My elderly mother with dementia is not ‘uncooperative’

My mother, a 90-year-old with a ready smile, a great attitude, wonderful sense of humor and advanced dementia, was released from a leading Israeli hospital yesterday after a four-day stay. The many hours I spent by the side of her hospital bed have prompted me to record some of my observations about the experience and to make a case for much needed improvements.

To begin with, my mother received outstanding medical care. Unlike the situation in many western countries, in the modern state of Israel no expense or effort was spared in diagnosis or in treatment. My mother began her hospital stay in very ill health and left replenished and largely recovered, and for this I am grateful to the hospital, its doctors and nurses, and to the society I am privileged to live in: a society that makes no compromises in the solemn task of saving every human life.

Yet sadly, my mother’s experience was clouded by a recurring failure of many among the hospital’s professional personnel to understand, or to respond appropriately to, her dementia. The head nurses of two different shifts regularly addressed my mother with clipped instructions and demands, expecting her immediate compliance with instructions she did not understand. When faced with my mother’s non-compliance, the nurses called in aides who proceeded to pull, prod, and otherwise attempt to force her to cooperate. When my terrified mother screamed and resisted in response, they either pulled harder or gave up, leaving my mother’s overworked, sleep-deprived caretaker to do nearly all of their work for them, including bathing my mother, and moving her from bed to chair and back again. I tried to speak to several of the nurses about my mother’s particular needs; naively I thought that if I reminded them of the natural limitations of a person with dementia, they would behave more patiently and compassionately. Instead, I was berated again and again for my efforts, and was made to feel that both my mother and her family were a drain on the staff’s valuable time.

Our frustrations were compounded in some of our meetings with the hospital’s medical specialists, many of whom showed very little understanding of my mother’s dementia. When my barely ambulatory mother was taken to the hospital’s on-call ophthalmologist, he ordered her to sit in a backless chair—“quickly, quickly”—then to crane her neck forward and upward and fit her head and chin into the indented spaces of his machinery. When my mother hesitated and I scrambled to get her into the required position, he repeated his demand—to her, then to me– for her to hurry and cooperate. I turned to my mother, looked her squarely in the eye and slowly explained that this man was a doctor, who wanted to help her. Her part was to do her best to move into position so that he could better see into her eye. Finally understanding her surroundings and what was being asked, she did her best to comply. Ultimately, the doctor was able to get a partial reading of her eye. To explain his limited success, he recorded in her file: “patient was uncooperative”.

Today, as I look over my mother’s discharge papers, I note the persistent refrain of “patient was uncooperative”. As I read, I am saddened, both because this assessment of my mother in no way reflects her true motivations, and because the assessment blithely absolves the medical team of their missed opportunities to achieve better results. What follows is one daughter’s effort to promote a greater understanding of dementia, along with some suggestions for increasing cooperation—and as a result, improving overall medical care– for patients such as my mother.

Some basic truths:

Dementia is a medical condition. It is not a choice, nor is it a sign of ill will. It cannot be controlled by coaxing or threatening. Ordering an elderly person with dementia to “hurry up” or to “cooperate” is like demanding that a physically disabled person get up and run, and then, when the demand is not met with compliance, losing patience and labelling the person as uncooperative.

People with dementia are deeply confused about their surroundings; as a result, they feel helpless and anxious. In their desperate efforts to protect themselves from forces they cannot control, they are often hypersensitive to unexpected movements and touch. When an unknown person in an unfamiliar setting suddenly gets very close and starts encroaching, and even touching, anxiety is greatly exacerbated and a sense of danger flares. The elderly patient will then do what any terrified person would: the patient will shout and will fight with all her might to defend herself. If the aim of the health care professional is to garner patient cooperation, invasive tactics are doomed to produce the opposite results.

But what is there to do?

As we all know, medical and nursing staff are overworked and underpaid. We cannot expect them to do the work of social workers, eldercare specialists or hospital aides. What then? Here are some suggested steps that I believe would conserve precious time for hospital staff, while at the same time preserving the wellbeing and dignity of the patient.

Recognize the signs that strongly suggest a patient is suffering from dementia, and is thus completely helpless to navigate interactions with hospital staff. A caretaker who does not leave the patient’s side is often a clear indication of the mental limitations of the patient and of the patient’s total dependence on others.

Speak to family members. Ask them what their loved one needs in order to feel comfortable. What techniques and approaches are likely to elicit maximal cooperation? What are the best strategies to employ when the patient becomes anxious or physically resistant?

When communicating with the patient, look him/her directly in the eye and do your best to explain calmly, in simple sentences, who you are what you want. For example: “I am a nurse and I want to help you move out of bed and into that chair. It is important for you to get some exercise and for you avoid getting bed sores. Can you help me give you the help you need?”

When hospital staff is unable to elicit the patient’s cooperation, the note in the patient’s file should not label the patient as “uncooperative.” Instead, I suggest a more constructive kind of entry, such as: “Hospital staff was unable to communicate successfully with the patient. We recommend intervention by a social worker or other relevant professional to help us improve communication.”

I am told that medical schools and nursing schools offer some limited training in the proper care of patients with dementia. I would like to issue a plea for more extensive training, along with regular instructional and enrichment courses for existing hospital personnel, including specialists of all kinds. It is ironic that the population that is most likely to require hospitalization is one of the least studied and the least understood.

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There are roughly 200,000 elderly people suffering with dementia in Israel today, a number that approximates the total number of native English speakers living in this country. Imagine a scenario in which hospital personnel remain ignorant of the most basic lexicon needed for communicating with their English-speaking patients. Imagine a nurse or a doctor barking out orders in Hebrew to the uncomprehending patient, then lashing out at the patient and the patient’s family when their demands are not immediately met. One could argue that the onus of communication lies with the foreigner: English speakers should learn enough Hebrew to allow them to communicate with their surroundings. But by definition, the elderly with dementia are incapable of learning the language of the world around them; they depend completely on the running translations of others to make them feel safe and cared for.

It is virtually impossible for us to know what goes on in the mind of the patient with dementia. But in her wonderful book, Still Alice, Lisa Genova offers two valuable insights. One is the feeling of being “less and less human,” as language — “that thing that separates humans from animals” — is lost. The second is the sufferer’s increasing momentum toward living entirely in the immediate present. In Alice’s words: “My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment… I will forget today, but that doesn’t mean that today doesn’t matter.”

Do we not owe it to Alice, and the ever-increasing number of elderly patients like her, to learn their language, thereby restoring some of their sense of humanity? Is it not our responsibility to imbue their string of present moments with understanding and compassion, and with the dignity they so richly deserve?

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Judy Klitsner is a senior educator at the Pardes Institute of Jewish Studies. She lectures internationally on Bible-related topics and is the author of the award-winning book Subversive Sequels in the Bible: How Biblical Stories Mine and Undermine Each Other.