Supporting individuals living with dementia

Cognitive health

by

You know that feeling when you walk into a room and forget what you were looking for? We can all relate to the feeling of frustration, confusion and disorientation. But for those living with dementia, that feeling may not go away.

These instances of confusion can be disheartening and often traumatic for the person with dementia and the loved ones who care for them.

Bonnie Burman, former director at the Ohio Department of Aging, current Ohio Council for Cognitive Health president and New Albany resident, knows all about these struggles. She has spent much of her life working to improve the lives of those living with dementia to keep them safe and improve their quality of life.

What is Dementia?

Dementia can present in many ways but is characterized as a decline in memory and thinking skills that takes a significantly negative toll on a person’s everyday life.

A common misconception about dementia is that it is synonymous with Alzheimer’s disease. While Alzheimer’s disease accounts for most cases of dementia, dementia is also a diagnosing factor in Parkinson’s and Huntington’s diseases as well as other diseases characterized by cognitive decline.

Ohio Council for Cognitive Health says that despite popular belief, dementia is not a normal part of aging. Making mistakes from time to time such as forgetting a name or appointment is normal, but confusion about the time of day or place and the inability to retrace steps are not.

While many people think of dementia as it presents in its late stages – with severe confusion and a disconnection with reality – Buram says it is a spectrum. There are many people with dementia who live independently and not in care facilities.

Dementia unfortunately carries a heavy stigma and many people go undiagnosed because of shame and a lack of understanding.

Wandering in Their Shoes

Another misconception of dementia is that the behavior of those living with it is always random and unpredictable with no logical explanation or motive. By taking the time to consider what might be causing the behavior, we can come up with better solutions.

A common behavior of those living with dementia is “wandering.” This is when a person becomes confused about where they are after leaving home. The person wandering most likely had a motive when they left, but might have forgotten it at some point.

Burman says when you look at a person’s behaviors as a way of communication, it is easier to find the root of the issue.

For example, she once met a family who was concerned for their loved one living with dementia who tried to exit his residential facility every day around the same time. Because of his cognitive decline, his family worried about his safety outside the facility.

Burman says when she is presented with instances like this, she “plays detective” trying to find the reason why a person might be behaving this way. She asked the family about his prior routine and if there was anything that would happen daily around that time that he would exit his home for. Suddenly the answer was simple: every day he would retrieve his mail around that time.

“It was a matter of saying let’s put a mailbox right outside his room, filled with all sorts of mail. Every day, it’s all he was doing was just going to get the mail, and so here we prevented him needing to be in a more restrictive environment,” Burman says.

Good Days and Bad Days

In addition to wandering, personality changes can also be a common factor of dementia, this can present as increased irritability, anger, depression and anxiety. A simple misunderstanding or conflict may cause big emotions for a person with dementia, sometimes to a seemingly unreasonable level for the people around them.

Burman says one way to prevent these situations is by simply playing along. A person with dementia may say or do things that aren’t correct, which can frustrate a loved one. She says instead of informing them of their error, it is best to let them live in their own reality as long as it is not putting themselves or others in danger.

“If somebody visits their mother and the mother thinks that they were a college roommate, you go with it as opposed to saying, ‘No, no, no, I’m not your college roommate, I’m your daughter,’ because now you’ve just kind of ruined the visit and you’ve lost an opportunity to say something like, ‘Love college, let’s talk about your courses,’ or whatever,” Burman says. “So, the kinds of things that are arguing and correcting are real issues that people don’t know about.”

Another way to help a person living with dementia from getting upset is to identify their triggers and make accommodations to avoid them. No one person is the same and not all strategies will work. Triggers can even change from day to day.

Some people may become overwhelmed by large spaces and may benefit from creating a smaller environment by closing off doors or moving all belongings into one room, while others may feel completely trapped by these measures. Often these situations require patience as well as trial and error.

Picking out the loved one’s outfits for them and other ways of simplifying everyday tasks can be helpful.

“When we talk about brushing your teeth, we have broken it down to about 44 steps. It’s really complicated, and so if you simplify the steps by saying, ‘Alright, let’s go into the bathroom. Step number one, let’s go over to this sink,’ so you minimize the steps one by one, so that someone actually can complete the task, as opposed to you doing it for them,” Burman says.

Lisa Siders, who is a caretaker for her mother, Millie, who lives at Wesley Woods in New Albany, says she makes an effort to help her mom continue to do the things she has always enjoyed.

“I still take her to get her nails done, I take her to church because I know that’s what she would do,” Siders says. “And when I take her to places, I make sure I put her makeup on because that’s what she would do.”

Courageous Caretakers

Dementia affects not only the person who is displaying symptoms but also the family and friends that surround them. That is why self-care and asking for help are important for caretakers of people living with dementia.

“It impacts more than the individual, it impacts the entire family, it might impact the faith community, the neighborhood, etc.,” Burman says. “So, when we talk about dementia, we also talk about caring for and about the care partners and giving them the skills they need to ensure that they are being as responsive as possible, but also taking care of themselves.”

Getting help from other family members has been imperative for Siders and she recommends consulting medical personnel such as a neurologist and other memory-care practitioners to better understand a loved one’s situation.

“If anybody has siblings, or a relative or a close personal friend that can just give you a break from having to go see them and attend to their needs, then take that opportunity,” Siders says.

Maisie Fitzmaurice is an editor at CityScene Media Group. Feedback welcome at mfitzmaurice@cityscenemediagroup.com.