Category: Dementia

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My husband wanted assisted dying, but was denied.

— It’s only right people should have the option

Paul and Alain on their wedding day.

By Patrick Kelleher

In September 2019, Alain du Chemin was diagnosed with a brain tumour.

At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.

“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.

Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.

Paul (L) and Alain (R). They are sitting outdoors on a bench and both men are laughing.
Paul (L) and Alain (R).

He was a pragmatic person, Paul says, and immediately started researching his options.

“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.

“That’s when he started looking into the whole assisted dying process and what it entails.”

Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.

By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.

One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.

Paul and Alain on a plane on their wedding day. Both men are wearing tuxedos and the plane has been decorated.
Paul and Alain on a plane on their wedding day.

It took a while for Paul to realise just how serious Alain was about dying in Switzerland.

“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.

“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?

“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”

‘Laws must change to a more humane model’

In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.

“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”

While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.

Paul and Alain on their wedding day. they are pictured signing the marriage register in a registry office.
Paul and Alain on their wedding day.

Shortly afterwards, Alain’s condition started to deteriorate rapidly.

“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.

“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”

The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.

In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.

On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.

Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.

Paul and Alain on their wedding day. They are both wearing suits and are standing on a red carpet outside a private jet.
Paul and Alain on their wedding day.

That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.

YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.

“It’s about choice,” Paul says.

“I think it’s only right people should have the option available to them.”

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Notes From a Caregiver

— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses

David and Cheryl McNally

“I hate it! I hate it! I hate it!” The tears that flow down her cheeks I am powerless to stop. I hold her hand and respond in the way she has requested, not with words of encouragement but with the truth of her reality.

By David McNally

“Yes, darling, it’s bloody awful,” I say. What must it be like to be losing your mind, to be in a mental fog, desperately seeking to find your way through, only to discover the fog thickens?

My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating.

I keep this at the forefront of my own mind as my wife’s Alzheimer’s progresses, and I am pulled every which way with caregiving duties. Despite needing personal support, the one person who previously was my source of comfort is incapable of giving it to me. And I accept this reality. Her emotional pain is as much as she can handle. My resilience to stay the course must come from other sources.

Caregiving for a spouse with Alzheimer’s is the experience of watching the person you love gradually disappear. My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating. Not without a fight, mind you. It’s her inability to track a conversation, however, that is becoming too difficult. Her withdrawal is slow but evident.

Our journey is unique in that my wife is choosing to die on her own terms. We are now at the stage where she has put down a marker as to when this will happen — within the next year. Cheryl, my wife, will VSED (Voluntary Stop Eating and Drinking). There will be no memory care unit, no unnecessary suffering for her or her loved ones. When life holds no more joy, and nothing matters anymore, she will begin the process.

Suspension of ‘Normal’ Life

In so many ways, therefore, “normal” life is suspended for me. But then, what is normal at the age of 76? My role as a caregiver is not an aberration; there are millions meeting the needs of loved ones with debilitating, terminal illnesses. What racks one’s own emotions is witnessing the incremental progress of this disease, and the waiting. One is caught in the conundrum of not wanting your wife to suffer but not being ready to let her go.

There is also the guilt associated with looking to the future, a future beyond and without Cheryl. How can I think of such things! Yet wisdom tells me my thoughts are understandable. It is nature’s instinct for survival. Almost twenty years ago, my first wife died of ovarian cancer. I was 56 with potentially many years ahead of me. Now at 76, there are obviously fewer years, but what if there are ten or more? Giving up on life is anathema to me.

This attitude sustains me until it doesn’t. The confidence that I will be okay can be severed unexpectedly. Recently, while cleaning the kitchen, I asked “Alexa” to play Andrea Bocelli. As if to ensure I was fully aware of the grief to come, Bocelli began with, “Time to say goodbye.” I sobbed, as the enormous void soon to be in my life washed over me.

“Then again,” says my incredibly active mind, “who is to say you won’t go first. There is no evidence of illness, and you have a high sense of well-being, but don’t get ahead of yourself. Remember your own debilitating cancer treatment ten years ago. Yes, you were cured but another unpleasant surprise could be on its way.”

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Trying to Make Sense of Caregiving Experience

This is also not Pollyannish or being in denial, but an understanding of how joy and grief can co-exist. Ironically, Cheryl and I laugh a lot. I have the heritage of a British wit and she has a wonderful sense of humor. I don’t believe I have seen anything more beautiful than when her face lights up with a spontaneous smile. She is a magnificent audience of one. That is more than enough applause for me.

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Life is a mystery. That is my current conclusion from my time on this planet. How does one reconcile two wives with terminal illnesses? Railing at God serves no useful purpose. Well-meaning people utter a popular admonition: “God doesn’t give you anything you can’t handle.” My theology is God does not designate illness to one person and not another. That being said, I do believe that within each of us is a spirit that enables the transcendence of enormous difficulties.

Being a reflective person, I endeavor to make sense of this caregiving experience. Several years ago, I wrote a book called “Even Eagles Need a Push.“To quote from my own writing, I stated: “I have been down many paths looking for happiness. But nothing has made more sense and resulted in more contentment and fulfillment than this understanding — the purpose of life is to be a growing, contributing human being.”

There are certainly growth opportunities as a caregiver: patience, surrender, compassion in action, letting go, and acceptance, to name a few. Moreover, contributing to the safety and security of another is as purposeful as it gets. I have no answer to why life has led me to this place and no idea of what the future holds. I am willing, however, each day to step into that mystery.

Complete Article ↪HERE↩!

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Thinking of Becoming a Guardian?

What you should consider before you agree to be responsible for an incapacitated loved one

By Patty Blevins

What you should consider before you agree to be responsible for an incapacitated loved one

If you haven’t had any experience with guardianship for adults with dementia, it’s likely you don’t understand just how complex it is. You are not alone. Many family members of the estimated 6.5 million dementia patients in the U.S. struggle to understand if it is an option for their loved one.

Many more people will face that decision because the number of people with dementia will grow to 14 million by 2060, according to Centers for Disease Control estimates.

An adult son making food for his mother with dementia. Next Avenue
In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs.

The simplest definition of guardianship is the position of being responsible for someone else. State courts appoint a guardian to make decisions for another person if the court finds the person to be incapacitated or unable to make safe, reasonable decisions for themselves, according to National Academy of Elder Law Attorneys (NAELA).

The simplest definition of guardianship is the position of being responsible for someone else.

Guardianship is serious business. People placed under guardianship, who are called wards, may lose their independence in making decisions about their finances, legal issues and health care. According to the U.S. Department of Justice, full guardianship can control whether wards can vote, who they may marry, where they live and if they can make end-of-life decisions for themselves.

An article in the American Journal of Alzheimer’s Disease and Other Dementias explains that the two tasks that are regularly evaluated in determining capacity are an individual’s ability to manage personal finances and take medications as prescribed.

Choosing and Monitoring Guardians

In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs. A geriatrician is a specialty doctor who treats people over 65 with a focus on diseases like dementia that primarily affect this age group.

The National Academy of Elder Law Attorneys says guardianships offer safeguards. Guardians, for example, must periodically update the court on the ward’s finances and health status. Even then, courts have the authority to initiate unscheduled reviews of guardians’ decisions about their wards’ finances, property and health care.

Guardianship, “when properly used,” is a beneficial method to protect an incapacitated person for whom no other means are available to assist with informed decision making, the organization says.

That describes the original intent of guardianship, but it assumes the guardian is honest and accountable. Unfortunately, this is not always the case. Ample examples of abuse are documented by researchers and prosecutors.

An article in the Journal of the American Geriatrics Society first published in April 2022, sought to make a quantitative evaluation of guardianship in the United States but the authors found little consistent standards and data collection regarding the impact on patient care and the quality of life of people subject to guardianship.

Impediments to Oversight

The inconsistencies included fundamental matters, including the following:

  • The scope of the guardian’s duties.
  • Minimum standards for guardians. As of 2020, there were two states that had yet to require a background check.
  • Determination of incapacity. In the past, this decision often defaulted to a physician based solely on a psychiatric or medical diagnosis.
  • Regular independent reviews of the ongoing necessity of guardianship.
  • Educational requirements for guardians. Guardians are often required to serve in many roles that they may have minimal or no training. The National Guardianship Association (NGF) partnered with the Center for Guardianship Certification (CGC) to standardized educational content and offer certification.
  • Other drawbacks of guardianship included:
    • Once guardianship is assigned, there is greater tendency for the person to become lost to follow up. People who have been labeled as incompetent or incapacitated have limited ability to advocate for themselves, contact an attorney or access funds for court proceedings.
    • There is a greater tendency to assign full guardianship instead of less restrictive alternatives.

    Recent Guardianship Law

    In 2017, the Uniform Law Commission, a non-profit association that provides states with model legislation to clarify and standardize laws across jurisdictions , released The Uniform Guardianship Conservatorship and Other Protective Arrangements Act to encourage the “trend toward greater independence for persons under guardianship.”

    “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones.”

    The act addresses many of the previous inconsistences and proposes solutions going forward. So far, seven states have enacted the model guardianship statute in full and many more have adopted parts of it, according to the National Center on Elder Abuse.

    Alternatives to Guardianship

    There are multiple alternatives to guardianship but Americans need to start talking to each other. “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones,” according to the article in the Journal of the American Geriatrics Society. These measures should begin at the first sign of memory loss or preferably when getting ready for retirement to delay or prevent guardianship.

    • Tell your family your wishes and write them down in an advanced directive (living will and health care power of attorney).
    • Create a value history. A value history is based on values and beliefs and it provides a person’s future care choices.
    • Evaluate limited (partial) guardianship as an alternative to full guardianship. In this case, guardianship is granted only over the areas for which the person lacks the capacity for rational decision making (finances).
    • Designate a durable power of attorney and list two or three backup candidates for this important position if the first choice is not available. This agent could be responsible for financial, legal and personal matters.
    • Investigate care management services. Care managers are usually nurses or social workers that are trained to identify and provide for a client’s medical, psychosocial and financial needs.
    • Find a payee. Many organizations offer money management services which serve as a payee for vulnerable clients.
    • Enlist the help of your primary care doctor. You may have to teach them about guardianship and the role you would like them to play, but they could become your greatest asset.

    Guardianship as the Only Answer

    Appointing a family member or friend as your guardian often is the ideal solution. But sometimes a court-appointed guardian is the only answer. My own experience is an example.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety.

    My father was diagnosed with multi-infarct dementia in 2016. The disease transfigured him from an intelligent, robust, fun-loving father into, let’s say, something different. My mother already had passed away, and my three siblings and I agreed that his guardian should be the same sibling who was listed as his Health Care Power of Attorney.

    That legal document lets you state your medical wishes and appoint another person to make sure those wishes are followed if you are incompetent or no longer able to make your own health care decisions.

    Release, Then Relief

    We all arrived at the courthouse and my father surprised all of us by saying he didn’t want my sister, who had his Health Care Power of Attorney, to be his guardian. Another court hearing was scheduled, at which he agreed to have the court appoint a lawyer to be his guardian.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety. We would not be the ones sifting through his financial records to explain his debt and explain that his mortgage was being foreclosed on. We could preserve a few remnants of a familial relationship and focus on being supportive.

    The guardianship duties performed by the appointed attorney were far from flawless. But, overall, they served as the best answer for the situation at the time.

Complete Article ↪HERE↩!

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Anticipatory grief: How to cope if you’re struggling to watch a loved one age

— Here, experts break down anticipatory grief, an under-talked-about and all-too-common experience of watching loved ones get older.

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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.”

Complete Article ↪HERE↩!

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Dementia: How long can a person live without eating or drinking?

By Belinda Weber

Many people living with the later stages of dementia may not eat or drink. They may also develop dysphagia, which prevents them from swallowing effectively. How long a person can live without food and liquids varies, but doctors believe that sufficient end of life care may help improve their quality of life.

Dementia refers to a group of neurocognitive conditions that can permanently damage the brain. Alzheimer’s disease is the most common type, accounting for between 60% and 80% of dementia cases, according to the Alzheimer’s Association.

This article explains why someone living with dementia may stop eating and drinking. It also suggests ways carers can support them.

There are many reasons a person may stop eating and drinking. As a neurocognitive disorder progresses, most people become less active and do not need to consume as many calories.

According to the National Foundation of Swallowing Disorders, at least 45% of people living with dementia also experience dysphagia, which refers to difficulty swallowing. This can cause a person to be unable to consume adequate nutrition and liquids.

People living with dementia may also notTrusted Source be as diligent about their oral hygiene as they once were. This can cause them to have sore mouths, teeth with infections, or ill-fitting dentures.

Another reason may be that the damage in the brain has spread to the hypothalamus, the area that regulatesTrusted Source food intake. Alternatively, it could be that the person no longer recognizes things as food or forgets about eating.

Age can also play a part as the muscles involved in swallowing lose mass, resulting in a loss of strength and range of motion. The person may feel as if they are choking on food or cannot move it out of their mouth.

No one can say for sure how long someone can survive without eating or drinking, as it involves many factors. These include the person’s age, overall health, and how well their immune system can fight infections.

If someone has dysphagia, this can indicate that their neurocognitive disorder is progressing, as dysphagia usually occurs in the later stages. This increases the risk of a person inhaling food or liquid, leadingTrusted Source to chest infections.

While it is impossible to predict exactly how long someone can live without eating or drinking, having dysphagia can mark the beginning of end of life careTrusted Source.

People living with a neurocognitive disorder may benefit from end of life care for days, weeks, months, or years.

Artificial nutrition and hydration (ANH) is a procedure where doctors deliver nutrients and fluids intravenouslyTrusted Source into a person’s body via a tube. This tube runs into the stomach from the nose or a device fitted into the stomach.

However, these doctors need to administer these treatments in a medical setting, and many people with a neurocognitive disorder find the experience distressing. Some individuals may try to remove the tubes.

Doctors do not agree about recommending ANH for people living with late stage dementia as it is unclear whether it provides any overall benefits.

The American Speech-Language-Hearing Association notes that tube feeding does not improve the quality of life of a person with a diagnosis of dementia. Additionally, it states that tube feeding does not reduce their risk of developing a chest infection.

The Alzheimer’s Association recommends people living with a neurocognitive disorder plan their late stage care while they can still express themselves and make decisions. This can include whether or not they want ANH.

When someone living with dementia is nearing death, they tend to deteriorate more rapidly. They may develop incontinence and agitation.

According to the United Kingdom’s Alzheimer’s Society, signs that death is near for someone living with dementia include:

  • loss of consciousness
  • irregular breathing
  • restlessness
  • rattly sound in the chest
  • cold hands and feet

A 2019 study listed pneumonia as the cause of death for 50%Trusted Source of people who required hospital care due to dementia.

Doctors recommend helping someone eat and drink for as long as they can, even if they eat in small amounts. The Alzheimer’s Association suggests:

  • offering soft foods
  • thickening liquids with cornstarch or unflavored gelatin
  • alternating bites of food with sips of drink
  • offering sherbet or ice cream
  • serving finger food if someone has difficulties using cutlery
  • helping the person sit in an upright and comfortable position

Many people living with a neurocognitive disorder may stop eating and drinking. This may be due to infections, but it may also result from individuals experiencing swallowing difficulties.

Swallowing difficulties, or dysphagia, often indicates that the person’s neurocognitive disorder is progressing and may have reached the later stages.

Doctors believe that the person’s body adjusts to the reduced food and liquid intake and that people do not feel hunger or thirst.

Swallowing difficulties increase the risk of inhaling food particles or fluids, which can lead to chest infections, including pneumonia.

Complete Article ↪HERE↩!

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Race and ethnicity affect end-of-life care for dementia patients

— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” says Elizabeth Luth.

by

Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.

Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.

“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.

“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”

To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.

In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.

The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.

The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.

“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.

“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”

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After a Dementia Diagnosis

— Preparing for the Future

A diagnosis of dementia, a category of diseases affecting memory and thinking that includes Alzheimer’s disease, can feel overwhelming and upsetting. You might worry that you will lose control over your life and ability to make your own decisions. Fortunately, receiving a diagnosis of dementia or Alzheimer’s does not mean that you cannot execute legal documents or make decisions about plans for your future finances and health care.

People with dementia can execute legal documents to plan for their futures when they have the mental state — or capacity — to do so. Capacity refers to your ability to understand the contents of a legal document, such as a will, and know the consequences of executing it. If you know who your family is, understand your assets, and comprehend your will, you can execute a valid will and plan for the distribution of your estate after your death, provided you understand what you are signing and its effect on your life.

The following can help you in planning where you wish to live, what kind of care you receive, and what happens to your assets if you get severely ill or pass away.

Health Care Power of Attorney

Consider appointing a health care agent to make medical decisions if you become incapacitated. You can name a health care agent using a health care power of attorney, sometimes called a medical power of attorney or a durable power of attorney for health care. Your health care agent can make medical choices if you can no longer do so.

Picking someone you trust, such as a responsible child or spouse, or another family member, can give you peace of mind that they will have your best interests and desires in mind when they make decisions. For instance, dementia patients who prefer receiving in-home care can express this wish to their agent.

In the power of attorney document, you can also state your intentions regarding health care and limit your agent’s capabilities if you wish.

Living Will

For an added layer of protection, you can also draft an advance directive or living will that states your desires regarding medical treatment if you are unable to communicate with your physician. Your living will can express whether you want treatment to prolong your life.

Financial Power of Attorney

Using a financial power of attorney, known as a power of attorney for property, you can select a trusted individual to handle your financial affairs if your disease progresses such that you can no longer make financial decisions. Your financial agent can manage your money and pay bills on your behalf, but they cannot use your money for themselves.

In the power of attorney for property document, you can restrict your agent’s powers. For instance, a person might specify that the agent can manage personal accounts, but not sell the family home.

Long-Term Care Planning

After a dementia diagnosis, consider whether you would like to receive long-term care at home or in a facility, and whether you intend to apply for Medicaid or long-term care insurance. If you want to apply for Medicaid, you might need to prepare your finances to become eligible.

Last Will and Testament

Making a last will and testament, also known as a will, can help ensure your assets go to your family and friends when you pass away. You can determine how much of your money each beneficiary will receive and make bequests to individuals. For example, if you have items of sentimental value, you can leave them to specific people. Without a will, your assets will transfer to your heirs according to the law in your state.

Consider meeting with an elder law attorney in your area to discuss your plans for your future.

For additional support and to learn more about Alzheimer’s disease and related disorders, reach out to your local Alzheimer’s Association chapter.

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