Category: Dementia

Posted on

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article ↪HERE↩!

Posted on

1 in 2 older adults now die with a dementia diagnosis

by Kim Callinan

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.

Complete Article ↪HERE↩!

Posted on

For end-stage dementia, Medicare can make hospice harder to access

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.

Complete Article ↪HERE↩!

Posted on

9 Items That Make Home Caregiving Easier

These resources can reduce challenges in caring for loved ones

By Robin L. Flanigan

Caregiving is hard, but don’t let your home make it harder.

Bathrooms, dim lighting and even furniture pose risks when taking care of a loved one. But new tools and techniques can improve the safety of a home, making caregiving a bit easier. And it doesn’t need to be complicated in order to be helpful.

“Household items and a home environment, once innocuous, need to be reconsidered through a new lens,” says Monica Moreno, senior director of care and support at the Chicago-based Alzheimer’s Association, which offers a home safety checklist to help caregivers keep those living with dementia safe and independent as long as possible. AARP’s free Homefit Guide features smart ways to make a home comfortable and a great fit for people of all ages.

Here are nine tools designed to help caregivers ease the burden of daily challenges. 

1. Sit-to-stand toilet

Research shows that a quarter of falls take place in the bathroom, so assistive toilet seats with adjustable handlebars and seat heights — for safe and stable toilet transfers — are helpful when dealing with weakness and instability issues.

“It’s common for individuals to easily sit down to go to the bathroom, but then they can’t get off the toilet,” says registered nurse Eboni I. Green, cofounder and CEO of Caregiver Support Services, based in Omaha, Nebraska. “Or if they have the ability to get off, they might grab on to an unsecure towel rack and can easily fall.”

2. Adjustable beds

“These may be costly, but they’re a real investment in helping to adjust comfort levels with the push of a button,” says Green. These beds can help create an upright position for eating and are a good tool for preventing bedsores. They also allow for quicker repositioning, and safer and faster transfers in and out of bed. “These beds are revolutionary,” Green says.

3. Walk-in shower with handrails

Making it easy to shower will make it easier for caregivers to get someone with dementia or other challenges to bathe.

Walk-in showers don’t require high, risky steps and offer more room for a seat or bench and grab bars. Be sure to add anti-slip flooring, and faucets that regulate water flow and temperature to prevent scalding.

Costs vary dramatically depending on size and materials. Those being cared for can contribute to the modification process by choosing the tiling, door style and other features.

4. Motion-sensor lights

As aging adults cope with reduced eyesight and slower reactions, caregivers can help their loved ones find their way around — and reduce tripping hazards — by installing wireless motion-sensor lights that illuminate dim areas such as stairs and long hallways.

These lights come battery-operated, have built-in magnets and double-sided adhesives, and shut off after a short amount of inactive time, usually from 15 to 30 seconds.

5. In-home cameras

From fixed models to those that can swivel, tilt and zoom, indoor surveillance cameras help monitor areas that pose greater hazards for accidents, slips and falls. Cameras can also prevent a loved one from leaving a home or wandering off without a caregiver’s knowledge. Keep in mind that consent before installation may be required for this type of surveillance.

“A lot of us caregivers hear the mantra ‘take care of yourself’ but we may not know where to start,” says Eboni I. Green, cofounder and CEO of Caregiver Support Services, which offers an “Ask Emma” caregiver wellness tool.

Named after Green’s mother-in-law and created in part from Green’s dissertation on caregiver wellness, Ask Emma guides caregivers through statements designed to offer a status of sorts for psychological wellness, financial wellness, social well-being and spiritual well-being, among other categories.

The “strength-based” tool then points out where the caregiver is doing well before linking to resources to help with an area that could use improvement.

6. GPS trackers

No matter the distance, GPS trackers encourage loved ones to live an independent life while letting caregivers know exactly where they are. This technology allows for real-time tracking, the setup of safe zones and custom alerts to let caregivers know someone has wandered off. Other features often included are two-way communication and the ability to give others, like additional family members, access to the same information.

GPS devices can be worn as a necklace, watch or bracelet — there are even trackers that come in the form of a shoe insert. Keep in mind that GPS devices may have monthly fees associated with them.

7. Monitoring apps

There are a whole host of digital apps that can be used as monitors, reminders and providers of useful information. The Hero app, when used with a medication dispensing system, tracks refills, adherence and up-to-date information about each prescription. PainScale tracks pain, treatments, medication, activity, mood and sleep. Caring Village stores important documents, personalized to-do lists, daily or weekly schedules of care, and a wellness journal to keep others updated, among other features.

8. Customizable digital clocks

Look for clocks with big, easy-to-read displays or voice capabilities. Some clocks display the time, date and day of the week and allow caregivers to set reminders such as “It is now Saturday afternoon.” Caregivers can program alarms, events, birthdays and holidays. These clocks can mount to the wall or sit on a tabletop.

Models with personalized voice reminders — for medication, appointments and tasks — let the person being cared for hear the comforting voice of the caregiver.

9. Erasable whiteboards and calendars

Place these in commonly frequented areas of the house such as the kitchen and family room, suggests Moreno.

“Larger whiteboards and calendars tend to be easier to use and more legible for people with dementia,” she says.

Complete Article ↪HERE↩!

Posted on

Study highlights challenges providing end-of-life dementia care

by Sandy Cheu

Providing end-of-life dementia care is rewarding but full of challenges including having to help family members accept that their loved one is dying, a study of aged care managers has found.

The study, published in BMC Geriatrics, explored the experiences and perspectives of 20 residential or  care managers at 11 aged care homes in New South Wales and Victoria of dementia specialists HammondCare.

It found that continuous skill development of frontline staff, iterative family discussions, and partnership building between aged care staff and general practitioners are required for optimal end-of-life dementia care in aged care homes.

Senior researcher on the study Professor Josephine Clayton said the study found that aged care managers found delivering end-of-life dementia care relentless but rewarding.

“Staff are really passionate and committed about providing good end-of-life care for the residents but they did however experience a number of challenges in delivering that,” Professor Clayton told Australian Ageing Agenda.

Other themes identified in the research include the need to lay the groundwork to establish what families understand about dementia, play peacemaker in the face of unrealistic family demands and expectations such as for medical intervention and chip away at denial and cultivate a path towards acceptance of death.

“Families and even some staff didn’t necessarily think of about dementia as a life limiting or terminal condition, so there was a need for a constant education around that, which can be confronting for families,” said Professor Clayton director of HammondCare’s Centre for Learning and Research in Palliative Care.

“And because the residents at our facilities usually have lost the capacity to make decisions for themselves, it’s very much around the staff communicating regularly with the family members about what the person would have wanted,” Professor Clayton said.

The need to support and strengthen staff and befriend GPs comfortable with providing palliative care were the other themes identified in the study.

“Sometimes it might be junior staff who might not have experienced this death in their own life and it can be confronting for them to have to deal with death and dying. And so there was a need for constant education and support for the frontline staff,” she said.

“Some GPs were very uncomfortable with prescribing medications that might be needed to ensure a person can be in comfort at the end of life, or they might have an attitude of ‘oh something changed, go to hospital’, which was not what the family or the person would have wanted,” Professor Clayton said.

While addressing the barriers is “not just a simple fix,” it is positive that the aged care royal commission has highlighted some of these challenges, Professor Clayton said.

“There needs to be an investment in funds and education to support our frontline staff and to enable them to have those regular communications to support families,” she said.

Aged care staff and GPs also need to be rewarded and paid appropriately to attract the right people into the sector, Professor Clayton said.

“There’s a number of wonderful, dedicated GPs out there who do visit nursing homes, but for some of them is just not practical for their business to be able to come to nursing homes because it’s a lot of travel back and forth for that visit and they may not be appropriately remunerated, she said.

Access “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia.

Complete Article ↪HERE↩!

Posted on

Aiding Her Dying Husband

— A Geriatrician Learns the Emotional and Physical Toll of Caregiving

Dr. Rebecca Elon’s life took an unexpected turn in 2013 when she noticed personality changes and judgment lapses in her husband, Dr. William Henry Adler III. He was eventually diagnosed with frontotemporal dementia with motor neuron disease and died in February.

By Judith Graham

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.

Dr. Rebecca Elon’s sister Melissa Davis (right) was the primary caretaker for their mother, Betty Davis, for the past 10 years. But new living arrangements had to be made for their mother when Melissa Davis died of esophageal cancer in May 2020.

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.”

Complete Article ↪HERE↩!

Posted on

We asked two experts to watch The Father and Supernova.

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.

Frightening experience

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.

Still inside

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.

Complete Article ↪HERE↩!