“It is so hard,” the man sitting across from me said. “We’ve been married for nearly fifty years, but I never expected anything like this.”
“What is going on?” I asked Al, sympathetically.
“It’s Lisa,” he said. “You know her memory has been slipping for a little while. Well, we went to the neurologist like you told us to, and they ordered a whole bunch of tests and a brain scan of some sort. Then, they told her she had dementia.”
“I thought that was what was going on,” I replied.
“I know you told us that,” Al said. “Well, there are times she doesn’t recognize me. She looks at me blankly like she is wondering what crazy stranger has gotten into her house.”
“That’s got to be hard,” I said.
“The only thing I’ve found that brings her back to herself is to go outside and call her on her cell phone. I tell her to come out to the garage, I’ve got something to show her. Somehow when I do that, it brings her back to the present and lets her know who I am – for a little bit, anyway.”
We moved on to talking about other things, but I could tell that Al’s heart was breaking. His wife of 48 years looked the same as ever on the outside and yet, she was a completely different person.
I’d like to explore some of the challenges in dealing with dementia.
Dementia in the Bible
Ecclesiastes 12:1-7 gives a somewhat dismal view of the aging process. “Remember now thy Creator in the days of thy youth, while the evil days come not, nor the years draw nigh, when thou shalt say, I have no pleasure in them; While the sun, or the light, or the moon, or the stars, be not darkened, nor the clouds return after the rain: In the day when the keepers of the house shall tremble, and the strong men shall bow themselves, and the grinders cease because they are few, and those that look out of the windows be darkened, And the doors shall be shut in the streets, when the sound of the grinding is low, and he shall rise up at the voice of the bird, and all the daughters of musick shall be brought low; Also when they shall be afraid of that which is high, and fears shall be in the way, and the almond tree shall flourish, and the grasshopper shall be a burden, and desire shall fail: because man goeth to his long home, and the mourners go about the streets: Or ever the silver cord be loosed, or the golden bowl be broken, or the pitcher be broken at the fountain, or the wheel broken at the cistern. Then shall the dust return to the earth as it was: and the spirit shall return unto God who gave it.”
In this passage, the poetic description seems to speak of loss of teeth, loss of hearing, unsteady gait, and general frailty. It is hard to say if any of these images speak of memory loss. What is certain is that the passage begins with a command: “Remember!”
This is not the only place in Scripture where humans are commanded to remember. Over and over, we are told to remember God. We are to make certain that we instruct our children about Him. “And thou shalt teach them diligently unto thy children, and shalt talk of them when thou sittest in thine house, and when thou walkest by the way, and when thou liest down, and when thou risest up” (Deuteronomy 6:7).
The time may come when we are not able to remember anymore. The most important thing – even as we think about the subject of dementia is that we remember the One who made us and follow Him with all our hearts.
What Dementia is
Dementia is any illness that causes a loss of memory, reasoning, and social functioning. Most people think mostly of the loss of memory. I suppose this is because early in the illness other people notice things like difficulty finding words and frequent repetition of stories.
Social functioning is often maintained until late in the illness. If you ask someone with mild dementia if they know today’s date, they will likely answer, “Oh, you know, I stopped paying attention to things like that when I retired.”
The most common cause of dementia is Alzheimer’s dementia – at least 70 percent of people who have progressive memory loss have Alzheimer’s dementia. Alzheimer’s seems to be related to proteins called amyloid, which get deposited in the brain and prevent nerve cells from communicating with each other.
Other causes are vascular dementia, where blockages in the blood vessels in the brain cause the death of nerve cells. Lewy Body Dementia is a sort of memory loss that is associated with Parkinson’s Disease. Approximately eighty percent of people with Parkinson’s Disease will eventually develop dementia.
Diagnosing Dementia
If family members suspect someone is developing memory loss, the best thing is to bring them to their primary care provider for an evaluation. Along with doing a physical exam, the doctor will typically do things like have the patient draw a clock and do a mini mental status exam, which asks the patient to answer a lot of simple questions and do some short-term recall of items.
Blood tests including a thyroid and Vitamin B12 level would be done. A brain scan or ultrasound of the neck arteries might be done as well.
The goal is to identify areas that can be treated and take care of those.
Eliminate Medications
Many medications increase the risk of memory issues. As people get older, trying to avoid these medications is helpful to prevent the development of dementia.
Anticholinergic medications are probably the biggest culprit that I encounter. The most common of these medications are older antihistamines like diphenhydramine (used as either a sleep aid or allergy pill) and doxylamine (used as a sleep aid). In one study, patients who took an anticholinergic medication for the equivalent of three years had a significantly higher risk of dementia than patients who took these sorts of medications for less than three months.1 Older depression medications can also fall into this category.
Anxiety medications, called benzodiazepines, have also been associated with memory issues. Studies indicate that patients who take these medications have a higher risk of developing dementia than patients who do not take them.2
Seizure medications may make thinking ability worse as well. Having a seizure disorder seems to increase the risk of dementia, but certain older medications like valproate and gabapentin seem to make it harder for older people to think clearly, and shifting to lower-risk seizure medications is in order (if possible) for older people.
There are times when someone needs to take medication, but as patients get older, it is important to think about the risks of those medications. There is a list of medications that are wisest to avoid for patients over 65 years of age, called the Beers List. Substituting similar medications with fewer side effects or using lower doses is recommended.3
Medical Treatments
The first rule when dealing with dementia is to make certain that all of the metabolic things are in as good control as possible. So, if someone has diabetes, it is best to make certain that their sugar is in as good control as possible. If someone has high blood pressure, make certain that it is well-regulated (this is particularly true if someone has vascular dementia).
There are several different classes of medications that are approved for treating dementia. One group is the cholinesterase inhibitors. These medications raise the level of a chemical called acetylcholine in the brain and peripheral nervous system. These medications are certainly not miracle drugs and at best they seem to slow the progression of memory loss and do not really restore previous brain function.
The other medication is called memantine. It works by targeting the glutamate receptor in the brain. Just as with the cholinesterase inhibitors, the effects are not huge and the end result only slows the memory loss.
Both of these medications are generic, and it is reasonable to try them and see how someone responds to them.
One last medication to mention is called lecanemab. It is an IV infusion that targets amyloid, a kind of protein that develops in the brain of people with Alzheimer’s dementia. The medication seems to work quite well at clearing amyloid from patient’s brains. This medication is very expensive ($26,500 per year)and it has been linked to an increase in strokes. In the studies, dementia symptoms were only slowed by about 30 percent compared with a placebo.
There are no other medications currently approved to treat dementia.
Non-medication Therapies
There are several things that people can do to help slow the progression of dementia. These can be helpful for people who have a strong family history of dementia and want to prevent its onset.
Cardiovascular exercise is very important. Doctors mention exercise in relation to nearly every chronic illness because it has been shown to work. In the case of dementia, people who exercise regularly have about 30 percent decreased risk of developing the disease. Regular exercise seems to slow the progression of dementia.4
Doing puzzles that require mental activity, like Sudoku or crossword puzzles seems to help slow the progression of memory loss and may also reduce the chance of developing dementia.
Lastly, it is helpful to learn something new. People who learn a new skill or focus on learning a new language help their memories quite a bit. A study compared older people who learned a new skill with people who went to social events.
The point seems to be that our brains need to be pushed to create new pathways or they will tend to break down.5
Caring For Someone with Dementia
Caring for someone with dementia is challenging in a number of ways. It is often difficult to know how much independence to allow the person. There have been many books written on this subject, but there are a few things that are worth mentioning.
It is important to avoid dangerous things. The two most dangerous things for someone with faulty memory are driving and cooking. Both of these seem commonplace, and the person may seem to be doing fine, but they can become a problem very quickly.
The danger of driving a car or a buggy is twofold. First, some people freeze at certain points, not remembering how to do a particular skill. This can be a problem, not only for them but also for others on the road.
Second, older people can start off on short journeys to a local store or restaurant and end up getting lost. I have had patients who ended up driving around for hours trying to find their way home when they got confused driving to town.
Cooking, of course, really comes down to a question of remembering to set timers and take things off the stove or out of the oven at the appropriate time.
Many times, people who have dementia do not realize how much their abilities have slipped and resist the idea that they need to give up the car keys. Maybe it simply comes down to a loss of independence, but it is hard to face the fact that you are no longer safe behind the wheel.
Try to keep things the same within the room and the home. Even small changes in room arrangement can be enough to upset the situation. Taking someone out of their home – for instance, admitting them to the hospital often makes things a lot worse. Suddenly, confusion that only seemed mild before is now extremely high.
If there is a fruit of the spirit that is key for dealing with someone with dementia, it is patience. None of us has as much patience as we need, as dementia spreads that patience awfully thin.
People with dementia often act like children on a long trip. They ask over and over when they are going home. They wonder where dead relatives are or why the children aren’t home yet. No amount of explanation helps, because only a minute or two after they ask the question, they have forgotten the answer and are asking again.
Their skills often wax and wane. One day, they can button their shirt, and the next day, that skill seems to have flown out the window. It is easy to believe that they aren’t “trying hard” and that they could do more if they would only make the effort.
Unfortunately, the fact that someone with dementia could do something yesterday doesn’t mean that they can remember how to do it today. Getting upset with them only makes these things worse as it adds anxiety to a person who already lacks the memory of how to do a skill.
As much as possible, answer the person gently even if it is the fifty-third time that you have answered the same question. Use distractions as well. If there is an activity that they can still do, such as sewing or jigsaw puzzles (even children’s puzzles with really big pieces), get them to do it. Late in the illness, letting them look at books with pretty pictures or sometimes even giving them a baby doll to hold can help settle them and distract them from their anxieties of the moment.
Get Others to Help
It is easy to become frustrated. Trying to provide all of the care needed by yourself is not a long-term solution. Dementia care is a marathon and not a sprint. Many people live for years after the diagnosis, and even though their physical body remains relatively strong, they require more and more care.
One of the blessings of having family connections and church communities is that we have people who are available to provide assistance.
Having family members or friends step in to give you some respite is key to not becoming seriously burned out or even angry with someone that you care about. It is best to take some time away periodically before you are mentally depleted. You may think you are doing fairly well, but all of us have a tendency to get weary in well doing if we never get a break.
Conclusion
I wish there were more medical solutions for dementia. Perhaps more will come later. For now, medications are quite limited.
The key is to put the fruit of the Spirit into practice. “But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith, meekness, temperance: against such there is no law” (Galatians 5:22-23).
Even on the most frustrating days, people who are dealing with severe memory loss need love, gentleness, and patience from their family members. It is only through the Holy Spirit’s power that we can provide the care that is needed for someone whose body is strong, but who no longer even recognizes you.
- https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2091745#:~:text=Conclusions%20and%20Relevance%20Higher%20cumulative,minimize%20anticholinergic%20use%20over%20time.
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325366/
- https://sbgg.org.br/wp-content/uploads/2023/05/1-American-Geriatrics-Society-2023.pdf
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258000/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4154531/
