When is someone with dementia ready for hospice care?
Considered to be the model of quality and compassionate care for individuals facing a serious or life-limited illness or injury, the concept of hospice care began in England in the 1950s.
A pioneering physician named Dame Cicely Saunders created the first modern hospice there in 1967. Hospice care focuses on caring, not curing, and in most cases, care is provided in the individual’s own home. Hospice care is also provided by self-supporting hospice centers, hospitals and nursing homes and other long-term care settings.
Hospice services are available to individuals of any age, religion, race or illness and is covered under Medicare, Medicaid and most private insurance plans, HMOs, and other managed care organizations.
The characteristics of dementia and Alzheimer’s disease are that they are life-altering and eventually fatal conditions for which curative therapies are not available. When someone reaches the stage of Alzheimer’s disease or other dementias in which everyday activities become too difficult for family caregivers to manage, and the symptoms become dramatically more pronounced, a doctor can refer the patient to a hospice provider for end-of-life care.
Some of the characteristics the affected individual may be exhibiting include the lack of ability to ambulate without assistance, incontinence of bowel and bladder, inability to dress and bathe properly, and speech limited to approximately a half dozen or fewer intelligible and different words. There are also intercurrent illnesses associated with advanced dementia in which hospice services would be a benefit. These include aspiration pneumonia, urinary tract infection, septicemia and impaired nutritional status. Hospice care is also available when co-morbid conditions significantly impair the affected individual’s health. These include congestive heart failure or cardiovascular disease, COPD, diabetes, renal insufficiency or malignancy.
Hospice services provide exceptional benefits for those with Alzheimer’s disease or other dementias. Each affected individual receives an individualized care plan, considering the individual’s condition and specific symptoms to determine what services are needed. Hospice provides durable medical equipment and medical supplies to assist family caregivers in managing the symptoms of their loved ones’ disease.
Additionally, hospice care workers can offer families recommendations for creating routines that help the individual feel more comfortable. A multidisciplinary team, including a medical director, oversees the individual’s care.
To begin hospice care, the family caregiver needs to obtain a physician referral. Hospice care is intended for individuals with a life expectancy of six months or less, so individuals with advanced dementia or Alzheimer’s must meet the criteria to qualify for care and receives a doctor’s referral. It can be difficult to assess when the end-of-life will occur since the disease progresses at different rates for everyone, so families need to begin the conversation with a doctor when the individual enters the later stages of the disease.
Most people use hospice care far too late. For more information about hospice care, reach out to the Hospice Foundation of America at hospicefoundation.org; the National Hospice and Palliative Care Organization at https://www.nhpco.org, or the Alzheimer’s Association at www.alz.org.
On the morning that Wayne Briese had chosen for his medically assisted death, he was out shovelling snow in front of his house at 6am, to make sure the doctor would be able to get her car in.
It was January 6th, 2022, almost four years after he had been diagnosed with Alzheimer’s disease at the age of 73. As soon as he received that news, Wayne made it clear to his wife, Jule Briese, that when he no longer had the quality of life that was acceptable to him, he wanted to avail of Medical Assistance in Dying (Maid), which was first legislated for in their home country of Canada in 2016.
“I do not want to end my days as a lost soul in a nursing home,” he told her.
At the outset, there was some doubt in their minds about whether Maid was available to somebody with dementia. Once it was clarified it could be possible, Wayne described it as “the light at the end of the tunnel”.
“I was very supportive because I know Wayne would have honoured what I wanted,” explains Jule (78), in a Dublin city hotel on a sunny September morning. She is holidaying here when we meet, her first trip to Ireland. Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.
The Oireachtas Committee on Assisted Dying is due to resume its public hearings today after the summer break. At the first of the committee’s five hearings so far, on June 13th last, its chairman, Independent TD Michael Healy-Rae, outlined: “The committee may recommend that changes are made to existing policy and legislation around assisted dying, but it could also recommend that no changes be made.”
The committee was set up after a Private Members’ Bill, Dying with Dignity Bill 2020, which seeks to allow for somebody with a terminal illness to request a medically assisted death, had passed the second stage in the Oireachtas.
In 2013, Marie Fleming, who was living with advanced multiple sclerosis, lost a landmark Supreme Court challenge for the right to an assisted death without putting anyone who helped her at risk of prosecution. She had claimed the ban on assisted suicide was discriminatory in that an able-bodied person may take their own life lawfully, but she could not be lawfully helped to do the same.
Wayne was always open and ready to talk. He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s
— Jule Briese
Jule and Wayne had been married for almost 52 years at the time of his death and had been “each other’s best friends” since meeting as teachers in Ontario. For the last four years of their marriage, they comforted each other in the carrying of their individual burdens: he sensing the disease was erasing the blackboard of his life, and she the witness to its unstoppable advance. The fact that Wayne never lost his insight into what was happening “was both a blessing and a curse”, she says. He could empathise that it was hard for her too.
Jule Briese: Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.
Jule’s way of working through anticipatory grief of the loss of her husband was to write. A memoir booklet, entitled In the Hot Chocolate and Decadent Cake Society (2018), captured some of her early thoughts and those first telltale signs of confusion. In October 2017, as Wayne looked for his pyjamas in the wrong cupboard instead of going to the shelf where they were always stored, “fear scrapes its finger along hollows, unsettling my insides”, she wrote. She knew they were reaching the stage where “no longer content to be ignored, this elephant trumpets for more attention”.
When the anticipated diagnosis of Alzheimer’s was confirmed three months later, at the Brain Health Centre in Vancouver, it was “still surreal”, she tells me. They initially wondered, as it was a research centre, could they be involved with some research. But there wasn’t anything for Alzheimer’s and they felt “cast-off and adrift”.
How they navigated the next four years, from diagnosis to his date with death, is a story of personal choice, stresses Jule. But she believes there’s healing power in telling stories because it gives permission to other people to share theirs, with every listener, or reader, taking out of it what is for them and passing it on. She also wants to honour Wayne’s courage and “to give voice to what he was passionate about, and that was the right of the individual to an end-of-life choice”.
The couple, she says, did not choose to avail of Alzheimer’s medications for what is an incurable and progressive condition. “Diet, exercise and making your life meaningful… that is what was important to us.”
What was also at the back of their minds was that some of the drugs mask the progression.
“You get to a point where they don’t work any more – you were here, and there you are now,” she says, demonstrating a gulf that they had no wish to cover in a sudden leap. It is not that they were anti-medication, and Wayne did take a pill for anxiety from the second year onwards, but rather, it was a matter of weighing up the benefits and side effects.
Wayne lodged documents with a lawyer straight after his diagnosis, outlining his desire for Maid and his definition of quality of life. Jule knew it would be her job to look out for the red flags that would signal stages of decline. Meanwhile, they got on with life, in which the outdoors had always played a large part. “We hiked, we camped. We weren’t overly social people; we had a small circle of friends.”
With Wayne’s permission, Jule recorded the two of them talking about issues. She devised questionnaires relevant to how he was coping with daily life, and they could use his responses to give a fuller answer to the “How are you?” opening gambit at medical check-ups. Extracts from these recordings, along with selected email exchanges with his doctor and notes from Jule’s journaling, were published earlier this year in a book, Shared Conversations – Glimpses into Alzheimer’s.
The book Shared Conversations – Glimpses into Alzheimer’s was published earlier this year.
“Wayne was always open and ready to talk,” she says. “He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s.”
In the main, friends were really supportive, but “there are those who don’t know how to cope, and they leave”.
Once the couple had established that assisted dying was a possibility for somebody with dementia, they contacted Dr Tanja Daws, who Jule had heard spoken warmly of as the doctor at the centre of somebody else’s experience of Maid. At the first meeting with the couple, Dr Daws told them it was going to be a long journey, “we are going to be together for a while”.
“And we were,” says Jule. They met her every three months after that, over nearly four years. A second, independent doctor must be involved in the assessment for Maid, so Daws referred Wayne to a geriatric psychiatrist, Dr Pawel Juralowicz, for parallel appointments. Both of them would have the chance to get to know Wayne in the lead-up to him making a formal Maid application.
A big concern for Wayne was that a time might come when he would no longer be deemed capable of giving consent, and then his choice of a medically assisted death could no longer be enabled. But a Canadian legislative amendment, Bill C-7, in March 2021, removed that worry. It allowed, in certain circumstances, for assisted dying to go ahead for an eligible patient who had agreed in advance a waiver of final consent with their doctor.
“Sometimes it’s called Audrey’s Bill,” says Jule in reference to a high-profile campaigner, Audrey Parker, who had stage-four breast cancer and had been assessed and approved for assisted dying. She had hoped to see out one more Christmas, but, afraid that pain medication would remove her ability to give final consent, she went early, choosing November 1st, 2019, for her death.
‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne
— Jule Briese
By early 2021, an escalation of Wayne’s dementia was unsettling both him and Jule. By July, he was struggling to know how the people around him fitted into his life. In a conversation recorded on July 22nd, 2021, Jule said to him: “We’ve talked about red flags and you said something like: ‘When I get to the point of not knowing who my wife is and when I get to really being in a confused state, then it’s time to think about Maid.’ Would you say that you are actually beginning to experience those things that you did not want to have to happen to you?”
“I think that is a correct observation by you,” he replies. “Is it all right to say that?”
They agreed that episodes of confusion were becoming more prolonged and that they were nearing “10 minutes to midnight”. This is a term Dr Daws used for the time at which Wayne would need to apply for a Maid assessment, to verify that he met the criteria and was fit to sign a waiver for it to go ahead without his last-minute consent, if incapable at that point.
Everybody has their own definition of quality of life, says Jule. “You had to deteriorate to a certain point, where your quality of life as you defined it was in jeopardy, and it was at that point you could set your date for Maid.”
Choosing to be formally assessed is one thing, but how do you know when to set the date? It was a question Wayne asked both of his assessors in December 2021. Jule recalls how Dr Juralowicz suggested to him that the consciousness knows when the time is right, while Dr Daws replied: “Wayne, if life is a stage, how do you want to take your final bow?”
“Within a week, Wayne said, ‘I want to have Maid after Christmas’ – that was on December 18th. I said ‘before new year’s?’ and he said ‘No, no, after new year’s.”
He set the date for January 6th, 2022, at 10am.
“Two months before he set the date, he’s in the shower and he called me, ‘Come quick’. There was his smiling face, ‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne, it’s not about me, and I think that’s really important.”
With the date set, the challenge was how would they spend the finite days left? They had envisaged they would enjoy a quiet getaway together on the west coast before Wayne said his goodbyes to relatives and friends. But, as it turned out, he had already reached a stage where he didn’t want to leave their home at Qualicum Beach on Vancouver Island.
Jule Briese: ‘He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.’
So they stayed put, and Wayne made phone calls to people important in his life. The couple invited close friends over to dinner and a special friend played a clarinet concert for him.
On a lighter note, Jule recalls how a niece, Kashmir, who had spent time with them while attending university nearby, had bought a gingerbread train kit as a fun gift for Wayne that Christmas before she knew he had set a date for Maid. “She said to me, I don’t think somebody that is dying is going to want to do this. I said ‘I think you’re right and we will give it to grandchildren of a friend’.”
However, when there was a power cut one afternoon, they decided to take it out and assemble it between the three of them.
He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’
— Jule Briese
Kashmir was disgusted to discover the kit did not include icing. “She said, ‘Who on earth would do this for kids and not have icing?’ I said I have honey. It was a mess, but it was like we were all kids. It was such a priceless memory.”
Although describing themselves as “more spiritual than religious”, the couple invited a local Anglican priest to be with them on the day Wayne had chosen to die. He came at 9am and, in the course of conversation around their pellet stove, Wayne spoke of how he had been blessed in life and had no regrets.
“Then he turned around to me and said beautiful things and to Kashmir.” When Dr Daws and a nurse arrived, the couple moved into the room that overlooked the garden though double glass sliding doors and the priest gave each of them an individual blessing for their diverging paths.
In a last-minute flash of Wayne’s characteristic humour, he looked at the nurse and said: “Where have you been for the last 40 years? Finally, somebody that can put in an IV.” Then he told them: “I’m ready.”
“I held his hands and Kashmir held his feet,” says Jule. “It’s like he was on his journey and preparing to leave, we had said our goodbyes. I was there to witness his leaving.” Opera singers performing some of his favourite John Denver songs, from the album Great Voices, were playing in the background.
“He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.” When it was over, Jule asked to spend some time alone with him and played a song she had written for him called My Best Friend.
As medically assisted dying goes, she feels she and Wayne had the “gold star” experience. Training she had done in her 50s for conflict resolution, mediation and negotiation had equipped her to communicate with Wayne throughout the lead-up.
“If I had not taken those [courses], we would never had had those conversations. It taught me to be curious.” Out of their discussions, she has created a one-act play, Ten Minutes to Midnight. She believes it will be an educational tool, showing how to communicate with somebody with dementia, as well as giving insight to doctors.
Jule is grateful for what Wayne’s choice meant for her. “He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’. There’s the compassion. He gave me the gift of his life,” she says, as her composure throughout the interview falters for the first time. “Therefore I have to use that.”
Watching a loved one face dementia is often heartbreaking and disorienting.
They may forget where they are, repeat themselves, or get confused and agitated. Over time, as memory disorders damage cells in the brain and nervous system, they’ll need someone to care for them. Their speech, personality and thinking can also shift. There might even come a day when they don’t recognize you.
It’s called “the long goodbye.” While groundbreaking new medications could slow Alzheimer’s disease progression, there is still no cure for the estimated 6.7 million Americans with the condition, according to the Alzheimer’s Association.
On average, a person with dementia will live about 10 years or more after diagnosis, said Zaldy Tan, MD, director of Cedars-Sinai’s Memory and Aging Program, medical director of the Jona Goldrich Center for Alzheimer’s and Memory Disorders, and the Carmen and Louis Warschaw Chair in Neurology. Knowing what to expect can help you guide your loved one through those years with dignity.
Respect their wishes
Speak to your relative as early as possible in their illness, while they can still make decisions, about their plans and desires for end-of-life care and their finances—and honor them fully, Tan said.
“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to,” he said.
Losing independence can be one of the most challenging parts of a memory disorder.
“The trick is knowing how they liked to live before their illness,” he added.
When caring for or visiting with a relative with dementia, try to continue familiar activities they enjoyed. Did they often spend time with friends? Schedule regular meetings with one or two friends weekly or monthly. Did they have a sweet tooth? Then don’t cut out all sweets. Instead, space them out with healthier fruits and vegetables.
“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to.”
Dementia patients lose short-term memory first
In its initial stages, Alzheimer’s disease often causes patients to lose household or personal items, such as glasses, or to skip important appointments and tasks.
Families can help by offering cues, including placing labels on drawers, cabinets and doors to tell what’s inside and using calendars for medication schedules, meals, doctor’s appointments or due dates for bills.
While neurological diseases block these newer memories, old ones can resurface.
“Sometimes people revert to the past because that’s what’s accessible to them,” Tan said.
Their house and loved ones look different than they remember and therefore unrecognizable, and they might try to return to that past life in an attempt to “make sense of the world,” he explained.
Meet your loved one in their truth
There’s no need to correct them every time they believe or say something inaccurate—and it can do more harm than good.
If the person thinks they’re going to see a friend who died 10 years ago for a poker party, it will just upset and confuse them to mention the death. They’ll also likely forget within a few minutes.
“What does it accomplish?” Tan said. “They may not have the capacity to understand. Their reality is different from yours.”
Play along or change the topic, he suggested.
Use simple, direct and slow communication with yes and no questions (asked one at a time) and eye contact—in a quiet place with few distractions, the Alzheimer’s Association recommends. Visual and sensory signals like touch or pointing can also help you engage.
It can creep up on you slowly or happen in a single moment, but anticipatory grief finds its way into the lives of most adult children or caregivers at some point. And the confusing part: Most people don’t know it when it hits them. Unlike grief after loss, which gets its fair share of air time, anticipatory grief is relatively unheard of, making it difficult for folks to recognize— and process — when they’re experiencing it.
“Anticipatory grief is a process that occurs prior to an expected loss,” explains Alicea Ardito, a licensed clinical social worker in private practice with Loudoun Adult Counseling and Northern Virginia Older Adult Counseling. “Often, anticipatory grief is associated with the loss of a loved one to death, but the definition has expanded to include many other types of losses as well.” (Think: Cognitive decline.)
Whether you’re experiencing it now or want to be prepared, here’s what experts want you to know about anticipatory grief.
What is anticipatory grief?
A viral tweet about anticipatory grief sparked a recent conversation, but the concept isn’t new — or rare. “Anticipatory grief is a very common experience for caregivers and/or adult children,” says Iris Waichler, a licensed clinical social worker in Chicago and author of “Role Reversal: How to Take Care of Yourself and Your Aging Parents.” “It references watching the physical, cognitive, behavioral and emotional changes you witness in a loved one. In a sense, you lose them twice. Once you have seen these changes over time, and the second time is at the moment of death.”
What triggers it?
While a concrete moment, such as a diagnosis or obvious cognitive or behavioral change, can set off feelings of anticipatory grief, there isn’t always one particular event that prompts it.
“Anticipatory grief can be triggered by many things,” explains Ardito. “It may be the realization that a loved one is nearing the end of their life, witnessing the process of a physical or cognitive decline or observing the progression of a life-limiting illness.”
This moment or phase then can then take you to a place where you begin to imagine life without them, Waichler notes. “It sometimes becomes an unconscious way to prepare for their death.”
What does it look like?
“Anticipatory grief involves complicated and complex feelings similar to those feelings associated with grief after a loss,” says Ardito. While each person will experience it differently, many will have some, or all, of the following feelings, according to Ardito and Waichler:
Depression.
Anxiety.
Anger.
Sadness.
Disbelief.
Denial.
Dread.
Fear.
Shock.
Guilt.
Helplessness.
Hopelessness.
Numbness.
Dissociation.
Confusion.
“There also may be other emotions involved, such as gratitude or acceptance,” notes Ardito.
“While there may be empathy for the parent as they decline in health, there may be residual feelings, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings.”
— ALICEA ARDITO, A LICENSED CLINICAL SOCIAL WORKER
For Carly Nguyen, a mom of two who runs the blog Little Voice, Big Matter, anticipatory grief presented in the form of wanting to make sure she provided closure for her father before he passed. “When I accepted that there was nothing else that could be done for my father, who was dying of cancer, I felt this great sense of urgency to let him know that we would all be OK,” she explains. “I wanted to be sure I eased any burdens he might be feeling and reassure him that he had done a fine job as a parent and a husband. I felt like I needed him to leave this world with that peace of mind.”
For adult children who have a contentious relationship with their parents, anticipatory grief can be even trickier. “It is not uncommon to feel conflicted about the relationship,” notes Ardito. “While there may be empathy and compassion for the parent as they decline in health, there may be residual feelings about the relationship, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings. A person does not have to choose just one way to feel.”
Contending and actively dealing with anticipatory grief is a personal process, but here are a few ways to approach these unique and often confusing feelings, according to Ardito and Waichler:
Talk it out.
According to Waichler, regardless of whom you speak to, talking about your feelings regarding the impending loss is key. “If appropriate, and the person who is dying shares a willingness to discuss their feelings about their impending death, it can create an intimacy and environment to help both parties begin to cope,” she says, adding: “Many people feel regret for not saying all they wanted to a loved one that is dying.”
If a conversation with the aging or ill person isn’t on the table, Waichler recommends finding “another outlet to discuss tumultuous feelings.” She offers the suggestions of talking to a “therapist, trusted friend or family member, an online or in-person support group or a spiritual or faith-based leader.”
The main take-away: Don’t self-isolate and be alone. Says Waichler: “People tend to do this when depressed and it only makes healing more challenging.”
Get inquisitive.
Ardito notes that when a realization occurs that there may not be much time left, it’s a good time to inquire about their life (even if you already know). “It can be helpful to ask questions about family history or express interest in hearing a parent retell favorite stories,” she says.
This also was a recommendation when the topic of anticipatory grief recently came up on Twitter:
Get intentional with your time.
It sounds cliché, but it’s true: Quality is more important than quantity. “It can be very helpful to focus on the quality of time spent rather than the limited quantity of time left,” says Ardito. “Try to become fully present, even in difficult moments.”
In order to make the most of your time with a loved one, no matter how much is left, consider formulating a loose plan or general ideas. “Spend time thinking about how you want to spend your remaining time together,” Waichler suggests. “What can you do to help make this time more meaningful and bring quality and purpose to both of your lives?”
“Think along the lines of creating beautiful moments and memories together,” Waichler continues. “It may be a walk in a beautiful park, spending time in a garden, looking at photos of beloved family and friends and reminiscing or sharing favorite movies or music together.”
Set boundaries, if need be.
“Anticipatory grief can jump-start long-delayed discussions about past unresolved conflicts due to the nature of the circumstances created by impending death,” notes Waichler — but this isn’t the case for everyone, and there’s no guarantee that conversations or interactions will end on a high note.
“If your relationship with the person dying is conflictual or strained and you see no room for healing, identify another person who can step in to be the primary caregiver, if you’re serving in that role,” Waichler says. “You may need to set limits on the frequency and nature of your contacts if you see them ending in conflict. Identify tasks that can be helpful to the person, but that won’t raise conflict. Examples may be helping with meals, helping with laundry or chores or helping to coordinate a caregiving team.”
“Some people experience anger or irritability towards the person who is dying. It is important to recognize and identify the source of these feelings.”
— IRIS WAICHLER, A LICENSED CLINICAL SOCIAL WORKER
Accept your feelings — no matter what.
One of the most important things you can do during such a fraught time is to “acknowledge and accept your feelings, whatever they are, without self-criticism or judgment,” according to Waichler, who notes that “journaling can be a good outlet to process your feelings.”
“Some people experience anger or irritability towards the person who is dying,” notes Waichler. “This may be because you are angry they are leaving you or because of the physical and emotional demands placed on you if you’re caregiving. It is important to recognize and identify the source of these feelings.”
Take care of yourself.
While your aging parent or loved one may be your number one priority, it’s important to “engage in self-care activities during this time,” says Waichler.
“Make time for yourself to get enough sleep, eat healthy meals and exercise,” she says. “Additionally, try mindfulness activities, such as yoga, meditating or praying to gain inner strength and calm. The stronger you are physically and emotionally, the more you can engage with a loved one in meaningful ways.”
— When it’s time to move from home to assisted living
While 8 in 10 Americans ages 65 and older say they want to age in their homes, it’s not always possible when health declines.
Knowing when a loved one needs a more supportive environment, such as assisted living, continuing care retirement community or a nursing home, can be challenging. Though “aging in place” remains a cherished goal, seniors are fretting less about it these days, a recent Associated Press/NORC Center for Public Affairs poll found.
An expert in geriatric mental health offers some guidelines for knowing if independent living is still realistic or if someone needs more care, whether through moving or a home visitation service.
Dr. Molly Camp is an associate professor of psychiatry at University of Texas Southwestern Medical Center in Dallas. In a center news release, she said there are five domains to consider:
Personal needs and hygiene: Basic self-care activities, including bathing, dressing and toileting, must be met. A person’s ability to get in and out of tubs and showers and their risk of falling should be considered.
Home environment: Consider the ability to handle basic maintenance and repairs, as well as access to electricity and water, a sufficiently sanitary living environment and how to avoid safety hazards, such as structural deficiencies.
Necessary activities: Assess whether your loved one can complete complex, essential tasks such as transportation, shopping, meal preparation, cleaning and using technology.
Medical self-care: Your loved one should be able to manage their medications, care for minor wounds and self-monitor for illness.
Financial affairs: Evaluate whether the person has the ability to pay bills on time, track other finances, avoid exploitation, and enter into binding contracts when needed.
Of course, Camp noted, family members may be able to help manage finances and home visitation programs may be able to help with chores such as cleaning and cooking.
Nearly half of all older adults now die with a dementia diagnosis, up more than one-third (36%) in just the past two decades, according to a new study published in the Journal of the American Medical Association.
While these findings are disheartening, they also serve to underscore the importance of advance care planning for the care we want – and don’t want – should we get dementia. Thinking through these difficult decisions and having conversations with our loved ones and healthcare providers now, while we are still capable of making our healthcare decisions, will be a gift to our loved ones and to ourselves.
A good time to discuss your end-of-life care wishes with your family is when you are together, like Memorial Day weekend in May.
It’s important to keep in mind that dementia, as a public health crisis, came as a result of significant advancements in medicine.
As we have discovered cures or treatments for many diseases over the last century that used to be life-threatening, life expectancy has increased, and more people are dying with and from dementia. In short, medicine can prolong how long the body lasts, but not the mind.
However, the default mode within our medical system is to extend the patient’s life, regardless of the quality of life, even for people with advanced dementia. We even subject advanced dementia patients to aggressive end-of-life interventions that inflict needless suffering with little thought.
Dementia patients take comfort from their surroundings; transferring them to a hospital causes agitation, upset and in the most extreme situations, trauma. Yet, nearly six out of 10 nursing home residents with advanced dementia (57%) go to the emergency room at least once in the last month of life.
Furthermore, emergency room physicians are trained to extend life. This reality means you could be subjecting a patient with advanced dementia to cracked ribs as a result of cardiopulmonary resuscitation (CPR), an uncomfortable urinary catheter, or a breathing tube.
A small percentage of people may want these aggressive interventions. However, more than nine out of 10 Americans (92%) agree that a person should “have the legal right to put in writing in advance that they want their caregiver and medical team to stop medical treatments when they are at a specific stage of dementia,” according to a 2018 survey by NORC and the University of Chicago commissioned by my organization.
The way to solve this crisis is to balance our advances in medicine with empathy and respect for the voice and wishes of the individual; to be seen and heard as an individual and not just as a patient.
While every person does have a legal right to forgo treatments, operationalizing this desire is not clear-cut. Dementia is a progressive disease: it’s not always obvious to loved ones the point at which their loved one would want to forgo treatments. Is it when they no longer recognize you, even if they seem otherwise happy? Is it only if they get violent? Or perhaps it takes multiple factors (e.g., can no longer eat, speak, dress themselves or carry on a conversation)?
I encourage all of us to give our loved ones the gift of clarity by filling out the free-of-charge Compassion & Choices dementia values and priorities online tool (values-tool.compassionandchoices.org); this tool helps you create a personalized care plan, based on your selected preferences, that your health care proxy can use to care for you should you get dementia.
While unfortunately there is no cure for dementia, we can take proactive steps to die naturally, potentially with less suffering, through advance care planning.
The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say
By Emily Harris
Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.
When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.
The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.
But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.
After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.
Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.
Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.
Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.
Jean’s experience isn’t an outlier.
Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.
Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.
The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.
Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.
For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.
Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.
“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director
Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.
But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.
Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.
So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.
In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.
“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”
CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.
The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.
Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.
Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.
Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.
“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.
Jean Bishop’s family agrees with that.
Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.
Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.
Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.
“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.
During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.
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