Treating those with dementia as people, not patients

Though the number of people diagnosed with Alzheimer’s continues to rise dramatically, the training for those who care for them has not kept pace, according to Steve Sabat, PhD, professor emeritus of psychology at Georgetown University.

Sabat’s expertise is in studying the cognitive and social skills of people living with dementia, and he often shares his knowledge at caregiver workshops and lectures. He spoke Oct. 9 in Purcellville at the 2nd Annual Blue Ridge Dementia Care Conference. The event was sponsored by AARP Virginia.

Federal funds are largely directed at clinical trials to find a cure or medicines that will slow the progression of the disease, rather than training clinicians and caregivers in the best practices for caregiving. Sabat sees a need for more attention and funding aimed at teaching and reinforcing proper techniques to care for people with dementia.

According to the Alzheimer’s Association, about six million people of all ages in the United States have Alzheimer’s, a fatal and incurable brain disease. Two-thirds of Americans with the disease are women, and older Black Americans are 1.5 times more likely than other races to develop the disease.

In the next seven years, 1.2 million additional direct-care workers will be needed to care for the growing population of people living with dementia, which represents the largest worker gap in the United States, according to statistics from the Alzheimer’s Association.

“The biomedical approach is sadly dominant still. Medical doctors learn to see what’s wrong with people and that is, of course, for good reason. But there’s more to people then what is wrong with them,” Sabat said.

What’s often missing, he added, is the fundamental understanding that someone diagnosed with Alzheimer’s or other forms of dementia is still a person - not just a patient.

Some caregivers start thinking of the person they care for as a patient only and interact with them at that level. They often fail to recognize the person’s remaining abilities and traits, such as their self-respect, sense of humor, need to be helpful, and desire to avoid embarrassment.

They may answer questions for the person instead of allowing them to communicate, treating them like children, and speaking about their diagnosis or condition in front of them, assuming incorrectly that they won’t remember how they were treated.

In some cases, the person with dementia is unnecessarily relegated to a subservient position within the family home. Most of this treatment is well-meaning, but it greatly enhances the shame, embarrassment and anger of those with dementia and leads to stressful interactions with their caregivers.

“People diagnosed with Alzheimer’s disease retain awareness, thinking ability, and sense of self,” Sabat explained, “so the way we treat them can either help them or hinder them.”

An example of hindrance is looking at the person only through the lens of defect and pathology upon diagnosis. That leads to a doomsday attitude, with all the focus on inevitable future decline.

“During a caregiver’s education workshop, a woman came up to me and said, ‘Here’s my husband. He's the patient,’” Sabat said.

At an adult day center, Sabat was talking with a woman with Alzheimer’s, while her husband started tucking her turtleneck shirt into her pants. The next day the husband came back and said the Alzheimer’s was getting worse because his wife was angry with him for tucking in her shirt.

He saw the incident as a symptom of the “irrational hostility” of Alzheimer’s, instead of what it really was – anger that he had publicly embarrassed her. He thought he was being helpful.

Sabat recalled another instance in which a man diagnosed with Alzheimer’s was generally non-responsive to staff until one day, they started addressing him as “professor” because he had been a law school professor.

“Hello, Professor. Can I get a hug today?” one of the caregivers asked. Immediately, the man spoke up, engaging with the staff member.

“We need to interact with our loved ones rather than manage them,” Sabat said.

Retaining a high level of respect, regardless of age or diagnosis, is crucial and the most fundamental aspect of caregiving.

Sabat said the development of in-person and online training sessions for anyone caring for someone with dementia would go a long way to begin educating families and the public about what “care” should really look like and how it should be practiced.