Practical guidance on talking to someone who is living with dementia

Geriatrician Andrew Duxbury, M.D., has been treating people with dementia for the past 40 years. Over that time, he has gotten many variations of the same questions.

“People always wonder, ‘Do we tell Grandma about something bad that has happened?’” said Duxbury, a professor in the Division of Gerontology, Geriatrics and Palliative Care and a senior scientist in UAB’s Integrative Center for Aging Research and Center for the Study of Community Health. “My philosophy has always been that Grandma didn’t get to be Grandma without living through a whole lot — probably more than you did,” Duxbury said. “Yes, always let them know the truth.”

That said, “that does not mean you have to keep repeating it if they are not capable of retaining it” due to dementia memory loss, Duxbury said. “If they have been told, and 10 minutes later they don’t remember — if Grandma is asking about her husband who has died — you can say, ‘He can’t be here right now’ and change the subject. That’s a perfectly OK way to handle it. But don’t try to keep it a secret.”

Understanding cognitive decline: Reality may be different, but it is just as real.

“The consensus these days is that the way to understand and approach people with dementia is to understand that reality to them is different from reality to the rest of us,” Duxbury said. “As the comedian Lily Tomlin said, ‘What is reality? Just a collective hunch.’ Most of our brains are wired to work the same way, so we all agree to interpret the information that comes into our brains the same way. But when your brain changes later in life and you enter a dementia phase, your brain is no longer taking in that same sensory information and reality for you is different.”

Reality may be different, but it is important to keep in mind that the person with dementia does not understand this, Duxbury said: “You always think, ‘This is real. I am right,’ even if you have dementia. So, a demented person will often operate on the level of, ‘I’m fine; it’s all the rest of you that have gone crazy.’”

Always remember, Duxbury says, that whatever that reality is, it is real to the person. “Saying ‘that is wrong’ or ‘that’s not real’ or ‘you are mistaken’ doesn’t get you very far,” he said. “That’s like you saying to me ‘the sky is orange’ when I can see perfectly well that it is blue.”

Stay in the overlap between your realities.

“There is an intersection between the reality that the majority of us accept and the reality of the demented person,” Duxbury said. “As the dementia progresses, the intersection shrinks. There are places within our reality that a demented person cannot go, because their brain wiring cannot experience that. The goal when talking with people with dementia is to stay within that intersection where you can communicate and understand the world in the same way.”

When you find yourself outside that intersection, Duxbury said, “the best thing to do is to change the subject and gently try to push them to something that is closer to the intersection.”

Try to get a different part of the brain going.

“When you are stuck, target a different part of the brain,” Duxbury said. “Try to give them a different sense. Give them something to eat so the taste buds kick in. Or put on music that speaks to them. We all set our musical taste between 12 and 25 — I read somewhere that year 14 is the key year — so whatever we are listening to in that time frame is what we want to hear, even decades later.”

Dementia has many faces

“Dementia is a syndrome — a broad term for adults who used to function in a normal cognitive way but now do not,” Duxbury said. “Alzheimer’s dementia is the most common, but there are dozens and dozens of dementias. They have different patterns, too.” (See A quick guide to different types of dementia.)

Duxbury offers some specific tips on talking with people who have different forms of dementia.

Alzheimer’s dementia-specific communication strategies:

“People with Alzheimer’s dementia tend to maintain their social graces until relatively late in the disease,” Duxbury said. “They can make small talk and be polite and sit next to someone and chit-chat and you would not pick up how impaired they are. But if you try to pin them down on any specific topic, you will start to figure it out.”

Because of that, “it’s perfectly OK to let them stay on that superficial level where they are comfortable,” Duxbury said. “Don’t try to push them into areas that make them uncomfortable.”

Frontotemporal dementia-specific communication strategies:

“People with frontotemporal dementia can be very inappropriate,” Duxbury said. “They lose their filters and social niceties and can walk down the street commenting loudly about other people.” That makes people with this type of dementia “difficult to manage,” he said. “They don’t understand that what they are doing is not socially appropriate,” he said. “Trying to correct them in the usual ways does not work, and it can be problematic.”

Some people with other variants of frontotemporal dementia “become very garrulous — they talk, talk, talk, and it is like a word salad,” Duxbury said. “Sometimes they can be incredibly confabulatory — they grab information from somewhere in the brain and string it all together. The best way to handle them is to let them talk.”

Be open to change — and learn to manage social situations.

“As a culture, we don’t recognize that the changes of older life can be as rapid as younger life,” Duxbury said. “We are really good at understanding that young people grow and change. We all know that a 5-year-old, a 10-year-old, a 15-year-old and a 20-year-old are each very different people. We would not put them in the same environments. But in our culture, you are presumed to be that same intact adult your whole life. People try to keep things the way they were and refuse to change the life around the individual to make it match who they are instead of who they were.”

In his role with the Home Based Primary Care program at the Birmingham VA, “I do house calls a lot,” Duxbury said. “If I go into a house and it still looks like it is 1975, I know that we are going to have problems. These are people who have not embraced the fact that life has changed.”

The reality is that “the medical treatments are somewhat limited” for dementia, Duxbury said. “There has been a lot that has been developed in the 40 years that I have been doing what I do; there are a number of things that do a little bit but nothing that does a lot. So the vast majority of successful treatment is not so much about managing the body and the brain, but about managing the social situation so it is in sync with the body and the brain.”

This pilot program helps caregivers of Medicare recipients with dementia in Alabama.

Managing change without sufficient support can be an overwhelming task.

Duxbury is the medical director for a new pilot program operating in Alabama — one of more than 325 nationwide and only two currently in the state — that is testing a new approach to dementia care from the federal Centers for Medicare & Medicaid Services.

It is called the Guiding an Improved Dementia Experience Model, or GUIDE, and in north central Alabama, it is run by a company called LifeCare for Seniors, founded and led by UAB alumna Christy Baynes, MSHA, MBA.

“Medicare was never designed to be an all-encompassing health program for the elderly,” Duxbury said. “It was designed to treat acute illness, and it is not possible to define dementia as an acute illness.” People who work in gerontology “have recognized for decades that this is an issue,” Duxbury said. “We aren’t supplying what is needed for families.”

GUIDE is testing a way to address this gap. It “offers additional services to help bolster life and counseling for caregivers to help make that life a better match for who the demented person on Medicare is,” Duxbury said. These services include up to $2,500 annually to pay for respite care, care navigation, 24/7 access to a support line. caregiver training and education, and connections to community resources.

GUIDE is open to traditional Medicare participants with dementia who are not in a nursing home or on hospice care. Read more about what GUIDE offers, and how to enroll, in this article.