By Luciana Mitzkun,
Community Services Director

Santa Barbara residents are no stranger to disasters: We’ve had fires, floods, earthquakes, mudslides, tsunamis, oil spills, tornadoes, and even a hurricane! In addition to community disasters, there are also possible personal emergencies that could happen to all of us, such as falls, accidents, or an unexpected health event.

If you are a caregiver for a person with dementia, any one of those situations could suddenly restrict your ability to provide care. A common trip-and-fall can potentially result in being in a cast for 6 weeks! Should you be temporarily incapacitated, have you planned for uninterrupted care for your loved one?

Anticipating and preparing for what to do in case of an emergency is the key to overcome adversity with minimum disruption to the continuity of care. Every caregiver should have a contingency plan for care ready to be put into place should the need arise.

A good emergency care plan should include provisions for immediate temporary placement in a memory care community, such as Villa Alamar. These facilities can become a second home for dementia patients, where they can be safely housed while receiving assistance with every activity of daily living in a nurturing and socially stimulating setting. Having your loved one comfortably placed in a memory care home would allow you to fully attend to your own emerging needs without having to also attend to the many tasks of direct caregiving.

Temporary placement in a residential care facility is commonly referred to as respite care. Not every memory care home offers respite, we do, and not every home that does offer respite care has beds available when you need one. To maximize your chances of finding respite care should you need it, make sure you follow these steps – and do it before an emergency happens:

1. Identify a suitable memory care home. Memory care homes come in all shapes and sizes, some are particularly appropriate for your loved one, some are not. Research available homes, visit them in person, talk to the administrator. Make sure the home is secured, equipped with wandering prevention systems and that it offers plenty of activities that are engaging and stimulating for a person affected with dementia. Ask about their nursing team, caregiver per resident ratio, and length of shifts of their care staff. Prefer a home that offers a team of caregivers with longevity in their positions and a long history of caring for dementia patients: staff stability and experience matter.
2. Request a nursing assessment. Once the home is identified, ask the administrator for a nursing assessment. The nursing team should meet with you and your loved one to review all information regarding medical and social needs. This assessment will help confirm the appropriateness of the services provided for your loved one. It could also result in recommendations for additional services and care strategies.
3. Ask the doctor for a report. You will need a physician’s report in hand for placement of any kind, permanent or temporary. In California, the Health and Human Services Agency requires a form 602A (easily downloadable on the web) with a valid test for tuberculosis (TB) signed by the doctor within 1 year of placement. As there are many doctor visits throughout the year, there are many opportunities for you to renew this form.  Make sure you always have a current 602A with TB test.
4. Keep current prescriptions signed by the doctor. For residential care, all medications must be accompanied by signed orders from the doctor, including details about dosages and frequency, which are required even for medications that are bought over the counter (such as Tylenol and supplement vitamins). These days where everything is in the computer, this requirement is not as easy to fulfill as one would think it would be! Get in the habit of collecting written prescriptions at every visit with the doctor, and every time there is a change in the medication, and keep them current and handy with your other placement documentation.
5. Collect copies of required documents. In a folder, with the 602A and signed prescription orders, keep copies of the following: photo identification, Medicare card, and insurance cards. If applicable, also add copies of power of attorney, health care directive, and POLST (Physician Ordered Life Sustaining Treatments).
6. Prepare an overnight bag. You may want to have an overnight bag prepared in advance with essential toiletries and clothing enough to last for 3 days. The care home should be able to provide incontinence supplies as needed, although you are welcome bring your own. Other items that should accompany your loved one include: All current medications (in their original bottles), adaptive devices (cane, walker), corrective devices (eyeglasses, hearing aids), items of personal comfort, and items of personal interest. All items should be marked with the person’s name. DO NOT include any valuables such as cash, jewelry, irreplaceable mementos, or anything that has intrinsic or emotional value.
7. Share your contingency respite plan with a trusted proxy. Identify a family member or a trusted friend to assist you in case you need help. Share the knowledge of your plan and the location where the above items are stored with them, so they could quickly assess the bag and documentation when needed.

There are several steps in arranging for a respite stay, therefore it would be very difficult to complete them  all at once, specially while immersed in an emergency event. Start now.

After completing these 7 steps, you are prepared for a quick placement in case of emergency. Hopefully, there will be no emergency, although things do not always happen as expected. It is best to be prepared.

On a happier note, keep in mind that a short stay in a memory care home may also be used to accommodate a fortunate event. Many caregivers have used the respite stay at Villa Alamar to take a well-deserved break, to attend a reunion out of town, to visit with friends and family, or to travel abroad. Having a respite plan in place may also offer you peace of mind to take more breaks from caregiving, knowing that your loved one is safe, comfortable, and content in his home away from home.

The cost of a respite stay is close to that of a 3-star hotel. At Villa Alamar it is available at $350 per day, although in our area, you may find it for up to $450 per day. Fortunately, there are grants that may help you pay for some of these costs. Your pre-selected care home can help you find some of these programs. Also, contact the local office of the Alzheimer’s Association (805-892-4259) and the Coast Caregiver Resource Center (805-569-8950 ext. 1) for additional information on respite grants.

If you would like more information about respite options and availability at Villa Alamar, please contact me, Luciana at 805-682-9345. 

Do not wait for an emergency. Organize your respite care strategy now and allow our community to be there for you and your loved one, should you need assistance.

If you do not have dementia, it may be hard to understand what goes on in someone’s mind after memory, perception, and reasoning become impaired.

As dementia progresses, loved ones often struggle to get those answers from patients who can no longer articulate their thoughts in sentences. Their words and feelings keep flowing in unrelated segments, as if they were slices of wisdom that run crisscrossing in tangled pathways. Sometimes we grasp a glimpse of the true nature of their momentary state, only to realize that that thought is already gone, and the person has already moved into another mysterious realm of their minds.

Occasionally, however, a patient with dementia expresses themselves with such clarity and brilliance that it ushers us into a clear understanding of what their minds are experiencing. And it can be amazing!

Such a moment happened recently, while one of our residents was walking around and around our community. Villa Alamar is designed to promote safe ambulation, with tree-lined paths that flow in and out of the home, allowing open passage for a continuous strolling, whether it is day or night. Residents can always be seen walking or lounging, enjoying nature in our beautiful gardens, in the safety of our community.

It was towards the end of the day, a time when the condition known as sundowning compels memory care residents to move and go, going to places only they know where. Mr. Kline was going. And in his going he went on and on, until he stopped by one of our caregivers to announce:

“I am in a movie scene that keeps repeating itself,” Mr. Kline said, “and the movie never ends.”

Not waiting for any reply, he resumed his walking. And going on he went, the star of his own movie.

Story by:
Luciana Mitzkun

Printable Article
Printable in Spanish

Written by Luciana Mitzkun

On July 6^th, after years entangled in controversy, Leqembi (generic name lecanemab), a drug believed to mildly slow down the progress of Alzheimer’s in its very beginning stages, has finally received full approval from the Food and Drug Administration (FDA).

Not a cure: It cannot reverse symptoms; it cannot restore previously lost memories or brain functions. The benefits of its use are restricted to a modest decrease in the speed with which new symptoms appear. And of benefit only to patients in the very early stages of Alzheimer’s disease.

Nevertheless, it’s approval is being regarded as a breakthrough in the treatment of Alzheimer’s disease: The second of its class to receive FDA approval, the drug developed by the partnership between Eisai and Biogen laboratories, targets the amyloid plaques in the brain which are partially associated with the disease (although their causation factors, if any, are still poorly understood). Other previously approved Alzheimer’s drugs, such as the largely prescribed memantine and donepezil, target brain functioning with the intent of counteracting the dementia-related symptoms of the disease.

Who should consider this new treatment?

Not all patients with mild cognitive impairment or early-stage dementia will qualify for this treatment, only those with confirmed presence of amyloid plaques in the brain. Research data indicates that patients who do benefit from the treatment show a cognitive decline slowed by up to 27 percent over 18 months—roughly, a 6-month delay in symptom progression. On the road of progressive dementia, it is the equivalent of easing the foot on the accelerator.

Although the overall benefits may be considered by some experts to be not clinically significant, the treatment could delay new dementia symptoms long enough to allow patients a few additional precious months with their families.

Patients who are already in the mid-to-late stages of Alzheimer’s do not qualify for the treatment, neither do those affected with other progressive forms of dementia, such as Lewy body, vascular, or frontotemporal dementia.

How much does it cost?

The treatment is indeed expensive. Medicare will cover the $26,500 annual cost of the drug Leqembi, as long as patients and providers participate in data collection registries tracking the drug’s performance.

In addition to the costs of the drug itself, patients can incur thousands of dollars a year in co-insurance costs related to the every-other-week infusion procedures, which are required for the administration of the drug (no, Leqembi is not in pill form). Amyloid PET scans and APOE4 genetic tests are needed to determine eligibility and individual safety levels of the treatment. There are also costs associated with the continuous scans and other tests needed for the monitoring of potential side effects throughout the treatment.

Side effects? Yes.

A potential side effect named amyloid-related imaging abnormalities (ARIA), has been linked to the use of lecanemab. The condition, which involves brain bleeding, brain swelling, or a combination of the two, is found present in about 2 in 10 people receiving the drug and most cases are either asymptomatic or resolved quickly with proper treatment. During the trial, however, three patients died of it. People who carry a specific gene version called APOE-ε4 are at a higher risk for ARIA.

Considering the evidence of brain-bleeding associated with lecanemab, it is not recommended for people who take strong blood thinners, such as Eliquis or Xarelto. Reactions to the infusion itself can also happen, affecting over 25% of patients.

Should I qualify for the treatment and be willing to take the risks, can I take it?

This treatment may not be readily available to all who qualify and want it—and can afford it.

Doctors must first screen their patients for eligibility, which requires complex imaging tests or a spinal tap to confirm the presence of amyloid in the brain. Infusion-provider sites must be equipped to provide the every-other-week treatment. Imaging centers will also need to offer regular brain scans for the monitoring of side effects during treatment.

It will take some time for most health centers to organize all the components required to provide such complex treatments, and rural area patients may have to travel long distances to access providing facilities.

The $64.000 question: Is it worth it?

Only you can decide if treatment with Leqembi is worth pursuing. The side effects, costs, inconveniences, and personal commitment to the treatment regimen requirements are high, with few promises of actual beneficial outcomes. But for many newly diagnosed patients, any easing in the speed with which the disease progresses, however fleeting, is worth the risk.

Each patient should confer with their doctors and loved ones, consider all the risks, costs, and potential benefits of the treatment, and allow their own personal wishes and philosophy of care to guide them.

We, in the memory care community, will continue to support our friends and families affected with Alzheimer’s whichever course of treatment they select for themselves.

Is this the future in treatments for Alzheimer’s?

There are additional anti-amyloid monoclonal antibody drugs being currently investigated and going through the FDA approval process, such as donanemab which is being developed by Eli Lilly. The data on donanemab has so far shown it to be slightly more effective than lecanemab, especially when considering Tau, the other main protein related to Alzheimer’s disease, as a secondary biomarker.

The current course of international research indicates that the treatment for Alzheimer’s in the foreseeable feature will be short of a cure. More likely, treatments will be composed of a cocktail of drugs targeting both the Amyloid and Tau proteins, with the intention of delaying the appearance of symptoms.

In a disease that robs us of precious time, more effective treatments may buy us some time until one day—dare I wish for it?—there is a cure. For now, delaying Alzheimer’s symptoms, even if only for a few months, may be an incredibly savvy approach to outlasting the disease, after all.

Luciana Mitzkun is a Memory Care Specialist, author of Ahead of Dementia (also in Spanish) and Ahead of Memory Loss, both available on Amazon. For more about Luciana’s work, visit AheadofDementia.com

Luciana serves as the Community Services Director at Villa Alamar, a model residential memory care community in Santa Barbara, California. VillaAlamar.com