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.
— 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.
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.”
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.
“What’s your name?”
“Mary.”
“Mary what?
“O’Connor.”
“From where?”
“From here.”
“No, you’re not.”
“I’m your daughter.”
“No, you’re not. What’s your name? . . .”
“We should get him a tape recorder.”
“He’s human. He needs a human voice.”
“But his is almost gone.”
“That doesn’t matter.”
Staring into the face of an undead ghost in a green tweed jacket and flat-cap over toast and cornflakes is unnerving at the best of times; and traumatic at the worst. Especially when that ghost is your father. And the cornflakes have gone soggy.
But unlike gothic novels or films where ghosts happily offer themselves up as symbols of repressed memories, traces of crimes against innocents, and (usually) murderous pasts, this ghost has never crossed over into the realm of the metaphorical. Inconveniently, it decides to remain very, very human. Actually, that depends on your definition of human.
Even more inconvenient is the fact that this ghost refuses to follow the script and disintegrate with the morning light. Instead, it prefers to haunt the modern comforts of an electric armchair; swapping dreary castles for daytime television and crumbling dungeons for motorised beds.
And that’s just the start of my day living with a living ghost. Or Alzheimer’s as it’s otherwise known. Or, more correctly, my father’s Alzheimer’s.
Living with Alzheimer’s, both as a carer and sufferer, is a growing phenomenon in the UK. Often confused with dementia, Alzheimer’s refers to a physical disease which affects the brain while dementia is simply a term for a number of symptoms associated with the progressive decline of brain function. These symptoms can include memory loss, difficulty with thinking and problem solving, and challenges with language and perception. There are over 400 types of dementia—with Alzheimer’s and vascular dementia as the most common forms. According to the Alzheimer’s Society of the UK, dementia is now the leading cause of death in the UK with someone developing it every three minutes. Alzheimer’s is classified as a “life-limiting” illness according to the NHS, but sufferers can live for many years after the initial diagnosis, depending on the progression of the disease. Divided into three stages, early, middle, and late, the symptoms of Alzheimer’s gradually become more severe as the disease progresses and more parts of the brain are affected.
In the early stages, having Alzheimer’s as a companion wasn’t too unpleasant; the emptiness hadn’t fully taken over and I had more human than spectre to talk to. I could still pretend to have a normal(ish) life with only the minor inconvenience of a (mostly) present parent, despite the occasional wandering through doors unexpectedly and lunatic outbursts. The human part kept his smiling eyes, watching the world orbit around the sweat-stained tea-pot and apple tart. But the Alzheimer’s relentless erasure of my father left a morbid spectre sitting in his chair at the kitchen table.
In the middle stages, my father’s personality and identity dropped away like discarded clothes. His manner of speech was the first to surrender to the disease. Forgetting words rapidly metamorphosised into hours of repetitive questioning, as if seeking to ground himself in concrete knowledge of the now while his fingers grabbed vainly at a slipping sense of reality. The final stages of the disease witnessed his childish cries for help without knowing what or who he wanted.
“Gone childish” is an archaic term that was once used to describe dementia and Alzheimer’s sufferers before these diseases were better understood. Capturing the vulnerability these diseases inflict on their sufferers, the phrase sums up the centrality of memory to the human experience. If our identities are formed by our experiences, and these experiences are stored in our memories, shaping who we are and how we make decisions, what can we do when we have no memory? Without a roadmap of precedence, how can you plan for the future or know yourself without knowing how you got to where you are now? Like children, Alzheimer’s sufferers lose a sense of the past and futurity. They become transfixed in the present like ghosts trapped in limbo.
The last stages of my father’s disease cemented his role in the family home as the new phantasm. Like a well-behaved, conventional ghost he punctuated our nights with night-walking, ghoulish shrieks, hallucinations, and knocking on doors at all hours while the day-time witnessed empty eyes peering out from behind the safety of a purple blanket. Innocent of blame, our ghost blocked our escape from the house. For fear of hurting himself, we couldn’t leave him alone but grew resentful for being held hostage by a madman with no memory or awareness of his own actions.
After being stripped of memory and identity, my father’s Alzheimer’s left a shell of body; a ghastly reminder of the person that had once inhabited it. Bereft of the markers of humanity, this animated mannequin asked, “What makes up a human? Is it the mind? Or the body? And what happens when you take one from the other?”
Researchers have identified the cause of Alzheimer’s as the build-up of abnormal structures in the brain called ‘plaques’ or ‘tangles’. These structures cause damage to brain cells and can block neuro-transmitters, preventing cells from communicating with each other. Over time, parts of the brain begin to shrink with the memory areas most commonly affected first. Why these build-ups occur or what triggers them is not yet understood, but researchers now know that it begins many years before symptoms appear.
Ancient Roman and Greek philosophers associated the symptoms dementia with the ageing process. However, it was not until 1901 when the German psychiatrist, Alois Alzheimer, identified the first case of the disease. Medical researchers during the twentieth century began to realise that the symptoms of dementia and Alzheimer’s were not a normal part of ageing and quickly adopted the name of Alzheimer’s disease to describe the pattern of symptoms relating to this type of neurological degeneration.
No physical markers like the puckered lines of surgery scars or the uneven hobble of a game leg signposted my father’s declining health. But the slow creep of this living death brought on grief long before his body was expected to fail. Without the essence of the person, all of their quirks and curiosities, which once animated a familiar body, how do you grieve for someone’s loss before they have died? And how do you cope with the guilt?
This type of grief is usually referred to as anticipatory grief. It is a type of grief that is experienced prior to death or a significant loss. Typically, it occurs when a loved one is diagnosed with a terminal or life-threatening illness, but it can also happen in the face of a personal diagnosis. However, it can often trigger feelings of guilt because people feel ashamed for grieving their loved one’s death before they are dead.
With my father’s memory gone, my connection with him was broken. During the later stages of the disease he forgot my name and my existence. Fading from my life, his body remained as a perverse mockery of the person that had once inhabited it. Now all that haunts me are the memories of peering over barley stalks before the autumn harvests at a grizzled old farmer in a flat cap and tweed jacket, a hand reaching out to help guide the walk home.
Changes do occur in many aspects of relationships between the affected person and his or her caregiver during the course of the disease. These changes, however, do not diminish a person’s need for love and affection.
The loss of companionship is perhaps the initial beginning of relationship changes. The caregiver, now assuming a caregiver role, misses the opportunities for intellectual conversation and misses that person who was a “sounding board” for any problems that arose or decisions that had to be made.
The person affected may have always taken care of the family’s finances, but as the disease progresses, the caregiver must learn to make all the decisions of financial and legal matters, which can be challenging and difficult for someone already overwhelmed. Some caregivers get help from a financial adviser to assist in these meticulous tasks and decisions.
Alzheimer’s disease affects the sexual relationship between partners, too. The affected person may exhibit hypersexuality, putting demands on the caregiver and, at times, be overly affectionate at the wrong time or place. On the other hand, interest in sex may wane or decrease, and the caregiver soon misses that loss of intimacy. Yet, there can be intimacy without sexual relations. Cuddling, dancing, enjoying moments together holding hands, gentle massages are all ways of experiencing intimacy and ways to satisfy the needs of both the affected person and the caregiver.
The caregiver should try to be honest with his or her feelings regarding these relationship changes and to find ways to express them, whether it be through talking with close friends or by joining a support group.
Relationships with family and friends sometimes change drastically. Often family and friends are intimidated or are uneasy around someone with Alzheimer’s. They don’t know how to communicate with them and may feel threatened by his or her behaviors.
The caregiver can become just as isolated as his or her loved one. The caregiver should contact family and friends and share the loved one’s condition, with tips on communicating and ways they can visit in a nonthreatening manner.
The caregiver should encourage visits with family and friends for the sake of their loved one and themselves.
My parents lived good lives and thought they’d prepared for good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance directives they’d signed at the urging of their elder lawyer. But after my father had a devastating stroke and descended into dementia, the documents offered my mother (his medical decision-maker) little guidance. Even though dementia is the nation’s most feared disease after cancer, the directive didn’t mention it. And even though millions of Americans have tiny internal life-sustaining devices like pacemakers, my mother was at sea when doctors asked her to authorize one for my father.
Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.
In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.
If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.
With that in mind, I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive. I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals. I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I’ve included it in my new book, The Art of Dying Well: A Practical Guide to a Good End of Life. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.
Dear Medical Advocate;
If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.
I wish to remove all barriers to a peaceful and timely death.
Please ask my medical team to provide Comfort Care Only.
Try to qualify me for hospice.
I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.
Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
Do not transport me to a hospital. I prefer to die in the place that has become my home.
Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
Do not treat my infections with antibiotics—give me painkillers instead.
Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
Do not force or coax me to eat.
Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal.
Ask to stop, and do not give permission to start, dialysis.
Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
Do keep me out of physical pain, with opioids if necessary.
Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.
If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.
Study authors say clinicians shouldn’t forget that patients, partners still want it
by Judy George
Most people with dementia who lived at home and had a partner were sexually active, a national study of older adults found.
Of partnered people, 59% of men and 51% of women who screened positive for dementia were sexually active, including 41% who were 80 to 91 years old, reported Stacy Tessler Lindau, MD, of the University of Chicago, and co-authors in the Journal of the American Geriatrics Society.
This is the first study to establish nationally representative evidence about sexuality and cognitive function of older adults at home, Lindau said.
“Sexuality is an important aspect of life in aging, including for people with dementia,” she told MedPage Today. “We found that people with dementia, mild cognitive impairment, and no impairment share positive attitudes about sex and most said they were having sex less often than they would like.”
Untreated sexual dysfunction stops older people from deriving the full benefit of sex, Lindau added: “Our study shows that people with dementia, especially women, were not talking with their doctors about these problems.”
In this study, Lindau and colleagues analyzed data from 3,196 adults age 62 to 91 from the National Social Life, Health, and Aging Project, a longitudinal study conducted by personal interviews and leave-behind questionnaires that included spouses and cohabitating partners. They used an adapted Montreal Cognitive Assessment (MoCA) to classify participants into normal, mild cognitive impairment, and dementia categories.
Their analysis showed:
Of all home-dwelling people with dementia, 46% of men and 18% of women were sexually active
Of home-dwelling partnered people with dementia, 59% of men and 51% of women were sexually active
Many men and women — including 74% of men and 38% of women with dementia — regarded sex as an important part of life
More than one-third of men and one in 10 women with dementia reported bothersome sexual problems, especially lack of interest in sex
About one in 10 people of both sexes felt threatened or frightened by a partner
More men (17%) than women (1%) with dementia spoke with a doctor about sex
The likelihood of sexual activity was lower among partnered people with worse cognitive function
“Physicians need to balance the dignity and autonomy of the person with dementia who desires sex with the need to protect the person from harm,” said Lindau, who posted a blog with resources for clinicians seeking guidance about sexual consent. “Our study tells physicians that sexual activity is common among home-dwelling people with dementia and should not be ignored or dismissed as an important aspect of life with dementia.”
This study has several limitations, the authors noted: the reliability of survey responses may decline with worse cognitive function. People with signs of overt dementia that was evident to the study interviewers were excluded. The study centered mainly on male-female partnerships and does not yield insights about same-sex relationships.
