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
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 805-708-6132 for an appointment.

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.

If You (or your loved one) Have Been Diagnosed With Memory Loss, You Need to Know This!
By Luciana Mitzkun

Most people diagnosed with memory loss complain about short-term memory loss, but not long-term memory loss. In fact, most people notice that their long-term memory is excellent! Long-term memories are fragmented and stored in the outer layers of the brain, where they are best protected from the brain’s natural aging process. These memories are solidified and supported by strong synapses, the connections between brain cells.

Long-term memories may have been accessed many times over the course of a lifetime, and with every time that information is accessed its memory becomes sturdier. The more often a memory is recalled, the stronger it is retained. Therefore it is relatively difficult to forget a long-term memory; it may take a catastrophic brain event for that to happen.

Difficulties in retaining short-term memories, however, are common, and a majority of people with memory loss have this problem. Although these memories are by definition tagged to be discarded soon—sometimes in mere hours or days—the brain may experience problems in retaining the information for its entire intended duration.

Short-term memory loss can be extremely frustrating. We use short-term memory for almost everything we do and we depend on it to do even the most mundane of tasks. We need this kind of memory to:

• Keep track of common objects
• Use the name of a person we just met
• Remember something we just read or heard
• Know why we walked into a room
• Follow instructions and directions
• Schedule and show up on time for appointments
• Follow current events.

Short-term memory loss may not impede the completion of some of our larger projects, but it does hinder our ability to complete some of the necessary small steps involved in the task. It forces us to utilize more time and organization to do things that may have been done quickly and effortlessly in the past. It increases our margins of errors. It is annoying to us.

Thus, it is not uncommon for those affected with memory loss to experience high levels of irritation, anger, and even anxiety. If you have short-term memory loss and have experienced some of those feelings, you are having a very human reaction to a very frustrating situation. Understanding the nature of your memory loss and learning strategies to minimize its effects may help mitigate these feelings.

Is it dementia?

One of the main concerns of those living with memory loss is distinguishing it from dementia. Memory loss is a condition that most people will experience at some point in their lives and with which we all must learn how to live. Dementia is a more pervasive condition; it implies an interference in the ability to conduct our activities as usual.

People affected with memory loss may be diagnosed with Mild Cognitive Impairment (MCI). Although memory loss can increase with time, not everyone with MCI will experience a worsening of the symptoms. Many learn how to manage symptoms and adopt strategies to minimize the risk of progression. Life goes on as planned.

In some cases, however, memory loss does become more severe. This progression is generally a slow process that may take many years, and can be mitigated by the adoption of memory-supportive strategies. The more effective and disciplined MCI patients are in adopting such strategies, the longer they may be able to avoid a progression to dementia.

To be considered dementia, memory loss must be accompanied by other cognitive deficits, and the symptoms must be severe enough to interfere with the ability to conduct daily activities of life.

Dementia is a very relative diagnosis. Basically, if you are able to continue your lifestyle despite memory loss, you don’t have dementia. You may use calendars, reminders, post-it notes, labels, calls from friends, strings on fingers—regardless of the memory aids you may use—if you are able to accomplish your tasks and goals (even if it takes a little longer and you have a few trials and errors), you do not have dementia, you have MCI.

The fundamental difference between MCI and dementia, is that those with dementia are unable to successfully accomplish their goals without outside assistance. If your symptoms require reliance on a loved one or a friend to keep you safe and on track, and you need help accomplishing mundane tasks, you do have dementia.

In practical terms, however, regardless of the diagnosis you receive—memory loss, MCI, or dementia—they all require adoption of the same strategies for retaining and retrieving memory and for stimulating brain functioning. It will be equally important for you to care for your brain health, strengthen your synapses, learn cognitive enhancing strategies, and practice appropriate memory exercises.

These are your best weapons against the worsening of memory loss, MCI, and dementia. The name attributed to your condition is not nearly as important as adapting your lifestyle to keep it from progressing. Medication can help you only so far. Your determination in keeping your brain healthy is what will carry you through and be your greatest ally in the fight against dementia.

Do not let the frustration that comes with memory loss discourage you. There is much you can do to live well with memory loss, delay the onset of dementia, and establish a safer future for you and the ones you love. You can live a fulfilling life with memory loss and you can live a fulfilling life with dementia. It starts with you, your self-awareness, your self-discipline, your courage to do what it takes to care for yourself and fight cognitive impairment head on.

You will also find that most of your friends and loved ones are rooting for you and will be by your side throughout this journey. Let them be with you and for you, and accept help from those who can assist you. You don’t have to travel this road alone.

Excerpt from the book Ahead of Memory Loss, by Luciana Mitzkun, which further explores strategies and tools for better living with memory loss.
Available at Amazon, and also at Villa Alamar.

Older Adults and Resilience: When Major Life Events Strike

By Luciana Mitzkun

Throughout our lives we all experience events that change the way we live and the way we think. Such events may be welcome occasions: completing college, getting married, the birth of a child, a job promotion, or receiving an award. Other life-changing events may not be so fortunate: the onset of an illness, an injury caused by an  accident, losing a job, the loss of a loved one. Fortunate or not, these events have a profound effect on our lives, and we all must adapt to the changes they bring.

Resilience is an important factor in our ability to overcome misfortune and make the best of a  situation. According to the American Psychological Association, resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress (such as family and relationship problems, serious health problems, or workplace and financial stressors). Resilience  means “bouncing back” from a difficult experience.

Although levels of resilience vary from person to person, studies show that having caring relationships that offer encouragement and reassurance is a major contributor to building resilience. Other factors associated with resilience include:

• Being able to make realistic plans and take steps to carry them out.
• Having a positive view of oneself  and confidence in one’s strengths and abilities.
• Having good communication and problem solving skills.
• Being able to manage strong feelings and impulses.

Studies have also shown that resilience is more a process than a personality trait: We are all capable of improving our resilience as we age. Not surprisingly, older adults are the most resilient people, capable of overcoming a great number of adversities and living enriched  and active lives, being with family and friends, and participating in a number of activities.

However, changes in cognition may affect resilience levels.

Cognitive impairment has a direct effect on a person’s relationships, ability to make plans, self-confidence, problem solving and communication skills, and impulse control, which are precisely the core building blocks of resilience! Cognitive decline in itself affects the ability to cope with stress and compromises one’s resilience.

Resilience being lower, you may see your loved one acting withdrawn, less sociable, perhaps even depressed. As a matter of fact, a person living with memory loss yet  still able to conduct her daily activities may be derailed by a stressful event and begin showing signs of full dementia. Under stress, the lower resilience will cause cognitive symptoms to worsen and, in many cases, symptoms can worsen to dangerous levels very rapidly—in weeks, sometimes days!

This can explain  why we frequently encounter families in shock as they face the emerging need for 24/7 care after a major life event, such as a hospitalization, the loss of a spouse, or a move to a new home. The inability to cope with a  life-changing event can be a direct consequence of the cognitive impairment that may have already been progressing unnoticed for years prior to the event.

If you notice your loved one having difficulties rebounding from a misfortunate event, do not assume that this is a natural reaction to the severity of the disappointment: Have your loved one checked for cognitive functioning. A good neurologist should be fully able to differentiate between grief-related disappointment and dementia.

And keep in mind that a person with cognitive impairment may also be adversely affected by life’s happy events,  such as the birth of a grandchild or a long-awaited trip overseas. The lack of ability to adapt to changes can also extend to welcomed events, inasmuch as these may disrupt or alter one’s  regular routine and schedule.

Stay close to your loved one in times of changes. He will benefit from your loving presence, encouragement, and reassurance. Watch for unusual or prolonged signs of lower resilience such as insomnia, agitation, irritability, moodiness, depression, poor memory, and risky behaviors. Those may be signs indicating the worsening of cognitive impairment and a higher risk for dementia, so make sure he receives a medical evaluation. Finding appropriate medical care in a timely manner may be the best way to avoid a dementia-related emergency.

Luciana Mitzkun is a Memory Care specialist and the Director of Community Services at Villa Alamar. She is the author of Ahead of Dementia (a book for family caregivers) and Ahead of Memory Loss (a book for people affected with memory loss), which are available for purchase at amazon.com and at Villa Alamar. Luciana facilitates monthly workshops and support groups for family caregivers.  Contact Luciana at 805 682-9345 for information about Villa Alamar services and other community resources for seniors and families affected with dementia related conditions, such as Alzheimer’s disease.