Article by Matt Gannon
Life is fundamentally about relationships and our connections to others. Humans operate to gain and maintain control (in varying degrees) within relationships: to ourselves, with others, to our environment, spiritually, and to our place in the larger world around us. This is like a balancing act we operate throughout our lives.
We ascribe meaning and purpose to the different relationships. Many relationships will shift and change over time, while others remain relatively the same. Within our relationships we have choices and we maintain control of our time, effort, participation level and, the interests being served - all of which shape who we are, our characters, and our identities.
The Dementia Experience
Dementia is progressive. Over time dementia demands a different type of communication to find and keep positive connections in relationships. Dementia creates a loss. For the people living with dementia, there is a progressive loss in abilities and independence.
When we attempt to understand the dementia experience, what can become more understood is how a person living with dementia is losing a sense of control in their lives.
One thing I have come to know well in my time of caring for people living with dementia is how life for them tends to become less about content and detail - and more about feelings. I also know people living with dementia do not lose their ability to feel, understand and recognize the emotion they are having when feeling it. They may not be able to understand and express fully why they are feeling what they are, but the feeling itself is familiar.
Emotional memories are very deep-rooted memories and are still often more accessible and familiar (especially when utilizing the senses). The emotional experiences of a person living with dementia can be broken down into two categories: positive & negative. They may be feeling one way or another, or a combination of both at times, but how they are feeling and what they are feeling matters when it comes to providing care.
Over time dementia demands a different type of communication to find and keep positive connections in relationships.
What is Person-Centered Language?
When providing person-centered care and communicating with a person living with dementia, it is important to do all we can as providers so the person ultimately feels more of a sense of control - this becomes our goal in each moment. It starts with an acknowledgment and validation to the moment you share, and to what emotion you sense is being felt. This can be done by communicating with feelings, both verbally and non-verbally.
What is person-centered language and why is it important when caring for people who are living with dementia? It is about respecting the individual in our care approach at all times. Once we know the person we are caring for, we can plan and deliver care to them based on our knowledge of who they are as a unique person who also happens to be living with dementia.
As you read the phrases below, ask yourself how does it feel to switch from one phase to another?
I have a dementia resident.......
When we move to using person-centered terms, our approach, attitude, tone, body language, and empathy can change. It will benefit both us and the person living with dementia because what we do and say can have a significant effect on how they are feeling. If we carry the right mindset, the right attitude, and the right outlook then we are ready in our right care approach.
Less is often more when choosing the words we say as we communicate to a person living with dementia. Show more, talk less is generally a good formula.
We pursue short, brief, and repeated words and sentences as many times as necessary. We strive to create words together that become familiar between us and familiar to whatever activity we may be doing within our routines, we can identify the words and use them repeatedly as they become mutually understood. We can look to use words the person living with dementia tends to use or respond best to, or phrases that mean something to them. It is up to us to learn what those important words and phrases are, and when we do, to share those words with anyone else who provides care to that person.
When we move to using person-centered terms, our approach, attitude, tone, body language, and empathy can change.
Insert positively-charged words into statements, such as “ah, that’s a good thing, that’s a good one isn’t it, I like that, I love that, that feels good, doesn’t that feel good? that looks good, and thank you”. A positive way of communication can be to offer suggestions over telling or directing what one needs to do.
When assisting a person in any way, from pushing their chair in for them to buckling their seat belt, or helping to get a jacket sleeve on, it is important to seek their sense of satisfaction or approval before moving on to the next thing/task. This can be done by simply asking, “Ok then? Are you happy with that? Does that feel good? Is that a good one?” Or even doing the thumbs-up gesture and awaiting their response before moving on, as this communicates respect and how you see them and care enough to ensure they are satisfied with what you’ve done to assist, before another task or agenda takes over. This is person-centered language.
Why is this important?
How much or how little we know about a person we are caring for makes a big difference. A person living with dementia is still the “person” they have always been and in many ways will continue to be. But they are also changing and different in some ways now. What they need from us the most is to SEE them for who they are and to know what makes them unique. By doing this we are reaching the center of a person and can care for them in a way that charts their personal care course - providing a feeling of control, not taking more away.
Person-centered language is part of how we communicate to people living with dementia who depend on us to understand, and to be able to connect in the most respectful ways possible. Respect matters in all of our relationships, but for the person who is living with progressive dementia that is affecting their brain, we must ensure our approach and the language of our care is received in the way our residents living with dementia require - to have the strongest relationships we possibly can.
What they need from us the most is to SEE them for who they are and to know what makes them unique. By doing this we are reaching the center of a person...
Article by Alyssa Elting McGuire, MA, MPA
Several years ago, I read an alert in the local paper I had seen many times over. Miriam*, who was 87, had wandered from her adult care home the previous day. She had fairly advanced Alzheimer’s disease. Though her memory and judgement were both strongly affected, she was physically able to maneuver with little issue, as is often the case with individuals who have Alzheimer’s disease. My stomach sank, though, as I continued reading. Miriam was still missing.
I kept an eye out for updates, but unfortunately there was no positive outcome in this case. The news updated the story soon after local law enforcement found Miriam deceased, not far from her care home.
This story highlights an extreme outcome of wandering and elopement, as most cases end with the resident safely back at home. Still, this story reinforces the importance of not becoming complacent. This situation could have happened to any care home provider. It’s an unfortunate story that illustrates the importance of managing wandering and preventing elopement in adult care homes.
Wandering vs. Elopement
The terms wandering and elopement are often used interchangeably; however, they are not exactly the same. Wandering is pacing or aimless walking. This generally takes place inside the home or facility, though it can also take place outside. These are the individuals you see who pace up and down the hallway, seemingly without direction.
Elopement, on the other hand, is the unplanned exiting of the home or facility. It commonly includes “exit-seeking behavior.” This exit-seeking behavior and elopement from the home puts residents at great risk of harm.
According to the Alzheimer’s Association, 60% of people living with dementia will wander at least once.
Who is at Risk?
According to the Alzheimer’s Association, 60% of people living with dementia will wander at least once. Individuals who have some form of dementia are at greatest risk, especially individuals who are in the middle stage of Alzheimer’s disease. Additionally, residents with cognitive limitations who recently moved to your home are at increased risk. Those who have a history of wandering or exit-seeking behavior are at great risk.
Assessing for Elopement Risk
What can you do to recognize and reduce the risk of elopement? Your screening process is the first step. It is important to conduct a thorough screening to find out if your potential resident is at risk for elopement. During your screening interviews, ask if the individual has ever displayed exit-seeking behavior or wandered outside the home or facility. Additionally, if the individual is currently in a facility, review their narratives, care plan, and any incident reports to find out if there is a concern about wandering and/or elopement.
Also consider using an elopement risk assessment tool, either during screening or after the resident has moved to the care home when their condition has changed.
It is important to understand, even if you’ve conducted a thorough screening, or the resident has no prior history of wandering or elopement, they could still elope from your home after admission.
Tips for Keeping Residents Safe
How do you keep residents with wandering or exit-seeking behaviors safe? Below are several tips and evidence-informed interventions for keeping residents safe. This is not an exhaustive list, as each resident’s needs and situation are unique, but it is a place to start.
Sometimes you can do everything within your power to keep residents safe, and things will still happen. It is important, then, to recognize the point at which an adult care home may no longer be the safest placement for a resident with exit-seeking behavior.
Fortunately, what happened to Miriam is a rare outcome in situations when a resident elopes from the home. In most cases, with awareness, prevention, and intervention, you can keep residents who wander safe.
*name and details have been changed
About the Author
Alyssa is founder, principal consultant and training specialist with Oregon Care Home Consulting. She has spent the majority of her career providing program service delivery, regulatory leadership, training development, and program coordination and management in government and not-for-profit organizations. She is passionate about helping current and future adult care home providers in Oregon successfully navigate the licensing process and provide quality care to seniors.