The Dartmouth Memory Handbook

Section 6: Treatment


 

Anti-Dementia Medications

 
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.
 
References:
Question: What are clinical trial phases? FAQ ClinicalTrials.gov - Clinical Trial Phases.
National Institutes of Health U.S. National Library of Medicine
URL: https://www.nlm.nih.gov/services/ctphases.html, 2008
 
What is the approval process for a new prescription drug? FDA: U.S. Food and Drug
Administration.
URL: http://www.fda.gov/AboutFDA/Transparency/Basics/ucm194949.htm, 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, 48-
week 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 Community-
Based 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
 

Other Interventions That May Be Helpful

For the Person with Alzheimer’s Disease

 
Daniel R. Bateman, M.D. and Robert B. Santulli, M.D.
(Revised September 2016)
 
Introduction
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.
 
Diet
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.
 
Exercise
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
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, http://clinicaltrials.gov/. 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
http://www.alz.org/.
 
References:
Mayo Clinic Healthy Lifestyle, Nutrition and Healthy Eating. Article: Mediterranean Diet
for Heart Health. Author: Mayo Clinic Staff. (URL: http://www.mayoclinic.org/healthylifestyle/
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:
http://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInf
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.
https://www.rush.edu/news/diet-may-help-prevent-alzheimers. 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.
2016
 
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
 

Medical Care for

The Person with Dementia

 
Julie P.W. Bynum, MD, MPH
Dartmouth-Hitchcock Medical Center
(Revised September 2016)
 
Introduction
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:
http://www.alz.org/national/documents/brochure_partneringwithyourdoctor.pdf
• “Medication log” to keep track of medications, what they are for, who prescribed
them, and how to take them available at:
• http://www.alz.org/national/documents/samplemedicationslog.pdf
• “Appointment log” to prepare for doctor visits and keep track of
recommendations from the visits available at:
http://www.alz.org/national/documents/sampleappointmentlog.pdf
• “Care log” to keep track of changes in symptoms or behaviors available at:
• http://www.alz.org/national/documents/samplecarelog.pdf
 
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.
 
Hospitalization
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.
 

Hospitalization Happens:

A Guide to Hospital Visits for

Individuals with Memory Loss

 
From the National Institute on Aging
Alzheimer’s Disease Education and Referral Center
https://www.nia.nih.gov/alzheimers/publication/hospitalization-happens
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
(www.projectlifesaver.org).
• 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
 
Paperwork
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)
www.nia.nih.gov/alzheimers
 
• Alzheimer’s Association
1-800-272-3900 (toll-free)
www.alz.org
 
• Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov
 
• Family Caregiver Alliance
1-800-445-8106 (toll-free)
www.caregiver.org
 
• Caregiver Action Network
1-800-896-3650 (toll-free)
www.caregiveraction.org
 
Additional Resources
 
• University of California, San Francisco, Memory and Aging Center
Partner With Me Project
http://memory.ucsf.edu/caregiving/hospitalization. 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.