Dr. Molly Camp is an associate professor of psychiatry at University of Texas Southwestern Medical Center in Dallas. In a center news release, she said there are five domains to consider:
Personal needs and hygiene: Basic self-care activities, including bathing, dressing and toileting, must be met. A person’s ability to get in and out of tubs and showers and their risk of falling should be considered.
Home environment: Consider the ability to handle basic maintenance and repairs, as well as access to electricity and water, a sufficiently sanitary living environment and how to avoid safety hazards, such as structural deficiencies.
Necessary activities: Assess whether your loved one can complete complex, essential tasks such as transportation, shopping, meal preparation, cleaning and using technology.
Medical self-care: Your loved one should be able to manage their medications, care for minor wounds and self-monitor for illness.
Financial affairs: Evaluate whether the person has the ability to pay bills on time, track other finances, avoid exploitation, and enter into binding contracts when needed.
Of course, Camp noted, family members may be able to help manage finances and home visitation programs may be able to help with chores such as cleaning and cooking.
Nearly half of all older adults now die with a dementia diagnosis, up more than one-third (36%) in just the past two decades, according to a new study published in the Journal of the American Medical Association.
While these findings are disheartening, they also serve to underscore the importance of advance care planning for the care we want – and don’t want – should we get dementia. Thinking through these difficult decisions and having conversations with our loved ones and healthcare providers now, while we are still capable of making our healthcare decisions, will be a gift to our loved ones and to ourselves.
A good time to discuss your end-of-life care wishes with your family is when you are together, like Memorial Day weekend in May.
It’s important to keep in mind that dementia, as a public health crisis, came as a result of significant advancements in medicine.
As we have discovered cures or treatments for many diseases over the last century that used to be life-threatening, life expectancy has increased, and more people are dying with and from dementia. In short, medicine can prolong how long the body lasts, but not the mind.
However, the default mode within our medical system is to extend the patient’s life, regardless of the quality of life, even for people with advanced dementia. We even subject advanced dementia patients to aggressive end-of-life interventions that inflict needless suffering with little thought.
Dementia patients take comfort from their surroundings; transferring them to a hospital causes agitation, upset and in the most extreme situations, trauma. Yet, nearly six out of 10 nursing home residents with advanced dementia (57%) go to the emergency room at least once in the last month of life.
Furthermore, emergency room physicians are trained to extend life. This reality means you could be subjecting a patient with advanced dementia to cracked ribs as a result of cardiopulmonary resuscitation (CPR), an uncomfortable urinary catheter, or a breathing tube.
A small percentage of people may want these aggressive interventions. However, more than nine out of 10 Americans (92%) agree that a person should “have the legal right to put in writing in advance that they want their caregiver and medical team to stop medical treatments when they are at a specific stage of dementia,” according to a 2018 survey by NORC and the University of Chicago commissioned by my organization.
The way to solve this crisis is to balance our advances in medicine with empathy and respect for the voice and wishes of the individual; to be seen and heard as an individual and not just as a patient.
While every person does have a legal right to forgo treatments, operationalizing this desire is not clear-cut. Dementia is a progressive disease: it’s not always obvious to loved ones the point at which their loved one would want to forgo treatments. Is it when they no longer recognize you, even if they seem otherwise happy? Is it only if they get violent? Or perhaps it takes multiple factors (e.g., can no longer eat, speak, dress themselves or carry on a conversation)?
I encourage all of us to give our loved ones the gift of clarity by filling out the free-of-charge Compassion & Choices dementia values and priorities online tool (values-tool.compassionandchoices.org); this tool helps you create a personalized care plan, based on your selected preferences, that your health care proxy can use to care for you should you get dementia.
While unfortunately there is no cure for dementia, we can take proactive steps to die naturally, potentially with less suffering, through advance care planning.
The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say
By Emily Harris
Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.
When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.
The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.
But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.
After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.
Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.
Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.
Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.
Jean’s experience isn’t an outlier.
Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.
Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.
The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.
Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.
For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.
Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.
“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director
Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.
But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.
Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.
So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.
In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.
“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”
CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.
The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.
Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.
Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.
Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.
“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.
Jean Bishop’s family agrees with that.
Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.
Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.
Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.
“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.
During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.
Voluntarily stopping eating and drinking (VSED) will allow a woman with Alzheimer’s to die on her own terms.
By Kevyn Burger
Warm and lively, Cheryl Harms Hauser relished her hostess duties when a visitor arrived at her Hopkins home, telling the back stories of the art hanging on the walls, selecting the perfect color of mug for coffee.
Despite her outgoing personality and fashionable appearance, Hauser, 75, did not dress herself. She can’t dial a phone, set a table or follow the plot line in a television series.
Two years ago she was diagnosed as having Alzheimer’s disease. Now this wife, mother and grandmother is planning a way to die before dementia claims her.
Hauser has decided that at an as yet unnamed date, she will hasten her death through a process called VSED: she will voluntarily stop eating and drinking.
“When the day comes when nothing matters anymore, I’ll begin,” she said. “My brother died of this disease and it was torture. I don’t want that for me and my family.”
In the past few years, VSED has emerged as a possible course of action for people diagnosed with terminal illnesses or progressive diseases. In the face of great suffering or a long, irreversible deterioration, the people who choose VSED refuse to swallow food or sip liquids. It typically takes 10 days to two weeks for them to die.
“Some people want to go out fighting to the end, but that’s not for everyone,” said Dr. Timothy Quill, a Rochester, N.Y., palliative care physician who has provided medical support to VSED patients. Quill also co-authored “Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death,” which was published earlier this year.
“Of what I call the ‘last resort’ options, VSED is the most available and least well described,” he said. “It appeals to people on the sicker end of the spectrum. They’re prepared for the end of their life and want to speed things up. It’s not dissimilar to someone who chooses to end life-sustaining treatments.”
Humans have informally chosen VSED for centuries. But carrying it out today is no simple act. People opting for this method need a doctor’s supervision that includes medication, symptom management and hospice care, Quill said.
They also need family support.
“They need a partner with some sophistication who is willing to go through this process with them,” Quill said. “They need to share the same values and have many conversations to make sure everyone is on the same page.”
For Hauser, that partner is her husband, David McNally.
Friends introduced the pair in 2007. A mother of three, Hauser was thrice divorced and McNally was a widower whose first wife and the mother of his five children had died of ovarian cancer.
“We crawled into love,” Hauser said, smiling at her husband. “With my track record, I resisted for a long time before I succumbed.”
Four years into their relationship, Hauser was by McNally’s side as he faced a debilitating form of throat cancer. His radiation treatments left him thin, weakened and dependent on a feeding tube for a time.
“We didn’t need to get married, but when we bought this house together [in 2016], I turned a corner. Something bubbled up,” McNally said. “I told Cheryl, ‘I wouldn’t mind being married. Actually, I would love it.'”
But within a few years of exchanging their vows, they both noticed changes in Hauser’s behavior and memory. That led to her being diagnosed with the fatal disease.
“Cheryl’s level of self-awareness is high. She observes things and can talk about them because she is not in denial or frightened. This side of her brain is dying,” said McNally, touching his wife’s styled hair. “We have seen the MRIs.”
A leadership consultant, speaker and author of five bestselling business books, McNally has put his career on hold while he assumes duties as his wife’s full-time caregiver.
Because Hauser is no longer comfortable being alone, her daughter Wendy Longacre Brown creates a weekly Google calendar and shares it with her sister and a few of Hauser’s friends so they can sign up to be on duty when McNally needs a break.
“My mom prides herself on being dignified,” Brown said. “She’s the person who always showed up with lipstick, sent the handwritten cards. She’s losing the values she’s held closely, the ones that identify who she is. She’s begun mourning that person and I mourn with her.”
Brown is a trained and certified death doula whose work focuses on providing emotional and spiritual support, rather than medical care, for the dying and their families. She’s now using her knowledge to help her mother with end-of-life decisions.
“Mom has tremendous courage and clarity. She’s decided she doesn’t want her life to end in a nursing home, unable to recognize her loved ones or herself in the mirror,” said Brown. “I’m so proud of her. She gets up every day to live the best life she can.”
A good death
Brown became familiar with VSED through the influential book “Choosing to Die” by Phyllis Shacter, which she shared with her mother.
“That got the conversation started,” Brown said. “We talked and talked and Mom said right away, ‘I think this is for me.'”
Part memoir, part how-to manual, it tells how Shacter helped Alan, her husband of 26 years, carry out his wish to use VSED to hasten his death.
“That was in 2011. We had no guidance at the time on how to do this,” she said. “We were the guinea pigs, the forerunners. When we heard about it, it sounded horrible. After we investigated, it didn’t.”
Like Hauser, Alan was diagnosed with Alzheimer’s. When he was in the early stages of the disease, he signed a health care directive and authorized his wife to carry out his wishes.
“We understood what lay ahead,” she said. “Alan had to stop eating and drinking while he was still mentally competent. One day he told me, ‘I’m ready. It’s time.'”
To start the process, Alan consumed only 500 calories a day for five days. He said his goodbyes to his daughter and friends, then he settled into his bed and soon was mostly sleeping.
“We played music, I massaged him. He wasn’t hungry, but he was thirsty and I sprayed mist into his mouth,” she said. “On the last day he was comatose, but when I said, ‘Blink your eyes if you are comfortable,’ he did. He had taken care of his business and I knew he was all right.”
Shacter relied on medical supervision. In the nine days that it took Alan to die, he received ongoing care and medication from hospice caregivers and a physician.
“These are not suicides, but rather elective deaths,” she said. “We made a conscious decision to go outside the natural order to bring death on.”
A little known option
Quill explained that hunger quickly diminishes in VSED patients, but they remain thirsty, which is treated with oral swabs, mists or swishing and spitting. Once they become dehydrated, their blood pressure drops, resulting in organ failure. That’s when medical and hospice providers begin administering stronger painkillers. Most patients experience agitation, delirium and/or hallucinations in the 24 hours before death and are sedated with anti-anxiety drugs and tranquilizers.
By the time death nears, patients have fallen into unconsciousness. Then they stop breathing and their heart stops.
“There’s no suffering in the last hours. They appear to be sleeping,” said Quill. “If you view death as part of the life cycle, which is how I see it, it’s a quiet process.”
Thaddeus Pope, a professor at Mitchell Hamline School of Law who has spent 20 years writing and teaching about end-of-life precedents,contributed the legal perspectives of VSED as co-editor of Quill’s book. He said the topic often remains taboo among both medical practitioners and individuals at the end of life.
“This is a legitimate option for those in late stage disease, but it’s not on the menu,” Pope said.”It’s almost invisible, underground. You have to know to ask for it. People don’t know how to talk to their doctor about VSED.”
Leading the ship
Hauser has signed an advance care directive, which has an attachment that spells out her desire to use VSED to hasten her death. It asks for the process to begin when, among other things, “I lose my ability to have logical conversations,” and “When I get lost in familiar locations.”
The document also asks that she receive her care at home with no life-prolonging procedures so that she can die with “dignity and grace.”
In March of 2020, Brown shot a video of her mother stating her wishes. Brown plans to record another video when the time to execute the VSED plan begins “so if there is an authority who questions whose idea this was, the source will be in front of them,” Brown said.
Brown talks to her mother and stepfather every day and visits frequently to track the small cues that mark the progression of the disease in her mother.
“My job is to support my mom and her wishes and to know when she is still able to make the decision on her own so we can fulfill that wish,” she said.
Harms said she wants to spend her final days in the den of the home she shares with McNally. She’s also specified the songs she wants playing and the people she hopes will stop by. But she understands that there’s always an out.
“If, three days in, she says, ‘This is too scary. I want a meal,’ we will remind her of her words and show her the video. But if she decides she’s not willing to do it anymore, we will honor that, no question,” Brown said. “It will be a big surprise to me if she says stop. No one is leading this ship but my mom.”
For now, Hauser and McNally remain socially active. Hauser regularly attends her grandchildren’s sporting events (although she sometimes needs to be reminded about which team to root for).
In the past year, she has taken up a new pastime — and earned a nickname.She dances to music while painting, dabbing and dashing acrylic paint onto canvases to create one-of-a-kind colorful abstracts. McNally calls her Picassorina.
She’s asked that her paintings be offered for sale at the reception that will follow her memorial service, and that the proceeds go to an as yet unnamed end-of-life nonprofit.
“I’ve always loved art and creating like this is very therapeutic. It makes me feel good,” Hauser said. “My mantra is, I will not do anything that doesn’t bring me joy.”
Hauser and McNally have been transparent with their family and friends about their decisions and consider sharing their part of Hauser’s final mission — and her legacy.
“We talk openly about VSED and we want to encourage people to have these conversations about death and how they want to die,” she said. “I have had time to get to acceptance and I want to share my journey. This is what I have to give.”
The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.
This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.
It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.
Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.
And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.
All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.
Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.
Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”
Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.
In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.
Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.
Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.
By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.
In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.
“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”
Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.
Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.
By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.
“I finally had help,” she told me. “It was like night and day.”
Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.
“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.
Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.
For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.
“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”
Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.
That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”
“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”
And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.
“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”
These new films show the fear and loss that come with dementia
BY Fran McInerney
Two new films explore the fear of forgetting, loss of control, and other complexities that accompany a dementia diagnosis. The Father and Supernova , both released this month, grapple with the challenges confronting people living with dementia and those who love them.
Dementia is the seventh leading cause of death worldwide , and the second leading cause of death in Australia . The media has an important role in shaping public understanding of poorly understood conditions such as dementia , and it is pleasing to see it considered thoughtfully in both films.
We watched these films through our lenses as a clinician and a neuroscientist. The different causes and conditions that make up the umbrella term of dementia mean the experiences of people living with it — and their loved ones — can differ widely. These films illustrate this well.
Marching through the brain
Because different parts of the brain control different functions, the type of dementia is defined by its pathology, origin in the brain and progression .
In Supernova, directed by British filmmaker Harry Macqueen and starring Colin Firth and Stanley Tucci, we see a fairly accurate representation of frontotemporal dementia. Specifically, this is the type where certain language skills are impaired, known as semantic dementia.
The Father, meanwhile, directed by French playwright Florian Zeller and based on his play of the same name, centres on a protagonist, Anthony (played by Anthony Hopkins), with Alzheimer’s disease, the most common cause of dementia.
Owing to the neurodegenerative nature of dementia, people with this diagnosis experience a progressive deterioration of memory, thinking and behaviour, and gradually lose the ability to perform daily tasks and other physical functions, ultimately leading to death.
‘I don’t need her or anyone else. I can manage very well on my own.’
Both films accurately reflect many of the key early features of these forms of dementia and provide insight into the varied presentations and issues associated with the conditions.
Whereas The Father focuses more heavily on the experience of the individual living with dementia, Supernova gives more attention to shared grief and loss.
Caring and sharing
In Supernova, Tusker (Tucci) and Sam (Firth) take a roadtrip through stunning northern England. We soon learn the journey is as much an adventure to visit Sam’s family, as it is an exploration of their own mortality.
‘You’re still the same person, Tusker,’ says Sam. ‘No I’m not, I just look like him,’ his partner responds.
Unlike many other illnesses, those living with dementia frequently show no outward physical signs of their condition until late in its course, and Tusker appears in good physical health.
We witness Sam’s panic when Tusker and their dog Ruby go missing. Impulsivity and spatial disorientation are common phenomena experienced in dementia. Later, Sam masks his distress (as carers often do), attributing his tears to cutting an onion while preparing dinner.
‘Can you tell? That it’s gotten worse?’
Dementia is a condition that affects the person progressively and globally; we initially only see subtle symptoms of Tusker’s language loss, for example, when he can’t find the word ‘triangle’. Later we note his loss of instrumental function: needing two hands to guide a glass to his mouth, negotiating which arm goes into which sleeve while dressing. Sam tenderly maintains Tusker’s dignity while helping him dress.
When Sam finds Tusker’s notebook, the writing in it has deteriorated across the pages to an indecipherable scrawl. The last pages are blank.
Tusker declares he is dying — dementia is a terminal illness — but how long he has left is unknown. The median time from dementia diagnosis to death is five years. For a previously high-achieving person like Tusker, the loss of his cognitive ability feels more profound to the viewer.
While The Father may appear to be an imagined horror story, it masterfully presents the disorientating and frightening reality for a person living with dementia.
Anthony is a powerful and compelling character who draws us into his internal chaos – unaware that he is losing his sense of self in place and time. We learn he has been an engineer and father of two daughters, and lives in a comfortable dwelling in a leafy London suburb. He is by turns irascible and charming. Like Tusker, he appears physically fit, well-groomed and fed.
The early narrative tension revolves around Anthony refusing home help. He denies verbally abusing a recent carer and accuses her of stealing his watch; when this is shown to be false he shows no insight or remorse. Those living with dementia may strive to make sense of things they cannot remember by imaginatively filling in the gaps .
People with dementia are altered by the disease, but it’s important to remember that who they are as a person still endures. IMDB
Seeing the world through Anthony’s eyes is a masterful plot device as we the viewers are not quite sure of what is ‘real’. At some early points we wonder if Anthony is being abused or gaslighted as we are drawn into his perceptions; later we learn that the lens through which we see Anthony’s world is distorted, but a terrifying reality to him.
Like all of us, Anthony is capable of harshness and tenderness, of charm and cruelty. Those experiencing dementia often have diminished control over their emotions and behaviours and this can be exacerbated by stress.
A small weakness of the film is that we gain no real sense of Anthony’s earlier life. Anthony’s temper may indeed be an enduring part of his personality, though it’s more likely a consequence of his serious disease. This is an important point for carers to understand. When his son-in-law challenges him to stop ‘getting on everyone’s tits’ we have some sympathy for Anthony, who we begin to realise is behaving fearfully rather than deliberately.
Eventually Anthony is reduced to sobs: ‘Lost all my leaves. Branches. Wind. Rain’. As he moves from the moderate to advanced stage of dementia , the need for tender and humane care is clear.
A key theme with many films exploring dementia, is the end — not just the end of the story, but the end of life.
In The Father we are drawn into Anthony’s agonising reality, the quiet chaos of tomorrow. In Supernova, we understand that Tusker chooses to write the end of his own story. Individuals living with dementia may be altered by the disease process, but it’s important to remember that who they are as a person endures.
The nihilistic vision of these films, while powerful and thought-provoking, is not the only possible construction of dementia. Though we must come to terms with the fact that dementia is a terminal disease, the end point does not negate the imperative to respond to the needs of the person; indeed, it highlights the need for empathy.
When the documentary filmmaker Kirsten Johnson learned her dad had dementia, she decided to kill him herself. Over and over again.
The result is the new film “Dick Johnson Is Dead,” which is available on Netflix starting Friday. In it, Johnson combines staged enactments of her father dying in accidental ways (tumbling down the stairs or getting hit by a falling air conditioner) with scenes from their life navigating his memory loss, cognitive decline, and impending death.
The film is both incredibly moving and funny, an exploration of the coming grief and an act of preserving what it is that Johnson is so sad to be losing. The “deaths” are played for laughs — moments from which Dick Johnson is resurrected in defiance of the finality of death, but against the backdrop of a very real, irreversible progression toward that ultimate fate.
The film debuted earlier this year (before the pandemic fully arrived in the United States) at the Sundance Film Festival, where it received a special award for innovation in nonfiction storytelling.
Johnson this week spoke to STAT from New York about making the film. Below are excerpts from the conversation, lightly edited for clarity.
Before your dad developed dementia, your mom died from Alzheimer’s. Did your experience with your mom inform you making this film, or even make it possible for you to make it?
Completely, and in many ways. I was really just devastated by her Alzheimer’s. I kept not seeing it coming, the way in which Alzheimer’s gets worse and worse. I would think this is as bad as it can get, and it’d be like, oh no, it became worse. So I really went through that as a period of grieving, and then more grieving, and then more grieving.
My previous film, “Cameraperson,” is an inquiry into memory and going back into all this footage that I shot over 25 years of being a cameraperson. I became very interested in memory and how memory functions because of her Alzheimer’s, and then I became very interested in time and how time functions. And then I was relating that to cinema.
When you’re looking at a movie, you’re not looking at a memory. You’re experiencing something, and you’re often looking at a dead person, like you’re watching Buster Keaton. But Buster Keaton was dead before I ever watched one of his movies and yet his movies are totally alive. So what is that? And that’s how I set upon the idea of making this movie with my dad, as a way of being defiant toward dementia, being defiant toward death. Like I’m going to laugh this time, I’m not going to just do the veil of tears that I did last time.
You say in the film that at first, because of what your mom went through, that when you first started hearing about your dad’s memory and cognitive issues, you thought, “this isn’t happening again, no way,” which I think is what a lot of people feel initially. How did you go from that point of denial to accepting this to the point you could make a humorous film about it?
Sometimes compartmentalization serves people. It helps us function. Sometimes, though, denial and avoidance and silence just let festering things fester more.
I’m really interested in how humans cope with exposure at scale to very difficult things. My father was a psychiatrist. He spent 50 years treating people with a variety of mental illnesses, and he’s someone always looking for a joke. And I think that was one of the ways in which he coped with how much trauma he encountered. So I was trying to learn from his methodology, learn from my career, of how does this craft — whatever craft it is that we have, whether it’s our medical skills or our filmmaking skills — how do we work with our craft to transform pain and difficulty into curiosity, hope, laughter? Because I needed that.
At one point in the film, as part one of preparing for one these fantasy death sequences, your dad is in a casket, and you say seeing him breathing in there makes it less hard. The enactments of his death are generally slapstick and funny, but still, was taking on your dad’s death as your job difficult, even if it was in defiance?
It definitely had plenty of difficult moments, and yet because my dad has dementia, I was not going to avoid the difficult moments. They’re already in the house, so like, OK, how do we engage with them? Seeing people who work in these stressed positions, who are caregivers of many forms, the people who are doing it with lightness, who are doing it with humor and acceptance of the absurdity or the obscenity of it, that often helps.
The other thing I’m really interested in is images, and how images imprint on our brains — the idea of the indelible image. As I worked over the years, I realized that what is often the unforgettable image is the impossible image. So if you think about the things that have like, “Whoa, I saw this and I can never unsee it,” it’s often seeing something like a body in a position it’s not supposed to be in, or a body in a position that is unfamiliar to you. And accidents and death and disease, they all do strange things to the body. It’s this idea of being haunted by an image. We really file certain things away as, “OK, this is exceptional.” So I deliberately wanted to play with that, and see what would happen if I created an image of my father, like the indelible image of my father lying at the bottom of the stairs, but then he can get back up and we can laugh about it.
In another moment in the film, you ask a woman whose husband had been a pathologist if that changed her relationship with death, just being in the vicinity of it. And so for you, how did making a film about the end of life and death change your relationship with death?
I’m increasingly interested in things I wasn’t interested in before. And I certainly think there’s a great probability that I will have dementia. And there’s a part of me that’s like, “Huh, I kind of can’t wait to see what it’s going to feel like.” I know so much about it from super close proximity, but I don’t know it from the inside. But I’m also like, “Please let me die another way.”
But the film is healing. It has given me a way to do this differently than I did with my mom.
The film was made before the pandemic, but with that, there’s just been so much death in the past nine months, and I wonder if making the film has shaped your thinking about the pandemic and how many people have died.
Like each of us in our own ways, I’m really struggling with how to wrap my brain around this. You know, a million deaths? I talk about the scale of things that people encounter during a lifetime when they’re a professional who really looks at death. Like, I did 225 Holocaust interviews, but I didn’t do 6 million Holocaust interviews, right? And there is a way in which the individual brain may not have the capacity to allow in global-scale pain, and yet that is what is being asked of us. It’s also being asked of us in terms of climate change.
I’m definitely overwhelmed. I’m also deeply interested in the fact that we are now sharing anticipatory grief. I feel like dementia introduced me to that concept. You know worse is coming so what do you do with that? And you know finality may be coming. What do you do with that? This concept of, we’re in the long middle of the pandemic right now, we don’t know when it ends — that’s a very uncomfortable place for humans.
You tell someone in the movie that we all carry parts of our parents in us. And then you ask what he carries of his parents. So I’ll just end by asking, what do you carry of your parents?
From my mother, I know that she keeps showing up. She keeps being here. She doesn’t go away, and I’m comforted by her presence. She had a great love of color and I’m sitting here looking at what I’m surrounded by, and there’s an explosion of color all around me. And I think, that’s my mom.
From my father, I have this wish to listen more and I have this desire to laugh more.