A new diagnosis of dementia


This is a letter I recently wrote to review a new diagnosis of dementia with a patient who requested a consultation from the home memory disorders program. This is not meant to establish a provider patient relationship with the reader but merely to inform and help you prepare for your visit with your primary care provider. This is not medical advise intended for anyone to follow in substitution of care from a professional.

Dear Ms. M,
The purpose of this letter is to review the findings from our last visit and to allow you the opportunity to think about any further questions you may have. I will review in detail the specifics of the disease and its progression. I will also review the medication that was discussed and have included a prescription which can be filled if you decide you are ready to begin treatment.

Alzheimer’s Disease (AD) is a dementia marked by a disrupted communication from the neuron body to the axon. Specifically, tau is a protein that binds to the micro tubules which transport nutrients from the body of the nerve cell to the end of the axon. Tau acts as a stabilizing agent in the transport process. In AD tau is chemically changed and becomes tangled with other tau proteins thereby interfering with the stabilizing effect. Eventually the microtubule collapses on itself and disintegrate. This tangle is known as a neuro-fibrillary tangle (NFT). A resulting malfunction of communication occurs between nerve cells and eventually they die. Furthermore, plaques develop known as beta-amyloid. These microscopic plaques cause cerebral-cortical (brain) atrophy. The symptoms of AD are a result of where the NFT deposit typically first around the hippocampus region and temporal regions of the brain. This is the reason for the initial symptoms of cognitive decline specifically memory and executive functioning.

If you feel the need to discuss this again with your loved one please keep the following factors in mind. A new diagnosis of a life altering terminal disease is never easy, and it may take several discussions for the information to be clarified and to answer concerns. It can be helpful to involve supportive family members and friends. If the patient is lacking sufficient ego strength to hear the diagnosis then there is no reason to insist on labeling the disease formally. It may suffice to call it the problem with your memory in an effort to normalize age appropriate cognitive declines.
The medication we discussed in our session is donepezil. However, I would want to get more information about her current medications to see if they all need to be maintained as there are some drug-drug interactions which present other problems including delirium due to the increased total number of medications.

Donepezil is a medication that is used to help slow the decline of cognition, it does not reverse the disease, it must be taken every day, the adverse effects (AE) are often GI if they do occur and they include (explosive diarrhea, and nausea as the most common) other adverse effects include insomnia, and increased risk of infections. Some patients report headache, fatigue, abdominal cramping and bloating. These AE occur in about 10% of patients. Other AE occur in less than 5% of patients high blood pressure, odd dreams, confusion, hallucinations, passing out due to slowed heart rate.

In order to mitigate these risks I would recommend starting at a fairly low dose to see how the medication is tolerated. You may not see any benefit for about 4-6 weeks, and you may notice decreased agitation and some gain of recently lost executive function.

Dementia often may cause other symptoms such as depression, poor sleep, poor appetite, and should this occur we can discuss other medications that may help reduce the burden of this terminal disease.

I have included some tools (Behavior Log) that I use to help caregivers asses for early changes in condition so that early interventions can mitigate severity and treat reversible conditions. As previously mentioned some people taking donepezil are at an increased risk for developing infection which can sometimes superimpose delirium which may seem like a severe decline in cognitive function, but the delirium is reversible.

I would also remind you to remember to care for yourself. If you are in need of respite care you may contact me for some medical and non medical home companions.

In dealing with people with dementia remember the following 3 strategies for daily living:

Do not take any accusations personally. Think of accusations like misfiring neurons and not Freudian slips.

Try to choose your battles carefully, unless it impinges on her safety try not to fight, but rather roll with her wishes.

While I am not encouraging lying to the patient, consider changing the subject rather than out right opposing her. If she decides she wants ice cream for breakfast just go with it. If she thinks it is someone’s birthday celebrate it.

Safety Strategies:
I would encourage registering with the police department for wondering, and to get her a medic alert bracelet, and a safety call device also notifying the local ERs, as well as a clearly marked ID in all of her purses and wallets.

Appoint someone as guardian over finances, and identify all financial obligations, sources of income, and a money management strategy. Reduce all credit limits to the lowest possible level.

Close all unnecessary lines of credit, and enroll her in identity theft protection. Put her name on a do not call list, try to unsubscribe from all junk mail, restrict mailing lists, change her locks and make a key copy for the primary care giver.

Turn the gas off to the apartment or remove the oven dials, and put a temperature governor on the taps.

Inspect the fridge for expired foods, and remove the trash frequently.

If you have any concerns or questions please do not hesitate to call me.

Yours truly,

Raymond Zakhari, NP Primary Care Provider

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