A dementia diagnosis often raises concerns about whether the condition is hereditary. Many people worry about passing it on to their children, while others watching their parents struggle with the disease wonder, Will this happen to me one day? The good news is that, in most cases, dementia is not directly inherited. However, some forms of dementia have genetic components that may increase a person’s risk. Scientists are still working to fully understand these complex connections, but research has shown that while family history can be a factor, lifestyle and environmental influences often play an even greater role.
Memory Care Resources
Explore insightful articles, expert advice, and practical tips to support your loved one’s transition to memory care. From navigating challenging conversations to understanding the benefits of personalized care, our Memory Care Resources category provides the guidance and knowledge families need to make informed decisions and ensure their loved ones thrive in a supportive environment.
Lewy body dementia is a particular form of dementia, characterized by abnormal brain cells called Lewy bodies. The disease gets its unusual name from its discoverer, Dr. Levi of Germany, who uncovered the disease in 1912. “Levi” was changed to “Lewy” in the English translation. Lewy body dementia is one of the most common forms of dementia, occurring in 15% or more of all cases. However, the general public and even some health professionals are not as familiar with the disease as they are with better-known dementias like Alzheimer’s.
Researchers at this time don’t know why Lewy bodies form. They are made up of alpha-synuclein protein, which is also connected to Parkinson’s disease and other disorders. Indeed, Parkinson’s disease patients and Lewy Body dementia sufferers display similar symptoms, especially in later stages of the disease. Lewy bodies collect in the nuclei of the neurons that help manage motor control and memory. They can accumulate by themselves, but they also sometimes appear in the brains of those with Alzheimer’s. Because it is easily confused with similar diseases, Lewy Body dementia is under-diagnosed. However, seeking a diagnosis is critical, as it can lead to proper care that will make a real difference in quality of life and the length of time the patient is able to maintain their independence.
Unlike Alzheimer’s, in which the disease eventually kills most of the victim’s neurons, in Lewy Body dementia the patient only loses 10 to 15% of neurons, though other areas of the brain are damaged as well. Lewy Body dementia tends to affect different areas of the brain than Alzheimer’s does. The disease interferes with language, memory, and higher-level mental functions. Lewy body dementia also often occurs in connection with anxiety and depression.
As with other forms of dementia, there is no cure currently available. Doctors will prescribe various medications to treat the different symptoms, however. Drugs like rivastigmine and donepezil are used to treat cognitive problems, and may also help with motor control and psychiatric issues. Motor control can also be helped by levodopa. Drugs that treat hallucinations however usually are not used since there’s the possibility they could make motor control issues worse. The life expectancy for someone with the disease is about eight years.
Lewy body dementia is an area of active government-funded research, with the immediate goal of better understanding what causes the disease. Scientists hope to eventually discover ways to treat it, prevent it and cure it.
There are many misconceptions out there about Alzheimer’s. Below are some of the most common, along with explanations about what the real deal is.
There are cures that will stop the development of Alzheimer’s.
Unfortunately, at this time there is no cure for Alzheimer’s disease, and no way to halt its progress. However, there are drugs that will, temporarily, pause the deterioration of or even improve cognitive skills and memory. But they only, for a period of time, treat the symptoms and not the disease itself. These drugs only work for some people, so there’s no guarantee that they can help your loved one. These drugs include cholinesterase inhibtors like Aricept and Exelon, and memantine (also known as Namenda). Cholinesterase inhibitors are used in the earlier stages of Alzheimer’s, and memantine is prescribed later on.
The aspartame in artificial sweeteners contributes to memory loss.
Aspartame is an artificial sweetener approved by the FDA in 1996. It is made by combining two proteins, phenylalanine and aspartic acid, with methanol, a chemical found in various plant foods. The studies that have been done on this issue so far have yielded no evidence of a connection between memory loss and aspartame.
The use of aluminum in cooking or with food can cause Alzheimer’s.
Current studies do not show that eliminating aluminum, such as that in pots and pans and soda cans, reduces one’s chances of getting Alzheimer’s disease. The jury is still out on aluminum’s relationship to the disease, but scientists generally think that it is unlikely that it has any significant effect.
Alzheimer’s disease can be caused by a head injury.
This one is partially true: researchers have proven that having a severe head injury with loss of consciousness during one’s life will increase the chances that the individual will get Alzheimer’s disease. However, researchers don’t yet understand why this occurs and what is happening in the brain during these incidents that leads to Alzheimer’s.
Alzheimer’s disease won’t kill you.
Alzheimer’s is, in fact, a fatal disease. It first destroys brain cells that assist with memory functions, but over time the damage will spread to parts of the brain that control essential bodily functions. It can be hard to attribute death to Alzheimer’s disease, however. Many Alzheimer’s patients, due to their age, are experiencing a number of health issues. It is likely that several different problems contribute to the actual cause of death.
Dementia can make it difficult to tell when a loved one has come down with a cold or another illness. They may not be able to tell you how they’re feeling in an intelligible way. By being observant and keeping an eye out for certain signs, you can spot when they may need a little extra TLC, medication, or a trip to the doctor. Here are some tips.
- A runny nose or sneezing by itself may not be a cold or flu–it might be just allergies instead. Try to determine if your loved one has additional symptoms, like fever or tiredness. If they do have a cold, make sure that they stay well-hydrated.
- Those with dementia or Alzheimer’s are unfortunately susceptible to urinary tract infections. Due to the intimate nature of the task, keeping these areas clean isn’t always easy for caregivers. If their urine has a strong sour smell, they likely have an infection and need treatment. Urine may also be darker or even contain blood, and your loved one will have to use the bathroom more frequently than usual. Finally, urinary tract infections can cause behavior changes in seniors and even bring on dementia symptoms. If you notice any of these signs, be sure to treat the infection right away. A neglected urinary tract infection can land a senior in the hospital.
- Look for signs that your loved one is paying attention to or favoring one part of the body over others. That could indicate that they’re experiencing pain. Do a thorough check of the area to see if there are any bruises or other abnormalities.
- Watch for changes in bowel movements and abnormal stool. If problems don’t respond to over-the-counter medication, seek the advice of your loved one’s doctor.
- Changes in speaking patterns or behavior is another important sign. If a loved one’s demenaor suddenly changes without obvious explanation, and attempts to distract or calm them down don’t work, illness or injury is often the cause. They may also attempt to “speak” to you using gibberish. Even though your loved one cannot express themselves properly, they’re trying to give you information.
Dementia and depression share many common symptoms: withdrawal from loved ones, decreased interest in activities that were once enjoyable, memory difficulties, and an increase in sleep. Researchers have begun to explore the connection between the two and to ask whether dementia causes depression, or if perhaps depression causes dementia?
One study has found that those who have had a incident of depression are three times as likely to develop dementia. Other studies discovered that when in their life a person experiences depression can influence what kind of dementia they get. Those whose depression begins in mid-life are more likely to get vascular dementia. However, if the episode of depression occurs late in life, Alzheimer’s disease is more likely.
Researchers aren’t sure what causes these links, but they do have some theories. One is that when an individual is experiencing depression, their body produces a greater amount of the stress hormone corisol. This hormone has been shown to do damage to the areas of the brain that manage learning and short-term memory. Depression can also cause inflammation which can harm blood vessels. Finally, there’s also the possibility that the hippocampus, which helps the brain process information and create memories, is harmed when the brain experiences stress long-term. Some even speculate that since depression causes people to be less active both physically and socially, that less challenging lifestyle may accelerate the decay of the mind.
Researchers are very careful to state though that they still have much to learn about this area of study. The connection also seems to work in reverse, with dementia patients being more likely to become depressed after the disease has taken hold. Also, the similarities of the two conditions and the fact that they share many differences make the connection between them difficult to tease out.
One implication that is relatively clear, however: depression needs to be taken seriously and treated as soon as it’s caught. Left alone, it can cause too much damage to an individual’s brain, even if that person eventually moves past depression without intervention. Seniors and their caregivers should know that depression is not a normal sign of aging: it is a mental health issue that needs to be addressed no matter the age of the patient.
This is certainly an area of research to watch over the coming years, and holds promise for helping us understand how conditions of the mind and spirit can ultimately affect the body.
There are many seniors who make the transition to assisted living or memory care comfortably. But unfortunately, due to the nature of the disease, sometimes loved ones are faced with an uncomfortable request: “I want to go home.” Such a plea is heartbreaking, and when you hear it every time you visit it can leave you quite distressed.
The first thing to know is that when your loved one says “home,” they probably don’t mean their previous residence. Remember that due to Alzheimer’s and dementia, they’re living in their earlier years. Home is most likely their childhood home, and that place and the people they lived with may be long gone. So before you beat yourself up with guilt, know that they are requesting something impossible that you couldn’t give them no matter how hard you tried.
The best way to deal with this request is with gentleness and a little bit of subterfuge. This is one of those moments where enabling your loved one’s denial may be the better course. Avoid correcting or arguing with your loved one, as this will only cause distress without really aiding them in recognizing the truth.
First, use positive body language such as nodding your head. Then try to change the subject. Look for something interesting going on in the immediate environment. Maybe there’s a bird outside the window, or a colorful painting nearby. Point this out to them and shift the conversation. It may also be helpful if you can move them physically: guide them to the object of interest or turn them to face a different direction. You are trying to get them out of an unproductive rut.
From there, seguey into your loved one’s memories. Get them to talk about what “home” was. This will help them pay this cherished place a visit, if only in their minds. A photo album might be helpful here if you have one. Your discussion may give you some clues about how you can bring home to them in their new living space. Perhaps there are beloved objects or furniture that will help their new surroundings feel more familiar.
Your loved one will likely not completely stop talking about home, and you’ll likely continue to feel the pangs of heartbreak. However, some knowledge about where the request is coming from can help you accept it. This is a case where you may not be able to change external circumstances, but you can change how you react to them.Making the decision to move into memory care can be difficult for seniors. Many want to maintain their independence as long as possible, making it a sensitive and challenging conversation for their families. For the best results, focus on helping your parent feel that this is their decision.
A thoughtful and respectful approach can make all the difference. Follow this five-step plan to help your parent transition to memory care.
One hardship for those with Alzheimer’s is a lack of understanding about this disease from those in the general public. Though it may hurt sometimes, to some extent this is understandable. We can’t all be expected to be knowledgeable about every disease, even more common ones. Typically, we forgive those who are important to us if they need a little education. But many Alzheimer’s sufferers and their caregivers are surprised to discover that many in the medical field, who do not work with memory care patients frequently, also do not have a good understanding of what Alzheimer’s is.
Imagine someone in the early stages of Alzheimer’s falls and breaks their hip, requiring a stay in the hospital. When the doctor interviews her and her son to learn about other medical conditions that may affect treatment, they mention that she has early Alzheimer’s. The doctor seems to ignore this information, which he fails to see as relating to the broken hip, especially since after a casual interaction he notices no cognitive impairment.
However, our patient quickly runs into problems. The doctor goes over instructions for her pain medication at a time when her son isn’t at the hospital, expecting that she will manage this on her own. The next time her son comes in, he finds her in extreme pain because she hasn’t taken the medicine on schedule. He points out this problem to the doctor. The hospital staff then goes to the other extreme, hovering over the patient excessively, speaking to her in slow loud voices, and even spoon-feeding her! Those with early Alzheimer’s know that this clearly is not the appropriate response either.
Unfortunately, the fact is that medical professionals just don’t receive adequate training on how to handle those with more mild cognitive impairments. They are able to address severe impairments, but the shades of gray in between just aren’t discussed. However, that’s cold comfort to early Alzheimer’s patients and their caregivers, who feel ignored and misunderstood by the system.
There’s no real answer to this problem for individual patients and families, since the issue is entrenched in our larger health care system. Hopefully in the future, all doctors, nurses, social workers, aides, and others will receive more refined training on how to deal with those with early Alzheimer’s and similar cognitive conditions. In the meantime, caregivers and patients should not assume that doctors and others will understand what they mean when they disclose early Alzheimer’s. Be specific about the kinds of communication you expect about the person’s treatment and how Alheimer’s will affect it.
You’ve noticed some recent changes in your loved one. Up until recently, your dad was working at a job he enjoyed and intended to do until he couldn’t anymore. But then he had trouble keeping himself organized and he made the decision to move on. Now, your once-driven father seems to be doing not much of anything, withdrawing from all but his closest friends and family.
You suspect something is wrong, and know that Alzheimer’s disease or another form of dementia is a strong possibility. Should you act? If you do, what should you do next? Talk to dad? Talk to his doctor? And is there any point to pursing a diagnosis? You know that even medical experts can’t be completely sure someone has Alzheimer’s. Will the diagnosis only bring unnecessary pain and conflict to someone who only has a few years of life left?
Yes, it is true that diagnosing Alzheimer’s isn’t an exact science. No doctor knows without a doubt that a person has the disease: it can only be determined after death when the person’s brain can be examined for the plaque and tangles that characterize this illness. Furthermore, recent research has found that only about a third of Alzheimer’s diagnoses are completely correct. In another third of cases the evidence is murky and the last third are completely misdiagnosed!
But to put aside the issue of imperfect medical knowledge, even assuming one could know with certainty that they had Alzheimer’s, would they want to? Those who are labeled with the disease do often experience friends and family drifting away as they become uncomfortable. Illness is never an easy thing to witness, and for some people it’s just too much.
And beyond the isolation issue, accepting an Alzheimer’s diagnosis means accepting that one’s cognitive abilities, and quality of life, will be declining. Many prefer to put off facing this reality for as long as possible.
On the other hand, knowledge does bring power. For example, it may be useful to know that a loved one’s problems are NOT caused by Alzheimer’s or dementia, so that appropriate treatment can be pursued. It may be possible that your loved one’s condition can be easily remedied. The symptoms of a number of medical problems can be confused with Alzheimer’s: difficulty hearing, medication interactions, thyroid diseases, depression, heart problems, urinary tract infections, and diabetes. These concerns may be more treatable.
Finally, having an Alzheimer’s diagnosis can enable the patient and their family to plan more effectively for the future. It can prompt everyone to have a discussion about how the person wants to be cared for as they decline, while they are still able to have a meaningful conversation. It is also easier to make the appropriate legal, financial, and medical arrangements in the earlier stages of the disease. And finally, having a concrete reason for the behavior can be comforting to seniors and their loved ones. Otherwise, it’s all to easy for them to think that they’re “going crazy” or otherwise defective in some way.
There is a reasonable fear around seeking confirmation of suspicions of Alzheimer’s disease, but the disease itself is not going to go away. Many may find, as is often the case with fear, that the best way to escape it is to face it head on.
Many caregivers face the important question of whether to allow their loved one with Alzheimer’s disease to be given antipsychotic medications. The benefit of such drugs (like Abilify, Haldol, Zyprexa, Risperdal, and Seroquel) are that they reduce anxiousness, aggressive behavior, and agitation in those who have different forms of dementia. Almost all patients will experience these symptoms at some point, especially in the later stages of the disease. On the other hand, these medications come with some frightening side effects: incontinence, dizziness, confusion, and a hampered ability to speak or move, to name a few.
The medicine can help to make a caregiver’s job easier and reduce their stress. This is of course not a trivial concern: if their loved one is less agitated, a caregiver in turn may be able to provide better care.
However, adding one more pill to any senior’s drug regimine may cause unpredictable problems. The FDA warned in 2005 that the use of antipsychotic medications by those with Alzheimer’s and other forms of dementia may result in as much as double the chance of sudden death. Patients who are taking these drugs must be watched carefully.
If your loved one is already taking these drugs, though, you may not want to take them off. Researchers recommend that seniors who respond to Risperdal keep on taking the drug.
But as far as starting these medications go, the general policy is that they should only be used as a last resort. It’s estimated that in as many as two-thirds of cases, the use of these medicines is inappropriate. Use behavioral strategies to cope with anxiety and acting out instead. You may want to try giving simple acknowledgement to your loved one’s experiences, even if you know that they differ from what the rest of us would consider reality. Avoid correcting them or arguing with them. Or simply try to distract your loved one with an enjoyable activity.
Also consider that the aggression and anxiety that these medicines are supposed to treat is a sign that your loved one needs something that they’re not getting. Instead of providing them with that thing, the medicine simply masks the symptoms. One tip is to respond to the emotion, not to the behavior. Look underneath their actions.
Of course, the most important advice to consider when making any decision regarding antipsychotic drugs is that of your loved one’s doctor. They can help you weigh the pros and cons for your particular situation.