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.