Dementia is not just a nursing home issue. Nearly half of older adults in assisted living and other senior communities have some level of dementia or cognitive impairment, and this number is likely to grow as the population ages. Dementia is a diagnosis that often terrifies patients and families, but caregivers can learn new methods of support and communication so that residents with dementia receive personalized, effective care.
Those organizations and care professionals with the greatest success in providing dementia care are using innovative and person-centered approaches that focus on what the person has remaining, instead of what they have lost. They also are getting to know residents intimately using details about their lives, histories, feelings, and preferences to communicate and provide care in more effective and positive ways.
These Three Strategies
“There are three things I am seeing across settings,” said Cameo Rogers, corporate life enrichment manager at Immanuel in Omaha, Neb. First is ensuring environments are therapeutic, and that they provide support and tools that promote communication and the understanding that people living with dementia are navigating more than memory loss. Second is engagement and focusing on what is meaningful to the person based on the person's life, strengths, and preferences, and incorporating evidence-based practices, like music (e.g., social drumming and other efforts to use instruments to create rhythm and a sense of community).
She added, “I am also seeing more focus on creative expression and ways to communicate through various art forms—visual, performance, storytelling, etc. I am observing more investment in programming that supports brain health at different levels of dementia and innovative ways for people to have new experiences.
“Third is the growing use of technology,” Rogers said, adding, “I’ve seen virtual reality, touch-sensitive tech, smart homes, and supportive technology to provide reminders and increase safety and engagement.”
Focus on Can, Not Can’t
“We need to focus on what people still have versus what they’ve lost,” said Teepa Snow, dementia care specialist, occupational therapist, and founder of Positive Approach to Care®. “There often is an ability for people with dementia to function in many areas for quite a while. We need to quit drawing the line at either okay or not okay. We need to see people living with dementia as still having a sense of purpose, and we need to find out how they think and feel,” she said.
If you can learn about details such as past work experience or roles of value, you can learn a great deal about what gives people with dementia a sense of purpose and how they can use skills and abilities they still have to feel useful and productive.
It is important not to impose our own feelings and attitudes on residents, Snow stressed. For instance, she said, “we all approach risk differently. I don’t have the right to assume my approach to risk-taking is the right or only one. We can’t be so task focused that we don’t consider what the resident wants or what level of risk they are comfortable with.” She also noted that it is important to engage residents and observe how they engage with others.
Getting to know individuals and their skills, abilities, and interests is key to determining what approaches might be most effective and contribute to their quality of life. The Montessori method in dementia care supports improving the quality of life for all adults by promoting dignity, meaningful engagement, and independence. Anna Fisher, CADDCT/CDP/CMDCP/CDSGF/QCP, a clinician and educator in Nebraska, said, “We see individuals with dementia as having unique intrinsic value. We learn about each person, and then we introduce activities that reflect their value and foster feelings of self-worth, purpose, and joy.” She said this approach empowers and enables individuals to make decisions and choices.
Fisher said, “We focus on what these individuals can do, and we give them visual cues to help them succeed. The Montessori method is centered on respect and dignity, prepared environment, and activities involve guided repetition, task breakdown, and progressing from simple to complex. We engage their senses to rediscover the world around them.” While all this is being done, Fisher stressed, “we need to lean in to empathy. It’s important to be a good listener. We have to recognize that what they’re going through is true for them, so we must be willing to go there with them.”
The Communication Conundrum
“We need to do a better job of helping people understand how to communicate with people who have dementia. Arguing with them or telling them they’re wrong won’t be helpful. Instead, you need to be more open and positive in your response. These are skills caregivers and others need to have,” said Joanne Spetz, PhD, director of the Philip R. Lee Institute for Health Policy Studies and the University of California, San Francisco Health Workforce Research Center on Long-Term Care.
Living with dementia doesn’t mean residents don’t know if they’re being talked down to or dismissed. They may pick up cues from you and respond to your negative tone accordingly. As a result, instead of de-escalating a situation, you may increase their anger, frustration, fear, or agitation.
“Dementia doesn’t rob people of their ability to hear sound and tone. You shouldn’t say something to or around someone living with dementia that you wouldn’t say to anyone else,” said Snow.
Fisher agreed, observing, “People with dementia know how they’re being treated and when they’re being dismissed or talked down to, but they may not know how to convey that. We need to talk with them in ways that are respectful and promote their self-esteem and self-worth.”
Even if people get upset or agitated, it is important not to match their mood. Instead, suggested Snow, stay
curious. Don't argue with or correct someone living with dementia who insists on leaving the facility. Instead, consider asking something like, “Is there something you are needing to do, or are you just not wanting to be here anymore?”
Snow said, “Find out why the person wants to leave the facility. How long has it been since she was outside? Did they recently get a visit from someone who reminded them of their home or a special place outside of the facility?”
Just asking yes or no questions doesn’t yield real answers. For instance, if you ask someone if they want to go to lunch and they say no, you don’t get any useful information. Instead, consider asking something like, “It’s lunchtime. Would you like something cold or hot to eat?”
“It is important to give people choices and options,” Snow said. “If someone says they don’t want to go to lunch or that they want to leave the building and you don’t find out why, it can have a negative result.”
It is important to remember that people living with dementia are talking from their reality. Challenging that reality can do more harm than good. For example, if someone living with dementia misidentifies someone or talks about wanting to see someone who has passed away, correcting that person can cause anger, confusion, or agitation. If someone calls you Bob and your name is Phil, instead of making that person sad or mad, find a way to connect. At the same time, you don’t have to acknowledge the wrong name if it doesn’t matter.
“One thing we need to remember is that people with dementia are people first and foremost, and they are unique individuals. Those of us providing support to them need to think of them in their full personhood,” said Rogers. “I always suggest getting at eye level with the person and to watch their facial expressions, tone of voice, body language, and eye contact to assess their feelings and reactions.”
When it comes to words, she suggested, less may be more. “I am aware of how many words I use and the importance of pausing and giving the person time to process and respond.”
One communication challenge occurs when the person doesn’t respond as expected. Rogers said, “When I encounter a surprising reaction, I pause and take a breath, then I assess possible unmet needs, such as if they are in pain or cold or hungry.” She stressed, “It’s important to realize that some reaction may be surprising to me but make perfect sense to the individual with dementia based on the situation.”
In the end, she suggested, use your active listening skills, attempt to clarify your understanding of the issue at hand, and feed back to them what you heard them say. Then take a fresh look at the situation through the resident's eyes. “It’s about fewer labels and more questions,” she said.
Turn challenges into opportunities and recognize accomplishments, suggested Fisher. “Really focus on muscle memory, which involves consolidating a specific motor task into the memory through repetition,” she said. “When movement is repeated over time, the brain creates muscle memory and enables tasks to be performed with little conscious effort.”
Remember, suggested Rogers, that what worked yesterday might not work today. “Things change, people change. Situations ebb and flow. Constant reassessment is important. We need to be open to learning and doing different things,” she said.
The Stigmas Persist
Dementia is a terrible disease; however, many don’t understand how it progresses or impacts those who have it. “Dementia is a progression. It’s not like someone is doing great then suddenly can’t find their way home. The point at which someone is no longer safe alone is often unclear,” said Spetz.
It is essential not to assume that everyone understands dementia, even with a health care background. For instance, while many surveyors previously worked on the front lines in health care, their knowledge may be 20 years out of date. “They need to understand things like people with Lewy body dementia may be more prone to falls. We can address this by documenting what we do to prevent falls in these individuals, and we can take regular opportunities to educate surveyors about the latest innovations and best practices in dementia care,” said Snow.
Education about dementia is key, Rogers agreed. She said, “I am hearing about more focus on the importance of community dementia-related education for persons living with dementia, as well as for their families and friends. This may include information on how to recognize the early warning signs of cognitive impairments and how to be a supportive neighbor or companion to someone with dementia.” For instance, Dementia Friendly America (dfamerica.org) has a tool kit that community leaders and organizers can use to convene, engage, analyze, and act together to foster dementia friendliness.
“I love that we’re seeing organizations investing in training about dementia for first responders and churches looking at ways to be a place where people living with dementia and their care partners can come to do programming together,” said Rogers. In fact, there are multiple organizations providing innovative programs and tools. For instance, TimeSlips (timeslips.org) promotes creative engagement via storytelling and other efforts to bring meaning and purpose into the lives of older adults, especially those living with dementia, and people who care for them.
The reality is that anyone can develop some form of dementia, said Snow. “It’s not an ‘us versus them’ situation. We need to see this as a condition that can affect anyone,” she stressed.
A New Look at Language
“I think the language we use around dementia needs to change. The words we use have impact,” said Rogers. “When someone hears the word ‘dementia,’ they think of all the portrayals on TV and news programs and in movies. These don’t necessarily depict people using their strengths and the abilities they still have. We need to support opportunities for their voices to be heard, as well as tools and strategies to support their day-to-day living.”
When we talk about language, Fisher suggested, “we need to slow down but not be condescending. We need to give people time to process what they heard and articulate their response.” She stressed, “Our voice is a powerful instrument, and we need to use it wisely. We need to avoid ‘elderspeak,’ which involves simplified speech with an elevated tone that can sound patronizing.”
She also emphasized the need to avoid ageist language, such as, “You do that really well for someone your age.” Such comments may be well-meaning, but they can be insulting or hurtful to residents. Fisher said, “We need to be conscious of who we are talking with and how they may receive what we say. Before you speak, take a step back and put some thought into your words.”
Staffing Steps
“We know that turnover rates are high, so it is important to prioritize what staff needs to feel supported and valued in their work,” said Spetz. “In the big picture, it will prove to be much more productive if we retain skilled people and reward them for their good work.”
Empowering staff makes a difference when it comes to quality dementia care. “Make sure staff have the basic awareness of dementia, but also knowledge about the disease’s progression,” said Snow. Everyone from the receptionist to the housekeeping staff should have some training about how to recognize signs of dementia and communicate with residents who have dementia. Snow suggests short, focused training sessions with substantial follow-up. “We need to make sure people are actually changing their practice behaviors.
“The evidence is strong that we need to do coaching. This may come in the form of stand-up meetings on the floor or regular check-ins of some kind. When people do something well, such as getting an agitated resident calm enough to take a shower, it is important to recognize their accomplishment. When there is a challenging situation, such as one where team members can’t get an upset resident calm enough to shower, it is important not to blame or shame. Instead, use this as a learning opportunity: ‘That was a real challenge. What happened there? How can we use what we know about the resident to enable a better outcome in the future?’”
Joanne Kaldy is a freelance writer and communications consultant based in New Orleans.