Recently, I received a rare clinical insight. A wake-up call. However, it was not in the treatment of a person.
Rather, it was in the care of our beloved rescue dog, Chloe. Chloe is 11, or as our kids like to say, “77 in people years”. Chloe has always been a handful, with a load of interesting behaviors she picked up before we adopted her, like barking incessantly at delivery trucks and dogs walking by the house. However, in her golden years, Chloe became suddenly more difficult. In particular, she snapped at my son several times when he went to pet her. She had never done this before, and it scared us.
I immediately called our vet and said “is there something you can give Chloe to make her more docile?”. My vet replied, “Hold on. I don’t know what is going on with Chloe yet. There is probably something physical underlying the behavior. We need to assess that first before jumping the gun on medications.”
My vet and I proceeded to discuss the context of Chloe’s behavior. It was revealed that in addition to her new lability, over a few months’ time, she had gained 15 pounds, her coat was coarse, and she was sluggish and amotivated (e.g. less likely to jump off the couch to bark at delivery trucks). A simple lab test later, we found that Chloe’s thyroid gland was underactive (hypothyroid) and she needed replacement hormone. After starting medication, Chloe’s new behaviors lifted and she returned to her prior weight, her coat became soft and glossy, and she happily returned to barking at trucks. It’s a nice story with a good ending for my dog and our family.
But, sadly, in 2015, this is not the care that most older adults with dementia receive.
Behavioral disturbances are incredibly common with dementia and other forms of cognitive impairment. They are found in almost 100% of people over the course of their illness. Like for my dog Chloe, challenging behaviors are in many cases a communication, demonstrating that there is something wrong for the person with dementia like hypothyroidism, an infection, an unmet need, or problem in the caregiving relationship.
But unlike for my dog Chloe, many elderly do NOT receive an assessment and management of underlying causes of behavioral disturbances. Instead of someone getting to the bottom of the problem, in most cases, older adults with dementia receive exactly what my vet avoided: a psychiatric medication like an antipsychotic (used to treat schizophrenia), antidepressant, anticonvulsant (used in bipolar disorder), or other sedative drug (like Ativan). Despite efforts by policymakers to reduce use of medications like antipsychotics in people with dementia, a recent study found that three-quarters of people with dementia in long-term care get at least one psychiatric medication, and half receive two or more different medications.
Why? I can tell you that this is not because doctors and staff are greedy or lazy. Indeed, I can assure you that no one goes into the care of people with dementia because they want to get rich or not work hard. The difference between the care Chloe received and what people get is simple. Vets like Chloe’s doctor are trained to interpret behavior because animals cannot speak for themselves. People with dementia often can’t tell us what’s wrong, so we need to learn how to “read” their behavior and use our brains to interpret what’s behind it. But, doctors, mostly primary care physicians, and staff who manage people with dementia are not trained or reimbursed to manage challenging behaviors in ways other than writing prescriptions.
We need a campaign to get the level of dementia care (and reimbursement) for challenging behaviors in people to at least to the level of what Chloe the dog received: 1) avoiding knee-jerk psychiatric medication prescribing while understanding that there are urgent situations (when people are in danger to self/others) where medications might be necessary; and 2) assessing and treating the underlying causes of such behaviors. We also need to train (and reimburse) front-line doctors, caregivers and staff to manage challenging behaviors with evidence-based non-medication strategies (e.g. using activities tailored to the interests of the person with dementia, enhancing communication, using structure). In many cases, these strategies work better than medications but take time. We owe people with dementia that time as opposed to merely sedating away their problems. Ideally, the standard of care for people should be superior to the standard of care for Chloe the dog.
When caregivers or staff ask us for psychiatric medication to treat behaviors, we need to remember my vet’s words: “Hold on. I don’t know what is going on yet. There is probably something underlying the behavior. We need to assess that first before jumping the gun on medications.”