Should My Loved One

Be Taking Alzheimer’s Medicine

By Carole Larkin

Over the years my clients have asked me, “Should my loved one be taking any of the Alzheimer’s medicines?” My answers have differed depending on how much I knew about the medicines, the relative costs of the medicines, and how much research has been done on the effectiveness of the medicines. Here is what I’m saying currently.

There are only 5 medicines that the FDA has approved for treatment of Alzheimer’s disease. The first one approved isn’t prescribed very much anymore (Cognex). None of the medicines cure the disease. None of the medicines stop the disease process from continuing on longterm, though they slow the progress of the disease for a period of time. The current time frame for slowing the disease has been estimated to be between 18 months and 36 months depending on the individual. The medicines may hold the memory loss steady and/or positively impact some of the common Alzheimer’s “behaviors”, meaning anxiety, paranoia, aggressiveness and other “negative behaviors”. The current estimate is that about 30% of people who are taking the medicines are helped by the medicines, but 70% are not helped by them

Alzheimer’s medicines approved by the FDA for early stage are:

• Razadyne  (galantamine, Reminyl)
• Exelon (rivastigmine)
• Aricept (donepezil)
• Cognex (tacrine) not prescribed much anymore.

Medicines that increase the effects of the above Alzheimer’s medicines are:

• Tagamet (cimetidine) – for Acid Reflux and ulcers
• Nizoral (Ketoconazole) – for Dandruff, Dermatitis, fungal and yeast infections
• Norvir (ritonavir) – for HIV/AIDS or too much serotonin
• Paxil (paroxetine) – for anxiety and/or depression
• Erythromycin – antibiotic

Medicines that decrease the effects of the above Alzheimer’s medicines are:

• Benadryl – Antihistamine
• Detrol  – Bladder control drugs

Alzheimer’s medicine approved by the FDA for middle-late stage is:

• Namenda  (memantine)

Medicines that interact negatively with the above medicine:

• Sodium Bicarbonate – baking soda, antacid
• Diamox (acetazolamide) – pulmonary edema, Sleep Apnea or Ataxia (lack of muscle coordination)

Researchers and a number of neurologists have recommended that patients with Alzheimer’s take one of the medicines for early stage and the medicine for middle stage together (during the same day), if they can tolerate the side effects of the medicines. The most common side effects of these medicines have to do with the gastrointestinal system, such as nausea, vomiting, stomach pain, and diarrhea. There are other side effects as well. Many caregivers when faced with one or more of these side effects appearing in their loved one after just a day or two abandon the attempt to use the medicine, but It may take up to several weeks to build up enough tolerance to the drug so that the side effects stop. That is why doctors titrate, or build up the level of the drug slowly (from 5 mg to 10 mg for example). While understandable that people don’t want to see their loved one suffer with the side effects for very long, it could be that the medicine is not given a decent chance to build up to high enough levels in the system to do its job. Maybe that’s why there isn’t a higher percent of effectiveness. That could be a new avenue of research!

Also, for a percentage of the population (in the USA) the cost of the medicines enters into the decision whether to try these medicines or not. Currently all of the medicines for early stage have gone generic, there for greatly reducing the cost of the prescriptions. The drug for middle stage and later is due to go generic in 2015. Perhaps not everyone buying these medicines knows this, and is still paying for the brand name. I hope not!

So, after all that information, the central question still remains. Should my loved one be taking the medicines?

Most certainly they are worth a try (meaning having the person on the drug for 2-3 months) if a couple of conditions exist.

• It’s early in the disease progression.

The problem is that many people don’t recognize the disease soon enough, or are in denial about the existence of the disease in their loved one, so that the opportunity for the early stage medicines to work is already gone. The medicines work on living cells, not on cells that are near or at death. The person may have so many dead cells in the brain that giving medicine to the live ones is essentially too little, too late. If that’s the case; what’s the point of spending the money on drugs, no matter what the price of the drugs are, cheap or not?

Another problem is actually the reverse of non-recognition or denial of the disease process. Many people think that their loved one is later in the disease than they actually are. Because they don’t know much about the disease, they think that early signs of the disease are actually middle or late signs of the disease (for example: asking questions over and over again, having trouble paying bills or taking medicine properly.) The caregivers mistakenly think that their person is “too far gone” and won’t even try the medicines. If the caregiver educates himself or herself as to what the actual stages of the disease look like, or conversely takes their loved one for neuro-psychological testing on a yearly basis to have a professional determine where in the disease they are, then the caregiver could make a more informed decision when determining whether to give their loved ones the medicines or not.

• If the caregiver or person with Alzheimer’s can afford it.

If buying the Alzheimer’s drugs, means that the person can’t afford his or her heart medication or thyroid medication or medication for their breathing, well by all means don’t buy the Alzheimer’s medicine! If buying the Alzheimer’s medicine means there isn’t enough money for food, rent, utilities and other basics of life, of course the Alzheimer’s medicines shouldn’t be bought. First things first! If there is any confusion on this point, just Google” Maslow’s hierarchy of need” and look at the bottom levels of the pyramid.

Then, if the person is already on one or more of the drugs, the question becomes, when should he be taken off of them?

• Because the estimate of how long they do well on the drugs is currently between 18 and 36 months, you could try it at the 3 year mark. The only way you know if the drugs have been doing any good is if when they are taken off the drugs, they take a sudden and sharp downturn in cognition (as expressed by things they are able to do for themselves, like dress, or feed or bathe themselves) and or memory. With the downturn you’ll know if they were being helped by taking the meds, but even if you put them back on the medicines again, they will never return to the level they were at when they were taken off the drugs. Quite a dilemma for the caregiver, I know. That’s when the caregiver should know what stage of the disease the person is at when they were taken off the drugs. If they are at the late stage, it just may not be useful to even attempt to put them back on the drugs. That again means either education on the caregiver’s part or neuro-psychological testing.

• And if the caregiver or person with Alzheimer’s can afford it.

Everything I said before bears repeating, plus the fact that there will be more medical costs awaiting the person with the disease than there were before. That’s the nature of this disease. Costs for physical ailments do rise as the disease goes on either because the cognitive problems have caused a deterioration in the person’s ability to be self aware of the things that need to be done for their other illnesses (like comply with a prescription taking regimen) or because the disease itself can cause failures in other organs and body systems, in the late stages.

• Finally taking someone off the Alzheimer’s drugs inevitably involves the caregiver’s inherent ability to take risks themselves (as the decision maker). Also the caregiver needs to be self aware of their own tendency towards creating guilt in their own minds, no matter whether keeping the person on the meds or taking them off the meds.

•  Since there is no clear right answer to the taking off/putting back on answer, it seems to me that the best a caregiver can do is learn as much as possible about the disease and about the med(s) their loved one is on, make their (informed) decision, own that decision, and then grant themselves Grace by saying, “I’m confident that I made the best decision for my loved one I could have, at the time.” Because you did…

By Carole Larkin  MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care. She has a Master’s of Applied Gerontology from the University of North Texas, is a Certified Alzheimer’s Educator, is a Dementia Care Practitioner, is a Qualified Dementia Care Specialist, and an Excellence in Care Specialist at the Alzheimer’s Foundation of America, as well as a Certified Trainer/Facilitator of the groundbreaking dementia care training tool, the Virtual Dementia Tour Experience She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She consults with families telephonically nationwide on problems related to the Dementias. Her company, ThirdAge Services LLC, is located in Dallas, TX, and her website is www.thirdageservices.com.