Online Health Chat with a Cleveland Clinic Physician

June 6, 2013


Dementia is not a single disease. Rather, the term describes a loss of cognitive function (memory loss and/or speech problems) and behavioral problems (being unable to handle day-to-day tasks or tend to personal hygiene) that occur with many diseases. When these symptoms occur in younger patients (under age 65), it is called young-onset dementia. The symptoms of young-onset dementia may be subtle or increasing at an alarming rate. In either case, the first concern is to figure out what is causing the symptoms. Getting the correct diagnosis is of utmost importance in young patients because there is a higher possibility that the cause may be able to be treated when compared to dementia in older adults.

Let’s Chat About Young-Onset Alzheimer Disease

Cleveland_Clinic_Host: Welcome to our Young-Onset Dementias online health chat with a Cleveland Clinic physician.

Alzheimer Disease Diagnosis

kkoman: My father was diagnosed at the age of 63 years old. Is this considered young-onset Alzheimer disease?

Cleveland_Clinic_Physician: Yes, anything with the onset of symptoms at an age less than 65 years old is considered young-onset dementia.

agnes: What defines mild Alzheimer disease vs. moderate Alzheimer disease?

Cleveland_Clinic_Physician: This is actually a subjective definition, but generally the severity of dementia is measured by the amount of functional impairment that a person is experiencing. For example, do they need help bathing, fixing a meal vs. feeding themselves, etc? Often a clinical tool called the Clinical Dementia Rating (CDR) scale is used clinically and in research studies to gauge the severity of dementia.

NEOHdiver: My spouse, who is currently 61 years old, was diagnosed with mild cognitive impairment (MCI), consistent with the early stages of Alzheimer disease about three years ago. I noticed issues with memory, but much more with executive reasoning. She was diagnosed following a complete memory work-up (lasting around six hours over two days). Her executive reasoning was at around 70 percent, which is not consistent with someone who has four college degrees, has been the executive director of an agency, was then in a PhD program, and has previously successfully passed two different licensing boards—one of which was extremely rigorous. Her memory tested above average, but still below where one would expect of someone with her education and work history. I finally convinced her to get tested when she failed the PhD doctoral boards three times (in a less rigorous discipline than at least one previous degree). She is currently on both Aricept® (donepezil hydrochloride) and Namenda® (memantine hydrochloride), but believes there is nothing wrong and—except with close friends—still functions well enough that most other people are unaware anything is wrong. She had an aunt who died with Alzheimer disease.

My understanding is that young-onset dementia is typically much more aggressive, but it has been approximately a decade since I have noticed occasional glitches that are growing more frequent. Sometimes we have the same conversation multiple times in an hour with her having no recollection that it is being repeated. She is telling my stories in the first person (really believing they happened to her), and she is unable to perform simple tasks that require a single step of reasoning to get from the first part of the task to the second. There has been some progress in her condition, but not what I would have expected based on when I started noticing things (when she was in her early 50s). Is this within the range of normal? Are there other things that might be causing something similar to Alzheimer disease—particularly with a strong loss of executive reasoning and gap-filling memory (gaps are filled early after the event, and then the false memory ‘sticks’ and feels real to her). Are there further evaluations that could better refine what is going on?

Cleveland_Clinic_Physician: There is some controversy on whether or not young-onset Alzheimer disease is more rapidly progressive then late-onset Alzheimer disease. There are conflicting studies that show it may be more rapid vs. that it has the same progression rate. There are other causes of young-onset dementia that are more rapid, such as frontotemporal dementia, primary progressive aphasia and Creutzfeldt-Jakob disease. Another consideration would be if there is something else going on top of her condition that may be making it worse, such as depression, medications, thyroid problems, etc. An expert evaluation or a repeat visit to the initial diagnosing physician is a good place to start. If there is not as much progression as you would expect, maybe it is because something else is causing the symptoms.

Signs and Symptoms of Young-Onset Alzheimer Disease

pegleg: What are the signs and symptoms of early-onset of Alzheimer disease? Is anything under the age of 65 years old considered early? What age might this start?

Cleveland_Clinic_Physician: Personally, I prefer the use of the term ‘young-onset’ over ‘early onset’ Alzheimer disease because the latter can be confusing. For example, does early onset refer to earlier in life or early in one's disease course? Young-onset dementia is generally referring to individuals who experience the onset of dementia symptoms younger than 65 years of age. Young-onset Alzheimer disease can have a variety of initial symptoms, and—perhaps most importantly—sometimes different symptoms from what one sees in the usual population with Alzheimer disease. Most people with Alzheimer disease are older, and tend to initially present with short-term memory problems and ‘word-finding’ difficulties. While this course can be seen in individuals with young-onset Alzheimer disease, it is not unusual at all for different symptoms to initially present—such as having problems perceiving things in space, difficulty with recognition of words themselves or numbers, or even more behavioral or disinhibited symptoms, as is generally seen in frontotemporal dementia. This makes the diagnosis of young-onset Alzheimer disease a little trickier and often leads to a delayed diagnosis of two to three years. Although technically young-onset Alzheimer disease can start any time before the age of 65 years old, most patients experience the start of their illness between the ages of 45 to 64 years old.

ksmith: Are there any warning signs of Alzheimer disease? If so, how do you know it is not just forgetfulness?

Cleveland_Clinic_Physician : Dementia is not a single disease. Rather, the term describes a loss of cognitive function (memory loss and/or speech problems) and behavioral problems (being unable to handle day-to-day tasks or tend to personal hygiene) that occur with many diseases. When these symptoms occur in younger patients (under the age of 65 years old), it is called young-onset dementia. The symptoms of young-onset dementia may be subtle or increasing at an alarming rate. In either case, the first concern is to figure out what is causing the symptoms. Getting the correct diagnosis is of utmost importance in young patients because there is a higher possibility that the cause may be able to be treated as compared to dementia in older adults.

lightning#: Please differentiate between early-onset dementia and the short-term memory loss of aging or menopause.

Cleveland_Clinic_Physician: Normal cognitive aging is usually associated with slowed processing speed. In other words, it takes one longer to learn things and sometimes to bring up past learned material or words, but they are generally able to do these things. Dementia is when individuals have frank impairment in these tasks. In other words, they cannot learn new things or information is quickly forgotten entirely. It reaches the point of dementia when these cognitive impairments affect someone's day-to-day functioning. Menopause is associated with decreased concentration, attention, focus and sometimes mood and anxiety symptoms. They generally fluctuate throughout the course of menopause as the hormone levels fluctuate and should improve when women become post-menopausal.

nm: My mother and father had Alzheimer disease. I will be 65 years old in a few days. I cannot remember recent names, numbers, and recently I am having trouble spelling, I cannot even remember what I can't remember. What avenue should I seek? I forgot to include that I had open heart surgery in 2005 for hypertrophic obstructive cardiomyopathy. I am on the blood pressure medication Toprol XL® (metoprolol succinate) and anti-anxiety drugs.

Cleveland_Clinic_Physician: These can be troubling symptoms and I would suggest that you bring this up to your primary care physician or a specialist to be further evaluated.

grammol: My friend's sister died of complications from Alzheimer disease. My friend is 62 years old and is suffering from symptoms as well. She is crying, forgetting names and where she has visited recently, what or if she has eaten, etc. How can I help her? Is there anything that can stop this progressive disease?

Cleveland_Clinic_Physician: I'm sorry to hear about your friend. If she has not seen a physician for her condition, she should. There are medications that can help slow the course. Perhaps the more important thing for her is addressing a lot of the other symptoms that can occur with Alzheimer disease. Depression and other neuropsychiatric symptoms are very common in Alzheimer disease (especially young-onset individual), but often respond to treatment. Depression can make memory worse and of course decreases one’s quality of life.

mlg944x: I am a 54-year-old male and I've noticed recently that I have trouble performing tasks that I have never had a problem with before, such as calculating a tip for a waitress for a dinner bill. I have made some bad mistakes, and wife noticed my errors. I was surprised when she pointed them out to me since I never had trouble with these simple calculations. Another example would be spelling a word I have spelled many times in the past, I recently could not spell the word and I locked up for a few minutes before I finally could spell it. Plus, my memory seems to not be as good as it was five years ago, I have trouble remembering what I did two or three days ago. Should I be concerned ?

Cleveland_Clinic_Physician: I would recommend that you speak with your primary care physician or see a specialist about it since you and your wife have noticed differences. If it is not a concern, at least you have peace of mind.

Genetic Link for Dementia

erinfus: Could you provide some information on genetics and the risk of developing Alzheimer disease?

Cleveland_Clinic_Physician: There are two types of genetics in Alzheimer disease; risk factor and causal. The causal part of genetics is rare in Alzheimer disease (affecting around one percent of cases) and is due to one of three possible genetic mutations. It tends to occur in young people (between the ages of 30 and 60 years old) and generally affects half of the family. The genetic risk factor is the normal variation of a gene called APOE. It comes in three types: one is protective (APOE2) and one is a risk factor for Alzheimer disease (APOE4). More importantly, not everyone who has APOE4 will get Alzheimer disease. Additionally, one half of the Alzheimer disease population does not even have the APOE4 gene variant.

jjk: My mother had dementia and the onset was when she was about 84 years old. She is 90 years old now. I am 53 years old and I am starting to worry that perhaps I am having some symptoms. I am not sure if it is related to my being her primary caregiver or if it is actually an issue. What should I be doing for my own care at this point to address this issue?

Cleveland_Clinic_Physician: Approximately one third to one half of all individuals age 85 years of age or older have dementia, and another large portion have cognitive (e.g. memory) problems not severe enough to affect their day-to-day activities. Having a family member with Alzheimer disease does slightly increase one’s risk from the general population, but having someone with an unknown cause of dementia at the age of your mother is not uncommon to others in the general population as everyone is living longer. So, your overall risk of developing dementia in regards to your mother’s medical history is negligible compared to the general population.

You are right in that being a primary caregiver for someone with dementia increases your risk of medical and mental illnesses, particularly depression. There are many other reasons for memory problems at your age, and if you or someone else has noticed that your memory has changed from what it was five to 10 years ago, you should be evaluated to see what is causing it. There are some data that spouses that are caregivers to another spouse with dementia are at increased risk of developing dementia, but I’m not aware of any data suggesting this for other populations (e.g. children caregivers).

Gender Differences for Young-Onset Alzheimer Disease

jolly green giant: Are males or females more likely to get young-onset Alzheimer disease?

Cleveland_Clinic_Physician: In general Alzheimer disease is more common in females and this trend is also true of young-onset Alzheimer disease, though there is less of difference between the sexes in the younger population. There are some forms of young-onset dementia that tend to be more common in men than women, such as frontotemporal dementia and post-traumatic brain injury-associated dementia (chronic traumatic encephalopathy).

Risk Factors for Alzheimer Disease

Indie: They say that you should keep your brain active to prevent Alzheimer disease. Most of the people in my dad's facility had highly responsible jobs and still got the disease very early. Is keeping your brain active really going to help?

Cleveland_Clinic_Physician: Alzheimer disease is a very complex disease. There are many factors that go into it and many different individual risk factors. Cognitive inactivity is a risk factor. For example, those with less formal education or those who are not cognitively active currently tend to be at increased risk of getting Alzheimer disease, but it does not prevent it entirely. Unfortunately, as you pointed out, there are very bright and cognitive active individuals who have this illness.

Blood Flow to Brain

leb215: We know that good blood flow to the brain is critical to brain health. If someone has low blood pressure, should efforts be made to increase blood pressure with the hope that it will increase blood flow to the brain?

Cleveland_Clinic_Physician: It depends on how low the blood pressure is. High blood pressure, defined as 140/90 is a risk factor for developing dementia. We typically try to keep individual's blood pressure at 120/80 or below. However, if the person's blood pressure is low enough that they are experiencing symptoms (e.g., lightheadedness or fainting), then it may be too low and causes of this should be further investigated.

Sarcoidosis and Dementia

sunkist: Can sarcoidosis cause dementia? And if it can, does it always show in an MRI of the brain?

Cleveland_Clinic_Physician: Sarcoidosis can cause dementia and is one of the things we consider especially in individuals with young-onset dementia. Although it can cause a lesion in the brain that is usually detectable by brain MRI, sometimes sarcoidosis may accompany other autoimmune illnesses that may be more likely the cause of the memory problems. In this instance, one may not see evidence of sarcoidosis on a brain MRI. In people with a personal or family history of sarcoidosis, it is important to rule out other autoimmune diseases that could be causing these symptoms.

Alzheimer Disease Caregiver Health

erush2575: I notice that when I become mentally exhausted, I am non-functional. My sleep is fine, but at times I forget what I went to retrieve. Could this be just overload? My mother is 90 years old with fast progression of dementia in less than six months.

Cleveland_Clinic_Physician: There are many other reasons for memory problems at your age. If you or someone else has noticed that your memory has changed from what it was five to 10 years ago, you should be evaluated to see what is causing it. There are some data that spouses that are caregivers to another spouse with dementia are at increased risk of developing dementia, but I’m not aware of any data suggesting this for other populations (e.g., children caregivers).

Cognitive Rehabilitation

dkerr: What are your thoughts about the effectiveness of the SAIDO Learning™ program? Are certain patients better candidates for it than others, and if so, which ones? Is it only available to Eliza Jennings residents?

Cleveland_Clinic_Physician: There are many programs similar to the program you refer to. It is probably best to talk about this program in general. They are generally referred to as cognitive rehabilitation or cognitive therapy. There is some evidence that it can enhance or delay the progression of memory problems—generally in people without memory problems and those with mild memory problems. There are some data that suggest some cognitive rehabilitation may be detrimental to individuals with more severe forms of dementia (likely related to frustration and poor self-attitude). No one knows for sure why these programs work, but it is likely for multiple reasons such as the brain stimulation, structure and social interaction—all of which are known to help prevent and decrease memory problems. Most of these programs are run by occupational therapists. Check with your local hospital’s occupational therapy department to see if there is a program local to you may be helpful. Cleveland Clinic offers these services as well.

Medications for Young-Onset Dementia

jjk: What is the efficacy of drugs such as Namenda® (memantine hydrochloride) and the Exelon® (rivastigmine transdermal system) patch for young-onset dementia?

Cleveland_Clinic_Physician: Although no specific trials just for people with young-onset Alzheimer disease have been done with these medications, many individuals with young-onset Alzheimer disease are included in these trials so it is assumed that they are just as efficacious in the young and old. Exelon® is a cholinesterase inhibitor approved for use in people with mild to moderately severe Alzheimer disease and Parkinson disease dementia. Namenda® is approved for the use of moderate-to-severe Alzheimer disease. Both medications slow cognitive and functional decline. Although some patients may see an improvement in symptoms, typically these medications' efficacy is measured by how they slow the rate of cognitive and functional decline.

Indie: My father has been taking two Alzheimer disease drugs for over one year, Namenda® (memantine hydrochloride) and Aricept® (donepezil hydrochloride). Everything I have read said they are only effective for six to 12 months. I see no difference since he started them. Should he take them indefinitely?

Cleveland_Clinic_Physician: The goal of these medications is to slow cognitive and functional decline, so we usually do not see an improvement in symptoms. This is definitely frustrating for you, the patient and us. The medications tend to have the most effect (again for slowing the decline) for two to three years, but there has been benefit in keeping people on these medications even longer. It is a personal choice as to whether to continue to take these medications indefinitely. Several considerations should be made, including financial, quality of life (taking many medications) and adverse effects. It is not uncommon for patients to be taken off of these medications if they are in hospice care, for example.

Alzheimer Disease Medication Functions

leb215: If those medications are slowing down the rate of decline, does it mean that they are also extending a person's life?

Cleveland_Clinic_Physician: Very good question, and one that the field is somewhat divided on. There are some studies that have shown no difference in survival time, and some that suggest that they do prolong a person's life.

tubbs: How long will my medication stabilize or lessen my symptoms?

Cleveland_Clinic_Physician: Generally, the biggest effect is seen for two to three years with perhaps some milder benefits after that time frame.

Long-term Effects of Anesthesia and Other Medications

tvidovic: What are the effects of anesthesia and long-term pain medication on memory? I remember reading a study on the long-term effects of anesthesia for open heart surgery in the elderly out of Duke University. Are there any studies on the effects on the younger population?

Cleveland_Clinic_Physician: There are probably multiple components to the answer to your question. We often see cognitive side effects in people following anesthesia. Whether it is from the anesthesia, the surgery or the underlying condition prompting these effects is often hard to tell. We do try to limit general anesthesia and sedating pain medications (opioids) in this population because it can affect memory. However, severe pain will also cause memory problems, so there is a balancing act to be made. I am not aware of any specific studies addressing the young-onset dementia population. Another unanswered question is whether or not anesthesia is a risk factor itself for the later development of dementia.

MaryAnnFW: How often do the many medications that might be prescribed for various medical reasons in someone younger 65 years old play a role in dementia symptoms? When there are many doctors involved, who should be the doctor to monitor the interaction of the chemistry of the drugs when a person is on various medications? How often is consideration given that medications could be the factor causing the dementia?

Cleveland_Clinic_Physician: I once had a resident remark that ‘We don't prescribe much in this clinic,’ which is a compliment for me. We take a lot of medications away for the reason that a lot of them can cause memory problems. So, we need to assess if they are truly needed and if they are the best medication for the person with a memory problem from the initial appointment onwards. It is difficult, but if the primary care physician is having trouble with this role, many times a geriatrics-trained physician can be helpful with monitoring these medication interactions and side effects.

Nutritional Supplements

esther9: Will taking a multivitamin every day prevent young-onset Alzheimer disease? How much vitamin E do we need to protect our brain cells?

Cleveland_Clinic_Physician: Taking a multivitamin may help prevent vitamin deficiencies that can cause memory problems or dementia. For those living in the Ohio area, many of us are vitamin D deficient because of the lack of sunlight here so many people need to take vitamin D supplements. You can take too much vitamin E, so please check with your physician before taking supplements besides a multivitamin for vitamin E.

Indie: Can you comment on the effectiveness of coconut oil in treating Alzheimer disease symptoms? Should I consider this since my mother died of Alzheimer disease and my father is in early stages?

Cleveland_Clinic_Physician: Unfortunately, we cannot because there is scant data available on its effectiveness. Data on its use is anecdotal. It is thought to help raise the body's source of ketones, which may serve as a energy reserve to help with some of the symptoms of Alzheimer disease. This is similar in theory to how the medical food Axona® works, which is approved for use in patients with mild-to-moderate Alzheimer disease. Studies of Axona® showed better glucose metabolism in the brain in subjects that consumed the food. Coconut oil generally raises high density lipoprotein (HDL), the so-called ‘good cholesterol’, so it may be helpful in that regard as well. You should discuss using coconut oil or Axona® with your physician first and ensure that you are getting your cholesterol levels checked regularly.

Lifestyle and Dementia

lfletcher3: Does drinking wine will increase dementia?

Cleveland_Clinic_Physician: Drinking wine to excess (or any alcohol for that matter) can cause dementia either through the toxic effects of alcohol itself or through vitamin deficiencies seen in people who consume a lot of alcohol. There is a ‘U’-shaped curve seen with the effects of alcohol on cognition in those who don't drink and in those who drink too much (i.e., having the most cognitive problems). We recommend that men drink no more than two glasses (5 oz) of wine per day and women drink no more than one glass of wine per day.

jlow: Can smoking contribute to dementia?

Cleveland_Clinic_Physician: Smoking is a risk factor for developing dementia and stopping smoking is strongly encouraged to cut down on the risk of dementia and other associated healthcare problems. Plus, smokers who quit experience an immediate improvement in memory!

Appointing a Power of Attorney

kylev: When should I appoint a power of attorney?

Cleveland_Clinic_Physician: There are two types of power of attorney (POA)—healthcare and financial. We should all have either a healthcare POA or a living will. The healthcare POA allows us to appoint someone to make medical decisions for us if you are not able to do so. A living will is more of an algorithm of what you would want should you not be able to make these decisions. Sometimes this can be troublesome as things do not always happen as we expect, so I usually encourage people to get a healthcare POA. In Ohio, you can do a healthcare POA without the need of an attorney. Again, we all should have one. A financial POA is when someone manages your finances for you when you are not able to do so. I encourage this to happen when it appears that the person has a cognitive problem that is worsening. If the individual has the capacity to select who the POA will be (e.g., family member) as determined by the physician, this is the best solution as it is easier and gives the patient some autonomy and say into his or her decisions. If one waits too long and they do not have capacity to choose a POA, then guardianship has to be pursued, which is done through the court system.

Social Security Benefits for Young-Onset Alzheimer Disease

lindsey: Can I get Social Security if I have young-onset Alzheimer disease?

Cleveland_Clinic_Physician: This is something that we try to address with everyone who comes in with young-onset dementia in our clinic. Not only are most people with young-onset dementia eligible for Social Security Disability Insurance (SSDI), but they also may be eligible for a ‘fast-track’ process called 'Compassionate Allowances'. Usually there is a two-year waiting period between being approved for SSDI and then receiving the benefits. Compassionate Allowances removes this waiting period. Once approved, the individual is then eligible for Medicare (with a wait period) or Medicaid (would be immediate if eligible). The Alzheimer's Association has an excellent guide to SSDI and Compassionate Allowances.

The diagnoses eligible for Compassionate Allowances include young-onset Alzheimer disease, frontotemporal dementia, Creutzfeldt-Jakob disease, progressive supranuclear palsy and many more.

Support Services

KEMKH: For those with young-onset dementia, what programs in your area will provide them and loved ones with compensatory strategies to facilitate recall and proactive safety recommendations?

Cleveland_Clinic_Physician: See the aforementioned question regarding cognitive rehabilitation and cognitive training programs. Occupational therapy departments can conduct safety evaluations, including driving evaluations and home safety evaluations (making sure your home is set up in a safe manner). There are also various support groups that we recommend such as those offered through the local Alzheimer's Association. The Cleveland chapter offers early-onset (defined as early in the disease course) support groups for the patient and their caregiver as well as a support group specific to frontotemporal dementia (which tends to be a younger form of dementia). The central Ohio chapter also offers young-onset dementia support groups and a frontotemporal dementia support group. Some chapters offer support groups for children and teens with an affected parent as well.

grammol: Is there a support group in the Akron area that can help family and friends understand the complications their dear one is going through? A program that might let them know how to respond to their needs, etc.? Through no fault of their own, these patients suffer and they know they are having difficulty remembering. How can we say, "Honey, it's o.k."—what can we do?

Cleveland_Clinic_Physician: Both the Cleveland and Central Ohio chapters of the Alzheimer's Association offer support groups and training sessions for caregivers. I would highly suggest that you contact them for further information on these services.

The Alzheimer's Association also has a 24-hour helpline available. You may contact them toll-free at 1.800.272.3900.


Cleveland_Clinic_Host: I'm sorry to say that our time with a Cleveland Clinic expert has come to a close. Thank you for taking your time to answer our questions today about young-onset dementia.

Cleveland_Clinic_Physician: Thank you for attending the web chat. Although the stigma of dementia itself is slowly being addressed in today's society, this is somewhat lagging with regard to young-onset dementia (i.e., in individuals younger than 65 years of age). Remember that dementia is a symptom, implying problems with cognition (e.g., memory) that affects day-to-day functioning. Like the person who comes in to the emergency room with chest pain, the important thing is to figure out the cause of the symptom (i.e., with that symptom there may be a heart attack, pneumonia or pulled muscle), since that will determine the prognosis and treatment approach. Many different things can cause dementia, especially in younger people. The list of possible causes includes thyroid problems, depression, autoimmune diseases, and progressive brain diseases like Alzheimer disease. If you or someone close to you notices that there has been a change in your thinking and/or memory, you should see a doctor to see if one of these conditions is causing your symptoms. We are always accepting new patients and would be happy to see you as well.

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Reviewed: 12/13