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.
The need for grief counseling in dementia care may be substantially underestimated, according to new research led by a UCL academic.
The study into levels of pre-death grief for caregivers of someone with dementia found that the need for formal counseling was around 300% higher than current predictions.
The new International Journal of Geriatric Psychiatry paper was supported by the end of life charity Marie Curie.
The current public health framework model for bereavement care states that most people will adapt to loss through support from their social network but suggests that 10-12% of people will require professional support.
However, this new study found that 30% of dementia caregivers needed professional support.
The paper describes pre-grief as the caregiver’s response to “perceived losses in a valued care recipient”, adding that, “Family caregivers experience a variety of emotions (e.g. sorrow, anger, yearning and acceptance) that can wax and wane over the course of dementia, from diagnosis to the end of life.”
Lead researcher Kirsten Moore, who completed the study while based at the Marie Curie Palliative Care Research Department, UCL Psychiatry, said, “Our research showed that 78% of those caring for someone with dementia reported experiencing pre-death grief. The participants cited that finding the right person to talk to wasn’t always easy and that some feel they can’t access bereavement services as the person is still alive.
“We can see that the current bereavement models may underestimate the level of formal counseling and support these caregivers need and that services are under-resourced to meet the demand, meaning people are going without much-needed support. These caregivers provide vital care to people living with dementia, and they have a right to access appropriate support for their own well-being.”
Deborah Paget, 61, is a retired nurse who cared for her mother, Audrey, when she was diagnosed with vascular dementia and Alzheimer’s. Deborah says, “When I was caring for my mum, I found there was nothing in terms of support for pre-grief, there was no framework, no structure, nothing. I was in deep mourning for my mum, and I didn’t know how to reach out to anyone for emotional support
“The grief I experienced before she died, compared to after, was so different and I felt so unprepared. Looking back, I should have tried to reach out but when you are caring for someone, you need to be encouraged to reach out for support. There needs to be a structure in place that signposts you to the support you need. After my mum died, I was so overwhelmed, and I felt so lost and alone. With a bit more support to manage my grief, while she was still here, perhaps I would have been able to cope just a little better.”
Marie Curie says change is needed urgently, not just to meet the current need but to ensure that bereavement services are ready to meet the increased future needs of the UK’s aging population.
Rachel Warren, Senior Policy and Research Manager at Marie Curie, and researcher on the UK Commission on Bereavement, says, “Caring for a loved one with dementia can be a lonely and distressing experience. When someone mourns a loved one who is changing every day they can experience grief for the person who is still alive.”
“Without appropriate support some caregivers are at risk of later experiencing prolonged grief disorder which can have a detrimental impact on their well-being. We know from the findings from the UK Commission on Bereavement that being well supported before and during a death is vital to how someone copes when the death occurs.”
“The number of people living with Alzheimer’s is increasing with the aging population, so we urgently need to ensure better support is in place for caregivers. If the Government invested just the equivalent of a pint of milk for each person in the population, it would help to transform the availability and accessibility of bereavement support to those who need it.”
The UK Commission on Bereavement, an independent commission launched in June 2021, looked at the experiences of people who had been bereaved over the past five years. Based on the findings, it made eight key recommendations for a vision for bereaved people in the future. These included being well supported before and during the death, and to be able to easily find and access the right emotional bereavement support that suits their circumstances.
Dr. Richard Oakley, Associate Director of Research at Alzheimer’s Society, said, “This study shows what we see every day on our Dementia Support Line—we desperately need an improved, better-resourced grief and bereavement support system that not only supports caregivers at end of life but in the case of dementia, from diagnosis onwards.”
“For a caregiver, strong feelings of grief can arrive well before a person living with dementia reaches the end of their life, as there is a loss of a shared future and intended relationship and lifestyle.”
“These feelings may develop or change as the person’s dementia progresses and can start when they first notice they are unable to do the same things they used to, when they are diagnosed, or at any other point while they’re living with the condition. While family and social networks play an important role in providing support, this research shows that these networks alone are often not enough.”
“With dementia cases set to rise to 1 million by 2025, it’s not acceptable that families continue to face their grief alone. We need to have the right support available for families to support them along the whole dementia journey from diagnosis to end of life.”
— Dementia brings ‘unofficial loss’ and often leads to grieving alone
By Lauri Perman
When my teenage sister died in a car accident, friends and neighbors blessed our family with oodles of food. The large dining room table, used only on holidays, was covered with food, enough to serve all the out-of-town family members who crowded in the living room. In the aftermath of a horrific death, community support was abundant and healing, a source of comfort, both emotional and practical. Our family’s grief was recognized and honored; it was “official” grief in the eyes of the world.
This is in sharp contrast to what happens when a spouse develops dementia. In her November 2019 New York Timesarticle, “The Loneliness of Frontotemporal Dementia,” Dr. Sara Manning Peskin quoted a spousal caregiver as saying:
“This grief is not official … Casseroles do not appear at the front door, flowers are not delivered, condolence letters are not received.”
At a time when a spouse has lost a partner, the community often retreats rather than rallies around. It’s well known that spousal caregivers end up isolated. What is less well known is that in their isolation they are grieving alone.
Their spouses are alive and yet no longer present. It is what family therapist Pauline Boss calls an “ambiguous loss.” During my husband’s long years of decline, it often felt as if someone had kidnapped him. I’d look at the stranger in the familiar body and ask myself, “Who are you? And what have you done with my husband?”
Friends disappear. At first I wondered what was wrong with us that our friends had disappeared. Then I realized it was normal and happens to most people. I learned to treasure those rare people who stayed or re-appeared. When my husband was in skilled nursing care, it was a great comfort to me when other people recognized his existence by visiting or sending him a birthday card.
To engage in conversation with someone with dementia it helps to let go of expectations. The person we once knew is no longer present. If we recognize that loss and acknowledge our grief, we are better positioned to engage with the new person before us. Visiting with someone with dementia can be an opportunity for creativity and to practice cognitive flexibility. It can be good for us, a different form of exercise and meditation.
When my husband was still well, he had a lovely dinner with his mother at a Chinese restaurant when her dementia was quite pronounced. They ordered two entrees to share. My mother-in-law took some of the first dish, declared it excellent, and then did the same with the second. Next she returned to the first dish and said, “Oh, I haven’t tried this one.” And try it again she did, once again for the first time. Each dish she tried, no matter how many times she’d tried it before, was for the first time. By the time dinner was over, my husband estimated she’d enjoyed a full Chinese banquet. He exercised cognitive flexibility in not correcting her.
If you know someone whose spouse has dementia, please reach out. Take the person to lunch and listen, really listen. Ask the spouse what he or she misses the most. Acknowledge that their life has changed, that they have had an “unofficial loss.” Sometimes it may be more helpful to take the person with dementia out for lunch or for a walk, to give the caregiver some precious alone time.
It can be especially hard to comfort a caregiver who denies their loss, and many do. This semi-heroic stance seems admirable, but the pain is present nonetheless. It’s a delicate balancing act to acknowledge both the presence and the absence of the person with dementia. Of course dementia is a gradual loss not a sudden death and the caregiver’s needs change over time and sometimes even from day to day. Staying in touch helps you know what kind of support is most helpful.
What happens when the person with dementia dies? Does the community rally around the bereaved spouse? Unfortunately no. Often the community consoles the bereaved spouse with words such as “It’s a blessing.” Or, “I know you wouldn’t have wanted him to live much longer.” Or, “He didn’t really have much of a life any more, did he?” “Now you’re free. You’ve been so burdened with caregiving.”
The spouse is denied support when the person with dementia is living and denied support again when the person with dementia is dead. We can and must do better. When someone with dementia dies, the bereaved spouse has still lost a beloved person whose death merits the same compassion any death does.
— Few support services available to help people deal with the implications of at-home testing
Lexi Nelson talks to her mother Wendy at their home in Foxborough, Mass., March 21, 2023. Wendy’s mother died from Alzheimer’s disease, her father suffers from it, and genetic tests show that Wendy and her three daughters each carry a gene variant indicating an increased risk.
Wendy Nelson watched her mother slowly die of Alzheimer’s disease, unable to move or swallow at the end.
“All her pleasures of life were gone,” Nelson said.
Grief-stricken, terrified of facing the same death, Nelson ordered 23andMe DNA test kits for Christmas 2020 for herself and three adult daughters.
A Boston-based biotech executive who is now 52, Nelson hoped the kits would provide reassurance. They delivered the worst possible result. Nelson has two copies of the APOE4 gene variant that increases the risk of Alzheimer’s, which means her risk of developing the disease is eight-to-12 times higher than people with the most common version of APOE.
“It totally backfired,” she said.
Millions of people are expected to test for Alzheimer’s in the coming years — some like Nelson, with at-home test kits, others at labs, as new drugs for people with early Alzheimer’s from partners Eisai Co Ltd and Biogen and Eli Lilly usher in sweeping change in approaches to treatment of the disease.
Testing for the APOE4 gene variant among Americans being treated for Alzheimer’s has more than doubled from a year ago, an exclusive analysis of medical records for Reuters by health data firm Truveta found. The increase was driven by the new treatments that promise to slow the progression of the disease, but also carry risks, especially for people like Nelson carrying two copies of APOE4.
Yet few support services are available to help people deal with the implications of APOE4 testing, according to interviews with more than a dozen neurologists and genetic counselors. Alzheimer’s patients and caregivers face a shortage of genetic counselors to explain the tests and help them navigate the psychological, medical, financial and legal consequences.
Eisai and Biogen’s Leqembi, which arrived on the market in January, costs $26,500 US a year and is not covered by U.S. Medicare outside of clinical trials. Medicare has said it will expand coverage if the drug is granted full U.S. approval, expected this summer.
‘Existential dread’
“When you learn that information, you’re potentially learning information about your siblings, about your children,” said Emily Largent, a bioethicist and health policy expert at the University of Pennsylvania Perelman School of Medicine.
“People describe feeling existential dread.”
As a scientist, Nelson understood intellectually what her APOE4 results meant, but they created emotional havoc for her family. She had inherited one copy of APOE4 from her mother and the other from her father, who was showing no symptoms of Alzheimer’s at the time.
When her father’s memory began to fail a year later, one of her two sisters doubted it could be Alzheimer’s, Nelson said. Nelson knew he had to have the disease, because of her genetic test results.
The tests also showed that each of Nelson’s three adult daughters had one copy of APOE4, which triples or quadruples the risk of developing the disease — confronting them with their own Alzheimer’s risks along with their mother’s.
Nelson’s daughter, Lindsey, 22, and a fourth year nursing student at New York University, said she was traumatized when, even before testing, Nelson talked about exploring assisted suicide rather than suffer her mother’s fate.
“I would yell at her, cover my ears and run away,” Lindsey said. “There are many complicated emotions involved.”
Nelson’s eldest daughter, Lexi, 24, who works in data analytics, turned to research showing that lifestyle changes such as weight lifting can improve cognitive function. “I’ve tried really hard to improve my sleep, I’m exercising a lot,” she said.
Her youngest, Pam, 20, a sophomore biology major at UCLA, said she takes comfort in knowing that her mother’s result is not a diagnosis. “It’s just a risk factor, and there are many other factors that influence what will happen.”
Leqembi is not suitable for Nelson, who is not symptomatic. Even if she were eligible, she said she is not a fan because of the risk of brain swelling, which is higher for people with two copies of APOE4.
Nelson is pinning her hopes on an experimental pill from Alzheon, which is being tested in people with early Alzheimer’s who have two copies of APOE4.
This Dec. 21, 2022 image provided by Eisai in January 2023, shows vials and packaging for their medication Leqembi. Leqembi is not suitable for Nelson, who is not symptomatic.
She is working her way through a bucket list of trips. In February, she climbed Mt. Kilimanjaro to raise money for a cancer charity, and she would like to visit Patagonia, the Greek Islands, South Africa, possibly Antarctica.
If treatment fails, she said she has her “exit plan”: legal euthanasia through a clinic in Switzerland. “I do not want to live the way my mom had to live her last five years of life. She was miserable,” she said.
The testing revolution
Until recently, most doctors tended not to order genetic tests to determine Alzheimer’s risk, because there were no effective treatments to slow or prevent the disease.
That changed with Leqembi, which was shown to reduce the rate of cognitive decline by close to 30 per cent in patients with mild Alzheimer’s. Eli Lilly’s donanemab is in clinical trials with results expected by June.
Both drugs remove the buildup in the brain of amyloid plaques associated with Alzheimer’s, and are viewed as a first step towards even more effective treatments. Both can cause swelling and microbleeds in the brain. U.S. regulators recommend genetic testing before starting treatment with Leqembi.
“With this drug, it behooves us to check,” said Dr. Sarah Kremen, a neurologist at Cedars-Sinai in Los Angeles.
In the four months ahead of U.S. approval of Leqembi in January, APOE4 testing among people over 55 who visited a doctor within the last 30 days increased 125 per cent. From September 2022 to January 2023, the rate averaged 1.4 tests per 100,000 patients, compared with 0.6 tests per 100,000 patients in the same period a year earlier, the analysis by Seattle-based Truveta found.
The analysis was based on a review of medical records from 7.9 million adults at 28 major U.S. hospital systems. It does not include at-home consumer tests.
The National Institutes of Health estimates up to 25 per cent of people in the United States have one copy of APOE4 and up to five per cent have two copies. Yet there is a shortage of genetic counselors to help families deal with the implications of having two copies of APOE4.
A 2018 study in the European Journal of Human Genetics found the U.S. had just one trained genetic counselor per 82,000 people. The United Kingdom had 1 per 193,500.
Banner Alzheimer’s Institute in Phoenix, which is testing Lilly’s donanemab, is researching an interactive online platform to deliver APOE results to volunteers being screened for enrollment in the trial.
“We needed a scalable way to warn people about the potential benefits and risks of genetic disclosure,” said Dr. Eric Reiman, Banner’s director.
Better not to know?
While the U.S. Genetic Information Nondiscrimination Act (GINA) bans discrimination in employment and health insurance, it does not cover long-term care and disability and life insurance.
Some members of families with increased genetic risk of Alzheimer’s say it might be better not to know at all.
Dovie Bryant, 77, who is taking part in the Lilly trial, lost her mother to Alzheimer’s in 2012.
When she shared with her five siblings that she had one copy of the APOE4 variant, none wanted to find out their own status.
Her brother Jim Painter, 71, said he feared testing could make it harder to pass a health screening to move into a retirement community that offers increasing levels of care as a person ages.
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).
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.
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.
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.
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.”
— 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.
“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.
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.
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.
