Benedictine: Flipping the Narrative on Dementia Care

What words come to mind when you think of dementia or Alzheimer’s Disease? Often people answer with words like “confused,” “agitated,” “lost” or the person “wanders.” Many of the words used to describe someone living with dementia are inherently negative. Not because caregivers, families or medical practitioners think of them in a negative light, but because that has been the terminology used for many years to describe symptoms that are negatively impacting the quality of life of those diagnosed. Well, it is time to flip that narrative to a more positive tone.

During the past several months, Benedictine has focused on training its therapists to do just that with CPI’s Dementia Capable Care, the gold standard in dementia care education. After eight hours of intensive training, hands-on activities and an exam, each therapist earns the title of certified dementia care specialist. So far, Benedictine has trained almost 200 therapists! That is 1,600 hours of new dementia knowledge and expertise Benedictine Living Communities can now share with residents, outpatient therapy and home health clients, caregivers and families across the Benedictine system!

Benedictine’s certified dementia care specialists re-frame the symptoms of people living with dementia so they can serve them more effectively. For example, how do caregivers look at things like “wandering” positively? The person can walk! They are mobile and strong! They are purposeful. They are going somewhere, but just not sure where. How do caregivers take the skill of mobility and incorporate it into the resident’s day, into a purposeful activity that brings them joy? Learning about each person’s life and what made them happy in their youth is an important first step.

What about agitation? This is a bit more difficult to flip to a positive. What does a person do when they are trying to communicate their wants or needs to someone yet they feel they are not being heard? After several attempts, anyone may get agitated. A parent may give their child a stern talking to when they are told (for the tenth time) to clean their room. Or it may be the customer service person that has called a dozen times not understanding that an extended warranty is not desired on the car. Imagine how that may feel if that situation occurred all day long?

A person experiencing dementia symptoms is frequently communicating their wants and needs, and may become frustrated when others don’t understand. Agitation is not simply a symptom of dementia, it is more about the individual trying to communicate to caregivers and loved ones, but not feeling heard. So, how do caregivers figure out what they are trying to communicate? By recognizing their current skills, knowing their life story, and taking a deep dive into how they are communicating, caregivers can gather helpful clues to piece together what the resident is seeking and respond appropriately.

It is a new way of thinking, a new way of providing care, and a new and better way to provide higher quality of life to all who are served at Benedictine.

What is Your Life Story?

Dementia Capable Care training begins by asking the participants, “What is important to you, something you do almost every day that brings you joy, and you would miss if you lost it?” Answers vary from enjoying the outdoors to playing with children/grandchildren to crafting/woodworking.

Next, participants are asked to imagine that they have received a diagnosis of dementia or Alzheimer’s Disease and will be relying on others to help them in those activities or that they lose the ability to enjoy those tasks forever. The room is generally pretty quiet in response. It raises the questions – do our loved ones even know what is really important to us? Would they be able to tell new caregivers that we like honey and lemon in our tea or that we prefer not to play bingo?

Caregivers learning as much as possible about those in their care is essential to providing person-centered care. It is not simply asking, “What did you do for a living?” but learning the deep details of what brings them joy. It may be finding out what sports they played in high school, or what routines or activities they enjoyed in their younger years that have fallen off since their diagnosis.

The Long Goodbye

Nancy Reagan used the phrase, “It really is the long, long goodbye” to describe Alzheimer’s Disease in a 2002 60 Minutes interview about caring for her husband, former President Ronald Reagan.

Early in the dementia journey, caregivers often start dealing with their loved one’s decline by eliminating responsibilities by doing or hiring out tasks the person has done for many years. Often, it is taking the keys to their car. “Mom, I really don’t think you should drive anymore, I will take you to your appointments.” Then, “Mom, let’s get someone to help you with cleaning and laundry.” Next, “Mom, let’s get you Meals on Wheels, so you don’t have to cook anymore.”

As well-meaning as families are, each of these actions are slowly taking away what the individual values and makes them the person they have been. By the time dementia advances to the point where Benedictine therapists are seeing them as outpatients or in our communities, they have lost a big portion of what makes them whole. If caregivers are not able to replace those tasks with meaningful, purposeful activity that brings them joy, what quality of life do they have?

Occurring parallel to this, the role of the caregiver changes. When family members transition from being just a son or daughter to POA (power of attorney) or health care proxy, the relationship with the parent changes. In this transition, family says goodbye to the parent who once was relied on to provide care and support and now is dependent on others for care. These are not easy transitions.

What now?

How is the new information, approach and terminology being used to better the quality of life of those living in Benedictine communities?

Combining the skills of Benedictine therapists with Dementia Capable Care training allows Benedictine communities to effectively personalize services specifically to the cognitive and functional abilities of adults experiencing dementia. Benedictine caregivers are better able to communicate and guide residents in therapy sessions and better understand what they may be communicating. Not only does this improve therapy outcomes, it allows Benedictine to educate caregivers and families on how to extend successful results after therapy ends! By sharing this knowledge with the entire care team, Benedictine is able to support each individual’s ability to continue the activities that bring them joy, reduce agitation and stress, and improve quality of life for all involved.

by Kate Mettler, OT education specialist, certified dementia care specialist and educator