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.
Dementia strikes about one in 13 lesbian, gay or bisexual seniors in the United States, a new study finds.
“Current estimates suggest that more than 200,000 sexual minorities in the U.S. are living with dementia, but — before our study — almost nothing was known about the prevalence of dementia among people in this group who do not have HIV/AIDS-related dementia,” said Jason Flatt. He is an assistant professor at the University of California, San Francisco School of Nursing.
The study included more than 3,700 lesbian, gay and bisexual adults, aged 60 and older. Over an average follow-up period of nine years, the rate of dementia in this group was 7.4 percent. The dementia rate among Americans aged 65 and older is about 10 percent.
The study was to be presented Sunday at the Alzheimer’s Association annual meeting, in Chicago.
The findings “provide important initial insights,” Flatt said in an association news release.
But “future studies aimed at better understanding risk and risk factors for Alzheimer’s and other dementias in older sexual minorities are greatly needed,” he added.
High rates of depression, high blood pressure, stroke and heart disease among sexual minorities may contribute to their dementia risk, the researchers say.
“Encouraging people to access health care services and make healthy lifestyle changes can have a positive impact on both LGBT and non-LGBT communities,” said Sam Fazio, director of quality care and psychosocial research for the Alzheimer’s Association.
But effective outreach to LGBT groups must be sensitive to racial, ethnic and cultural differences, Fazio added. This could result in earlier diagnosis, which has been linked to better outcomes, he said.
Flatt added that the study points to important implications for meeting the long-term caregiving needs of the LGBT community.
“Given the concerns of social isolation and limited access to friend and family caregivers, there is a strong need to create a supportive health care environment and caregiving resources for sexual minority adults living with dementia,” Flatt said.
Research presented at meetings is usually considered preliminary until published in a peer-reviewed medical journal.
What happens when seniors who can’t recognize their own kids try to navigate the hazards of physical intimacy with one another? Zosia Bielski looks at the challenges for elderly people, nursing homes and families
By Zosia Bielski
When Karen Best abruptly lost her communications job at the age of 57, her family found it strange: she’d been a workaholic all her life. For a while, they assumed she was depressed, as she whiled away the hours watching cat videos online in her housecoat.
Within the year, Ms. Best was diagnosed with early-onset Alzheimer’s and frontotemporal dementia. By the time her family placed her in long-term care in Welland, Ont., Ms. Best had stopped calling her grandchildren by their names and lost most of her language. Staff would ask if she wanted a blueberry or a chocolate-chip muffin; she couldn’t reply.
Which made the phone call from the nursing home one month into Ms. Best’s stay all the more alarming: caregivers were anxious about her and a male resident. Staff needed her daughter, Cassandra Trach, to come in right away. “She had been found with no pants on, and he had no pants on, in his room,” said Ms. Trach, a 33-year-old account executive in the Niagara region. “This was something I was wholly unprepared for.”
Ms. Best and the elderly man would walk together, holding hands, and she would also seek him out for closer contact, according to staff. Like her, he was able-bodied but suffering from dementia. Ms. Best and her new companion were also both married – in Ms. Best’s case, for three decades – but had seemingly forgotten their spouses.
Every time nursing-home employees discovered the couple undressed together, they’d call Ms. Trach and her father, who jointly possess power of attorney for Ms. Best. “It felt like they wanted us to decide, do we let this relationship go and happen, or do we try to redirect?” Ms. Trach said. “It’s so grey. What do I do?”
For Ms. Trach, it was a painful predicament. Could her mother – an advanced dementia patient who sometimes couldn’t communicate what she wanted for breakfast – meaningfully consent to a new sexual relationship? Dementia had rendered most of her thoughts inscrutable, her desires opaque. Who could tell if she wanted or understood this?
Amid ever-widening cultural conversations about sexual consent, dementia remains uncharted territory. As Canadians live longer, more are moving into long-term care with advancing dementia disorders. It’s a growing population with complex needs, not least of all in their intimate lives.
In the close-quarters environment of nursing homes, these people’s sexuality poses difficult ethical dilemmas for staff and for families. Those who care for uniquely vulnerable dementia patients walk a fine tightrope. They have to protect their residents from sexual abuse while respecting their needs for human connection – and a private life.
This is proving challenging for Canadian caregivers. There is no unified strategy on sexuality and dementia in this country. No cognitive test exists to determine, once and for all, whether a person with Alzheimer’s can consent to sex or not.
Instead, nursing-home employees are often left on their own to decide whether their residents with dementia can consent to intimacy safely – even as residents’ awareness shifts from moment to moment, their speech recedes and their thoughts become difficult to access.
When poorly trained staffers are left to untangle such ethical knots, they can bring their own value judgments to bear. A prevailing squeamishness about elder sex can provoke alarmist reactions. The result is great inconsistency around dementia patients’ sexual lives in long-term care across Canada, a point that troubles Alzheimer’s advocates.
“It’s all over the map,” said Judith Wahl, a Toronto legal consultant who fielded complaints about homes for three decades as executive director of the Advocacy Centre for the Elderly and now educates long-term care staff across the country about consent and dementia.
In interviews, more than a dozen sources detailed questionable attitudes on the ground.
They described personal support workers seemingly making up policy on the fly, with some barring any kind of touch between residents, and others not paying close enough attention to their most defenceless patients and those who might exploit them.
“Homes should put their minds to looking at how they manage this,” Ms. Wahl said. “It’s really hard to do this well.”
Consent and capacity
Despite an ever-widening social reckoning around sexual consent, dementia presents a new frontier.
Just 28 per cent of Canadians fully understand what consent entails, according to research conducted earlier this year by The Canadian Women’s Foundation. Consent becomes decidedly more complicated when one or both people involved have dementia.
Just as a person’s sexual consent can quickly swing from “yes” to “no” during an intimate encounter, so can dementia patients’ abilities to recognize and navigate what’s happening around them.
“Consent is so challenging,” said Mary Schulz, director of education at the Alzheimer Society of Canada. “It’s a moving target. Our instruments for assessing that are quite blunt.”
The starting point is Canada’s sexual-consent law, which is no different for people living with dementia than it is for anybody else. The Criminal Code is clear: Consent can be spoken or unspoken, but it needs to be affirmative and happen in the moment; passivity cannot be construed as a “yes,” and nobody can consent (or dissent) on anyone else’s behalf, not even with power of attorney.
“With medical treatment, if you’re not competent, [the decision goes] to somebody else on the hierarchy – often a family member,” said Jane Meadus, a lawyer with the Advocacy Centre for the Elderly. “With sex, you can’t do that.”
Although the law is clear, it’s not always helpful within the context of nursing homes. Who determines “capacity to consent to sex” is not readily established in Canada. Often, it falls to personal-support workers to resolve the most critical questions: Do their residents with dementia understand what they’re doing, including the consequences? Can they pull back at any time?
With little consent training, staff aren’t always equipped to answer with full certainty.
Deepening the dilemma is the contradictory nature of the nursing home. These places are supposed to serve as patients’ homes, where they’d normally enjoy a private life. At the same time, these are highly monitored environments where every risk is mitigated. Caregivers have to prioritize safety and dignity simultaneously.
“They’re in a bind, because we’re not really good at telling them how to do that,” Ms. Meadus said.
At long-term care homes in most provinces, residents now have a “bill of rights” that allows them to receive visitors of their choice in private. Ontario and Prince Edward Island spell out residents’ rights to form relationships in care, even letting friendly residents share rooms. “Residents are treated with respect and dignity at all times, including during intimacy,” reads Nova Scotia’s patient bill of rights, the only document to use the word directly.
These philosophies represent a stark evolution from the oppressive old-age institutions of the past. But, even as residents’ rights are increasingly protected on paper, what happens on the ground doesn’t necessarily follow.
“It gets extremely tricky,” Ms. Meadus said. “You get some homes that have tried in the past to say, ‘Nobody can have sex, that’s it.’ And you get other homes where it’s laissez-faire: ‘As long as it feels good, they can do it.’ It is a very difficult balance that people are trying at, but we haven’t got it right yet.”
Advocates voiced concern about caregivers overstepping. They described religious staff members taking moral exception to LGBTQ patients and to residents having extramarital liaisons. They spoke of homes that have operated as “no sex zones,” where caregivers overzealous about their duty to protect patients have dissuaded them from engaging in all touch with one another, right down to holding hands. Staffers are afraid that such simple, comforting gestures might spiral into sexual abuse and liability.
They’ve got some cause for concern. Long-term care is one of the most highly regulated sectors in Canadian health care. Homes track everything and must report sexual abuse to their provincial ministries of health and long-term care, and to police. Ministries will cite homes if staff members fail to protect their residents from harm. Families of residents can also sue a home for damages; these cases are overwhelmingly settled out of court.
“The default position for long-term care staff – not necessarily rightly, but quite understandably – is in case of doubt, nobody touches, nobody hold hands, nobody is allowed to have sex,” said Ms. Schulz of the Alzheimer Society of Canada. “They go to that extreme position because they’re at a loss. But that is denying a person their human experience, which is just not on.”
On the other end of the spectrum, employees at more progressive homes don’t always consider the sexual risks as closely as they should, some legal advocates say. Ms. Wahl said she’s dealt with too many complaints about employees looking the other away, assuming the affection between two residents is mutual when it might not be. “Just because somebody’s old,” she said, “doesn’t mean that you just ignore the fact they could be sexually assaulted.”
Ms. Wahl rattles off what she’s seen. Some staffers will decide that a resident is seeking out sex because he or she walked into another resident’s room – this even as clinicians know that dementia patients often wander without aim. Other caregivers mistakenly assume that sex between a resident and visiting spouse is automatically consensual. This disregards Canada’s 1983 marital-rape law, which makes clear that even those married for decades need to get agreement from each other before having sex.
Ms. Wahl is most perturbed by family members infantilizing their elders. She said she’s seen many adult sons and daughters objecting to parents forming relationships in care. Sometimes, Ms. Wahl said, staffers hand over the sexual decision-making to these family members, assuming it’s the right thing to do because they have power of attorney.
“You can’t have substitute consent to sex,” Ms. Wahl cautioned, pointing to Canada’s sexual-assault laws.
Adult children can be the strictest gatekeepers. Many will try to stymie their parents’ late-in-life
relationships, lawyers and Alzheimer’s advocates say.
Children are rightly protective, but many are also simply recoiling from their parents’ sex lives.
“Unnerving” was the word Ms. Trach used as she fielded call after call about her mother being found undressed again with her new boyfriend at the nursing home in Welland. “What am I supposed to do with this information?” Ms. Trach asked, exasperated.
Even though staff reported that her mother encouraged the intimate relations, Ms. Trach was distressed. She wondered about her mom’s motivations for pursuing the man.
“Is she consenting to it because, like a teenage girl, she’s seeking approval? … Is she doing this because she’s lonely?” Ms. Trach asked. “How can you tell with someone with dementia?”
She got few answers. Balancing her mother’s need for affection with her safety was “agonizing.” In the end, the family did not interfere with the relationship, although they asked that the pair be monitored as closely as possible by staff.
“If this is something that gives them joy and happiness,” Ms. Trach said, “maybe we have to put our own discomfort aside.”
Along with the other adult children of parents with dementia who spoke with The Globe and Mail, Ms. Trach decided to speak out on behalf of her mother, who is now largely non-verbal, to spread awareness about the sensitive issues of consent and connection in long-term care homes. Ms. Trach said she went public so that nursing homes “are awesome by the time we have to live in them.”
Today, in old-age institutions and outside of them, deeply ageist aversion persists toward elderly adults and sex – never mind those beset by Alzheimer’s.
“It can seem kind of, almost obscene, in some people’s minds, to be thinking about sex when you’re talking about someone who’s perhaps cognitively impaired, elderly or physically frail,” Ms Schulz said. “And it can seem somehow irrelevant: ‘How can you even be thinking about this when we’re dealing with massive issues of cognitive decline?’”
The Alzheimer Society of Canada is in the midst of overhauling its resources for families and other caregivers on the issue of sexuality and dementia. It’s enlisted the help of Lori Schindel Martin, an outspoken associate professor at Ryerson University’s Daphne Cockwell School of Nursing.
At Canada’s first sexual-consent conference, held in 2016 at Trent University in Peterborough, Ont., Prof. Schindel Martin asked the next generation of nurses to consider what human touch means for residents’ well-being.
“Research tells us,” Prof. Schindel Martin told the audience, “that older people will have an increased quality of life, enhanced self-esteem and will heal from their depression because they connected with someone on a level that involves their skin.”
Prof. Schindel Martin took the opportunity to call out what she views as pervasive censorship of elderly people’s sexuality.
She laced her keynote with eye-opening composite cases from two decades spent on the front lines as a gerontology nurse working with dementia patients. There was the man who adorned his walls with framed Playboy centrefolds; nurses protested and refused to go into his room. Another woman would lift her skirt over her shoulders and proposition male residents, or “sailors” as she called them. And there was the husband who visited his wife every day from lunch till 7 p.m.; the housekeeper was shocked to walk in on him one day with his head between his wife’s legs.
They were visceral vignettes meant to illustrate the very real sexuality of older adults, as well as our profound unease around it. Speaking from her small, turquoise-blue office at Ryerson last April, Prof. Schindel Martin argued that ageism permeates everything about this issue: we see elderly people as asexual beings taking afternoon tea together, not pinning nude centrefolds to their walls.
The academic says we need a rethink. Pointing to nursing homes’ risk assessments, cognitive questionnaires and panicked phone calls to family, Prof. Schindel Martin wondered if anyone would ever subject randy first-year college students to any of this heavy-handedness.
“One’s humanity and capacity for relationships become examined very deeply in ways that we don’t do with other people,” Prof. Schindel Martin said. “What we’re able to control are older people … to remove them from each other and create rules.” (At Trent, she likened it to “killing a mosquito with a hammer.”)
Prof. Schindel Martin insisted that most of what she’s witnessed in clinical practice involved people seeking each other out for company, belonging and warmth. She wants stronger training so caregivers can better discern harmless courtship from more problematic sexual behaviour.
“We need to step back and rethink what could happen in our worst imaginings,” Prof. Schindel Martin said. “We don’t even have good prevalence incidence data about how often these things happen.”
Canada does not collect comprehensive data on sexual abuse perpetrated by residents against other residents in long-term care. A cross-country scan revealed many provinces lump together reports of all kinds of abuses – physical, verbal, financial and sexual. Most provinces also fail to differentiate between different types of abusers, counting exploitative residents, visitors and staff members all together. Provinces that did break out these statistics reported “founded investigations” and not all reports, meaning tallies appeared conspicuously low. (For example, between 2012 and 2017, Nova Scotia reported just 18 proven investigations of non-consensual sexual activity between residents in 135 long-term-care homes.)
What we do know is that Canada’s dementia population is swelling. The number of Canadians over 65 with dementia increased 83 per cent between 2002 and 2013, according to the Public Health Agency of Canada, which found that some 76,000 new cases are diagnosed every year in this country. Today, more than half a million Canadians are living with dementia, according to the Alzheimer Society of Canada. By 2031, that number will nearly double.
As baby boomers become caregivers to aging parents and round the corner into old age themselves, they want long-term-care options that actually feel like home, not the cold, controlled institutions of generations past. They want their rights recognized, including the freedom to enjoy intimate relationships in some semblance of privacy, the way you would at home.
Experts believe the way forward lies within a broader push for “person-centred” health care that focuses on knowing patients individually: if you don’t bother trying to know them or their needs, how can you help them? Person-centred care doesn’t solve all the difficult, sometimes inscrutable questions facing nursing-home staff about consent, capacity and dementia. It’s by no means a magic bullet, but experts believe it is, at the very least, a more empathetic approach that doesn’t stigmatize ailing, elderly people looking for human connection.
At Sherbrooke Community Centre, a long-term-care facility that houses 263 people in Saskatoon, chief executive Suellen Beatty said caregivers need to be “really good detectives,” who decipher the unmet needs of their residents – not who admonish them. Married residents trying to take up with others in the nursing home are often seeking love and attention, Ms. Beatty said. For them, help can take on many different forms: extra hugs from staff, more visits from a spouse or something tactile, such as pet therapy.
Ms. Beatty argued that caregivers should prioritize residents’ happiness instead of only seeing them as fragile. “We want to make this a risk-free world for people, and then we wonder why they disengage,” Ms. Beatty said. “We can make this so safe that we take all the joy out of life.”
Set amid woodlands and farmers’ fields in Stouffville, Ont., Bloomington Cove Care Community is another nursing home that bills itself as person-centred. Here, all of the 112 residents have dementia. Most are women in their 80s; there are just 28 men here.
Residents are encouraged to keep their familiar routines, waking up, showering and eating on their own clock. Bedrooms are private and filled with things from home – a favourite arm chair, ornately framed oil paintings, school portraits of grandchildren. Outside each room hang memory boxes, wood and glass curio cabinets filled with war memorabilia, weathered wedding photos and other treasures. Meant to stir recollection, the boxes also remind residents which room is theirs.
Many here are in the advanced stages of the disease. Some tire themselves out pacing, others hoard, hallucinate or grow depressed.
“It’s very hard to grow old,” said executive director Janet Iwaszczenko, walking the teal and beige halls.
For those suffering from frontotemporal dementia, the disease often impairs judgment and the ability to read context and social cues. People can become disinhibited around sex. Residents will occasionally mix up staff members for their spouses and require “redirecting.” Sometimes, residents will court each other. “There’s no filter,” Ms. Iwaszczenko explained. “There’s no understanding of social appropriateness.”
Things get especially tricky when residents who are married pair off with their nursing-home neighbours. These extramarital relationships often catch families off guard. Nurses and social workers observe residents, talk to them and to their spouses and relatives, documenting everything on residents’ charts.
“[Families] have a lot of upsets going through this horrible disease with someone they love,” Ms. Iwaszczenko said. “We talk about it. That’s the most important thing.”
On a sunny morning in April, staff gathered for a “risk huddle” in a glassed-in office looking out into a communal dining room. Registered practical nurse Mun Lee went over the pressing issues of the day: patients adjusting to new medication, protocols for changing bed linens and good hygiene practice (“long toenails must be trimmed,” Ms. Lee instructed).
An elderly man sailed past the windows, blowing kisses to staff through the glass. It was Denis Underhill, a sociable, 94-year-old Second World War veteran. Talk at the meeting turned to Mr. Underhill and another resident, 80-year-old Harriette Stretton. Both widowed, the two had been inseparable for three years. “They’re very in tune with each other,” Ms. Iwaszczenko said.
They’d share meals, walk the halls and sing old songs such as Easter Parade to each other. He’d talk about wanting to marry her, often. There were frequent hugs, kisses and naps. Ms. Lee raised the pair’s nap time at the staff huddle. “Close the door,” she said. “Give them privacy.”
Ms. Stretton and Mr. Underhill’s relationship came as a relief to their families.
“There seems to be an underlying sense of comfort that he knows he is not alone,” Mr. Underhill’s daughter, Nancy Beard, said.
Staff would phone Ms. Beard and Ms. Stretton’s daughter, Theresa Elvins – who have power of attorney – to let them know what was going on between the pair.
“There were a couple of instances where I’d get a call: ‘We found your mom and Denis in bed together.’ And I’m like, ‘Oh my god,’” Ms. Elvins recalled (Ms. Beard refers to it as “canoodling”).
Mr. Underhill’s health declined in the winter and Ms. Stretton’s recognition has grown spottier. “You can tell there’s a glimmer,” Ms. Elvins said. “She knows she should know us and that we’re familiar, but she couldn’t tell you that I’m her daughter.”
Asked if her mother was aware in her romantic relationship, Ms. Elvins was certain. “I knew that she had feelings for him,” she said. “I knew she was communicating what she felt, and not what she thought someone told her to feel.”
Today, the two infatuated elders remain together, although it’s never been clear whether they know each other’s names: they call each other “sweetie,” Ms. Elvins said.
“Even though they might not remember who you are, they still have feelings and needs just like anyone else.”
[S]everal weeks after my patient was admitted to the intensive care unit for pneumonia and other problems, a clear plastic tube sprouted up from the mechanical ventilator, onto his pillow and down into his trachea. He showed few signs of improvement. In fact, the weeks on his back in an I.C.U. bed were making my 59-year-old patient more and more debilitated.
Still worse, a law meant to protect him was probably making him suffer more.
When the prognosis looks this bad, clinicians typically ask the patient what kind of care they want. Should we push for a miracle or focus on comfort? When patients cannot speak for themselves, we ask the same questions of a loved one or a legal guardian. This helps us avoid giving unwanted care that isn’t likely to heal the patient.
This patient was different. Because he was born with a severe intellectual disability, the law made it much harder for him to avoid unwanted care.
In New Hampshire, where I practice, and in many other states, legal guardians of people with intellectual disabilities can make most medical decisions but, by law, they cannot decline life-sustaining therapies like mechanical ventilation. These laws are meant to protect patients with disabilities from premature discontinuation of lifesaving care. Yet, my patient was experiencing the unintended downside of these laws: the selective prolonging of unpleasant and questionably helpful end-of-life care in people with disabilities.
For my patient’s guardian to discontinue unwanted life-sustaining therapies, she had to petition a probate court judge. Busy court dockets being what they are, this can take weeks. Once in court, the judge asks questions aimed at making the right legal decision. How sure is the guardian or family member of the patient’s wishes? What’s the doctor’s best estimate at a prognosis? Often the judge will ask an ethicist like me to weigh in on whether withdrawal is an ethically permissible option. Then the judge makes a decision.
This slow, impersonal, courtroom-based approach to end-of-life decision-making is a far cry from the prompt, patient-centered, bedside care that all of us deserve.
This legalistic approach to end-of-life decision-making also creates unreasonable expectations of legal guardians. Most loved ones have a sense of what the patient they represent would want at the end of life, but they would probably squirm to justify that intuition in a court of law. Yet this is routine for legal guardians of people with intellectual disabilities in my state and others with similar laws. This biases our care toward continuation of what are often uncomfortable, aggressive and potentially unwanted end-of-life treatments.
My patient’s legal guardian was not a family member, but she had known him for years before this hospitalization. She said my patient’s quality of life came from interacting non-verbally with caregivers, listening to music, and eating favorite foods like applesauce. She described the excited hoots he would make when interacting with a favorite nurse.
The contrast to what my patient was experiencing in the I.C.U. was stark. He was sedated. His unsmiling mouth drooped open, a breathing tube between his lips. In place of music, there were the beeps and whirs of the machines that kept him alive. He could not eat. Plastic tubes penetrated every orifice.
Still further, my patient endured the discomforts and indignities that accumulate even in the best I.C.U.s. His muscles grew weaker and stiffer. He developed skin sores and infections. He needed minor surgeries to place the tubes that delivered artificial nutrition and artificial breaths every hour of the day.
Seeing all of this, my patient’s guardian did not think my patient would want to live this way. The I.C.U. can save your life, but it is not where most of us want to die.
In accord, a policy statement from the American Association on Intellectual and Developmental Disabilities states, “Withdrawing or withholding care may be appropriate in some situations …. Treatment should not be withdrawn or withheld only because a person has a disability.”
This reference to substandard medical treatment of people with disabilities is important. In hospitals across the country, people with disabilities have been subject to all manner of substandard care, including inappropriately premature discontinuation of end-of-life care. This has improved over the past few decades, but a new systematic review shows people with intellectual disabilities still have difficulty accessing high quality end-of-life care, including palliative care specialists. That means the medical system routinely shortchanges people with intellectual disabilities at the end of life, and states like mine add legal insult to that medical injury.
My patient’s caregivers held several multidisciplinary meetings to choose the right way forward. There was consensus that the medical prognosis was dim, and the legal guardian said the patient did not have adequate quality of life. Multiple physicians wrote letters to support a petition to the court to refocus care around comfort and dignity. Ultimately, the legal guardian and the Office of Public Guardian felt they could decline continued intensive care only if it was completely futile, and decided not to submit the petition to the court.
To date, my patient has spent over 140 days in the hospital with little overall improvement. He has endured multiple medical interventions, and unavoidable complications are mounting. Unless the laws change, I.C.U.s across the nation will continue to do the same thing to other patients just like him.
[T]he death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia. It’s hard for family members to know how and when to tell the person with dementia about the death. And what should they do when the person doesn’t remember?
Coping With Losses
People with dementia have had many “little deaths” in the course of their disease — things like losing their independence and the ability to drive, read, cook, or enjoy hobbies. Memories and relationships are huge losses. These losses are stressful for people with dementia and their families.
How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving
For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.” For most, the pain of the loss can transform into beloved memories. For someone with dementia this process is often impossible.
People with dementia who are grieving are often agitated and restless. They may sense that something is not right, something is missing. They may confuse one loss with another. A recent death may stimulate the memory of loss from childhood. It can be stressful for family members to decide when and how to tell them about the death of a loved one — and even how often to tell them. Repeatedly telling a person with dementia about a death can make family members’ grief more painful.
Telling About a Death
Here are some hints for telling a person with dementia about a death:
Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
If you are too emotional to talk to them, find someone else — maybe a friend or healthcare professional.
Choose a time to talk when the person with dementia is well rested.
Use short, simple sentences. Don’t give too many details; this may overwhelm them.
Answer questions as honestly as possible.
Use clear words like “died” instead of “passed away” or “at peace now.”
Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
You can support them with physical touch, such as a hug or holding hands.
Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
Plan for someone to be with the person during services who can also take them out if they become agitated.
Here are some ideas of ways to help the person with dementia accept the death:
Speak in the past tense about the person who has died. For example, “I loved Mom’s holiday cookies.”
Talk with them about the person who has died and express your sadness. “I sure miss Dad. He always made birthdays so fun, didn’t he, Mom? Remember when he….” Bring out pictures and tell stories if this helps their grief process.
Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.
If over time they continue to ask for the person who has died, there are some things you can do. In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:
Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern, or confusion. You can respond to what you see:
“You sound really frightened (or lost, or angry, etc.) to me. Let me help you with that.”
“You must really be missing her. Tell me what you miss most.” Share your own feelings: “I miss her, too.”
Check their mood at the moment. If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
Look for patterns in the times they ask for the person who has died. Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there.
Use distraction only when other ways of dealing with their grief are not working.
Each family has to find what works for them, and then try to be as consistent as possible. You may want to write out a simple plan for all family members and visitors to follow.
You can be most supportive to the person with dementia if you also take care of your own needs and get support. We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel. Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.
[T]he Advance Illness Management (AIM) program/model was developed to provide home-based palliative care and management of transitional care for individuals with advance chronic disease. The AIM program benefits those who are not yet ready for hospice or have refused to elect a hospice program.
For the most part, AIM is essentially a specialized home care program. It is not hospice. Whereas traditional home care services promote recovery and rehabilitation and the individual is admitted and discharged quickly, the AIM program promotes transition between end-of-life care for individuals with late-stage illness. Moreover, AIM focuses on symptom management and comfort.
Traditional home health services are offered to individuals with a brief illness or debilitating circumstances that are not considered terminal. Palliative home health services are provided to those facing terminal illness who wish to continue life-extending or curative treatment or need more time to explore options. The AIM program manages the needs of individuals facing terminal illness. A person can transition into hospice care if and when that decision is made, with no change in the consistent caregiver.
In order to participate in an AIM program, individuals must satisfy at least two of the following criteria:
• Advance cardiac disease, end-stage pulmonary disease, end-stage liver disease, end-stage Alzheimer’s or dementia, other end-stage diagnoses or advanced debility and decline.
• Non-palliative treatment of primary disease process is failing or losing effectiveness, such as when cancer chemotherapy is ineffective.
• Individual has poorly controlled pain or other end-of-life symptoms.
• A decline in functional and or nutritional status in the past 30 days.
• The person is eligible for hospice but refuses enrollment.
The AIM palliative home health visits are less frequent than hospice visits, yet the person and his or her family are provided similar services as those received through hospice from the same qualified and compassionate staff, while they continue to see curative treatments. And, with the AIM program, if at some point the individual and family decide to utilize the services of hospice care, they have the comfort of knowing that their team of health care providers will remain the same.
For more information about the services provided by AIM, check with your physician or health care provider.
[A] new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.
Most states in the U.S. have programs that allow terminally ill patients to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures health care providers, including EMS providers, should take near the end of a patient’s life.
Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.
Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.
Through a series of interviews with five different emergency medical service agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.
“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”
That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.
She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.
But questions remained.
“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.
There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.
Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.
The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual disabilities engage in end-of-life discussions.
Since January 2016, Medicare pays for patients to have advance care planning conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with intellectual disabilities have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.
“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”