Explaining COVID to Dementia Patients. Really?

By Luciana Mitzkun Weston,
Memory Care Specialist
Villa Alamar Community Services Director

Throughout 2020 the COVID-19 pandemic has generated a health care emergency affecting every community around the globe, forcing us all to change the way we live, including learning and practicing social distance, wearing masks, frequent hand washing, meeting through FaceTime or Zoom calls, and working from home. Adhering to some of these new protocols can potentially be a matter of life-and-death at an individual level. Collectively, it is a matter of stopping the spread of the coronavirus, the virus that causes COVID-19.

Prevention strategies are of particular importance to older adults and those living with pre-existing chronic health conditions. Many of those most vulnerable to complications of COVID-19 are patients with Alzheimer’s disease and other forms of dementia. Their caregivers often struggle with the question: How do I explain COVID to my loved one with dementia?

In the world of memory care, DARE is used as an acronym for Do not Argue, Reason, or Explain. DARE is the Golden Rule for dementia caregivers who learn very quickly from their caregiving experiences that arguing with a loved one with cognitive impairment only results in increased petulance and resistance to care; reasoning is a frustrating exercise in futility; and explaining involves a tremendous amount of energy and invariably begets repeated explanations without ever resulting in comprehension.

In practical terms, it is nearly impossible for dementia patients to fully comprehend why it is necessary to cover one’s face with a mask that is uncomfortable, hot, and restricts breathing. They won’t get why you are wearing one either, and will repeatedly ask you to remove it. They don’t understand that hugging is no longer socially acceptable or why they should stay several feet apart, and will continuously move closer and touch others. Their social programs and outlets have been discontinued, and they are having a hard time connecting with the faces on the zoom screen. They feel lonely and cannot comprehend why their friends and families no longer visit them. And frankly, we are all having a hard time wrapping our heads around all these changes!

Yet, it is our obligation as caregivers to protect our loved ones and to maximize their adherence to the most current preventative strategies.

Before attempting to break the Golden Rule, DARE, by trying to explain to a dementia patient the way things are, there are three aspects of living with dementia we should keep in mind. Consider: (1) Dementia patients live in a world of fear, their biggest being fear of abandonment. Adding COVID-19 and the worldwide confusion regarding its spread to their existing fears can cause them great emotional distress. (2) When cognition is impaired, the importance of touch is paramount. Social distance may be interpreted as personal rejection. (3) Your primary objective is not to impart the understanding of exactly what is happening in regards to the pandemic, but rather to solicit the patient’s adherence to the appropriate preventative strategies.

Don’t explain. When taking these aspects into consideration, it becomes clear that explaining the pandemic is unnecessary—and may even be detrimental—when it comes to a person with dementia. Instead of providing elaborate explanations of something we don’t even fully understand ourselves (new information is released almost daily), here are some better ways of promoting emotional reassurance and compliance with safety strategies for your loved ones during the pandemic:

  • As an alternative to COVID-19, use the term FLU
    In most cases, dementia causes a progressive loss of cognitive abilities that slowly increases over the years. At some point in this progression, the patient loses the ability to learn new information (what caregivers often attribute to problems with short-term memory). For those whose dementia has crossed this point, learning information about a new disease can be very challenging. If it is necessary to mention the pandemic, you may want to refer to COVID-19 simply as a flu. Most people are familiar with the concept of influenza, which, just like COVID-19, is caused by a virus that is passed through the air from one person to another. Using this term may impart enough information to justify some of the precautionary measures we now use. We are in flu-season sounds far less scary than the bigger picture of a pandemic and will not add too much to the world of fear in which dementia patients generally dwell.
  • Create a coronavirus-free bubble around your home
    Picture your home in a bubble. Inside the bubble you and your loved ones live a full life, free of coronavirus. All you need to do is prevent the coronavirus from entering your bubble from the outside.
    Coronavirus may be brought in from the outside by you or other members of the household. When stepping outside, practice all the appropriate preventative strategies (well-fitting masks, social distancing, etc.) Avoid crowds. Thoroughly wash your hands and disinfect your masks as you arrive home from outside your bubble. Insist on and verify that all members of the household do the same.
    Coronavirus may also be brought in by visitors. These include friends and family members, but also workers such as repairmen and window washers. Avoid receiving non-essential visitors. If necessary, receive no more than two visitors at a time. Screen all visitors for signs of COVID-19 (temperature higher than 100, headache, fatigue, cough, shortness of breath or difficulty breathing, muscle or body aches, sore throat, nausea or vomiting, diarrhea). Don’t be embarrassed to take their temperature (touchless thermometers are great for that) and to ask all the questions about possible symptoms: You have a vulnerable adult in the household who needs your protection; your visitors will understand. Have your visitors wash their hands as they arrive and have everyone wearing masks and practicing social distancing for the duration of the visit. If possible, visit outside (porch, patio, or backyard).
  • Social distancing
    Having your home in a coronavirus-free bubble means that those living inside can ignore social distancing and enjoy togetherness. Hugging, holding hands, touching, sitting side-by-side on the couch while watching a movie: These are some expressions of affection that are very important for dementia patients, especially as their ability to express themselves in words and gestures become impaired. If your bubble is well maintained and protected, do share these expressions of affection freely at home.
    However, when out of the home, social distancing is required. This may be a challenge for your loved one with dementia when accompanying you to a necessary errand, as in shopping for groceries or picking up a prescription at the drugstore. You know your loved one better than anyone else: Can he maintain social distance? If he can, do bring him with you, by all means─he will enjoy the outing. If you are unsure, leave him at home with a companion or a helper. The last thing you want to do is to shame and humiliate him in public by repeatedly calling his attention to respect social distance and step away from others. (You do not have a helper? Contact your local office of the Alzheimer’s Association and ask for respite options).
  • Use matching masks, make it fun
    Masks can be made in a variety of patterns and designs. Find one that matches your loved one’s likes, such as those that depict flowers, kitties, favorite football team, flag, or classic cars. Offer options: Do you want to wear the one with an eagle or the one with a bear today? And wear a themed mask yourself, so wearing masks is seen as a little game between the two of you. Include other family members in the fun, whenever possible.
    Also, watch for comfort and proper fit. Ill-fitting masks may cause cuts, abrasions, or excessive pressure on the face and around the ears, and your loved one may not be able to report it. Visually inspect the mask for a comfortable fit. Make sure it covers the nose and has a close fit around the cheeks.
  • Establish routines
    Wash your hands immediately as you arrive home after every outing. Wash your hands together frequently and model proper hand washing. Post reminders on a white board, so your loved one can be prompted to wash his hands on his own. 
  • Avoid crowds and find ways to enjoy the outdoors
    We now know that being outdoors is safe, as long as you avoid crowds and wear a mask. People with dementia benefit tremendously from being outdoors, if not for the physical activity just for the opportunity of looking at trees and being in nature. Always avoid crowds, but look for safe opportunities to take your loved one outdoors: Take regular walks, visit a park, or share a meal in a car parked facing a scenic area such as the beach, a lake, or a garden.
  • Give plenty of compliments
    Make your loved one feel good about wearing a mask and maintaining social distance. Compliment on their stylish looks and positive attitude, and let them know that they are loved and appreciated.
  • Listen to their concerns
    Don’t assume how she might be feeling. Ask; listen to their concerns and allow them to express themselves. You may be surprised by some of their comments and by how uniquely they are affected by all the changes we now live with. Their perspective may bring clarity and humor into your own outlook. Use this opportunity to assuage any anxieties they may have.
  • Write uplifting messages in cards
    A great way to communicate with those with dementia is through the written word, since cards and messages can be read repeatedly and provide continuous reassurance. Have family members send cards as well, posting them where they can easily be revisited. Encourage your loved one to write messages back. This is a great activity to do indoors, stimulating creativity. 
  • Make window visits count
    For those who are in assisted living and living under lockdown, or for those at home who wish to visit with family and friends who are not part of the household, window visits may be appropriate. Prepare the window space in advance with comfortable sitting both in and outdoors. You can use a cell phone on speaker-mode to facilitate the conversation, so that the parties don’t have to shout through the glass. Bring a picture to share and talk about. And why not make it a party? Bring treats to share and eat together, although apart.
  • Project confidence and positivity
    These are times of great social anxiety and wide-spread instability. We are all concerned about the present and uncertain about the future. Dementia patients are experts in reading between the lines and picking up on your moods and feelings. When with them, it is important to take a break from all the negativity and behave as if under a positive light, so that our fears and concerns are not transmitted to them. This will shield them from fears and anxieties they cannot mitigate. This will also, maybe, give you a respite from your own concerns and help you stay in the moment and better enjoy your own day.

Health experts are now saying that we may not go back to normal until late 2021. Whatever the “normal” to which they are referring will be, clearly our lives will never be the same again. Like everything else, dementia care will adapt. As long as we keep in mind that this is a disease of emotions, not logic, we will succeed in providing quality care to our loved ones. Attend to your loved ones’ requirements for safety and comfort, never overlooking their primary needs for love, companionship, and emotional reassurance. Do the same for yourself, and we will make it through this crisis.

Difficult Behaviors – Part Two

How to Keep Patients Safe and Caregivers Sane

by Luciana Mitzkun Weston

Part two: Preventing Difficult Behaviors

Dementia creates a highly disorienting feeling. Patients often feel confused regarding date, place, time, and what actions others expect of them. Consequently, they have an elevated risk for anxiety, frustration, and agitation, which are feelings that often manifest in form of difficult behaviors.

We cannot predict which patients will present difficult behaviors and exactly what behaviors will there be. However, it is safe to assume that without the implementation of supportive strategies every dementia patient is at risk of presenting difficult behaviors. Studies indicate that as many as 8 in 10 dementia patients do develop behavioral symptoms that interfere with their care and their own safety. Therefore, all caregivers are advised to adopt preventative strategies starting at early stages of neurodegenerative conditions.

There are several supportive strategies that can be utilized to help prevent the development of difficult behaviors. Which strategies are most effective for a particular patient clearly depends on who the patient is. Dementia affects each one of us differently, and we all face the condition armed with our own individual set of abilities and strengths. Everyone of us is unique. We have unique interests, history, desires, connections, and memories. The adoption of supportive strategies must take in consideration the patient’s individual needs.

Basically, the goal is preventing your loved one from becoming confused while allowing him to engage in activities that can be accomplished within his current abilities. In other words, keeping the patient in the zone: above from boredom and below over stimulation.

When considering a care plan, make sure to include those supportive strategies that are compatible with your loved one’s lifestyle and personality, always trying to integrate personal interests, likes and dislikes. The more preventive strategies you adopt, the better equipped the patient will be to combat the disorienting symptoms of dementia.

Here are some possible strategies used to prevent future difficult behaviors:

  • Establish a routine schedule: Waking up, eating meals, enjoying activities, having nap breaks, and retiring to bed at the same time every day can greatly minimize confusion and provide the patient with a sense of security and wellbeing. Meals served at regular times anchor the day, and even patients who have their circadian rhythm disrupted will benefit from a stable, consistent meal schedule.
  • Simplify all rituals: From personal hygiene and grooming to all other activities of daily living, simplify as much as you can. For patients with dementia, less is more: fewer options present a lesser challenge than having a big array of choices demanding decision making. Keeping this in mind, make his favorite items available, and avoid presenting a large variety of options. One shampoo on the shelf will indicate its use better that having four or five different bottles to chose from. A table setting with salt and pepper will be less confusing than one with a caddy offering a wide variety of condiments. In the same fashion, a wardrobe with fewer options is more functional than one with multiple possible combinations of garments and choices.
  • Declutter the home: Clutter creates an insurmountable challenge for a person affected with dementia. It not only makes organizing impossible, but also presents an additional hazard to those who have a compromised sense of perception. Clutter creates confusion and increases the risk of falls. Make sure rooms are neat and devoid of clutter, passageways are unobstructed, and counters are clear. It is also useful to illuminate dark spots and install motion lights in corridors, bathrooms, and kitchen.
  • Provide opportunities for physical exercise: Whether it be a walk around the block or a session with a personal trainer at the gym, exercise is essential to promote wellbeing and cognitive health. It is also the best way to prevent falls. Make sure your loved one has plenty of opportunities to exercise within his abilities, and that an exercise regimen is included in his daily routine.
  • Allow for access to nature: Whether it is a walk in the woods or sitting in a garden, being in nature is soothing and lowers stress and anxiety. Patients who have access to nature settings are less prone to develop anxiety and are less likely to need psychotropic medications.
  • Use music to support activities: A musical background that is complementary to the activity at hand promotes concentration and helps patients to stay in the zone. This principle can be used by selecting a soothing classical piece to play during meals or by playing a more upbeat modern melody during exercise. Just keep in mind that personal preferences must be observed when selecting a musical background: play songs that HE likes.
  • Install a white message board: Using a white message board to leave messages and reminders for your loved one is the best way of enhancing communications and avoiding confusion. Use it to keep him informed of the events of the day, such as “2 pm: visit w/Dr. Thomas,” or leave short messages such as “I’m getting a haircut, be back at 11 am.” Only write information that is relevant to the present day and instruct your loved one to read it frequently. The board will become a great tool in avoiding confusion even as dementia progresses.
  • Check your own body language: Dementia patients do not respond well to reasoning and explaining. However, they are experts in reading body language. Make sure your body language is free of reproach and conveying a message of friendliness. Smile a lot. Moderate your tone of voice. Address him with affection and understanding. If you allow fatigue or frustration to modulate your actions, your loved one will pick up on it and react accordingly, even if he does not know what is motivating you. And you won’t be able to explain to him why you are feeling in such ways. Avoid reflexive negative actions by controlling your own body language around him. Look for ways of taking respite breaks if you feel it is becoming hard to control your own frustration.

There are many other therapeutic strategies that could be considered as preventatives for difficult behaviors. A dementia expert could help you identify other more individualized ways of caring for your loved one.

Start identifying and implementing preventative strategies in the early stages of the disease: do not wait for behaviors to appear. The more successful you are in keeping your loved one from becoming confused and disoriented the less problems with difficult behaviors you will have as the disease progresses.

Next month we will be publishing Part III of this 3-part series, where we will be providing  strategies to treat difficult behaviors if they appear.

Part I: Identifying Difficult Behaviors
Coming soon:
Part III: Treating Difficult Behaviors

Difficult Behaviors – Part One

Difficult Behaviors in Dementia:
How to Keep Patients Safe and Caregivers Sane

by Luciana Mitzkun Weston,
Villa Alamar Community Services Director

Part one:
Identifying Difficult Behaviors

At times, people living with Alzheimer’s or other forms of dementia act differently than what would be considered their normal behavior. Whether it be expressions of frustration and stubbornness in the beginning stages of the disease, or resistance to care and agitation in later stages, some changes in behavior should be expected.

Dementia often causes patients to experience confusion in relation to place and time, what to do next, and what others expect of them in social situations. Confusion leads to an increase in feelings of fear and anxiety, which in turn causes a patient to exhibit difficult behaviors. Caregivers are often puzzled and bewildered by these troublesome behaviors.

Some of these behaviors are perplexing, but harmless. Caregivers may even find it amusing when their loved ones start tearing page after page out of magazines and folding them multiple times into increasingly smaller pieces, until they can no longer be folded; some patients move items around the house, continuously rearranging and moving them again; some patients enjoy bursting the bubbles on packing materials, or watching the same TV show over and over again.

Dementia patients find such repetitive actions to be soothing and can continuously engage in performing them for countless hours. Although some of these behaviors can constitute an annoyance to their loved ones, they are merely a manifestation of a patient doing what simple task he can to entertain himself.

If the behavior is not harmful to the patient or others and can be performed without major disruptions to the household, it should not be discouraged. Ensuring that the patient has a safe and comfortable  space for himself to engage in the chosen behavior is the best strategy in this case. Harmless behaviors, although sometimes annoying to caregivers, should not be considered a difficult behavior, but rather seen as an “activity.” Activities are desirable: They keep the person at ease, engaged, and centered in the moment.

On the other hand, some behaviors can pose a risk to the patient’s wellbeing, disrupt the functionality of the household, or interfere with the caregiver’s ability to provide care. Behaviors such as shuffling and moving furniture, dismantling and disassembling electronics, wandering and getting lost in the neighborhood, picking at one’s own skin to the point of creating open sores, or screaming and yelling at odd hours, are certainly behaviors that call for intervention as well as an increase in the patient’s supervision. Such behaviors can pose a risk to the patient’s and caregiver’s health, and significantly decrease the caregiver’s ability to provide care.

As a general rule:

If the behavior is harmful to the patient or others or

if the behavior interferes with the caregiver’s ability to provide care,

it should be considered a “difficult behavior.”

We should also consider that what we define  as a difficult behavior is often a manifestation of some form of stress or discomfort: Your loved one may be over- or under-stimulated, may be in some form of pain (physical or emotional) or may be suffering from depression or anxiety, or even in some cases, be afflicted with an infection or other health condition. Look for the underlying cause. While the behavior itself deserves attention, the cause behind it requires proper investigation and care (we will address these strategies on Part III of this article).

Difficult behaviors in dementia patients are the primary reason caregivers seek Villa Alamar’s memory care services. Indeed, most residents do experience an improvement in the frequency and severity of difficult behaviors after transitioning to Villa Alamar.

This improvement is made possible by the many dementia supportive strategies we have adopted in our community. The environment itself makes a big difference to the residents’ ability to conquer confusion and achieve enjoyment in daily activities. Having freedom to safely stroll indoors and outdoors through patios and paseos, having access to nature (trees, sounds, smells, birds), receiving encouragement to participate in programs that are designed to be achievable, meaningful, and fun for the resident, and having experienced and kind caregivers always close and ready to provide assistance: All these strategies work to suppress confusion and promote wellbeing and social interaction. Less confusion generates lower anxiety levels and reduced urge to act in difficult or inappropriate ways. In the right environment, with careful and consistent stimulation, dementia patients thrive!

Family caregivers can adopt many of these strategies in their own homes to help reduce the occurrences of difficult behaviors and to extend their ability to care for their loved ones in place. 

Part II: Preventing Difficult Behaviors

Record Visitor Numbers at Senior Expo

Villa Alamar and Alexander Gardens are Proud Silver Sponsors of the 31st Annual Senior Expo of Santa Barbara

Pictured: Mitch Leichter, Ingrid Lino, and Shandy Newlan. Photo: Mary Brook.

Multiple businesses and organizations joined together this October 2nd to offer valuable information and services to local seniors at the 31st Annual Senior Expo, a Santa Barbara tradition.

The event took place at the Earl Warren Showgrounds and counted with 120 exhibitors and 300 volunteers, workers, and exhibitor associates.

A record number of visitors (over 1000) attended the Expo, where they were able to gather information on a variety of services including health, transportation, and financial planning.

Memory care and assisted living are some of the major concerns for seniors in Santa Barbara. Our Villa Alamar and Alexander Garden teams were there to provide firsthand information on quality assisted living and memory care services.

We were also represented at the event’s planning level. Our Associate Executive Director, Joseph Newlan, LVN is a member of the event’s all-volunteer planning committee while also, in collaboration with Jeanne West, RN, co-coordinator and recruiter of nurses for the flu-shot clinic.

Jeanne was the driving force behind the creation of the flu-shot clinic back in 2001, when it was first offered at the Senior Expo with vaccines donated by Cottage Health. The clinic became a big success and its creation is accredited for doubling the number of visitors at the Expo, which at the time was dwindling.

This year the flu-shot clinic at the Expo gave visitors 764 vaccines over a 3-hour period, and counted with the help of 16 nursing students and 16 nurses (RNs and LVNs), among them our beloved Resident Services Director, Shandy Newlan, LVN (who is also Joseph’s wife).

Shandy herself administered 42 shots on that morning.  “I really enjoy these clinics,” she said, “It is a joy to be able to help so many people in one single event.”

In 2020 Joseph will be taking over the duties of coordinating and recruiting nurses for the event, while Jeanne, who is also the Community Engagement Manager at Hospice of Santa Barbara, will be dedicating herself to inter-agencies recruitment and coordination.

Back for the third time this year, the Caregiver’s Cafe was offered as a relaxing place to receive support and information. Caregivers received consultations and information on services and strategies for their individual needs, including in-home help, assisted living, and caregiver support.

Other valuable resources available included blood pressure screening by Santa Barbara Neighborhood Clinics, glaucoma screening by Lions Sight & Hearing, hearing screening by Miracle Ear® of Santa Barbara, and bone density scans by OsteoStrong.

Hailed as one of the best Senior Expos to date, the event’s committee led by the Family Service Agency deserves recognition for its flawless organization and for the quality of the services provided.

The staff and management of Villa Alamar and Alexander Gardens are proud of having collaborated for the success of this year’s event and are looking forward to contributing to the 2020 Expo!

Creating a Dementia-Friendly Home

by Luciana Mitzkun Weston, Villa Alamar Community Services Director

Dementia relates to an overall loss of cognitive abilities, often affecting memory, reasoning, organization, language, attention, abstraction, and perception.

Deficits in most of these areas can be easily identified by the caregiver. We can all understand the difficulty someone might have with word finding or performing a multi-step task, such as planning the week’s meals. However, caregivers seem to have a much harder time understanding difficulties in perception and, in particular, visual perception.

Visual perception is an important brain activity that most of us don’t even realize we are performing. We trust our eyes to capture images of the world we live in, and we rely on these images to be correct representations of our environment. Seeing appears to be instantaneous and effortless.

Our brains, however, are constantly processing these images, recognizing and charting them against previously acquired knowledge. The brain unconsciously analyses the position of each image, its movement, size, color, and shape, and finally reconstructs those pieces into our own view of the world.

Basically, what we see is what our brains make of the visual images our eyes capture. This is visual perception, and it is a unique experience for each of us.

Visual perception is often affected as dementia progresses. Although the brain continues to work hard to make sense of visual information, it begins to misinterpret what the eyes see.

This kind of misinterpretation may cause some unforeseen challenges to caregivers, who do not notice the perceptual difficulties because perceiving is something we all do without ever noticing it. We take it for granted.

An environment designed for the comfort and care of dementia patients must accommodate for changes in visual perception. Lighting, visual contrasts between floors and walls, and the use of color can help people with dementia better navigate their surroundings.

When designing or evaluating a dementia-friendly home beware of floors with three-dimensional patterns (such as in tiles) that can cause the person to become uncertain of her footing which can cause them to trip and fall. Dark-colored areas on rugs can be misinterpreted as holes in the ground and become an impassible barrier. Mirrors can also be problematic. They reflect images that people with cognitive impairment may not recognize as their own and may interpret their reflection as a “strange person in the room constantly watching me”. This kind of experience can be scary and set in motion a negative mood that lasts for the rest of the day.

It is important to make things as simple and clear as possible. Eliminate clutter and other elements that might be contributing to confusion and agitation. Slight modifications to accommodate perceptual deficits can greatly enhance the sense of well-being and confidence of a person with dementia.

Villa Alamar is meticulously designed to provide residents with clear pathways and support their ability to move through different environments, thus promoting feelings of self-reliance and well-being. Residents walk confidently from rooms to outdoors, dining rooms to social activity areas, while experiencing sounds, scents, artworks, and nature features that are both soothing and stimulating.

The easiness with which our residents navigate our community and the sensory-richness of our carefully maintained environment are some of the reasons why our home is uniquely qualified to care for dementia patients.

If you’d like to learn more about creating a dementia-friendly home, please contact us and schedule a tour. We look forward to offering you a tour and will be happy to show you what makes Villa Alamar a model in dementia care.

Call to schedule a tour:



Researches Define Disease that Resembles Alzheimer’s

A brain disorder that mimics Alzheimer’s disease has for the first time been defined: Limbic-predominant Age-related TDP-43 Encephalopathy, or LATE.

Alzheimer’s disease is characterized by beta-amyloid, a protein that forms into hardened plaques in the brain and causes neuron death. The main symptom of Alzheimer’s is dementia, which is loss of cognitive functions—thinking, remembering, and reasoning—and every-day behavioral abilities. It is difficult to obtain an official diagnosis. For most people, Alzheimer’s can only confirmed after death, with a brain autopsy.

In the past, Alzheimer’s and dementia were often considered to be the same.

Now there is rising appreciation that a variety of diseases and disease processes contribute to dementia. Each of these diseases appear differently when a brain sample is examined at autopsy. However, in advanced age, a large number of people have symptoms of dementia without the telltale signs in their brain at autopsy. Emerging research seems to indicate that the protein TDP-43—though not a stand-alone explanation— contributes to that phenomenon.

TDP-43 (transactive response DNA binding protein of 43 kDa) is a protein that normally helps to regulate gene expression in the brain and other tissues. Prior studies found the presence of TDP-43 in most cases of amyotrophic lateral sclerosis (ALS) and frontotemporal dementia, which are relatively uncommon diseases. A significant new development seen in recent research is that misfolded TDP-43 protein is very common in older adults. Roughly 25 percent of individuals over 85 years of age have enough misfolded TDP-43 protein to affect their memory and/or thinking abilities.

TDP-43 is also commonly associated with severe shrinkage of the hippocampal region of the brain—the part of the brain that deals with learning and memory. Hippocampal shrinkage causes cognitive impairment that can be very similar to the effects of Alzheimer’s.

The problem for researchers is that many people with characteristics of LATE disease—memory loss and confusion—are involved in clinical trials for Alzheimer’s that target beta-amyloid. When these trials fail, it may be because they do nothing to address TDP-43.

“Recent research and clinical trials in Alzheimer’s disease have taught us two things: First, not all of the people we thought had Alzheimer’s have it; second, it is very important to understand the other contributors to dementia,” said Nina Silverberg, Ph.D., director of the Alzheimer’s Disease Centers Program at NIA. In the past many people who enrolled in clinical trials were not positive for amyloid.

“Noting the trend in research implicating TDP-43 as a possible Alzheimer’s mimic, a group of experts convened a workshop to provide a starting point for further research that will advance our understanding of another contributor to late life brain changes,” Silverberg explained. In addition to U.S. scientists, experts included researchers from Australia, Austria, Sweden, Japan, and the United Kingdom with expertise in clinical diagnosis, neuropathology, genetics, neuropsychology and brain imaging.

As it turns out, LATE is an under-recognized condition with a very large impact on public health. It is estimated that nearly one million people diagnosed with Alzheimer’s are actually affected with LATE. Older adults (85-95) are at greatest risk for LATE and the public health impact of the disease is believed to be at least as large as Alzheimer’s in this group. LATE affects multiple areas of cognition, ultimately impairing activities of daily life. Additionally, based on existing research, LATE progresses more gradually than Alzheimer’s. However, LATE combined with Alzheimer’s—which is common for these two highly prevalent brain diseases—appears to cause a more rapid decline than either would alone.

“It is important to note that the disease itself is not new. LATE has been there all along, but we hope this report will enable more rapid advancement in research to help us better understand the causes and open new opportunities for treatment,” said Dr. Silverberg.

For more information about participating in Alzheimer’s disease and related dementias clinical research, visit the NIA website.

Source: NIA Guidelines proposed for newly defined Alzheimer’s-like brain disorder, 


Dancing Helps Keeping Your Brain Young

Do your want to slow down the signs of aging and keep your brain active? So pick up your dancing shoes!

As we age, a number of brain changes occur, including a decrease in brain size, a reduction in blood flow, and a decline in communication between brain cells. These changes can interfere with cognitive functioning, especially learning and memory.

Numerous studies have found that physical activity can help to reduce cognitive decline in later life and exercising regularly has been linked to a slower decline in memory and thinking skills for those 50 and over.

But which forms of exercise are most effective against brain aging? Studies show that older people who routinely partake in physical exercise can reverse the signs of aging in the brain, and dancing has the most profound effect.

According to Dr Kathrin Rehfeld, lead researcher at the German center for Neurodegenerative Diseases, Magdeburg, Germany, exercise has the beneficial effect of slowing down or even counteracting age-related decline in mental and physical capacity. “In our studies,” she says, “we found that two different types of physical exercise (dancing and endurance training) both increase the area of the brain that declines with age. In comparison, it was only dancing that lead to noticeable behavioral changes in terms of improved balance.”

The complex mental coordination that dance requires activates several brain regions (cerebellum, somatosensory cortex, and  basal ganglia) triggering movement, rational, musical, and emotional responses. This strengthens neural connections and can improve our memory. Older adults who dance have bigger hippocampus (a part of the brain responsible for memory consolidation) and better balance.

Dance and ageing research has also shown its positive impact on the neurology in healthy and dementia groups, indicating that dance could be used as therapy to improve visual perception and spatial memory, which are areas of cognition commonly affected by dementia. Additionally, dancing has the following benefits:

  1. Dance is a stimulating mental activity that connects mind to body, increasing feelings of well-being. The essence of dance is joy: It simply makes you feel good!
  2. Dance develops flexibility and instills confidence, increasing muscular toning, agility, and diminishing the risks of falls.
  3. Dance increases awareness of where all parts of the body are in space. Dance focuses attention on eyes, ears, and touch as tools to assist in movement and balance, further diminishing risks of falls.
  4. Dance breaks isolation and stimulates social interaction, which helps in the fight against depression.
  5. The basis of dance is tempo, beat, and rhythm, all which stimulates the mathematical functions of the brain and the formation of new synapses.

The UCSD pioneer Alzheimer’s Diseases expert, Neurologist Dr. Robert Katzman, who died in 2008, was a stanch advocate of dancing as a way to stave off cognitive decline. He once said: “Freestyle social dancing, such as foxtrot, waltz and swing, requires constant split-second, rapid-fire decision making, which is the key to maintaining intelligence because it forces your brain to regularly rewire its neural pathways, giving you greater cognitive reserve and increased complexity of neuronal synapses.” Cognitive reserve acts as your brain’s savings account which provides you with increased resilience against memory loss.

Building your brain’s neural complex works in much the same way as exercise, to get fitter you have to train regularly. So, the more dancing you do, the greater your cognitive reserve. And don’t worry about having to attend dance classes: You benefit from just going out dancing. Your improvisational skills on the dance floor is enough to fire up the rapid decision-making needed to forge new neural pathways.

At Villa Allamar, music and dancing are important components of our wellness program. Please check our Activities Calendar on a regular basis and join us for cognitive strengthening, feel good social events!


Married with Caregiving – a Loving Couple’s Challenge

By Luciana Mitzkun Weston

Couples enjoy activities together, such as a meal, movies, travel, walks, or visits with friends and family. Couples engage in supportive conversations, sharing their views, daily experiences, and a good laugh at the end of the day. Together they become a strong social unit, developing a unique way of communicating with one another and creating they own history and identity—raising families, developing social relationships, attending social engagements, making a home. Dementia, however, may affect every one of those relationship-building blocks that couples so lovingly cultivate together, often over a lifetime.

Alzheimer’s disease and other forms of progressive dementia often have a profound impact on spousal relationships. While one spouse gradually becomes a care receiver and the other a caregiver, the very nature of their bonding ties begins to change.

Changes in perception, memory, and attention tend to render many previously enjoyed activities unsuitable to dementia patients. Caregiving spouses will find that they must adapt their own activities in order to accommodate their partners’ ability to participate. Dementia affects communication skills and patients are no longer able to share those private conversation moments in the same way, creating a void for their caregiver partners. Patients may decrease they interest in participating in social activities, distancing themselves from friends and family, even forgetting precious memories of a cherished marital history.

A decline in shared activities, loss of a spouse’s emotional support, and the erosion of verbal communications between the couple—taken together, these factors will ultimately impact intimacy. The very nature of the relationship is affected as dementia-related symptoms begin to alter mood, behavior, and ability to conduct personal interactions. Caregiver spouses are also deeply affected by these changes, often reporting feelings of increased loneliness and a longing for having the vanishing relationship back to where it was.

Expressions of affection are essential to our well-being, and the need for closeness does not diminish with age or cognitive decline. Dementia patients seek and thrive in closeness, although in different ways than prior to the on-set of dementia. Spouse caregivers, yet again, need to adapt to their loved one’s changes to allow for loving expressions.

Difficulties in intimacy for couples affected by dementia are common and can be expected, although it is not possible to predict what specific dementia-related changes any particular patient will experience. Each patient experiences dementia symptoms in unique ways, and each couple will have its unique challenges. Moreover, depending on the progression of the patient’s underlying disease, changes can be fluctuating or temporary, which brings an additional element of unpredictability and insecurity to the relationship.

However challenging all of these changes may be, it is important for the health and well-being of both spouses to nurture the relationship, maintain a sense of intimacy, and allow for expressions of love and affection. When communications skills decline, touch becomes an even more powerful means for couples to convey affection. People with dementia need to feel loved, to feel safe, and to feel accepted. Loving touch and affection from their spouses can bring them a lot of comfort and even help lessen some of the negative behavioral and psychological symptoms of dementia.

All couples facing dementia will need to find new ways to nurture and promote closeness, and many times the caregiver spouse is the one who bears the greatest share of the responsibility for keeping the relationship alive. This is a recurrent topic in conversations among spouse caregivers, who, in the support groups they attend, often exchange valuable information about coping strategies and how they preserve their relationship throughout the progression of dementia.

Fundamentally, all methods of enhancing communication between spouses can potentially help promote intimacy and preserve the relationship. There are a variety of programs and workshops available for couples affected with dementia, designed with the purpose of increasing communications and togetherness. Programs that stimulate communication between spouses through shared artistic expression, including visual arts, musical, and body work, are particularly beneficial.

Some dementia-related symptoms that may be affecting the relationship can be addressed and alleviated with appropriate medical therapy. Spouse caregivers should be encouraged to discuss relationship challenges with the doctor and seek possible treatment options.

Although caregivers will never be able to restore a relationship to what it was before, there is much that can be done to help nurture the relationship and keep both partners emotionally fulfilled and supported.

Relationships are complex and multifaceted, and very vulnerable to changes in each partner. Caregivers must keep in mind that although dementia takes much from their loved ones, there is still much left in them. Ways of expressing love may change, but love remains intact. And each moment may bring a new and precious way to honor and express it. Understanding dementia and making room for loving moments to flourish may well be the key to a successful marriage and a successful partnership in dementia.

Planning for Residential Memory Care

Doctors diagnose, nurses heal, and caregivers make sense of it all.
— Brett H. Lewis

Overlooking or disregarding the option for residential dementia-care in planning for the future needs of a loved one with dementia is an unfortunate mistake that happens frequently.

Some family caregivers have a negative opinion of nursing homes and feel that this type of care cannot meet their high expectations of quality care. There are some who believe that personal care is a family obligation, and they must provide all care themselves. They may equate placement in a residential facility with abandonment and may have strong feelings of guilt when accepting help from a professional caregiver. Some have even made a promise to their loved one, I will never ever put you in a nursing home.

It is important to keep an open mind regarding this issue and carefully examine all factors and their possible consequences. Consider that people affected with progressive dementia may reach a point in the disease when they require extensive 24/7 care. Late-stage dementia care includes complex medication and nutritional management, incontinence monitoring and help dressing, cognitive and ambulatory supportive activities, aspiration prevention, fall control, physical therapy, and assistance with transfers in an environment that addresses safety concerns. The additional requirements of late-stage care can be overwhelming for family members, who may already have dedicated their efforts through several years of direct care. The cumulative stress of caregiving may result in severe safety and health hazards for both the patient and the caregiver at late stages.

Utilizing the help of professionals, especially when considering the highly demanding and specialized needs of late-stage dementia patients, does not constitute abandonment; it is providing for the overall needs of the patient and, at a certain point in the patient’s decline, it is the responsible thing to do. The patient is suffering from a debilitating brain condition requiring specialized care. And specialists are educated and prepared to provide this type of care in a nurturing and dignified manner in a safe environment.

One would not deny specialized medical care to a patient with a broken leg. In the same way, it is the caregiver’s responsibility to ensure that the dementia patient receives specialized care—particularly late-stage patients who may have advanced to a point that residential care is the most recommended.
Families can certainly extend the duration that care is provided in their own home by hiring professional in-home care assistance. Agencies specializing in dementia care and management can greatly enhance the quality of care in the home and provide much-needed respite to family members. These services can be contracted on an as-needed basis and can range from a few hours per week companion care to as much as 24/7 intensive care. As dementia progresses, however, the level of required assistance increases, and so do the hours—and cost—of the required professional in-home care.

Preparing for the day when it may no longer be safe or financially feasible to continue care in the home is an important part of a care plan. Knowing ahead of time who to contact, where to go, and how much it may cost will best ensure the patient’s safety, provide peace of mind, and potentially save the family a substantial amount of money.

Dementia Changes Everything

With medical and technological advances, we now tend to live 30 years longer than people did in the early 1900s. Elder care has changed a great deal in the past four decades, and we have long abandoned the old concept of institutionalization. Retirement communities today are sought-after options for seniors. However, when addressing the special needs of an advanced dementia patient, most available retirement options are inappropriate.

Progressive dementia, such as in Alzheimer’s disease, requires proper treatment and management. In many cases, the appropriate management can best be delivered in Residential Care Facilities for the Elderly (RCFEs), which are uniquely equipped to care for dementia patients.

Unlike nursing homes, RCFEs do not provide skilled nursing care. RCFEs are non-medical facilities that can provide room, meals, housekeeping, supervision, medication dispensation, and personal-care assistance with basic activities (e.g., hygiene, dressing, eating, bathing, and transferring) for residents 60 and older. Because their regular services were not originally intended for dementia patients, RCFEs offering dementia care must meet additional licensing requirements.

Modern dementia care RCFEs (such as Villa Alamar) are specially designed to provide a safe and soothing environment, where residents are monitored around- the-clock, yet still feel homey. Staff are trained to be personable, nurturing, and to identify and report any signs of discomfort or distress. Planned activities take into consideration each patient’s individual needs and strengths, promoting the preservation of basic independence skills, and reducing health hazards. RCFEs are not required to have medical staff in-house, but a medical team is often available to assist and support residents. These highly specialized homes also encourage family visits and participation, so residents continue to feel included and appreciated.

Dementia care facilities are best designed with simplicity in mind, which helps residents remain calm and avoid confusion. The simplicity of the settings may appear plain and dull to most healthy people, but those affected with dementia thrive in them. They also provide stimulation and opportunities for social interactions and activities that may not have been possible at home. Soon after placement, with proper attention and expert care, residents often feel better, develop new friendships, and express contentment in their surroundings and daily activities.

Families caring for a loved one with dementia must take the time to study placement options and identify the most appropriate dementia care residential facility. Making these decisions ahead of time will avoid the likely complication of having a sudden and unforeseen event precipitating the need for immediate placement. Such events may appear in the form of a sudden worsening of the dementia, a new health condition unrelated to dementia, or a family emergency— including the possibility of a health event impacting the closest caregiver. So even if you do not seek or foresee placement in the near future, become informed about your options. It will help you better understand the complexities of dementia care and avoid your getting caught in a crisis situation without a backup plan. In other words, hope for the best but prepare for the worst.

Learn About Your Options

Here are some steps you can take to learn about local dementia care facilities:

  • Contact your local Alzheimer’s Association office for information on dementia care resources.
  • Consult a placement specialist in your area. They can be extremely helpful in narrowing down care facility options to the ones that best fit your family’s needs.
  • Not all facilities provide dementia care. Make sure that the facility you are considering has experience with dementia and meets all of the state licensing standards to provide dementia care.
  • Consult the Long-Term Care Ombudsman. The local ombudsman office keeps records of all citations RCFEs have received from licensing agencies, so families can review the reports for any facilities they are considering. Also, ask for a RCFE checklist, which specifies the standards you should verify when touring a facility.
  • Visit several homes and speak to the administrators. The administrator is also the heart of the facility and sets the standard of care for the entire staff. Make sure you share the same values and have similar approaches to care. Keep a personal checklist for each home you visit to see how they compare; note the pros and cons of each.
  • Inquire about hospice waivers. Hospice care is recommended for patients who are approaching the end-of-life; services can be delivered in the patient’s place of residence. Not all RCFEs have a hospice waiver, a permit to care for people on hospice. Without it RCFE residents would be required to move into a hospice facility should their condition worsen. Most families prefer to avoid the drama and trauma of moving a loved one facing end-of-life issues.
  • Inquire about costs. Supplemental Security Income (SSI) has extremely limited funding for qualifying residents. Medicare and Medicaid do not cover residential dementia care costs, also known as custodial care. Most expenses for an RCFE are out-of-pocket, although your long-term care insurance may cover a portion. Make sure you are informed of all incurring costs, assessment costs, additional care fees, and non-returnable deposits. Ask for a written description of what the fees cover.
  • Inquire about staff ratios. Because licensing does not always stipulate a specific staff-to-resident ratio, the number of qualified staff on the premises varies between RCFEs. Understaffed facilities are more likely to expose residents to caregiver fatigue and potential neglect.
  • Inquire about activities. Make sure the activity options provided are appropriate for the personality and cognitive levels of your loved one.
  • If possible, arrange to visit during activities or meal times. Some facilities may invite you to eat with the residents to preview the meals.
  • Attend caregiver support group meetings, such as the ones available at Villa Alamar. Support groups sessions provide a venue for family caregivers to candidly share their ongoing experiences in caring for a loved one with dementia with other caregivers. These meetings are a great source of current information about available services and resources.

Residential care facilities often have a considerable waiting list for occupancy. You may want to add your name to the list in anticipation of the need for placement, rather than wait for a crisis to find that you have no options available. If your name moves up to the top of the list before you are ready, it can be moved to a lower position on the entry queue without losing the option altogether. Your place will remain on hold.

Take your time to review admission agreements. Before signing an agreement, read and study it carefully. An admission agreement is a legal contract and may vary widely from one facility to the next. Consider having the document reviewed by an attorney.

RCFEs are often unable to accommodate a new resident on short notice. If a placement suddenly becomes necessary, the unprepared family is forced to make a quick placement and the available options will be restricted to one of a few facilities that have immediate availability. The readily available facility may not fit the individual needs of the patient who, as a result, may become agitated and confused after a few weeks in the new home. A misfit placement will result in the necessity to rethink the selection and relocate your loved one, entailing additional financial losses and emotional distress.

Utilizing RCFEs for Respite Care

Respite care may become a necessity at some point for a variety of reasons: The primary caregiver may need to be absent for travel, personal medical treatment or hospitalization, or for another commitment, resulting in the interruption of caregiving duties. In the absence of an available alternate caregiver or caregiver team to provide 24/7 care, temporarily placing the patient in an RCFE can be the most appropriate and safest alternative for care.

Many RCFEs offer respite care, in which a patient is a guest of the facility for only a short stay, from a few days to a few weeks. The same criteria for selecting a permanent residence for the patient and arranging for the—albeit temporary— move, apply to the selection of respite care. Facility staff should receive complete information about the patient (e.g., likes, dislikes, schedules, medical history, life story, emergency contact information) to ensure a smooth transition and make him feel welcomed and content for the duration of his stay. Caregivers may use fiblets to explain to the patient the need for his stay, but reassure him that it is only for a few days. Most patients enjoy their stay in respite residential care.

The time commitment in respite residential care is restricted to the prearranged dates, therefore this is a great opportunity to test drive the facility without the contractual obligations of a permanent placement. It is also a great way to determine if the patient is amenable to living in an RCFE, and see how he copes in a structured environment.

Regardless of your intended plans for long-term care, there may be a future need for either temporary or permanent placement. And that need may arise without much warning.

The best time to educate yourself about residential care is long before you need it. If you are caring for a loved one with dementia, make sure your long-term care plan includes a contingency plan in the event of the need for placement. If you are well informed about your options, you will be in a position of power.

Excerpt from the book:
Ahead of Dementia, A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers
by Luciana Mitzkun
Available at Amazon

Luciana Mitzkun Weston,
Villa Alamar Community Services Director
Do you need more personalized information?
Luciana is available for in-person care consultations for families caring for a loved one with dementia.
Call 805-682-9345 for an appointment.

Veterans’ Memory Care Needs

By Luciana Mitzkun Weston
Villa Alamar Community Services Director

Dementia takes the patient on an emotional journey that can be compared to time traveling. Memories fade, beginning with the most recent ones and, gradually, older memories are affected as well. As a result, patients travel emotionally back in time, often reliving past events as if they were current. Past accomplishments and sorrows, long-resolved relationships, jobs, responsibilities, traumas, victories, and defeats: all these experiences and the feelings they elicit return with renewed importance when dementia turns back the clock.

Alzheimer’s disease is the most common cause of dementia in the United States, affecting more than five million Americans. Three million additional dementia cases are estimated to be related to other neurologic conditions, such as Lewy body disease, frontotemporal dementia, and vascular dementia.

Although all people, regardless of background, are at risk for developing dementia, the effects of this devastating condition are unique to each individual—unique not only because we all have different medical concerns, but also because each of us has followed a unique path in life. The experiences we have amassed throughout our lives deeply affect how dementia manifests itself.

As the emotional clock ticks backwards to earlier years, veterans living with dementia may find themselves reliving their service years. All the feelings associated with that time of life return in full force.

Many veterans with dementia feel trapped in a state of war from which they cannot emerge. Time has been turned back and they are now stuck in their worst days, reminiscent of the cruel loop we saw in the movie, Groundhog Day. They can relive the traumas and feelings of anxiety, suspicion, fear, loneliness, and the need for the alertness for self protection and the urge to fight back. All those issues that may have resulted in Post-Traumatic Stress Disorder (PTSD) return to stay, and the veteran inhabits that space and is unable to shake off those experiences.

Patients with dementia cannot control these emotions. PTSD-therapy does not work because dementia has robbed them of the very cognitive abilities necessary to process it. Many times, these emotions are manifest in acts of self-isolation, resistance to care, agitation, and suspiciousness. Depending on the severity of the stress experienced during their service, veterans may now suffer from strong Behavioral and Psychological Symptoms of Dementia (BPSD). It is a hard place to be stuck, both for the patient and for his loved one.

Families of veterans with dementia must learn to understand the uniqueness of their experience and work closely with doctors and professional caregivers to alleviate these symptoms.

Medications can take the edge off of the most severe symptoms, but must be administered with extreme caution and under the strict supervision of a qualified medical specialist. Other helpful interventions include social activities in nurturing settings and the adoption of a daily routine, both of which can bring a sense of safety, acceptance, and belonging to the patient. Promoting positive feelings helps to demote the negative ones.

Attending programs that offer structured daily activities can be beneficial to veterans who rely on stable social settings that will provide for their need to feel safe. There are support groups that use acceptance and humor to help veterans counteract possible underlying negative feelings. Making new friends and finding camaraderie while benefiting from reassuring supervision can greatly increase their ability to suppress PTSD-related symptoms.

Support for attendance in day programs and other beneficial interventions is available. The U.S. Department of Veterans Affairs (VA) recognizes the veterans’ special circumstances and provides assistance to qualifying veterans to pay for such programs. To qualify, the veteran must be eligible for receiving VA health care benefits.

Eligibility for VA health benefits has different requirements than those required by the VA for financial assistance. While there are a number of requirements for financial assistance (service during wartime, service-related injury, and income, among others), most veterans are eligible for health care services from the VA.

The few requirements are:

  • Service in the active military, naval, or air force
  • Receiving an honorable discharge
  • Having served a continuous 24 months (only for those enlisted after 1980).

If a veteran is not already enrolled in the VA health system, the veteran or his/her family can use the simple form 10-10EZ to enroll. The form is available to download from the VA website and it must be submitted with a copy of the discharge papers.

Approval is quick (generally within a couple of weeks) and, once approved, the veteran can see a VA doctor at any of the thousands of VA clinics and hospitals in the country.

The VA has many primary care physicians and neurologists specialized in dementia and memory care who can manage PTSD and BPSD symptoms, and may also recommend other beneficial interventions, such as attendance of day-care centers.

A report from a VA doctor with express recommendation for attendance to a day program is required for this kind of assistance. It must be submitted with an Extended Care Services form 10-10EC (also downloadable) and approval can be expected in just a couple of days. Most day centers have staff that can help families through the process.

In addition to providing for attendance to day programs and receiving medical assistance, the VA may also cover residential care in one of its qualified VA care facilities, should a veteran require custodial or memory care. This can be of great value to veteran families who may not have planned in advance for the costs associated with residential memory care, which are mostly out of pocket.

The needs of veterans living with dementia are unique. They should use every resource available to keep reminding them that they are in a safe place, and they are loved and appreciated. Please consider every program available in your community and contact your local VA office for more information.

Santa Barbara VA Office: Santa Barbara Office 315 Camino Del Remedio Building 3, Room 251 805 681-4500


Previously published by the Alzheimer’s Association.