CHAPTER THREE
WELL BEFORE DEMENTIA is finally diagnosed, families typically struggle for some time with the nagging feeling that something is wrong. Often, they delay action because they’re unsure. Is Mom’s sudden anger and anxiety just normal aging? Is Uncle Joe just discovering a new side of himself, or are his lewd comments something more serious? Dad forgot about that one appointment, but maybe it was just an honest mistake. Shouldn’t old people be able to make their own decisions, even if they seem ill-advised?
Our society values individual independence. Families and courts thus rightly use caution when considering the possibility of limiting an adult’s free will. Geriatric specialists seek to preserve as much as possible of their patients’ freedom. Our preference is to help patients live their lives as they wish, in their own way.
Yet the reality of dementia cases runs counter to this understandable desire of individuals, courts, and doctors to preserve independence. A memory-impaired elder with complete independence can be a danger to himself and to others.
Afraid to Give Dementia a Name
Eleanor began to notice changes in her mother thirteen years before she was formally diagnosed with Alzheimer’s disease. First, her mom had started to complain about driving. “It’s too confusing! The other drivers are crazy!” She got lost on the way to a lunch appointment. Then she misplaced her jewelry and accused the housekeeper of stealing it. She became convinced that her husband, who was devoted to her, was cheating.
After several years of such incidents, Eleanor offered to take her mother to Puerto Rico. She hoped it would give her father a break. It was a disaster. Her mother didn’t want to leave the hotel room. She saw people in the bushes. She was so unnerved by the new environment that she wouldn’t go to sleep and wouldn’t let her daughter sleep, either. It was worse than vacationing with a toddler.
When they got home, the daughter gently suggested that maybe Mom had some sort of dementia. Her father refused to discuss it. For a while, neither parent wanted to see their daughter. Though they eventually softened, both refused to talk about the mother’s changed behavior and capabilities.
Years passed. The mother grew increasingly suspicious, refusing to let visitors or doctors into the house. The father’s health started to suffer. Finally, the kids researched various dementia facilities. The father needed a knee replacement, and the kids used that as a pretext to get their dad out of the house.
They brought me in to evaluate their mother, who was ever more paranoid and irritable. I adjusted her medications so that she became calm enough to enter a dementia facility. (In my experience, antianxiety meds, such as lorazepam [Ativan] or alprazolam [Xanax], aren’t a good choice to improve behavior long term in elders with dementia.) The kids finally convinced their father that Mom needed help. After years and years of being the 24/7 caregiver, the exhausted father relented. He had his surgery, and his health improved. His wife got better care in a dementia unit.
Actually recognizing that problems may have their roots in dementia is one of the most difficult things for families. Remember that the earlier a person is treated for dementia, the better the outcome. This is true not only in medical terms but also in terms of emotional, physical, and financial well-being.
Families who suspect that a loved one is suffering from dementia don’t need to go from zero to sixty miles per hour in under a minute, but they do need to act as quickly as possible. Those who intervene early have the best chance of preserving their loved one’s ability to function, the best chance of avoiding legal and financial troubles, the best chance of getting appropriate medical treatment, and the best chance of getting support so that the strain of caring for a demented relative doesn’t overwhelm them and damage their own health. Comprehensive treatment includes identifying which medications to remove, the team needed for care, activities to enrich, treating pain, caring for needs, and determining which medications will help.
Dementia doesn’t forgive delay or rationalization. You need to switch gears from being the agreeable spouse or the dutiful child to the advocate who prioritizes the need to safeguard the health and well-being of your loved one. The stakes are high. Left unrecognized or untreated, elders with failing brain function may suffer all kinds of disasters. The biggest mistake families make is ignoring their gut feelings. If you suspect there’s a problem, don’t explain it away. Check it out. Ask the neighbors what they observe. Make a report to Adult Protective Services. Research geriatricians in your area, and call for an appointment.
The Price of Inaction: Undue Influence
Elders with early dementia often get in trouble when someone tries to exert what’s called “undue influence.” In layman’s terms, this means that someone is trying to take control over the elder’s affairs and doesn’t have their wishes or best interests at heart. All the abuser needs is an opportunity and a sense of entitlement. Unfortunately, con artists identify dementia much more efficiently than the rest of us.
It’s easy to see how these situations arise. As dementia progresses, the older person feels lonely and increasingly lost. The kids may live far away. Or they may live nearby but be consumed with their own jobs, kids, and concerns. Someone—a driver, a housekeeper, a neighbor, a distant relative—steps into this void and becomes the elder’s “fixer.” Dad or Mom suddenly has a new best friend. Then the new friend starts asking for legal control (such as power of attorney; see chapter 12), money, or assets like cars and houses.
The House that Got Away
Cindy, an eighty-seven-year-old former schoolteacher, needs money for car repairs. She decides to sell her house to a neighbor for one-quarter of its appraised value. Cindy’s son, Liam, tries to intervene, but his mother says it’s her decision, getting angry when her son tries to press the issue. Liam doesn’t have power of attorney, nor is his name on the deed of his mother’s home. With no legal recourse, he reluctantly decides to contact a lawyer to help get his mother declared incompetent. He doesn’t want to take away his mother’s independence, nor does he want to go against her wishes, but he feels he must protect her.
Cindy has a preliminary test of her mental function and gets a marginal score. Depending on how you look at it, she’s on the low-functioning side of normal or the high-functioning side of dementia.
Although she can’t remember the name of her neighbor, Cindy says she’s sold him her house already. Her lawyer refuses to allow more in-depth neuropsychological testing and maintains Cindy is competent to handle her affairs.
Liam is advised to call Adult Protective Services. The authorities conclude that the neighbor and the attorney seem aboveboard, and besides, Cindy’s score on the preliminary test of mental function, the Mini-Mental State Examination (MMSE), is 25 points out of 30. A score of 24 or more is typically seen as suggesting normal cognition, but it is only a screening test. In this case, comprehensive neuropsychological testing would show the loss of judgment, resulting from decreased frontal lobe function, that leaves her unable to make reasoned decisions. Sadly, that detailed testing is not ordered, so Cindy can do what she wants. She sells the house to the neighbor for a ridiculously low price.
Not long after this, Cindy stops paying her bills, a common sign of early dementia. Her lawyer starts paying bills for her. When Cindy dies a year later, Liam discovers that he has been cut out of her will. In the changed will, all the assets go to the neighbor whose name Cindy couldn’t even remember.
No doubt, Liam regrets not having discussions with his mother years earlier about her finances and preparing for a future when she might need some protection.
The Price of Inaction: Financial Abuse
The earliest days of dementia may be the most perilous to financial safety. An older person may appear to be just fine in a casual social setting and yet have seriously impaired judgment. There are legions of people ready to take advantage of the gap.
• Phone representatives from sweepstakes and lottery companies routinely call elders. It’s not uncommon for an older person with faltering judgment to send tens of thousands of dollars to an overseas lottery.
• Elders who donate to one charity may be subjected to pleas from dozens of other non profits. People who’ve lost the ability to assess risk can have their assets drained by donations they can’t afford.
• A contractor may accept payment for work, then never show up to complete it—or worse, come in and cause damage, then demand more money to fix the mess.
Unscrupulous caregivers may sweet-talk their employers into writing them checks for undocumented loans or giving them free access to their ATMs—may even suggest marriage. Forty percent of cases examined in a 1998 study by the National Center on Elder Abuse involved some sort of financial abuse, amounting to 220,000 victims in a single year. About 30 percent of all crimes against elders involve financial exploitation, a higher percentage than the physical abuse that most families fear. In 2003, the U.S. Senate’s Special Committee on Aging reported to Congress that more than three out of four cases of elder abuse go unreported. On that basis, it conservatively concluded that three million to five million seniors are taken to the cleaners annually. Financial abuse was estimated to have cost elders in America as much as $2.9 billion in 2009, according to a MetLife Mature Market Institute study.
Losing savings or a house to an unscrupulous person damages both the health and well-being of the patient. Over and over, I’ve seen patients make disastrous financial decisions that put them at risk.
• They forget to make mortgage or rent payments and suddenly find themselves in danger of foreclosure or eviction.
• They forget to pay the power bill or the phone bill and have their service cut off.
• They sell assets for a fraction of their true value. They may decide to give away their car just because someone asks.
• They take valuables like jewelry, which they had wanted to leave to relatives, and give them away to strangers.
• They relinquish their ability to make financial decisions by signing over power of attorney to a friend or a relative who wants to take advantage of them.
Granted, even people with normal brain function can fall victim to swindles. If the elder in your life is suffering from depression or grief over the loss of a loved one, is isolated or abuses alcohol or drugs, he or she is even more at risk. If your relative complains about money being missing or has signed confusing forms (such as a reverse mortgage) or can’t find a treasured possession like a wedding ring or has suddenly arranged to have mail delivered to a different address—consider those red flags. Don’t delay. Take action.
From Riches to Rags
Ronald was a successful doctor who retired in his midsixties, a wealthy man. Widowed in his seventies, he lived for five years with his son and his family, then moved across the country to be near one of his brothers.
Once there, Ronald hires a housekeeper who cooks his meals and cleans his house for the next ten years. Most of his family members live far away. Only his brother is nearby. Ronald has always managed his affairs and remains fiercely independent. So the family doesn’t pay close attention.
As time goes on and Ronald becomes frail, the housekeeper gradually becomes his main connection to the outside world. Then he has a fall and is hospitalized. That’s when his grandson gets a phone call.
The social worker tells the grandson, who lives on the opposite coast, that she doesn’t think it’s safe for Ronald to go home. The grandson flies across the country to find that his once well-to-do grandfather is nearly penniless.
After weeks of digging through records and organizing papers, the grandson pieces together what happened. His grandfather had given his ATM card to the housekeeper. The housekeeper had been withdrawing $300 to $400 every day for nearly a decade. The withdrawals far exceed her grandfather’s living expenses. The housekeeper has also convinced her employer to trade his new Cadillac for her broken-down Honda, which now sits in the driveway of his home.
The grandson takes this evidence to the police. Yes, they tell him after looking over the paperwork, they believe the old man has been financially abused. Proving it, however, is another matter. It would be difficult to show that the withdrawals hadn’t been made at his grandfather’s request. Didn’t he like to play the horses when he was younger? The housekeeper could just say she was withdrawing the money so he could gamble with it. Since his grandfather now suffers from dementia, there is no reliable way to ask him what happened. There is no case.
The older man is broke and not able to care for himself, so the grandson takes his grandfather to live with him. The family never sees the housekeeper again.
The lesson here is that, early on, the elder may look and sound completely fine, while having lost his or her “risk assessment” skills. It’s imperative that you have conversations about finances with your loved ones early and regularly. If you suspect that your loved one has lost the capacity for making sound financial decisions, you will want to take action before it is too late.
In many cases, this loss in judgment can be picked up in neuropsychological testing. However, occasionally, the test isn’t sensitive enough to pick up the loss of risk assessment correlated to damage near the temple at the front of the brain known as the temporal section of the frontal lobe. In this case, the Iowa Gambling Task can identify those who have lost their risk assessment ability but nothing else. The elder has lost the capacity for financial decisions if he or she can’t assess risk.
The Price of Inaction: Physical Abuse
People with early-onset dementia are also far more likely to suffer physical abuse. Family members have to be on the lookout for this problem because the elders usually are in no state to explain or to set off the alarm. If they’re in the early stages of the disease, they may not want to draw attention to their deficits, or they may fear being put away in a nursing home (as abusers often suggest). People with dementia may lack the organizational, motor, or verbal skills to draw attention to the fact that they’re being mistreated. If you can’t remember how to find out who might help, or even how to use a phone book, or what a public agency is or does, how can you alert the authorities? If you’re having trouble forming sentences or remembering what happened yesterday, how can you tell a neighbor or a relative that you’re being treated badly? If simple physical tasks, like opening doors, are getting difficult, how can you run away? Would you even know where to go?
At the same time that they may not be able to ask for help, elders with dementia are much more likely to do exasperating things that, over time, may drive even a loving caregiver to abusive behavior. Dementia tends to go hand in hand with behavioral problems: pacing, searching, repetitive questions, anger, confusion, paranoia, or extreme demands for attention. Caregivers or even relatives who don’t understand the roots of this behavior may lose patience and lash out. They may not be aware that their actions may contribute to the patient’s disturbing behavior.
Hard and fast numbers are difficult to come by. A study in the journal Clinics in Geriatric Medicine found a link between dementia and elder abuse. Also, about one in four elders in the general population are at risk of physical abuse, according to a review of forty-nine studies published in the journal Age and Ageing. Victims of elder abuse are three times more likely to die at an earlier age than those who aren’t abused, according to the National Committee for the Prevention of Elder Abuse.
Abuse Develops One Step at a Time
Agnes married her high school sweetheart, Matthew. They had a generally happy marriage. As they aged, she promised never to put him “in one of those places.”
But when Matthew developed progressive dementia, life got very hard for the couple. Matthew could no longer bathe himself; he walked unsteadily; he forgot to eat. He had delusions. He was often paranoid, especially toward the end of the day. Caring for Matthew became a trial.
Perhaps without realizing it, Agnes lost her patience. Now, she complains that she has to yell at her husband to get him to do things. When she helps him, she is often rough. She refuses to be realistic about what Matthew can do. She begins to discount his complaints. She doesn’t do anything about the fact that he’s lost fifteen pounds in three months. When he complains his arm is sore, she neglects to take him to the doctor. In the end, it turns out he has broken the arm in a fall.
Jane has asked her friend, Sue, not her son Tom to be her durable power of attorney (DPOA) and make decisions for her when she cannot for medical or financial issues. Jane has given him one of her three houses already. However, when she developed dementia and could not care for herself, and Sue was away for a month on business, Tom takes his mother to a lawyer and has her change the paperwork to give him durable power of attorney, and promptly cuts down caregiver hours and takes ownership of the other houses.
The son doesn’t act responsibly at all. He leaves Jane alone in the house for hours on end. She loses even more weight. Because no one is making sure that her body is repositioned regularly in bed, Jane develops pressure sores. Finally, she passes out and is taken to the hospital. Doctors there find her thin, unwashed, covered in sores, and dehydrated.
The hospital calls Adult Protective Services. The agency investigates the son for elder abuse. Jane gets discharged to a nursing home.
Did Agnes and Tom set out to handle things so badly? Agnes probably not. Yet—mistake by mistake—her actions veered into abusive territory. Tom knew what he was doing and took advantage of his mother’s vulnerability, when the DPOA was away.
Many family members are surprised to learn that abuse may come in the form of simple neglect. Often, families struggle to take care of a failing relative at home. They may not understand the physical needs of someone confined to a wheelchair or to a bed. They may not know that a person who doesn’t change position every two hours can suffer bedsores. They may not see that bedsores can lead to dangerous infections and an early death.
The Price of Inaction: Emotional Abuse
Every family has problems of one sort or another. Every family has dynamics that, in a perfect world, could be improved. But as an elder’s abilities begin to fade, some of these relationships and interactions can gradually turn abusive. This is one reason why studies have shown that 90 percent of elder abuse comes at the hands of family members. Here are two such patient stories.
When Keeping a Promise Isn’t Necessarily Best
I receive a call from the family of Clara, an eighty-five-year-old woman. She and her husband, Edgar, have been married for forty-six years. He sees it as his duty to care for her and not to “put her away.”
Yet the husband clearly can’t handle this obligation. He feels overwhelmed. Gradually, Edgar has become emotionally abusive. He yells at Clara for small mistakes like spilling a drink or soiling herself. She didn’t decide to spill or to wet herself. She does these things because her abilities are impaired.
I listen to Edgar’s story. He tells me of their whole life together. He explains the many sacrifices he’s made to keep his spouse at home. “I can see you want to do the best thing for her,” I tell him. “Many loving families,” I assure him, “simply can’t provide all the care that a frail elder with dementia needs.”
After a long talk, Edgar agrees to let Clara be taken to the dementia wing of their assisted-living facility. That defuses what had become an emotionally abusive situation. Edgar can see his wife every afternoon and hold her hand. Clara can get the care and interaction that she needs.
A lot of elder abuse isn’t really an event, but a process. It can just sneak up on a family. A situation often starts out mostly normal, then one thing changes. Then another. Gradually, what was once acceptable veers into the abnormal and abusive. Sometimes it’s the very incremental nature of the change that makes it so difficult for other family members to decide whether to intervene.
When Does Leaning on Mom Become Abuse?
Patricia, age eighty-one, had always defined her life by being a caretaker. She took care of her husband, Bob, who was disabled from multiple sclerosis (MS), until his death. She prided herself on caring for her three children. She took special care of her youngest child, Connie, who had mental problems and had trouble supporting herself.
The other two children weren’t sure when the dementia began. They kept asking each other, “Is Mom acting strange because she’s stressed about our Connie? Or is it something more?”
Patricia helped Connie plan her wedding. Patricia helped again when the marriage foundered after two years. After the divorce, Patricia helped when Connie started to have serious mood problems. When Connie attempted suicide, Patricia offered to let her move in with her, in an assisted-living community. Connie was supposed to stay two months, only until she could get back on her feet.
Nine months go by, and Connie is still living with her mother. One night, Patricia’s eldest child, Carl, gets a phone call from the assisted-living facility. Patricia is lying on the floor of her apartment. She refuses to come out if Connie is present. She’s afraid of her daughter, she says. Family and staff members arrive, and everyone calms down. Still, the other siblings are disturbed. Just who should be taking care of whom? Can their sister really still think it’s their frail mother’s duty to take care of her when she can barely take care of herself?
A week later, Patricia calls the facility manager. She says Connie has told her that she’s taken some pills, that she’s dying. It’s all playing out with maximum guilt and drama.
At the apartment, the manager finds the elder woman frightened and her daughter raving and incoherent. Bit by bit, the situation has become intolerable. Connie is transferred to a mental health ward. Patricia moves to the dementia unit of her facility.
The Price of Inaction: Sexual Abuse
While it’s not common, sexual abuse of elders does occur, mostly to women. It may not be clear-cut. Mom may complain that an orderly is trying to rape her when it turns out she was just having her wet underwear changed. But in other cases, abuse may be real. Don’t panic or become paranoid, but also don’t dismiss claims of sexual abuse out of hand.
Even for professionals, this is a challenging issue to evaluate. People with dementia often have delusions and make unfounded accusations. Perhaps the best way to guard against the possibility of sexual abuse is to do background checks and make sure that a vulnerable elder always has trusted supervision. Create a system of cross-checks to make sure that the patient-caregiver relationship doesn’t veer into inappropriate territory.
The Price of Inaction: Deadly Accidents
Our society is reluctant to take away a person’s car keys. In a country of subdivisions and far-flung suburbs, in a nation that enshrines personal freedom, losing permission to drive can seem like a death of sorts. It can spell social isolation, which in turn can lead to a host of other problems: withdrawal, substance abuse, depression, or neglected hygiene.
There is no denying that some elders pose a substantial risk when driving, according to the American Academy of Neurology. Yet several studies show that a considerable number of people with mild dementia—as many as three-quarters—can pass an on-the-road driving test.
There’s no equivalent of an on-the-spot “drunk driving test” for patients with dementia. Some people suggest using the “grandchild test.” If you don’t think your loved one drives safely enough to be trusted in the car with your children, then you should take the keys away before that person can harm someone else’s kids.
Studies have found that the assessment of caregivers is usually the most accurate predictor of trouble. If you think your loved one’s driving is unsafe, don’t back down. Make sure he or she has a driving test with your state’s motor vehicles department or a driving coach. If the elder drives into a school bus, the consequences will be severe—physically, emotionally, and financially.
A Near Miss
Rusty, a retired airline pilot, had always prided himself on his independence—and his classic Jaguar sports car. But as he reached his late seventies, his eyesight and depth perception began to fail. Family members started to notice dings and scratches accumulating all over the car. He explained them away with a shrug.
“A lot of people seem to be bumping into me lately,” Rusty said.
One evening, he met an old friend downtown for dinner. Driving home, at dusk, he hit another car. Partly frightened and partly in denial about the fender bender, Rusty didn’t pull over to exchange information with the other driver. Rather than stop, he kept going home. Furious, the man driving the other car followed him several miles to his house. When Rusty got home, he barely slowed to activate the remote control to raise the garage door and drove straight inside. The man knocked and rang the doorbell. Rusty refused to answer the door.
Eventually, the other motorist called the police. Rusty refused to acknowledge the accident. The incident eventually found its way into small claims court. The matter dragged on until Rusty’s dementia was diagnosed and a fiduciary, hired to handle his affairs, paid for the damage to the man’s car.
Luckily, the experience so frightened Rusty that he didn’t drive again. If he had, the damage could have been much, much worse.
The risk of accidents doesn’t stop when elders get off the road. Simple household conveniences can become dangers. Seniors whose abilities are faltering are more likely to forget that appliances like space heaters have been left on or to neglect something simmering on the stove. Pots neglected over an open flame are one of the most common causes of fire in the homes of elders. At this stage, it’s not safe for your loved one to live alone.
The Price of Inaction: Health Setbacks
One of the classic signs of early dementia is that patients start to neglect their hygiene. They may forget to bathe or to brush their teeth. They forget doctor and dentist appointments. They may lose track of their medications, taking them irregularly or not at all.
Forgetting something like a blood-pressure pill can have life-threatening consequences, such as increasing the risk of a stroke. Left unbrushed, teeth can decay, and that decay, left untreated, can turn into a dangerous abscess. Most people don’t realize that dental infections can even be fatal. In rare cases, they can spread to the brain. Elders with tooth pain may avoid eating. Thinner and weaker, they can become too frail to survive the next hospitalization. Poor hygiene increases the risk of problems of all sorts and severities: skin ulcers, gum disease, yeast infections, festering wounds, and fungal infestations of the skin, fingernails, and toenails.
Delayed treatment also is associated with irreversible declines in day-to-day abilities. The earlier treatment begins, the more seniors can preserve what function they do have. While there is no cure for dementia, several interventions can slow the disease. Physical and social activities can fight the decline. Early diagnosis also makes it more likely that a medical team can find solutions to the complex lifestyle and behavior problems created by dementia.