplant and will just keep living longer. Maybe if I got sick, I wouldn’t live so long.
There is this huge imbalance, and I think that developing these technologies opens up this whole world of possibilities where the divide becomes much greater. Is that a reason not to develop medical technology, because Cheney can afford it and I can’t? That seems like a silly reason not to.
You are both young filmmakers. Was it difficult focusing on aging and decay during the two-year project?
Sussberg: I’m 32, and David is 30. According to some anti-aging doctors, we are already experiencing the ravages of aging, because once you hit 30 you start to decay.
Given the option to live forever, would you take it?
Alvarado: Indefinitely? No.
I would not want to be immortal where my body could never be destroyed. But if you offered me the chance to never get heart disease, which is what kills people on my mother’s side, or diabetes, which is what kills people on my father’s side, I would take that pill. I like living, and I have relationships that I want to continue. Given the choice, I would take some sort of health-extending pill, but they don’t exist.
The documentary will be screened at the Gene Siskel Film Center in Chicago Jan. 10 and 12.
Seniors taught to use social networking services have heightened feelings of self-competence and social inclusion, according to an extensive new program funded by the European Union.
The two-year project, led by researchers with the University of Exeter in the U.K., trained 76 vulnerable older adults to use specially-designed computers and the Internet. Participants, ranging in age from 65 to 90, received nursing care at the time of training.
Half of the participants were randomly assigned computer training, while others continued to receive care as usual. Training involved the installation of an “Easy PC” package, consisting of a touch-screen computer and keyboard. Participants kept them for 12 months.
“Human beings are social animals, and it’s no surprise that we tend to do better when we have the capacity to connect with others,” said Dr. Thomas Morton, a professor of psychology who led the project, in a statement. “People who are socially isolated or who experience loneliness are more vulnerable to disease and decline … This study shows how technology can be a useful tool for enabling social connections, and that supporting older people in our community to use technology effectively can have important benefits for their health and well-being.”
The project, billed as Ages 2.0, aims to help promote social engagement among seniors as Europe’s population ages. It is estimated that between 2010 and 2060, the number of people aged 65 and older across Europe will grow from 17 percent to 30 percent of the total population.
“Having this training changes people’s lives and opens up their worlds, invigorates their minds and for lots of us gives us a completely different way of recognizing our worth as we age. I was just slipping away into a slower way of life,” participant Margaret Keohone told researchers. Skype and email were particularly popular tools.
A parallel study is taking place in Italy to better compare results across different countries and cultures.
“I am very happy about this training. At the beginning, I experienced some difficulties and I was almost skeptical to continue,” said Italian participant Maria Grazia Ravaini. “PC enables me to stay in touch also with friends living far away and to discover wonderful far worlds, even if I cannot travel.”
Vulnerable U.S. seniors may also benefit from social media and technology training, according to recent findings published by the PEW Research Internet Project. Although nearly 60 percent of seniors take advantage of the Internet, many face physical challenges to using smaller, more efficient devices.
Two in five seniors indicated they have a “physical or health condition that makes reading difficult or challenging” or a “disability, handicap, or chronic disease that prevents them from fully participating in many common daily activities.”
In addition, just 18 percent said they would feel comfortable learning to use a new device such as a smartphone or tablet on their own; 77 percent said they would need someone to help walk them through the process.
Among seniors who go online but do not currently use social networking services such as Facebook or Twitter, 56 percent said they would need assistance if they wanted to connect with friends or family.
Many American Muslims oppose physician-assisted suicide, rely on family to make their end of life decisions and lack spiritual support in major medical centers, says Dr. Aasim Padela, an emergency physician and director of the University of Chicago’s Initiative on Islam and Medicine.
Padela spoke with Life Matters Media about Muslim beliefs regarding so-called “Death with Dignity” legislation, burial and terminal illness.
Advocates of “Death with Dignity” legislation hope to legalize the practice in Illinois in the coming years. Do you believe most Muslims would oppose it?
I think from the standpoint of suicide being impermissible in Islam, one who helps someone commit suicide is being party to that wrongful action. I think the term “Death with Dignity” has been in some ways used to advance an objective which may not be dignity at all, but rather just a sense of trying to have control over one’s life and death. It assumes that someone is fully knowledgeable of their state-of-being at all times.
Islamic theologians and ethicists would say that a physician helping a patient to end their life willfully is being party to sin.
Suicide usurps the role of God in a certain way, but also neglects the fact that there is a metaphysical reality. There are things that we don’t have full knowledge of, and discounting the fact that there may be some benefit in the afterlife is problematic for a religious person. It’s a very similar line of logic to Roman Catholicism.
Would stopping artificial nutrition also be considered “sinful”?
There are many similarities in all the Abrahamic faiths, and feeding is considered apart from medical treatment. Feeding is considered a human responsibility.
Now in medicine, you have a specialist community of physicians helping someone by medical procedures to have an alternate way of eating – feeding tubes. But oftentimes it’s not the medical personnel who are feeding the patient, it might be a family member who is administering the feeding formula through the G-tube. So, it is not considered a medical procedure in Islamic law. But stopping feeding as a way to facilitate death by starvation is problematic.
However, if someone chooses not to eat, are you forced to feed them? That’s not the case, either. There are aspects of feeding that physicians facilitate, and that can draw a distinction that’s not so clear between medical treatment and human responsibility. But force feeding is problematic. You can offer them food and facilitate it for them, but not force it.
Why are Muslims typically buried in a simple shroud and grave?
There are prescribed rulings from the traditions of the Prophet about how to bury someone. You are buried in a simple shroud and put into the grave. The grave can’t be solid or covered, meaning that there should not be ornate mausoleums. The idea is that you return to the ground in a simple form. You don’t want to make the grave a site of worship.
Burial is a communal obligation, and it reflects your end. All the things you accumulate in your life, you don’t take them with you. The decay of the body is going to happen to you.
Another reason people are buried in shrouds is because they are considered the same. No matter what status you had in life, death is a certainty. For example, many Muslims are buried in the same garb they wore when they went on the hajj. It’s a sense of equality.
There are many Catholic and Protestant medical centers in the U.S. Is it difficult for Muslims to find spiritual support in them?
Just as any minority community, Muslims face challenges. If you are a minority, it’s hard to find people from the minority group to take care of you, and spiritual care is the same. There aren’t many schools that produce Muslim chaplains, but the field is growing and defining its parameters. There are not certifying bodies, so there are few people that can be hired by hospitals.
Spiritual support is also a new idea, stemming from Protestant roots during the last 50 or 60 years. For a structure that has a new idea of chaplaincy to then open the gamut to other forms of ministry is challenging.
In the hospital setting, there are very few resources for Muslims. Some patients seek expertise from local imams or ask for recommendations from the chaplaincy office.
Do you believe there are similarities between the Abrahamic faiths concerning end of life care?
I think that there are a lot of commonalities between the Abrahamic traditions in how they think about the sanctity and dignity of the body. The human life does not end here, there is a metaphysical reality.
Like Judaism, Islam has a very deep legal reasoning, which often has a lot of weight behind what you can and can’t do. But like Christianity, there is also a spiritual or theological component to the moral reasoning.
In Islam, things can be permissible by the law, but not the most wholly right thing to do. In regards to “Death with Dignity,” people say “how can you not give people dignity?” We give people dignity, but within the bounds of law. There is a symbiotic relationship between philosophy or moral theology and the legal structure. You have to account for both when you make end of life decisions.
There is no cookie-cutter response, and there are a lot of controversies in Islam, because end of life care is an emerging area.
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- The American Living Organ Donor Fund: Removing Financial Barriers To Benevolent Actions
- Starting The Conversation
- In Light Of Possible Abuse At Body Donation Centers, Experts Offer Advice
- Portable X-Ray Services Becoming More Common As Baby Boomers Age
- Still Alice: An Intimate, Sensitive Exploration Of Alzheimer’s
- May 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- June 2013
- May 2013
- April 2013
- March 2013
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- January 2013
- December 2012
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Daniel Gaitan serves as a content producer...More