TIPS AND TRICKS

Make a specific diagnosis of dementia type as early in the disease course as possible to aid in appropriate medical management. Address prognosis early to aid advanced planning.

---

What is the role for the neurologist after diagnosis?

Many neurologists continue to take the “diagnose and adios” approach to dementia patients, leaving the follow-up care to primary care providers. In the absence of interventions requiring the particular knowledge or skills of a specialist, this is a defensible practice at the present time. However, many patients and families prefer periodic follow-up with a specialist to review their status, their medications, and overall care plans. This chapter is intended to provide some practical guidance for neurologists who elect to provide this type of continuing care for dementia patients. The little bit of evidence that exists on the subject indicates that dementia care is improved by the continuing care of specialists, whether neurologists or geriatricians.

The delineation of treatment goals may help justify the participation of neurologists in dementia care. Treatment goals change during the course of the disease, from preservation of function in early stages, to management of behavioral problems in middle stages, to palliative care in later stages, but there is a potential role for neurologists at each of these stages (Table 7.1). This chapter serves as a guide to management across all stages, with other chapters dedicated to the details of pharmacological management of behavior problems and palliative care in later stages.

Table 7.1 Examples of stage-specific treatment management of dementia

Partnering in dementia care

Patients with dementia tend to have poor insight even in the early stages of this disease. Therefore, most will not bring up their cognitive or behavioral issues independently. Typically, a family member accompanies (or brings, sometimes with strong encouragement) a loved one with “memory problems” or suspected dementia for evaluation. However, you may see a patient for a different neurological complaint and note problems indicative of dementia. This warrants an attempt to include family members (or other responsible party) at subsequent visits.

A patient with dementia should have a medical partner to attend all doctors’ visits. In practice, this is often a family member. However, some patients may have a friend, partner, neighbor, professional caregiver, or other who plays this role. (Therefore, note that reference and recommendations in this chapter for the medical and supportive role of a “family member” or “family caregiver” may apply to another individual so involved.) Ideally, this person would be the designated Medical Power of Attorney (MPOA), either acting in this role currently or a durable MPOA upon patient’s incapacity, and able to attend all doctors’ visits. In practice, sometimes different family members rotate responsibility for attending doctors’ visits. Having one family member act as “gatekeeper” or point person to coordinate all of a patient’s medical care works well. At the very least, if multiple family members rotate, recommend that one family member works with one physician and reports updates to this point person. The person who has durable or active MPOA should be encouraged to attend visits since this person should be well acquainted with the patient’s care, as he or she is making medical decisions on the patient’s behalf (or will be doing so in the future). For example, it becomes cumbersome to discuss and contemplate relatively straightforward and routine matters such as side-effects of medication, let alone handle crisis management, if a MPOA is not present at a follow-up appointment. For a patient who has capacity, a frank discussion should be undertaken regarding the clear advantages of designating someone as durable MPOA who can be well acquainted with the patient’s medical wishes, history, treatment, and team. For those patients who no longer have capacity, the person acting as MPOA should be involved via telephone or other communication at appointments, regarding treatment decisions, etc. Preferably, the same person can attend all doctors’ visits and act as MPOA, if needs be. Visits should be scheduled when the patient and at least one family member (or other medical partner) can attend together.

In all cases, Health Insurance Portability and Accountability Act (HIPPA) and other requirements for protecting private health information (PHI) should be followed, such as obtaining patient consent to discuss PHI with relevant parties. It is important to have HIPPA forms signed by a person capable of doing so. A patient with incapacity due to dementia or other reasons cannot legally agree or refuse consent. Patients who agree that someone may accompany them during doctors’ visits are granting permission for discussion of private health information with that person, but it is best to document this consent. Chapter 10 discusses these issues in further detail.

Diagnostic considerations specific to dementia

It is not a good idea to inform patients of a dementia diagnosis or prescribe an antidementia medication without a companion for support, as well as to provide information for diagnosis, remember medication and other information discussed, and advocate in terms of asking questions and monitoring progress until the next visit.

If patients forget their dementia diagnosis, just let them. Some patients may lack awareness of the full extent and consequences of their dementia. Use memory loss to advantage and let ignorance be bliss. Advise families of this as well. Testing outside the clinic should also be avoided to prevent patient anxiety – and practice effect!

Families and other carers should, of course, step in to protect patient safety, but this need not include repeatedly reminding patients with dementia of their diagnosis. In dementia, correction, criticism, and reprimands should generally be avoided. This is a crucial principle in the day-to-day care of patients with dementia: Avoid conflict and go with the flow.

Using simpler terms – or even better, simply providing reassurance – usually trumps more complex clinical terms for most people, patients and caregivers alike. The bottom line is that short, simple explanations usually work well for patients with dementia. Answering the same query repeatedly is annoying at best. Having a short answer, especially writing it down, or having a visual reminder (such as a calendar) usually works best. This is another important principle that resonates throughout dementia care: Show, don’t tell.

TIPS AND TRICKS

Each patient with dementia should have a medical partner (often a family member or other close individual) to attend doctors’ visits, provide medication list and other updates, and help advocate for patient interests.

---

Families (and others) can provide vital information on a patient’s symptoms and clinical course. However, they may find it hard to discuss problems such as excessive alcohol intake, hallucinations, inappropriate social behaviors (e.g. disrobing in public), unsafe driving, and difficulty managing finances, particularly in the presence of the patient. When evaluating someone with anosognosia (a lack of awareness into one’s own problems), probing almost any issue may be tricky.

Ask family members or other medical partners to jot down two or three of their major concerns on one sheet of paper and bring it to the visit. They might even hand this page discreetly to check-in staff to avoid having to give it directly to you in front of the patient. Such a note allows you to “hear” family concerns and garner necessary information about the patient’s mental status, behavior, and function, while minimizing the potential for embarrassing or even explosive situations.

TIPS AND TRICKS

Encourage families to put concerns in writing.

---

Family conferences

If it is difficult to formulate or execute a plan of care in a patient’s presence due to that individual’s cognitive and/or behavioral condition, it may be necessary to conduct a family conference without the patient (e.g., a patient who becomes highly agitated with any discussion or paces for the entire visit). Such sessions may be conducted so long as HIPPA and other regulations protecting a patient’s PHI are honored (e.g. with consent of the MPOA if a patient lacks capacity for medical decision making). Medicare and other insurance typically does not cover the cost of such meetings. Families should be informed upfront of any fees. These conferences may work well for families with multiple members, particularly those who may not attend doctors’ visits routinely and/or live out of town but wish to meet and ask questions directly of the doctor and out of earshot of the patient.

Medications

Medication list and supervision

Any of us can forget a medication. It makes little sense to prescribe medication for memory and similar problems without a mechanism to monitor if such remedies are taken correctly. (In fact, it might be quite harmful to do so.)

Request that both patient and family member work together to assemble a list of the patient’s medications and that each should carry this (either on a card in a wallet or as a list in a smartphone). This ensures availability in case of an emergency and for all doctors’ visits, facilitating review of medications and potential interactions, risks, and benefits. Three requirements that should be met prior to prescribing medications for a patient with dementia are a medication list, a pillbox (or similar system), and supervision (or out-and-out administration) by a responsible family member or professional.

Use of a weekly pillbox (with a number of daily slots commensurate with the maximum daily frequency of any medication) provides a convenient mechanism for a family member. A relative (or other caregiver) can help a patient fill such a device, which also allows the opportunity to refill medications before they run out as well as to check for missed dosages (which, if identified, indicate a need for increased supervision and assistance with medications). Such a pillbox should be located somewhere prominently (e.g. on a kitchen table) and linked to another habit (such as eating breakfast). Someone who lives with a patient might use their own pillbox for any vitamins or medications to lend moral support to the patient and help make it a part of the household routine.

Recommend that family members partner with patients or assume full responsibility for prescription refills. Older patients, in particular, may accept the assistance of their adult children, when a doctor recommends and/or the grown children volunteer to order these online for parents who are not as adept on the computer, particularly due to the cost savings that this may provide.

TIPS AND TRICKS

A list of medications and a plan to ensure that a patient doesn’t forget to take them are prerequisites for prescribing drugs for memory loss or similar symptoms. A pillbox which a family member or other caregiver helps fill and check represents a good starting point. Missed doses indicate a need for additional supervision and assistance (i.e. beyond use of a pillbox). Family caregivers should also assist in obtaining prescription refills.

---

Prescribing considerations

Out with the bad, in with the good

Review current medications, especially before initiating any new ones. Agents that may adversely affect memory and other aspects of cognition should be minimized. Similarly, a patient with dementia may be exquisitely sensitized to amnestic and other adverse effects of alcohol, and its use may need to be reduced or altogether avoided.

Start low and go slow – but keep going

This is the mantra of behavioral and geriatric neurology. While a careful initial titration is important, it is also crucial to keep going to achieve an effective dose and maintain this for enough time to give the drug a fair trial. This is particularly the case in dementia since available medications are by no means curative and, at best, only slow the inexorable declines in cognition, behavior, and function.

Antidementia medications

Practical tips are offered for use of the products described herein. Full labeling information should be consulted before prescribing these or any medications.

While dementia is primarily irreversible and incurable, most dementia is treatable to some extent. The main agents used are sometimes called cognitive enhancers, but the term antidementia medications better reflects their more widespread effects, including with regard to behavior and function. (The following chapter addresses the use of medications for behavioral issues in dementia.)

Only two major classes of medication have FDA approval for treatment of dementia (and then only specific types and stages of dementia, as discussed below). These are the cholinesterase inhibitors and the N-methyl-D-aspartate (NMDA) antagonist memantine.

Cholinesterase inhibitors (CIs)

These include donepezil, galantamine, and rivastigmine. Alzheimer’s disease (AD) is associated with loss of cholinergic neurons and reduction in available acetylcholine. These drugs act to reduce the reuptake of this neurotransmitter, increasing the availability of acetylcholine. Common side-effects are gastrointestinal (GI), such as nausea and diarrhea. Bradycardia and syncope represent less common but serious adverse effects. Insomnia and nightmares are also possible, so, for those agents that are administered once a day, this author prefers prescribing these off-label in the morning (after breakfast) to help minimize the risk of these symptoms.

Donepezil

This drug is approved for all stages of AD and available in tablets in a variety of dosage. The orally disintegrating tablet (ODT) form may be useful for patients with dysphagia or other difficulty taking pills. The dosage titrations should be attempted only after at least 4 weeks on a given dose (e.g. 5 mg daily × 28 days, then 10 mg daily). As noted above, this author prefers prescribing these off-label in the morning (after breakfast) to help minimize the risk of GI symptoms and sleep disturbance.

Galantamine

This medication is approved for mild-to-moderate stage AD and is available in tablets and oral solution dosed twice a day and extended-release capsules administered daily. The dosage titrations should be attempted only after at least 4 weeks on a given dose As noted above, this author prefers prescribing these off-label in the morning (after breakfast) to help minimize the risk of GI symptoms and sleep disturbance.

Rivastigmine

Approved for mild-to-moderate stage AD, this is the only drug also approved for Parkinson’s disease dementia. It is also the only CI available as a (daily) patch. Other forms include twice-a-day capsules in a variety of dosages. Dosage titrations should be attempted only after at least 4 weeks on a given dose.

NMDA antagonist

Memantine is a non-competitive NMDA antagonist and the only drug in this class which has an FDA indication for treatment of dementia. It is generally well tolerated, but common adverse effects may include confusion, constipation, dizziness, drowsiness, and headache. It comes in a 28 mg extended-release tablet for once-daily usage as well as 5 and 10 mg tablets FDA approved for twice-daily dosing. However, the half-life of the 5 and 10 mg tablets is 60–100 h, so there appears to be no pharmacological contraindication to off-label once-daily dosing (which is how the same preparation is dosed in Europe and an off-label option this author has utilized in a number of patients. It is particularly useful to switch the entire daily dose to the evening for patients who experience daytime somnolence.)

Combination therapy

This refers to the simultaneous use of a CI and memantine and represents the standard of care for patients with moderate AD. It works well to start one drug and achieve the maximally effective dose on that before starting the other.

Consider the side-effect profile of these products in deciding which one to start first and use this to advantage. For example, many elderly patients experience constipation, so it usually works best to start a CI first, potentially relieving irregularity, before initiating memantine. Alternatively, for a patient with a history of diarrhea, it may be useful to start memantine first. Some patients previously unable to tolerate a CI due to GI side-effects (such as nausea and diarrhea) may be able to do so after starting memantine. In fact, studies of combination therapy show precisely this – that patients taking a CI and memantine together had fewer such GI events than those taking a CI alone. Use of the patch form of a CI should also be considered in patients with such GI symptoms.

Related posts:

Diagnosis and Differential Diagnosis of Dementia An Approach to the Problem of Normal Pressure Hydrocephalus Ethical, Legal, and Social Issues in Dementia Depression: Cause or Complication of Cognitive Decline? Using Psychotropic Medications to Manage Problem Behaviors in Dementia Young Onset Dementia: How Much Diagnostic Testing is Enough?

Stay updated, free articles. Join our Telegram channel

Join