I was standing in the airport recently, leaning on my carry-on and waiting for my flight when I heard a scream in the background. In the post - 9-11 era one might be quite alarmed to hear a woman screaming in the airport. But in this case I knew immediately that there was no matter of national security at hand. Sadly, the scream came from an elderly woman suffering from dementia whose family was trying to coax her onto the flight next to the gate I was waiting at. What began as a simple discussion between the woman and her three daughters escalated into cajoling, pleading, raised voices, and then an ultimatum. In response the woman screamed "No - I won't go!", completely unaware of why she was at the airport and what strange destination her children had in mind. I could not discern from the conversation whether there was paranoid ideation or simple lack of understanding driving her resistance, but either way this woman was not budging from her seat. The entire plane was loaded and waiting for her to get on board. Persuasive words from a kindly desk agent and then a flight attendant did not help. Finally, in desperation, two of her daughters grabbed the woman beneath her arms and walked her up to the boarding ramp. Just as they reached the threshold of the gate she sank to her knees screaming, but only momentarily before she was bodily picked up and dragged on board. It was unpleasant to watch and certainly a bad idea. I worried about how she would behave once on board. Although the daughters' frustration was understandable, their zeal to transport their mother could have been considered a form of elder abuse.
This situation repeats itself in hundreds of ways every single day with caregivers of individuals with dementia. Such individuals often refuse to do lots of things, ranging from going to appointments, getting dressed, being bathed, taking medications, and staying in safe areas. And when dementia disrupts normal bodily rhythms and sensations, individuals may even resist sleeping, eating and using the toilet. Unfortunately, the solution sometimes becomes one of bodily force. For example, a daughter recently reported to me that staff at the nursing home where her mother resided put her mother in a confined chair and forced food into her mouth after she refused to eat for several days. One caregiver was so frustrated with his wife when she soiled her pants and refused to be changed that he punched her in the face to force her submission. These examples represent unacceptable abuse. In many similar circumstances, however, these caregivers are not normally abusive, antisocial or even mean-spirited people. But truth be told, caregiving for an individual with dementia and associated behavioral problems can be an extreme stress. But there are practical approaches to reduce stress and improve caregiving.
So let me turn back the clock and imagine that I could have counseled the family from the airport before they decided to take the trip. What would I have advised them? Here are several general guidelines for dealing with resistant behaviors in the setting of dementia:
#1 - Take Your Own Pulse
#1 - Take Your Own Pulse. I learned this in medical school as the first step when called to an emergency. Take note of your own level of nervousness, fear, anger or frustration. The greater it is, the less clearly you will think and act. Caregivers need to know their own emotional limits and take a step back and get help when they cannot cope with a situation or find a solution in the moment. The daughters at the airport became so angry that they lost common sense.
#2 - Plan Ahead. Individuals with dementia have real limitations. Get to know them and don't push the boundaries. If someone cannot understand why they are traveling on a plane, don't take them on one! If someone has a tendency to scream and cry when they get confused or frustrated, don't bring them to a crowded restaurant or movie theater. Make plans based on what the person is able to handle. The daughters at the airport were so focused on the destination and forgot about their mother's likely cognitive and physical limitations to even board an airplane. Clearly their mother was in no shape to travel. Perhaps some medication to calm her and an available wheelchair would have been helpful if the trip was a necessity. I often witness caregivers with the best of intentions making plans based on their own needs and not on those of the impaired individual.
#3 - Get to Know the Disease: Every form of dementia has different stages and patterns of cognitive and functional impairment. It's critical to know what the person can and cannot do. Someone who is disoriented will have trouble in new surroundings. Someone with language impairment will have difficulty at social events. Someone with paranoid thinking will have difficulty when leaving their own environment without understanding where they are going and for what purpose. Structured environments in nursing homes and assisted living facilities are designed to cater to these limited capabilities. There are innumerable activities that can bring a sense of enjoyment, meaning and distraction to individuals with dementia. Consult with a specialist to help generate a list of appropriate activities and then find ways to best implement them.
#4 - Behavioral and Pharmacologic Strategies Can Make All the Difference. There are simple behavioral approaches that can overcome or circumvent resistant behaviors without resorting to force. These strategies take time to learn and they vary based on the individual, but often require input from geriatric specialists or other caregivers who have been down the same road. This is the power of memory centers, the Alzheimer Association, support groups and other caregiving resources. Medications, when used judiciously, can also turn the tide, bringing improved moods, calmer behaviors, and less anxiety and paranoia without causing excess sedation or side effects. But it takes time and trial and error working in partnership with a geriatric psychiatrist or other specialist to achieve.
The road, of course, may be quite bumpy. Dementia is one of the most heartbreaking and challenging ailments in late life, and its numbers are increasing by the day. But there are many dedicated specialists and countless resources in the community to help. Encourage caregivers to reach out to them before becoming overwhelmed.