The Dartmouth Memory Handbook

Section 6: Treatment


Daniel R. Bateman, M.D. and Robert B. Santulli, M.D.
revised September, 2016

Note: The information presented here is not intended as a substitute for careful pharmacological recommendations formulated by an experienced clinician after a careful evaluation of the individual patient.

FDA Approval of New Drugs:

The Food and Drug Administration regulates all prescription and non-prescription (over the counter) drugs in the United States. Given how many new drugs are being studied to treat Alzheimer’s disease and other dementias it is helpful to have a better understanding of the FDA drug approval process.

Before human testing, new drugs undergo laboratory tests and animal tests. Next, the drug goes through Phase I testing, where a small number of humans (20-80) receive the drug, and researchers evaluate the drug safety, determine a safe dosage range and side effects. In Phase II trials, the drug is tested in a larger group of people (100-300) with the disease process. During this phase researchers measure effectiveness and drug safety.

Often a placebo is included in these trials. If the drug passes Phase II trials, it moves on to Phase III trial, where effectiveness and safety of the medication is confirmed in an even larger population (1000-3000). The FDA uses the results of these trials, and information on benefits and safety risks, to determine whether the drug goes to market.

After the drug receives FDA approval, Phase IV trials, or post market testing occurs. In Phase IV trials more information is gathered on the safety of long-term use and effectiveness in different populations (NIH U.S. Library of Medicine).

Pharmaceutical companies have spent billions of dollars trying to develop new drugs that treat Alzheimer’s disease and other dementias. Many times in Phase II trials these new drugs look promising, only to disappoint researchers and the public when they show no effect in larger Phase III trials. Despite these disappointments scientists and researchers push on to find a cure for this difficult illness.

Anti-Dementia Medications:

The FDA has approved five medications for treating the cognitive and functional symptoms of Alzheimer’s disease. The newest medication Namzaric is a combination pill of two previously approved medications.

Donepezil (brand name = Aricept) Approved in 1997; a cholinesterase inhibitor. It is approved for mild, moderate, and severe Alzheimer’s disease.

Generic formulations are available in the U.S.

Rivastigmine (brand name = Exelon) Approved in 2000; a cholinesterase inhibitor. It is also approved for mild, moderate and severe Alzheimer’s disease. It is also the only cholinesterase inhibitor approved for dementia associated with Parkinson’s disease. In 2007, rivastigmine was released in a transdermal (skin patch) form, in addition to oral preparations. Generic versions of the oral and transdermal patch are now available in the U.S.

Galantamine (brand name = Razadyne) Approved in 2001; a cholinesterase inhibitor. It is approved for mild to moderate Alzheimer’s disease. A generic formulation is available in the U.S.

Memantine (brand name = Namenda) Approved in 2004; an NMDA inhibitor.

It is approved for moderate to severe Alzheimer’s disease. A generic formulation is available in the U.S. In 2010, the FDA approved Namenda XR, a longer acting version of memantine.

Memantine/Donepezil Combination (brand name = Namzaric) Approved in 2014; the NMDA inhibitor memantine in the Namenda XR is combined with the cholinesterase inhibitor donepezil into a once daily capsule. It is approved for moderate to severe Alzheimer’s disease.

Cholinesterase Inhibitors:

Donepezil, rivastigmine and galantamine are cholinesterase inhibitors. These medications exert their effect, at least in part, by inhibiting (blocking) the action of the enzyme acetylcholinesterase. Enzymes break down proteins, and acetylcholinesterase breaks down the protein acetylcholine. Acetylcholine is a neurotransmitter (chemical messenger) which operates at the synapse (junction) of one nerve cell to the next, permitting the transmission of a nerve impulse through the brain. There are many neurotransmitters in the brain, but acetylcholine is a critical one in those areas of the brain that are concerned with learning and memory. In Alzheimer’s disease, Lewy body dementia and some other dementias there is a significant loss of this neurotransmitter, and therefore these learning and memory circuits are unable to function normally.

Acetylcholine cannot be ingested, as it would be inactivated or destroyed before it reached the nervous system. Therefore, the only way to increase acetylcholine levels is to interfere with the normal metabolic breakdown of this neurotransmitter (by blocking acetylcholinesterase).

While a greatly diminished supply of acetylcholine is a cardinal feature of Alzheimer’s disease, it is only one of aspect of the very complex pathology of the disease. For this reason, raising acetylcholine by giving cholinesterase inhibitors is often somewhat helpful, but it does not stop or modify the underlying disease process. However, these medications can help provide some improvement in cognition (memory and thinking) and function for people with Alzheimer’s disease.

One meta-analysis, a large review study that combines the results of other trials, found the three FDA approved cholinesterase inhibitors to be equally effective (Birks 2006).

However, some patients may respond better to one over another, for unexplained reasons.

One recent study showed that if a patient does not benefit from a current cholinesterase inhibitor that there may be benefit in switching to a different cholinesterase inhibitor (Cagnin 2015). During the medication changeover period the first cholinesterase inhibitor must be stopped completely before starting a second. This can be disruptive, and lead to some (at least temporary) hastening of cognitive decline.

Side Effects of Cholinesterase Inhibitors

Overall, cholinesterase inhibitors are safe and reasonably well tolerated when taken according to the guidelines given below. The most common side effects of cholinesterase inhibitors are gastrointestinal: nausea, diarrhea, gastrointestinal distress, loss of appetite, weight loss, queasiness, a feeling of bloating or gas, or vomiting. These side effects can be lessened or avoided by giving low doses initially, and taking the medication on a full stomach, with or following a meal. A small percentage of individuals are unable to tolerate the gastrointestinal side effects of the medication. For some patients, GI side effects can be lessened if memantine is given first, as it can offset the gastrointestinal hyperactivity caused by the cholinesterase inhibitor. If a patient already has problems with appetite or with keeping weight on, the patient might want to avoid cholinesterase inhibitors as they can make these symptoms worse.

Other less common side effects are leg cramps, which come irregularly, but often when in bed. Other side effects include vivid dreams, or even nightmares. Nightmares can be frequent and disturbing enough to consider terminating the medication, but this is rare.

Sometimes the medication will also increase the frequency of urination. This can also be disruptive to sleep. Occasionally, giving the medication in the morning (assuming the person is taking it orally) may lessen or prevent the development of nightmares and nighttime urination.

Other possible side effects include insomnia, dizziness, exacerbation of asthma or COPD, and rhinorrhea (runny nose).

On rare occasions those with a history of bipolar disorder, traumatic brain injury or stroke can develop mania (Hategan 2016). Mania is an abnormal episode of mood, where people are either exuberant or irritable, have high amounts of energy and do impulsive things.

Slowed Heart Rate (Bradycardia)

It is critical to note that cholinesterase inhibitors can lower heart rate, and may need to be avoided if there is a cardiac conduction disturbance or a very slow heart rate. The risks of slowing the heart excessively are dizziness, syncope (passing out), falls, heart attack or stroke.

If a dose is missed, it should be skipped. If the medication is stopped for any reason for more than a week, it may be necessary to resume at a lower dose, initially.

Rivastigmine Patch

As noted above, one of the cholinesterase inhibitors, rivastigmine, is available in a transdermal (skin patch) form. This patch is applied to the chest, upper arm or back once a day. There is a lower level of gastrointestinal side effects with rivastigmine patch, compared to the oral agents, although these are still possible. However, rivastigmine transdermal may be a good choice for someone who is unable to tolerate an oral medication because of those side effects. It may be preferred by a patient who dislikes taking pills, or is unable to do so. Skin rash can develop, but is not common.

A generic version of the rivastigmine patch was approved by the FDA in 2015.

N-Methyl-D-Aspartate (NMDA) Receptor Antagonists Memantine is the only NMDA receptor antagonist currently available for the treatment of Alzheimer’s disease. This is available in generic form as memantine or in the brand name Namenda XR. Memantine works by a complex mechanism of action that reduces glutamatergic excitotoxicity in the neuron. This mode of action is completely different from that of the cholinesterase inhibitors, which is why it is possible and often desirable to give both memantine and a cholinesterase inhibitor at the same time.

While cholinesterase inhibitors exert their effect on those neurons that utilize acetylcholine, memantine acts on a different neurotransmitter, glutamate. The glutamate system is critically important, especially in the learning and memory areas of the brain. Memantine lessens the effect of excess glutamate (a condition which occurs when there are damaged brain cells) at those synapses that utilize the NMDA receptor.

This facilitates more effective transmission of neural impulses. Memantine may also help preserve the life of neurons, by limiting the excessive flow of calcium into nerve cells.

The FDA has approved Memantine for moderate to severe Alzheimer’s disease.

Memantine Side Effects

Memantine has few side effects, compared to the cholinesterase inhibitors. It can be mildly constipating, and this effect can offset the GI hyperactivity caused by cholinesterase inhibitors, lessening the incidence of diarrhea or other GI side effects.

Other adverse effects which can occur are headache; dizziness; somnolence, and, occasionally, worsened confusion or agitation. These latter effects are usually quite short-lived, but can be unsettling for the caregiver. Temporarily lowering the dose will frequently improve the situation.

Memantine is not significantly metabolized by the liver, but excreted essentially unchanged by the kidneys. Therefore, individuals with significant impairment of kidney function may need to take a lower dose. Persons with renal failure (not on dialysis) probably should not use memantine at all, although this should be discussed with the physician.

There are few drug interactions, but other medications that also act on the NMDA receptor should not be taken at the same time. This includes amantadine (Symmetrel); rimantadine (Flumadine), Ketamine, and methadone. Other opiates are permissible.

Over-the-counter cough preparations that contain dextromethorphan should be avoided as dextromethorphan is also an NMDA inhibitor.

In 2010, Nuedexta, a combination medication of dextromethorphan and quinidine, was approved by the FDA to approve to treat pseudobulbar affect. Pseudobulbar affect is a condition in which patients have involuntary, and sudden crying or laughing. These symptoms often do not match the patent’s emotions or the patient’s intensity of emotion (Wortzel 2008). Pseudobulbar affect can be seen in a number of different neurologic conditions including: Alzheimer’s disease, Parkinson’s disease, traumatic brain injury, multiple sclerosis, stroke and amyotrophic lateral sclerosis.

It is unclear whether memantine can be safely taken in combination with Nuedexta. Both of these medications work on the NMDA receptor. One study of 52 healthy subjects, showed that people had more adverse events (side effects) if they took the combination of Nuedexta and memantine together in comparison to memantine alone. There were no serious adverse events (side effects) or deaths in the groups that took both medications together (Pope 2012). Still, this study was done in healthy subjects and not in people with Alzheimer’s disease. Patients and caregivers should talk to the patient’s doctor about risks and benefits before a patient with Alzheimer’s disease already on memantine starts Nuedexta.

What to Expect from Anti-Dementia Medications:

Slowing the Decline

There is no cure for Alzheimer’s disease, or for most other types of dementia. Most forms of dementia, in particular Alzheimer’s disease, are progressive: from the time they begin, until the time of death, they relentlessly worsen. In general, the overall effect of anti-dementia medications is to slow the decline of the disease.

Degree of Effectiveness

Overall, the effect of these medications is relatively modest. Some individuals have a very positive response, with improvement in symptoms for some time; others have a noticeable, but not dramatic response; some appear to have little if any benefit; and some individuals seem to have no discernible response to the drugs, at all. There is absolutely no way to tell, ahead of time, who will respond very well to the medications, and who will not.

Several large observational studies found that those with Alzheimer’s disease who had a positive response to cholinesterase inhibitors, tolerated higher doses, and longer duration of therapy, lived longer than others (Wattmo 2014, 2015). These medications may also help keep people cognitively well longer, more functional longer, and with a better overall quality of life.

The limited effects of anti-dementia medications has led to debate as to whether or not it is “worth it” to use these drugs. However, since it is not possible to tell, ahead of time, if a particular individual will have a robust response to anti-dementia medication, an average (modest) response, or no discernible response, it would seem that consideration should at least be given to have an adequate therapeutic trial, if the cost can be managed, and there are no or minimal side effects. Most patients and families feel that any intervention which may slow down this devastating disease process is certainly at least worth trying. Everyone agrees that more effective medications need to be developed.

Medication Dosage

In the past five years, we have seen the FDA approve higher dosages of several of the cholinesterase inhibitor medications. Aricept (donepezil) 23mg was approved by the FDA in 2010, the same year that the original patent for Aricept expired. The previous FDA approved dosage maximum for donepezil was 10mg/day. This new approval was not without controversy (Schwartz 2012). The FDA previously stated that to approve a new drug or dosage for Alzheimer’s disease that there would need to be improvements both in cognition (memory and thinking) and in a global (overall) measure. Aricept 23mg showed some small statistical improvement in cognition, but no improvement in a global measure (Farlow 2010). Despite this, the FDA approved the medication. A subsequent study found that patients with more advanced Alzheimer’s disease had stronger responses to Aricept 23mg/day then patients with more mild illness. It should be noted that there was a clear increase in side effects in the patients who took Aricept 23mg.

The FDA approved a new dose of the rivastigmine transdermal patch to 13.3mg/day in 2012. Previously approved doses were 4.6mg/day and 9.5mg/day. Studies have shown that the higher dose of 13.3mg/day was associated with better cognitive scores and improvements in global status (Farlow 2015, Isaacson 2016). One study with over 1,500 patients showed a mild increase in side effects in the 13.3mg/patch versus the 9.5mg/patch (Cummings 2012).

Effects on Mood and Behavior

In addition to the benefit to cognition (memory and thinking) and general functioning, for some individuals anti-dementia medications may be helpful in lessening the emergence or severity of mood and behavioral symptoms that eventually occur in nearly all persons with Alzheimer’s disease (See the mood and behavioral symptoms in Alzheimer’s disease and other dementias section for a more complete discussion).

Duration of Benefit

Anti-dementia medications tend to have a peak effect in 2 -3 months after reaching a therapeutic dose. The myth that the medications cease to work after a year and should be stopped at that point is entirely false. This impression is based on the fact that the early studies of cholinesterase inhibitors demonstrated a gain in cognitive ability initially, with a gradual decline thereafter, with the patient returning to baseline in about one year.

Those subjects who were given an inactive placebo were significantly worse at the end of that year, however, making it clear that being no better, but no worse, after one year is actually an important therapeutic effect in a progressive illness such as Alzheimer’s.

More recent studies have shown that anti-dementia medications can continue to help slow the decline of cognition (memory and thinking) and function in patients with Alzheimer’s disease in the moderate to severe stages of illness.

How to Know if the Medication is Working

Sometimes, it is obvious; the patient is sharper, more attentive, and more interactive.

He or she remembers better, is able to perform tasks that could not be performed before, and seems overall to have more initiative. While one always hopes for such a positive effect, this occurs probably less than half the time, unfortunately. More frequently, there may be some slight gains noted, initially, which seem to fade; or there seems to be no discernible benefit whatsoever. In this latter situation, the medication may be slowing down the progression of the disease, or may be having little or no effect at all. Unfortunately there is no way to be sure about this over any short period of time.

Ideally a person with Alzheimer’s disease should take anti-dementia medications for a minimum of six months to one year, in order to adequately assess the overall effectiveness of the treatment. At the end of this time, if the medication is having the desired effect, there should be little or no overall decline in the person’s condition. In untreated cases of Alzheimer’s disease, and some other dementias, untreated patients are noticeably worse after six months to a year. If someone has been taking both a cholinesterase inhibitor and memantine, the improvement is likely due to the combination, and it may be impossible to sort out which has been more helpful.

Determining whether or not the medication has been helping can be difficult and should be done in consultation with the prescribing clinician.

Combination Therapy

The most recent review studies (meta-analyses) that combine the data from many trials have found that a combination of a cholinesterase inhibitor (donepezil, galantamine or rivastigmine) plus memantine provides at least some significant benefit in slowing the decline of cognition and function in patients with moderate to severe Alzheimer’s disease (Muayqil 2012, Schmidt 2015). In general, use of combination therapy is a very common clinical practice.

What Medication is Best?

As noted above, there is no evidence that any of the three available cholinesterase inhibitors is better than the others, although individual patients may occasionally seem to respond better to one over another, for unclear reasons

There are no studies comparing the relative effectiveness of memantine and the cholinesterase inhibitors.

Discontinuing Anti-Dementia Medications

While it is often sensible to continue these medications for a number of years, once the individual reaches the late stages of dementia, it may be reasonable to discontinue antidementia medications. Often such a decision can be prompted by difficulties in swallowing, challenges in getting the patient to take the medication and or indications that the patient no longer has any meaningful awareness of his or her surroundings or interactions with others. If a decision is made to discontinue anti-dementia medications at any point, this should be done in consultation with the clinician. If the individual is on both a cholinesterase inhibitor and memantine, only one medication should be stopped at a time, watching for any unexpected or untoward effects. Obvious clinical worsening can occur within two weeks of stopping an anti-dementia medication, even when all were convinced that the drug was no longer having any meaningful effect. If there is a loss of cognitive or functional abilities after discontinuing a medication, this decline can usually be stabilized by restarting the medication immediately. However, the abilities that have been lost may or may not be regained. More studies are needed in researching how anti-dementia medications can be effectively and safely discontinued.


Question: What are clinical trial phases? FAQ – Clinical Trial Phases.

National Institutes of Health U.S. National Library of Medicine URL:, 2008

What is the approval process for a new prescription drug? FDA: U.S. Food and Drug Administration.

URL:, 2016 Birks JS. Cholinesterase inhibitors for Alzheimer’s disease. Cochrane Database of Systematic Reviews Issue 1. Art. No.: CD005593, 2006

Cagnin, A., Cester, A., Costa, B. et al. Neurol Sci 36: 457, 2015 Cummings J, Froelich L, Black SE, et al. Randomized, double-blind, parallel-group, 48week study for efficacy and safety of a higher-dose rivastigmine patch (15 vs 10 cm2) in Alzheimer’s disease. Dement Geriatr Cogn Disord.;3 3(5):341–353, 2012.

Farlow M. R., Salloway, S., Tariot, P. N., Yardley, J., Moline, M. L., Wang, Q., … Satlin, A. Effectiveness and Tolerability of High-Dose (23 mg/d) Versus Standard-Dose (10 mg/d) Donepezil in Moderate to Severe Alzheimer’s Disease: A 24-Week, Randomized, Double-Blind Study. Clinical Therapeutics, 32(7), 1234–1251. 2010 Farlow, M. R., Sadowsky, C. H., Velting, D. M., Meng, X. and Islam, M. Z: Evaluating Response to High-Dose 13.3 mg/24 h Rivastigmine Patch in Patients with Severe Alzheimer’s Disease. CNS Neurosci Ther, 21: 513–519, 2015

Hategan, A., & Bourgeois, J. A. Donepezil-associated manic episode with psychotic features: a case report and review of the literature. General Hospital Psychiatry 38, 115.e111-115.e114, 2016

Howard, R., McShane , R., Lindesay , J., Ritchie , C., Baldwin , A., Barber , R., Phillips , P. Donepezil and Memantine for Moderate-to-Severe Alzheimer’s Disease. New England Journal of Medicine, 366(10), 893-903, 2012

Isaacson, R. S., Ferris, S., Velting, D. M., and Meng, X. Cognitive Efficacy (SIB) of 13.3 Versus 4.6 mg/24 h Rivastigmine Patch in Severe Alzheimer’s Disease Am J Alzheimer’s dis other demen 31: 270-277, 2016

Muayqil, T., & Camicioli, R.: Systematic Review and Meta-Analysis of Combination Therapy with Cholinesterase Inhibitors and Memantine in Alzheimer’s Disease and Other Dementias. Dementia and Geriatric Cognitive Disorders EXTRA, 2(1), 546–572, 2012

Pope, L.E., Schoedel, K.A., Bartlett, C. et al: A study of potential pharmacokinetic and pharmacodynamic interactions between dextromethorphan/quinidine and memantine in healthy volunteers. Clin Drug Invest 32: e1, 2012

Sabbagh, M., Cummings, J., Christensen, D., et al: Evaluating the cognitive effects of donepezil 23$mg/d in moderate and severe Alzheimer’s disease: analysis of effects of baseline features on treatment response. BMC Geriatrics, 13, 56, 2013 Sadowsky, C. H., Micca, J. L., Grossberg, G. T., & Velting, D. M.: Rivastigmine from Capsules to Patch: Therapeutic Advances in the Management of Alzheimer’s Disease and Parkinson’s Disease Dementia. The Primary Care Companion for CNS Disorders, 16(5), 2014

Schmidt, R., Hofer, E., Bouwman, F. H., Buerger, K., Cordonnier, C., Fladby, T., Galimberti, D., Georges, J., Heneka, M. T., Hort, J., Lacz—, J., Molinuevo, J. L., O’Brien, J. T., Religa, D., Scheltens, P., Schott, J. M. and Sorbi, S: EFNS-ENS/EAN Guideline on concomitant use of cholinesterase inhibitors and memantine in moderate to severe Alzheimer’s disease. Eur J Neurol, 22: 889–898, 2015

Schwartz L. M., Woloshin, S. How the FDA forgot the evidence: the case of donepezil 23mg BMJ; 344:e1086, 2012

Wattmo, C., Londos, E., & Minthon, L: Response to cholinesterase inhibitors affects lifespan in Alzheimer’s disease. BMC Neurology, 14, 173, 2014 Wattmo C, Londos E, Minthon L, Risk Factors That Affect Life Expectancy in Alzheimer’s Disease: A 15-Year Follow-Up. Dement Geriatr Cogn Disord 38:286-299, 2014 Wattmo C, Londos E, Minthon L, Longitudinal Associations between Survival in Alzheimer’s Disease and Cholinesterase Inhibitor Use, Progression, and CommunityBased Services. Dement Geriatr Cogn Disord 40:297-310, 2015

Wortzel HS, Oster TK, Anderson CA, Arciniegas DB. Pathological laughing and crying: epidemiology, pathophysiology and treatment. CNS drugs 22(7):531-545, 2008



Daniel R. Bateman, M.D. and Robert B. Santulli, M.D.
(Revised September 2016)


In addition to anti-dementia medications (donepezil; galantamine; rivastigmine; memantine), there are a number of other interventions to consider for the person who is suffering with dementia. Some scientists believe that the interventions below may be beneficial. While most of the treatments in this chapter may not improve memory or other cognitive abilities, they may slow cognitive decline as well as benefit general health and improve overall quality of life.

It is very important to check with one’s doctor before pursuing any of these recommendations, to be sure that they are right for the particular individual.

Maintaining General Health

There are a number of general health considerations that have been shown to be associated with a decreased risk of developing dementia. Mostly these promote cardiovascular health. To the extent that these interventions decrease the risk of stroke or heart attack, they are very valuable for the person who already has dementia, since strokes and heart attacks can significantly worsen cognition for someone with dementia.

These recommendations include keeping cholesterol, blood pressure, and blood sugar in control, and avoiding obesity.


Accumulating evidence suggests that following a Mediterranean diet can slow cognitive decline. According to the Mayo Clinic, the Mediterranean diet calls for eating large amounts of fruits and vegetables; using healthy fats such as olive oil; eating small portions of nuts; drinking red wine, in moderation; minimizing the consumption of red meat; and eating fish on a frequent basis (Mayo Clinic 2016). The Mediterranean diet may also lower the mortality risk of those who already have Alzheimer’s disease.

Scientists showed in 2015 that adherence to the MIND Diet (Mediterranean-DASH Intervention for Neurodegenerative delay) lowered rates of Alzheimer’s disease (Morris 2015). The MIND diet combines the Mediterranean diet and the DASH diet. The DASH diet stands for Dietary Approaches to Stop Hypertension. The DASH diet includes reducing sodium intake, and increasing intake of food rich in potassium, calcium and magnesium. The RUSH University study of 923 adults showed that those who strictly followed the MIND diet had a 53% reduction in the rate of AD and those who moderately adhered to the MIND diet had a 35% reduction in their rate of AD (Morris 2015).

There is some suggestive evidence as well that a diet rich in antioxidants such as those found in many fruits and vegetables may be helpful in slowing the rate of disease progression.

The MIND Diet Components

Healthy Brain

(10 components)

• Green leafy vegetables

• Other vegetables

• Nuts

• Berries

• Beans

• Whole grains

• Fish

• Poultry

• Olive oil

• Wine

Recommended Foods

Everyday eat at least three servings of whole

grains, one salad, one other vegetable and one

glass of red wine.

Use nuts as a snack almost daily and beans as a

snack every other day.

Eat poultry at least twice weekly.

Eat fish at least once a week.

Blueberries are particularly good at slowing

cognitive decline.

Unhealthy Brain

(5 components)

• Red meats

• Butter and stick margarine

• Cheese

• Pastries and sweets

• Fried or fast food

Foods to avoid

Limit butter to less than one tablespoon per day.

Limit servings of cheese, fried or fast food to one or

less of the three groups per week.

Medical Foods and Dietary Supplements:

The FDA defines a medical food as a food formulated to be administered under the supervision of a physician intended for specific dietary management of a disease or condition, where specific nutritional requirements are recognized by scientific principles and established by medical evaluation (FDA 2016). Three medical foods claim to have therapeutic benefits for people with Alzheimer’s disease: Axona¨, Souvenaid¨ and CerefolinNAC¨ (Thaipisuttikul 2012).

Axona¨, a medium chain triglyceride, was approved in 2009. The liver converts Axona¨ into ketones. Ketones are an alternative fuel to glucose for brain cells. When this product was studied in a large multi-centered placebo controlled trial there was no benefit in memory for the group receiving Axona¨ as compared to the group receiving placebo.

When the scientists did a sub-analysis, they found that patients who were negative for the APOE4 gene did have an improvement in cognition from Axona¨ (Sharma 2014).

However, the genetic testing is not commonly done, and so there is limited clinical use of Axona¨. Additionally, this medical food can cause mild diarrhea and flatulence.

Souvenaid¨, another medical food, contains nutrients, vitamins and other precursors that help make up membranes (outer cover) of brain cells. A large placebo controlled study with 527 participants with mild to moderate Alzheimer’s disease showed no benefit from this medical food (Shah 2013). Early results from a 2 year European study of those with Mild Cognitive Impairment (pre-dementia) from Alzheimer’s disease, suggest that there might be some benefit in function for those who took Souvenaid¨ (Soininen 2016).

As of 2016, Souvenaid¨ is being studied in clinical trials in the United States, but does not yet have FDA approval.

CerefolinNAC¨ contains Vitamin B12 (2 grams), L-methylfolate 5.6mg, and Nacetylcysteine 600mg (Thaipisuttikul 2012). It has an FDA approval as a medical food for prevention or treatment of nutritional deficiencies and metabolic abnormalities that can cause memory problems, Alzheimer’s disease and vascular dementia. There is evidence that CerefolinNAC¨ may reduce brain atrophy (shrinkage) in patients with a high blood level of the amino acid, homocysteine (Shankle 2016). It is not clear whether or not CerefolinNAC¨ would help people with Alzheimer’s disease who lack high homocysteine levels.

Overall, at this time there is limited data to support the use of medical foods to treat Alzheimer’s disease. There might be benefit for those with mild cognitive impairment, but this remains unclear.

Gingko Biloba

Gingko biloba is a widely used herb in Chinese medicine that is used to treat memory problems and dementia. Previously a large clinical trial showed that Gingko biloba did not offer any benefit to patients with Alzheimer’s disease or other types of dementia.

However, this may be a changing story; there is some new data on the subject. Two separate, meta-analyses (studies that combine the results of multiple clinical trials), independently found that the standardized Gingko biloba extract EGb761 at 240mg/day is able to slow or stabilize decline in patients with mild cognitive impairment (MCI), Alzheimer’s disease (AD) or vascular dementia with neuropsychiatric symptoms of dementia (Von Gunten 2015, Tan 2015). It appears that only patients with either MCI, AD or vascular dementia who have psychiatric symptoms benefit from this treatment.

Omega-3 Fatty Acid

Scientists have hoped that large doses of the omega-3 fatty acid DHA, which is found in cold-water fish and other foods, might slow the progression of Alzheimer’s disease.

Unfortunately, a large meta-analysis showed that omega-3 fatty acid is of little or no value to persons who already have Alzheimer’s disease (Burckhardt 2016). Some evidence suggests that, for people with normal cognition or mild cognitive impairment, weekly intake of fish and/or intake of omega-3 fatty acids may prevent the development of Alzheimer’s disease (Zhang 2015).

Vitamin D

A recent meta-analysis found that people who had Vitamin D deficiencies (low levels) had a 21 percent higher chance of developing AD than those with normal vitamin D levels (Shen 2015, Shoaib 2014).

B Vitamins

There are some who believe that taking various B vitamins, such as B6, B12, or folic acid (B9) may help slow the progression of Alzheimer’s or other dementias. However, a recent clinical trial found that those with mild to moderate Alzheimer’s disease progressed at the same rate whether they took high dose vitamin B supplements or placebo. There are a number of meta-analyses that show that vitamin B supplements do not slow cognitive decline (Wald 2010, Clarke 2014). An exception to this may be in people who have high homocysteine levels. Homocysteine is an amino acid and breakdown product of protein metabolism found to be associated with vascular dementia, Alzheimer’s disease and cardiovascular disease. One study showed that people with mild cognitive impairment and high homocysteine levels had less brain atrophy (brain shrinkage) if they were treated with B vitamins (Smith 2010).

On the other hand, there is sufficient information to show that vitamin B deficiencies (low levels) can cause memory problems. For this reason healthcare providers usually screen people with memory complaints for low vitamin B12 levels.

Vitamin E

Others feel that exogenous antioxidant vitamins, such as Vitamin E, may be helpful, but the evidence for this is inconclusive, and other studies and meta-analyses have shown that high doses of Vitamin E may be associated with an increased risk of death (Miller 2005). Based on this information it has been recommended that people not take greater than 400 IU of vitamin E per day. A large study of 769 people showed that the use of high dose Vitamin E (2000 IU/day) over three years did not reduce the rate of conversion of mild cognitive impairment to Alzheimer’s disease (Petersen 2005). On the other hand, another study of high dose vitamin E given to persons with Alzheimer’s disease did not improve cognition, but caused them to live somewhat longer (Pavlik 2010). Overall, the use of Vitamin E to prevent or treat AD remains highly controversial.

Other Nutrients and Supplements:

A variety of other agents, such as curcumin, phosphatidylserine, coenzyme Q, huperzine A, and coconut oil have been promoted, but no firm scientific evidence exists that these are helpful in preventing or treating Alzheimer’s disease.


Regular exercise, such as walking (if approved by one’s physician) is beneficial not only for general health and wellbeing, but lower’s one’s risk for developing Alzheimer’s disease. Physical activity and aerobic exercise have been shown to slow abnormal brain changes in people at risk for developing Alzheimer’s disease (Dougherty 2016).

Similarly, physical activity can also slow the rate of cognitive decline in those with Alzheimer’s disease and help treat neuropsychiatric symptoms of dementia, such as sun downing (Venturelli 2016).

Cognitive Activity

It is thought that pursuing cognitive activities is helpful in maintaining mental sharpness.

“Use it or lose it” is the phrase often given for this recommendation. Likewise, it seems important for the person with cognitive impairment to remain as cognitively engaged as possible, commensurate with his or her cognitive abilities. This would include reading; pursuing hobbies such as handwork, doing puzzles, playing games like “Jeopardy” on TV, and so forth. The exact type of activity is less important than that it be something that exercises the mind, and is enjoyable.

However, there is no value in trying to have someone with dementia pursue cognitive activities that are clearly beyond his or her abilities. This will lead to no improvement, but only frustration. It is also the case that persons with Alzheimer’s disease and other dementias are often quite content with considerably less activity of all kinds (physical and mental) than was previously the case, and it may be difficult or impossible to modify this (see the description of Apathy, page 127). Some activity (physical and mental) is clearly valuable, but it may be considerably less than the individual was accustomed to before he or she became demented, and less than the caregiver feels “ought” to take place.

Cognitive Training

There has been an increase in interest in cognitive training as a tool to improve mental sharpness. While this may be helpful, the data that such techniques are beneficial to those with Alzheimer’s disease is inconclusive. At the present, one cannot recommend investing in expensive computer equipment or software to try to improve the memory of someone with dementia. It is also important to realize that such activities can be too difficult for someone with significant cognitive impairment, and may simply be an exercise in frustration, or worse, another failure experience. At the same time, common sense would suggest that trying to help someone with mild Alzheimer’s with simple and enjoyable mind games or using one of the many books containing various mental exercises may have some usefulness, as long as the exercises are not beyond the capabilities of the person with the disease. Even if they have no lasting effect on cognition, they may be enjoyable, which is a value itself, and if they involve interaction with another, offer a social benefit as well.

Cholesterol Medications

Some studies have found that cholesterol–lowering medications (statins) may lower the risk of developing Alzheimer’s, but other studies have not found this to be true. These agents may, of course, be very useful in lessening the risk of cardiovascular disease in those who have elevated cholesterol. They should probably not be taken by those with normal cholesterol, hoping to help treat or prevent Alzheimer’s disease, because these medications can have adverse effects, and the evidence for helping with Alzheimer’s disease is equivocal (Samaras 2016)

Hormone Therapy

In the past, estrogen was recommended for both preventing and treating Alzheimer’s, but any benefit that may or may not be present is outweighed by the risks now recognized to be associated with this hormone treatment, and estrogen is no longer recommended for Alzheimer’s disease.

Non-steroidal anti-inflammatory medications (NSAIDS) Similarly, it was hoped that non-steroidal anti-inflammatory medications (NSAID’s) such as ibuprofen might lower the risk of developing Alzheimer’s. More recent studies have not found this to be true (Miguel-çlvarez 2015). Heavy use of NSAID’s may even increase, not decrease, the risk of developing Alzheimer’s disease.


Acupuncture has also been promoted as a treatment for Alzheimer’s, but again there is no definite scientific evidence that it is helpful for this condition.

Repetitive Transcranial Magnetic Stimulation (rTMS) Repetitive Transcranial Magnetic Stimulation (rTMS) involves the application of a metal coil with a changing magnetic field to the scalp of an individual thereby inducing an electrical current in neurocircuits of the brain. rTMS is a new technology and treatment in the field of psychiatry and neurology. It has been used to effectively treat major depressive disorder and post-traumatic stress disorder. When people receive rTMS, they sit in a dentist-like chair with the magnetic coil positioned on their scalp for 45 to 60 min at a time, once a day, 4 to 5 days a week for anywhere from 4 to 8 weeks. Of all the new treatments, rTMS may be the most exciting and hold the most promise. A recent meta-analysis, showed that when combining 7 studies of rTMS that included 94 patients with mild to moderate AD, there was significant improvement for those receiving high frequency rTMS (Liao 2015). At the time of this writing in 2016, clinical trials for rTMS treatment for Alzheimer’s disease are ongoing. The FDA has not yet approved the use of rTMS to treat AD.

Deep Brain Stimulation

Deep brain stimulation (DBS) involves the neurosurgical placement of electrodes within regions of the brain associated with the specific disease that the physicians are seeking to treat. These electrodes are then connected to a generator or battery pack that sits under the skin in the chest wall, and sends electrical waves at a specific frequency to the electrodes.

DBS has been used to treat a number of different neurologic and psychiatric disorders, including Parkinson’s disease, essential tremor, tic disorders, depression and obsessive-compulsive disorder. Scientists have recently investigated whether DBS might help people with Alzheimer’s disease. Initial results from a trial of 42 patients with mild AD, who underwent DBS placement into a part of the brain involved in the brain memory circuit, unfortunately did not lead to any improvement in cognition after 12 months (Lozano 2016).

Future Therapies and Clinical Trials

There are many new medications in various stages of research and development, although there have been a number of recent late stage failures.

Clinical trials are research studies in which new medications that have already been proven to be safe are tested for effectiveness. Up-to-date information about current clinical trials in Alzheimer’s disease and related disorders can be obtained by visiting the NIH Clinical Trials Website, In addition, the Alzheimer’s Association has a program called TrialMatch, a free service that helps people locate clinical trials based on personal criteria (diagnosis, stage of disease) and location. More information is available at the Alzheimer’s Association website, which is


Mayo Clinic Healthy Lifestyle, Nutrition and Healthy Eating. Article: Mediterranean Diet for Heart Health. Author: Mayo Clinic Staff. (URL: nutrition-and-healthy-eating/in-depth/mediterranean-diet/art-20047801 Accessed: September 11, 2016

Medical Foods Guidance Documents & Regulatory Information. FDA: U.S. Food and Drug Administration. URL: ormation/MedicalFoods/, 2016

Burckhardt M, Herke M, Wustmann T, Watzke S, Langer G, Fink A. Omega-3 fatty acids for the treatment of dementia. Cochrane Database of Systematic Reviews, Issue 4. Art.

No.: CD009002, 2016

Clarke R, Bennett D, Parish S, Lewington S, Skeaff M, et al. Effects of homocysteine lowering with B vitamins on cognitive aging: meta-analysis of 11 trials with cognitive data on 22,000 individuals. Am. J. Clin. Nutr. 100:657–66, 2014

Di Fiore N: Diet may help prevent Alzheimer’s: MIND diet rich in vegetables, berries, whole grains, nuts. Rush University Medical Center website. Accessed: September 11, 2016.

Dougherty, R. J., Ellingson, L. D., Schultz, S. A., et al: Meeting physical activity recommendations may be protective against temporal lobe atrophy in older adults at risk for Alzheimer’s disease. Alzheimer’s & Dementia!: Diagnosis, Assessment & Disease Monitoring, 4, 14–17, 2016

Liao X, Li G, Wang A, Liu T, Feng S, Guo Z, et al. Repetitive Transcranial Magnetic Stimulation as an Alternative Therapy for Cognitive Impairment in Alzheimer’s Disease: A Meta-Analysis. J Alzheimers Dis.. September 9; 48(2):463–72, 2015 Lozano, A.M., Fosdick, L., Chakravarty, M.M., et al: A Phase II Study of Fornix Deep Brain Stimulation in Mild Alzheimer’s Disease. J Alzheimers Dis 54(2):777-87. doi: 10.3233/JAD-160017, 2016

Marcason, W. What Are the Components to the MIND Diet? Journal of the Academy of Nutrition and Dietetics, Volume 115 (10), 1744, 2015

Miguel-çlvarez, M., Santos-Lozano, A., Sanchis-Gomar, F et al: Non-steroidal antiinflammatory drugs as a treatment for Alzheimer’s disease: a systematic review and meta-analysis of treatment effect. Drugs Aging 32(2):139-47, 2015 Miller ER, 3rd, Pastor-Barriuso R, Dalal D, Riemersma RA, Appel LJ, Guallar E. Metaanalysis: high-dosage vitamin E supplementation may increase all-cause mortality. Ann Intern Med.; 142:37–46, 2015

Morris MC, Tangney CC, Wang Y, Sacks FM, Bennett DA, Aggarwal NT. MIND diet associated with reduced incidence of Alzheimer’s disease. Alzheimer’s & Dementia, 11 (9), 1007-1014, 2015

Pavlik VN, Doody RS, Rountree SD, Darby EJ. Vitamin E Use Is Associated with Improved Survival in an Alzheimer’s Disease Cohort. Dementia and Geriatric Cognitive Disorders. 28(6):536-540, 2010

Petersen R.C., Thomas R.G., Grundman M., Bennett D., Doody R., Ferris S., Galasko D., Jin S., Kaye J., Levey A., et al. Vitamin E and donepezil for the treatment of mild cognitive impairment. N. Engl. J. Med. 352:2379–2388, 2005

Samaras, K., Brodaty, H., Sachdev, P.S. Does statin use cause memory decline in the elderly? Trends in Cardiovascular Medicine 26 (6), 550-565, ISSN 1050-1738, 2016 Scheltens, Philip et al. ‘Efficacy of Souvenaid in Mild Alzheimer’s Disease: Results from a Randomized, Controlled Trial’. J Alzheimer’s Disease 31(1): 225 – 236, 2012 Shah, R. C., Kamphuis, P. J., Leurgans, S., et al: The S-Connect study: results from a randomized, controlled trial of Souvenaid in mild-to-moderate Alzheimer’s disease.

Alzheimer’s Research & Therapy 5(6), 59, 2013

Shankle, W.R., Hara, J., Barrentine, L.W., Curole, M.V.: CerefolinNAC Therapy of Hyperhomocysteinemia Delays Cortical and White Matter Atrophy in Alzheimer’s Disease and Cerebrovascular Disease. Journal of Alzheimer’s Disease 1-12, 2016 Sharma, A., Bemis, M., Desilets, A.R. Role of Medium Chain Triglycerides (Axona¨) in the Treatment of Mild to Moderate Alzheimer’s Disease Am J Alzheimer’s Disease other Dementias 29: 409-414, 2014

Shen, L., & Ji, H.-F: Vitamin D deficiency is associated with increased risk of Alzheimer’s disease and dementia: evidence from meta-analysis. Nutrition Journal 14, 76, 2015 Shoaib, S., Bojesen, S.E., Nordestgaard, B.G., Reduced 25-hydroxyvitamin D and risk of Alzheimer’s disease and vascular dementia, Alzheimer’s & Dementia 10(3), 296-302, ISSN 1552-5260, 2014

Smith AD, Smith SM, de Jager CA, Whitbread P, Johnston C, et alHomocysteineloweringby B vitamins slows the rate of accelerated brain atrophy in mild cognitive impairment: a randomized controlled trial. PLoS One 5:e12244, 2010.

Soininen, H., Visser, P.J., Kivipelto, M., Hartmann, T. for the LipiDiDiet study group A Clinical Trial investigating the effects of Fortasyn Connect (Souvenaid) in Prodromal Alzheimer’s Disease: Results of the LipiDiDiet study. Presentation held at 14th International Athens/Springfield Symposium on Advances in Alzheimer Therapy, March 10, 2016.

Tan, M.S., Yu, J.T., Tan, C.C., Wang, H.F., Meng, X.F., Wang, C., Jiang, T., Zhu, X.C., Tan, L. Efficacy and Adverse Effects of Ginkgo Biloba for Cognitive Impairment and Dementia: A Systematic Review and Meta-Analysis. Journal of Alzheimer’s Disease 43: 589–603, 2015.

Thaipisuttikul, P., & Galvin, J. E: Use of medical foods and nutritional approaches in the treatment of Alzheimer’s disease. Clinical Practice (London, England), 9(2), 199–209.


Venturelli, M., Sollima, A., Cマ, E., Limonta, E., Bisconti A.V., Brasioli, A., Muti, E., Esposito, F. Effectiveness of Exercise- and Cognitive-Based Treatments on Salivary Cortisol Levels and Sundowning Syndrome Symptoms in Patients with Alzheimer’s Disease. J Alzheimers Dis.53(4): 1631-40, 2016

Von Gunten, A., Schlaefke, S., †berla K. Efficacy of Ginkgo biloba extract EGb 761 ¨ in dementia with behavioural and psychological symptoms: A systematic review. World J Biol Psychiatry .27:1-12, 2015

Wald DS, Kasturiratne A, Simmonds M: Effect of folic acid, with or without other B vitamins, on cognitive decline: meta-analysis of randomized trials. Am. J. Med. 123:522– 27.e2, 2010

Zhang, Y., Chen, J., Qiu, J., Li, Y., Wang, J., Jiao, L. Intakes of fish and PUFAs and mild-to-severe cognitive impairment risks: a dose-response meta-analysis of 21 cohort studies Am J Clin Nutr 103(2); 330-340, 2016



Julie P.W. Bynum, MD, MPH
Dartmouth-Hitchcock Medical Center
(Revised September 2016)


It is important to remember that people with dementia have medical care needs in addition to the care related to their dementia. The provider of that care is often a generalist such as a family physician or internist. These providers often work along with a psychiatrist or neurologist depending on the person’s needs. Often people are seeing many different doctors but one thing to keep in mind is that having a consistent relationship with a primary care doctor over time can help coordinate the care and prevent hospitalizations.

There are skills you can learn to help you partner with your medical providers. Some examples are keeping medication logs, appointment logs, and a record of changes or concerns that have developed since your last visit.

The Alzheimer’s Association website describes some of these skills and also provides blank logs:

• “Partnering with Your Doctor” available at:

• “Medication log” to keep track of medications, what they are for, who prescribed them, and how to take them available at:

• “Appointment log” to prepare for doctor visits and keep track of recommendations from the visits available at:

• “Care log” to keep track of changes in symptoms or behaviors available at: •

Medical Issues Can Worsen Cognition

There are some special issues that arise in the medical management of a person with dementia. First, people who have dementia may have other medical conditions that can worsen their cognitive function. As discussed in the diagnosis section, simple diagnostic tests can rule out most of these such as under or over active thyroid. In addition, people with dementia often have several other chronic medical conditions such as diabetes or strokes. As a result, your provider may recommend taking several medications. In general being on many medications can make daily management complicated but your provider can help you simplify a medication regimen. You will also need to make decisions about how aggressively to control the other conditions. For instance, uncontrolled diabetes might make cognition worse but if too tightly controlled there is a risk of very low sugar, which can be very dangerous. Finally, medications can have side effects that need to be recognized so the medication can be changed or stopped.

Medical Illness Can Be Difficult to Recognize in Someone with Dementia A second special issue is that for several reasons it is sometimes difficult to recognize when a person with dementia is ill. First, they are known to be less likely to report any symptoms at all. Or by the time they are asked, the symptom has passed and cannot give an accurate report. In addition, sometimes the only symptom is worsening of confusion or behaviors. This is particularly challenging, unless a very sudden change, because it can be difficult to tell whether the change is due to worsening of the underlying dementia or if there is a new problem. In general when there is a fairly new change in mental status, the person should be evaluated for any new illnesses, such as an infection or uncontrolled chronic medical problem. In order to assist the medical provider in this evaluation, a knowledgeable person should go to the visit with patient to assist in providing the history.


Finally, the chance that a person with dementia will be hospitalized is high both because of the complications of the dementia and because of other medical conditions. While any change of environment is difficult for a person with dementia, the noise and 24/7 schedule of hospital work makes it even more challenging. People with dementia often develop delirium while in the hospital and can become incontinent, fall, or develop new infections from being in the bed. Hospitalizations can go more smoothly if you communicate clearly with the staff about the person’s dementia and can be present when discussions about symptoms, treatments, and plans occur. See “Hospitalization Happens”, p. 165, to help you prepare for any trips to the emergency room or hospital.

Be Prepared

It is also advisable to keep a file of important health care documents on hand that you can provide the staff to be inserted into the medical record. This file should include a list of current medications and allergies, copies of advance directives, clearly indicated contact information for the surrogate decision maker and any explanation of special issues related to daily care, such as if she is apt to wander or needs assistance to get to the toilet.

The person with dementia depends on care that spans psychological and physical health along with supportive social supports and environments. Medical providers most often deal in the physical realm but for people with dementia the interaction of each domain of care is important and quite complex. Learning what to expect and how to communicate with medical providers can help make the care needs clear and improve the likelihood that your needs are met.




From the National Institute on Aging
Alzheimer’s Disease Education and Referral Center

Updated: July 22, 2016

A trip to the hospital with a person who has memory loss or dementia can be stressful for both of you. This brochure can relieve some of that stress by helping you prepare for both unexpected and planned hospital visits.

Here, you will find: steps you can take now to make hospital visits less traumatic; tips on making your relative or family member more comfortable once you arrive at the hospital; and suggestions on how to work with hospital staff and doctors.

Hospital Emergencies: What You Can Do Now

Planning ahead is key to making an unexpected or planned trip to the hospital easier for you and your family member. Here is what you should do now:

• Think about and discuss hospitalization before it happens and as the disease and associated memory loss progress.

• Hospitalization is a choice. Talk about when hospice may be a better and more appropriate alternative.

• Register your relative for a MedicAlert¨ + Alzheimer’s Association Safe Return¨ bracelet through your local Alzheimer’s Association chapter. People who are lost may be taken to an emergency room. This bracelet will speed up the process of reconnecting you with your family member. Learn more about safetyrelated programs such as Project Lifesaver International


• Know who you can depend on. You need a family member or trusted friend to stay with your family member when he or she is admitted to the emergency room or hospital. Arrange to have at least two dependable family members, neighbors, or friends you can call on to go with you or meet you at the hospital at a moment’s notice so that one person can take care of the paperwork and the other can stay with your family member.

Pack an Emergency Bag Containing the Following: Personal Information Sheet

Create a document that includes the following information about your care partner:

• All current medicines and dosage instructions; update whenever there is a change

• Any medicines that have ever caused a bad reaction

• Any allergies to medicines or foods; special diets

• Need for glasses, dentures or hearing aids

• Degree of impairment and amount of assistance needed for activities

• Family information, living situation, major life events

• Work, leisure and spiritual history

• Daily schedule and patterns, self-care preferences

• Favorite foods, music, and things your family member likes to touch and see

• Behaviors of concern; how your relative communicates needs and expresses emotions


Include copies of important documents such as:

• Insurance cards (include policy numbers and pre-authorization phone numbers)

• Medicaid and/or Medicare cards

• Durable Power of Attorney, Health Care Power of Attorney, Living Will and/or an original DNR (do not resuscitate) order

Supplies for the Person with Dementia

• A change of clothing, toiletries and personal medications

• Extra adult briefs (e.g., Depends), if usually worn. These may not be available in the emergency room if needed

• Moist hand wipes such as Wet Ones; plastic bags for soiled clothing and/or adult briefs

• Reassuring or comforting objects

• An iPod, MP3 or CD player; earphones or speakers

Supplies for the Caregiver

• A change of clothing, toiletries and personal medications • Pain medicine such as Advil, Tylenol or aspirin. A trip to the emergency room may take longer than you think. Stress can lead to a headache or other symptoms.

• A pad of paper and pen to write down information and directions given to you by hospital staff. Keep a log of your family member’s symptoms and problems.

Many people may ask you the same questions. Show them what you have written instead of repeating your answers.

• A sealed snack such as a pack of crackers and a bottle of water or juice for you and your family member. You may have to wait for quite a while.

• A small amount of cash.

• A note on the outside of the emergency bag to remind you to take your cell phone and charger with you.

By taking these steps in advance, you can reduce the stress and confusion that often accompany a hospital visit, particularly if the visit is an unplanned trip to the emergency room.

At the Emergency Room

A trip to the emergency room may fatigue or even frighten your family member. There are some important things to remember:

• Be patient. It could be a long wait if the reason for your visit is not life-threatening.

• Recognize that results from lab tests take time.

• Offer physical and emotional comfort and verbal reassurance to your relative. Stay calm and positive. Others will absorb how you are feeling.

• Realize that just because you do not see staff at work does not mean they are not working.

• Be aware that emergency room staff often have limited training in Alzheimer’s disease and related dementias, so try to help them better understand your relative with dementia.

• Encourage hospital staff to see your relative as an individual and not just another patient with dementia who is confused and disoriented from the disease.

• Do not assume your loved one will be admitted to the hospital.

Do not leave the emergency room to go home without a follow-up plan. If you are sent home, make sure you have all instructions for follow-up care.

Before a Hospital Stay

If your relative is going to the hospital for a planned stay, you have time to prepare and get more information from your doctor. Ask your doctor if the procedure can be done as an outpatient visit. If not, ask if tests can be done before going to the hospital to shorten the hospital stay. Ask if your doctor plans to talk with other doctors. If so, find out if your loved one can see these specialists before going into the hospital.

You should also ask questions about anesthesia, catheters and IV’s. General anesthesia can have side effects. Ask if local anesthesia is an option and ask to be allowed in the recovery room. Insist that regular Alzheimer’s medications be continued throughout the hospital stay unless contraindicated. Discourage stopping cholinesterase inhibitors (Aricept, Exelon, Razadyne).

With Alzheimer’s disease and related dementias, it is wise to accept that hospitalization is a “when” and not an “if” event. Due to the nature of the disease, it is very probable that, at some point, the person you are caring for will be hospitalized. Medical facilities are not typically well designed for those with dementia, and advance planning and preparation can make all the difference.

Build a team for care and support during a hospital stay. Develop roles for each person (spokesperson, hands-on caregivers, comfort people, home and personal affairs manager, communication center person). Do not try to do it alone. Now may be the time to have one-on-one caregivers on site if money or resources permit. They can help make sure medications and/or physical restraints are not used to control behaviors that can be managed with redirection or distraction.

Before your hospital visit, prepare a list of questions and concerns for your doctor.

Before Going to the Hospital

• If your insurance allows, ask if a private room is available. It will be more quiet and calm. Request a reclining chair or bed for you or a companion/respite provider.

• Shortly before going to the hospital, decide the best way to tell your loved one that the two of you are going to spend a short time in the hospital.

• Involve your loved one in the planning process as much as possible.

• Do not talk about the hospital stay in front of your loved one as if he or she is not there. This can be upsetting and embarrassing.

• Plan ahead. Make a schedule with family, friends and/or a professional respite care provider to take turns staying with your loved one with dementia while in the hospital. This is particularly important if your relative needs continuous supervision.

During the Hospital Stay

• Ask the hospital staff to avoid using physical restraints.

• Have a family member, trusted friend or hired caregiver with your family member at all times if possible—even during medical tests. This may be hard to do, but it will help keep your family member calm and less frightened, making the hospital stay easier.

• Use a “telephone tree,” email or online tools to keep others posted of progress.

This can greatly reduce stress and make sure that you do not receive calls just as you get your family member settled down. You may need to turn the ringer on the phone down or off during rest times.

• Ask doctors to limit the questions directed to your relative, who may not be able to answer accurately. Instead, arrange to answer questions from the doctor in private, outside your family member’s room.

• Modify the hospital room for best performance.

• Help your relative fill out menu requests. Open food containers and remove trays.

Assist with eating as needed.

• Remind your family member to drink fluids. Offer fluids regularly and have him or her make frequent trips to the bathroom.

• Assume your family member will experience difficulty finding the bathroom and/or using a call button, bed adjustment buttons or the phone.

• Communicate with your family member in the way he or she will best understand or respond.

• Recognize that an unfamiliar place, medicines, invasive tests and surgery will make a person with dementia more confused. Your relative will likely need more assistance with personal care activities.

• Take deep breaths and schedule breaks for yourself!

• Be aware of acute or sudden confusion or delirium, which can be caused by serious medical problems such as fever, infection, medications and/or dehydration. Inform the doctor as soon as possible if your family member seems suddenly worse or different. Make sure you advocate for the person you are caring for; others may not recognize the difference in your relative’s condition.

If Anxiety or agitation occurs, try some of the following:

• Remove personal clothes from sight.

• Post reminders or cues if this comforts your family member.

• Turn off the television, telephone ringer and intercom. Minimize background noise to prevent overstimulation.

• Talk in a calm voice and offer reassurance. Repeat answers to questions when needed.

• Provide a comforting touch or distract your family member with offers of snacks and beverages.

• Consider “unexpressed pain” (i.e., furrowed brow, clenched teeth or fists, kicking). Assume your relative has pain if the condition or procedure is normally associated with pain. Ask for pain evaluation and treatment every four hours without your family member having to ask for it—especially if he or she has labored breathing, loud moaning, crying or grimacing, or if you are unable to console or distract your family member.

• Listen to soothing music or try comforting rituals such as reading, praying, singing or reminiscing.

• Slow down; try not to rush your family member.

• Avoid talking about subjects or events that may upset your loved one.

Working With Hospital Staff

Remember that not everyone in the hospital knows the same basic facts about memory loss and Alzheimer’s disease or related dementias. You may need to help teach hospital staff what approach works best with your family member, what distresses or upsets him or her, and ways to reduce this distress.

You can help the staff by providing them with a personal information sheet that includes your family member’s normal routine, how he or she prefers to be addressed (e.g., Miss Minnie, Dr. James, Jane, Mr. Miller, etc.), personal habits, likes and dislikes, possible behaviors (what might trigger them and how best to respond), and nonverbal signs of pain or discomfort.

Help staff understand what your family member’s “baseline” is (prior level of functioning) to help differentiate between dementia and acute confusion or delirium.

You should:

• Make the personal information sheet easy to read with headings and short, simple statements. Place a copy with the chart in the hospital room and at the nurse’s station.

• With the hospital staff, decide who will do what for your family member. For example, you may want to be the one who provides assistance with bathing, eating or using the bathroom.

• Inform the staff about any hearing difficulties and/or other communication problems your relative may experience and offer ideas for what works best in those instances.

• Make sure your family member is safe. Tell the staff about any previous issues with wandering, getting lost, falls, suspiciousness and/or delusional behavior.

• Not assume the staff knows your family member’s needs. Inform them in a polite, calm manner.

• Ask questions when you do not understand certain hospital procedures and tests or when you have any concerns. Do not be afraid to be an advocate for your relative.

• Plan early for discharge. Ask the hospital discharge planner about eligibility for home health services, equipment or other long-term care options. Prepare for an increased level of caregiving.

• Realize that hospital staff are providing care for many people.

• Practice the art of patience.

Make Contact with Helpful Resources

The following agencies can provide you with information about Alzheimer’s disease and related disorders and connect you with community programs and services such as support groups and respite care:

• Alzheimer’s Disease Education and Referral (ADEAR) Center 1-800-438-4380 (toll-free)

• Alzheimer’s Association

1-800-272-3900 (toll-free)

• Eldercare Locator

1-800-677-1116 (toll-free)

• Family Caregiver Alliance

1-800-445-8106 (toll-free)

• Caregiver Action Network

1-800-896-3650 (toll-free)

Additional Resources

• University of California, San Francisco, Memory and Aging Center Partner With Me Project See the video “Partnering with Family Caregivers: A Guide for Hospitalization When Your Loved One has Dementia”

This information was originally produced by the North Carolina Division of Aging and Adult Services (NCDAAS) in conjunction with the Joseph and Kathleen Bryan Alzheimer’s Disease Research Center through the U.S. Administration on Aging grant #90AZ2246. It was revised in August 2008 by NCDAAS through grant #90AZ2782 in conjunction with the Joseph and Kathleen Bryan Alzheimer’s Disease Research Center, Alzheimer’s Association – Eastern NC Chapter, Duke Aging Center Family Support Program and Positive Approach, LLC. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy.