In the summer of 2012 my father-in-law telephoned one night with some surprising news: His wife of 55 years suddenly did not recognize him. She had recently been diagnosed with very early-stage dementia, but her symptoms had not yet been this severe. Over the phone, my wife and I eventually convinced my mother-in-law of the truth: Her husband was not an impostor.
As a geriatric psychiatrist, I understood the devastating toll dementia could take on an entire family. I had urged my mother-in-law to seek care early, which she had done, so she knew her options included activities to stay socially engaged, medication to slow the illness and possibly experimental treatment. But on a personal level, I was worried about my father-in-law, my wife, her siblings and myself. We would be my mother-in-law’s caregivers for the rest of her life. She was 76; my father-in-law was 79.
Over the next few months, my mother-in-law’s most difficult symptoms briefly appeared and then disappeared. Eventually my father-in-law discouraged her from driving and cooking, so she wouldn’t accidentally hurt herself. She knew she had dementia and agreed to meet with a nurse care manager and a psychiatrist. She was even pleased to have her children visiting more often to help out. But she also had episodes where she’d feel persecuted and frightened. She would get angry.
One day she turned to me, hostile in a way she’d never been, and told me: “You’ve changed, and I’m very disappointed. It’s time for you to leave.” I told her I would go after I said goodbye to the rest of the family. A few minutes later, she’d forgotten about it and was happy to have me stay.
This went on for weeks. We brought in more clinicians and started her on new medications. But one morning my mother-in-law was struck with severe terror. Believing her husband to be an intruder, she ran from the house to the house of a neighbor, who did not understand the situation and called the police. The neighbor telephoned us, and we called the nurse care manager, who happened to be planning a visit to their home that morning. The officer and the nurse arrived at the same time. My wife and I took turns talking on the phone with my father-in-law, the officer and the nurse. The police officer decided my mother-in-law should be taken to a hospital, so my wife canceled her day’s plans and we set off in her car from our home in Rhode Island to theirs in New Jersey.
The nurse accompanied my mother-in-law to the emergency room, where she was given tests to determine if any new medical issue might be the cause of her distress. Nothing abnormal was found. It also became clear that my mother-in-law did not remember the morning’s events. She was surprised to hear about it; it even seemed funny to her. When my father-in-law arrived at the ER, she was very happy to see him.
At this point our family was forced to face what we’d been wrestling with for months: Hospitalizing my mother-in-law seemed like the next step. She understood. “I have a memory problem,” she said. “I’m going to get help.”
My mother-in-law’s move to a hospital felt to me like a failure — an event that could have been avoided, perhaps, if we had put more services in place earlier, or moved her and my father-in-law in with us, or selected the right medication, or not selected the wrong medication. I was torn between my belief, as a psychiatrist, that her symptoms were not so severe and my belief, as a son-in-law, that our family could not handle any more stress.
My mother-in-law was more confused in the hospital than she had been at home. She started on a ward with psychiatric patients of all ages, then was transferred to a smaller unit of mostly dementia or schizophrenia patients.
She had no problems recognizing her husband. She relished his visits. They would sit side by side, holding hands, while she confided in him her worries about what was happening around her, telling him she loved him. It seemed as if they were sitting on the porch together again.
A change in her medications appeared to be helping. Medication treatment for dementia is complicated, at best. With no drugs approved specifically for the symptoms of dementia, medications for other conditions, such as depression or schizophrenia, are used off-label, with frequent side effects such as restlessness and sedation. We had tried several before finding something that seemed to help, at least a little.
After a couple of weeks, the family began to worry that hospitalization had only temporarily solved the problem and wondered what we’d do when she came back home. She’d need someone around to guide her, and the job was too much for my father-in-law alone. Our family arranged a call to discuss what would come next for my mother-in-law, sparing my father-in-law from making the tough decisions on his own. We decided for my mother-in-law’s sake to move her to a “memory care” assisted living setting. This left my father-in-law at home alone for the first time in his life. At this point, I wasn’t sure which of my wife’s parents worried me more.
At the hospital where I care for patients with dementia, I watch these kinds of difficult decisions all the time. But in that moment, being on the inside, it became clear that treatment for the patient with dementia is just one facet of good care. Dementia also takes a toll on the family caregivers.
There are treatments and practices available that could help patients with dementia and their caregivers, including support programs that aim to keep families together at home and to reduce caregivers’ burden and depression. Sadly, access to family-based solutions remains limited.
For the patient, dementia is a terminal illness. For the caregiver, it shouldn’t be.
Caregiving for a person with dementia is a risk factor for homicide and suicide, studies show. Family caregivers’ rate of depression is two to three times that of other people — another risk factor for suicide.
A recent Alzheimer’s Association report estimated that more than 15 million Americans are providing unpaid care to a loved one with dementia. In 2011 President Obama signed into law the National Alzheimer’s Project Act, which led to the publication of the first National Plan to Address Alzheimer’s Disease. This plan proposes to develop effective treatments for Alzheimer’s by 2025, enhance care quality and efficiency, and expand supports for people affected and their caregivers. But the road to reach these goals is long.
A short-term plan is needed, with more attention to families. We need care for the caregivers to be integrated into care for the patients. When my mother-in-law was in the hospital, I was disappointed (but not surprised) that nobody stopped to ask my wife, or anyone in the family: “How are you doing?”
Evidence shows that support programs prevent depression in family caregivers and extend the time a person with dementia is able to live at home. Yet services such as these are still hard to find.
Under the Affordable Care Act, screening for cognitive impairment will be included in annual wellness visits covered by Medicare with no co-pay. As we improve the detection of cognitive impairment, there will be an increased need to assess family caregivers’ functioning and to link caregivers and patients to regional centers for family education and resources.
I wish we’d had such a regional center in New Jersey when my mother-in-law became ill. Instead, we brought her to Rhode Island to meet clinicians I know. We paid out of pocket for a private nurse coordinator service in New Jersey. We were lucky to be able to find and afford these resources; most families can’t.
Legislation pending in Congress would help make the services we sought, such as care planning, more readily available and focused on the time of initial diagnosis. This is an important first step, and similar services for family caregivers are needed when dementia patients are hospitalized or begin residential long-term care.
A major barrier to improvements in dementia care, including help for caregivers, is a limited workforce. It is expected that in 2030 there will be only one geriatric psychiatrist for every 6,000 older adults with a mental health or substance abuse issue.
Moving my mother-in-law to assisted living made my father-in-law worse. After decades of companionship, he now was alone. Each day included a burdensome drive to visit his wife. He became depressed. We helped my father-in-law look at every option for how he could adjust his life to adapt to my mother-in-law’s gradual decline, but nothing, at that time, could soothe the distress he felt with losing his wife in his daily life.
After a few months, he chose to move to an apartment in the same facility as her dementia care unit. We expected this would be temporary, but he liked it and decided to stay so he could be closer to his wife.
Now he can see her every day, like it’s always been. When he takes her “out to dinner” in the main dining hall, or when they visit together in her room, he has trouble understanding everything she talks about. But, he says, “she seems to enjoy it . . . and she keeps telling me she loves me.”
This story was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at www.healthaffairs.org/NM.php. Epstein-Lubow is an assistant professor of psychiatry and human behavior at the Alpert Medical School of Brown University and assistant unit chief, geriatrics, at Butler Hospital in Providence, R.I. Follow him here: @GEpsteinLubow.