dementia-caregiver-hand

When Professional Help Is Needed

I’ve presented “Understanding & Responding to Dementia-Related Behavior” dozens of times as a Community Educator for the Alzheimer’s Association. During the Q+A after the session there are often questions like…”How do we know when it’s time to bring in outside caregivers?” and…”Can we safely keep mom at home?” There are more things to consider than you might think. Recently, I invited a dementia colleague to do a joint presentation with me, in order to offer session participants a specialist in this area. Allen Jernigan, of Southern Companions, presented this portion of the presentation and he was kind enough to let me share his information with you.

Where should an aging senior live? 

Author: Allen Jernigan

The best answer to that question is it depends.  You must first evaluate the overall situation.  There are many factors that you should look at to make an informed choice. Let’s explore the options for yourself or a loved one.

  • Medication Management

Do they remember to take their medications at prescribed doses and times? Have they had any hospitalizations or health issues due to skipped doses or multiple doses? If you are not sure, look for signs of mismanagement, such as expired medications or pill bottles that are spread out in different rooms with no apparent structure or routine.

  • Meal Preparation

Can they cook for themselves? Are they eating balanced meals? Are they able to safely operate kitchen appliances? Have there been any incidents where they have forgotten a meal in the oven, accidentally left the stove on or started a fire?

  • Safety and Mobility

Do they have difficulty getting around the home or taking stairs? Have they fallen in the home? Do they have a plan in place to summon help in case of an emergency? If mobility is an issue, can the home be equipped with safety devices like grab bars, an emergency response system and other tools to ensure safety? If they do not use a mobility aid for added stability, would they be open to using one?

  • Personal Hygiene

Can they bathe themselves, groom adequately and launder their clothes and linens? Are they bathing frequently enough? A generally unkempt appearance, body odor and soiled clothing are clues that a senior is unable or unwilling to care for themselves properly.

  • Transportation

Are they still driving? Are they safe behind the wheel or have they gotten in car accidents or gotten lost while driving? Do they have alternate means of transportation for doctor’s appointments, grocery shopping and other errands?

  • Socialization

Are they isolated from others most of the time? Do they have friends? How often do they get out of the house? Are they showing signs of depression?

  • Home Management

Is the house clean or in general disarray? When visiting in person, peek in each room (including bathrooms) to get a feel for their level of cleanliness. Keep an eye out for stains on furniture and carpets, unusual odors, and spoiled food in the refrigerator.

  • Financial Management

Are they paying their bills on time? Are there stacks of unopened mail, unpaid bills or late payment notices lying around? Are there signs that they have been spending excessively? Do they get calls from telemarketers or creditors?

  • Emotions

Are they attached to their home?  Do you as the current caregiver feel guilt from moving them to an assisted living or nursing home? 

  • Aggression

Physical, sexual or violent aggression frequently happen in people with dementia, and caregivers or other family members may begin to feel resentful or stressed.

  • Caregiver stress

Caregiver symptoms like increased stress can be just as telling a sign as the dementia behaviors described above.

  • Escalating care needs

Ask yourself: “Are the person’s care needs beyond my physical abilities?” or “Is the health of the person with dementia or my health as a caregiver at risk?” If you are answering yes to those questions, it might be time to have that tough family conversation.

  • Home safety

Consider your senior loved one’s health and your own abilities to care for them. Is the person with dementia unsafe in their current home?

  • Sundowning

“Sundowners syndrome” — very agitated behavior that becomes more pronounced later in the day — is a common characteristic of those with dementia.

  • Wandering

In later stages of dementia, the risk posed by wandering becomes much greater. They can wander even if you just take the time to go to the bathroom, and the probability of falls and injuries increases as well.

Once you have gone through this list you can begin to get an idea of where the most appropriate place is for your senior.  Seniors have many options when it comes to the best place for them to live.  Obviously, the first is to age in place which means staying home.  This can be a very safe option by utilizing private duty care companies which provide personal care and companion/sitter services.  Other providers such as home health, hospice, meal delivery, adult day health, and senior centers to name a few also assist seniors in aging in place. Personal care aides with private duty care companies help with all activities of daily living such as bathing, dressing, toileting, medication reminders, assistance with transfers, and other personal needs.  Companions/sitter services which is often the same aide provides light housekeeping, meal preparation, transportation, companionship, and other things a family member might normally do. 

According to the Genworth Financial Cost of Care Survey, home care costs an average of $4,290 a month. This average is based on a client receiving care 44 hours a week, which comes out to roughly $24 an hour.  Note that this is the national average, and costs can vary widely between different states and even different areas within the same state. Even different providers in the same city may charge different prices. So, if keeping costs low is your top priority, be sure to compare the costs of several different providers to find the best value. 24-hour care can also be provided with a live-in caregiver which is often cheaper if around the clock care is needed. In this situation the caregiver lives with the client often for weeks at a time.

Private in-home care is not cheap.  Medicare and health insurance do not provide coverage for personal care.  Medicaid does provide some coverage, but I find that few companies accept Medicaid due to the complexities of working with the government.  If a client has a long-term care insurance policy this will provide coverage based on the limits of the policy.  The Veterans Association has a benefit called Aide and Attendance that provides a monthly benefit up to $2,266 for the veteran, their surviving spouse or both the veteran and spouse. Veterans who served on active duty for at least 90 consecutive days, including at least one full day during a time of war, may be eligible for Aid and Attendance if they also qualify for the basic Veterans Pension and meet the clinical and financial requirements.

Seniors sometimes try to hire a private individual to provide these services.  While that is a cheaper alternative, they put themselves at risk.  Licensed companies are regulated by state agencies and ensure that the caregiver has proper training, background checks, drug testing and is tested for diseases such as tuberculosis.  If a private individual is unable to come to work these is no backup either.  A privately employed individual is generally not covered by homeowner’s insurance either so a fall or back strain that would be covered by a company’s workers comp insurance is left to the senior to cover.  Sadly, there are also many cases of crimes being committed by individuals against elderly clients such as physical and financial abuse. 

Private duty (or home care) is not the same as home health.  Home health employees’ nurses, physical and occupational therapists, and other skilled providers to provide care often prescribed by a doctor.  While home health has care aides that may come in to provide baths and other activities of daily living, they generally do not stay with the client and leave after they have completed the assigned tasks. 

Home health is generally covered by insurance, Medicare and Medicaid.  Private duty care companies often work in conjunction with home health. 

Hospice companies provide valuable end of life care.  Often people have the myth in mind that hospice is only to be called in for the last few days or weeks of a person’s life. While there are certain Medicare guidelines surrounding qualifications for hospice the goal of hospice is to have a holistic relationship with a patient and family for a longer amount of time rather than shorter.

Hospice is:

  • Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life.
  • An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family.
  • Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life.

Palliative care aims to control pain and manage symptoms. In the context of hospice, palliative care focuses on quality of life rather than curing disease. All hospice care is palliative, but not all palliative care includes hospice.

Palliative care outside of hospice may be used during any point in the illness. Patients may receive palliative care while they receive treatment aimed at curing or slowing the progression of their disease. Sometimes such treatments (e.g., chemotherapy, radiation, etc.) can be better tolerated with the help of palliative care, making it a good option for people who are not in the final stages of illness but who desire expert pain management.

Hospice companies are like home health companies in that they do not provide 24/7 caregivers.  They generally only provide around the clock care in the last few days of a patient’s life.  Private duty companies also work in conjunction with hospice companies. 

Hospice care is generally covered by Medicare/Medicaid.  Most hospice patients are eligible for Medicare, which covers all aspects of hospice care and services. In most states, Medicaid offers similar coverage. It is important to note that Original Medicare covers hospice even if you’re in a Medicare Advantage Plan. Many private health insurance plans offer a hospice benefit but the extent to which they cover hospice care and services may differ from Medicare as well as from one another. Military families have hospice coverage through Tricare. And hospices will accept private payment, referred to as “self-pay.”

As mentioned earlier, other services assist seniors to age in place such as home delivered meals, senior centers, adult day health.  Senior centers serve as a gateway to the nation’s aging network—connecting older adults to vital community services that can help them stay healthy and independent. More than 60% of senior centers are designated focal points for delivery of OAA (Older American Act) services—allowing older adults to access multiple services in one place.

All the services mentioned can be provided in someone’s private home, residence in a senior

facility such as a 55 and above community or independent living unit in a facility.  Private duty care companies are available to provide companion services in a hospital or nursing home but cannot provide personal care in those facilities. 

If a senior’s home is not the most appropriate place, then there are many options outside of the home.  There are many options in our area for independent living for seniors such as 55 and above neighborhoods.  Many communities provide independent living in the same community as assisted living and memory care units. 

Independent senior living communities commonly provide apartments, but some also offer cottages, condominiums, and single-family homes. Residents include seniors who do not require assistance with daily activities or 24/7 skilled nursing, but may benefit from convenient services, senior-friendly surroundings, and increased social opportunities that independent senior living communities offer.

Independent senior living communities are also popular among snowbird seniors who wish to downsize or travel freely without the burden of managing a home.

Many retirement communities offer dining services, basic housekeeping and laundry services, transportation to appointments and errands, activities, social programs, and access to exercise equipment. Some also offer emergency alert services, live-in managers, and amenities like pools, spas, clubhouses, and on-site beauty and barber salons.

Independent senior living properties do not provide health care or assistance with activities of daily living (ADLs) such as medication, bathing, eating, dressing, toileting and more. Independent senior living differs from continuing care communities, which offer independent living along with multiple other levels of care, such as assisted living and skilled nursing, in one single residence.

Independent senior living residents are permitted to use third-party home health care services to meet additional needs.

If a senior cannot safely maintain independent living they can look towards many other options.  The next logical step is either an assisted living community or a personal care home which provide similar services and generally differ solely based on size.  A personal care home is generally a smaller facility often located in someone’s home. Assisted living communities are generally larger facilities that may also house memory care units and other facilities. These licensed facilities provide the basics of all meals, housekeeping, laundry, transportation to errands and appointments, recreational activities, and exercise and wellness programs. Assisted living facilities provide sufficient care for individuals in the earlier stages of Alzheimer’s disease and dementia. In Georgia, the law states that residents in these facilities need to be able to get out of the facility on their own in an emergency.  They also provide help when needed for activities of daily living, and some medical assistance.  One of the most valuable things that assisted living facilities can offer to senior residents is the safety and security of 24-hour support and access to care if needed. These facilities have nursing assistants that aid with activities of daily living but are also providing care for other residents so one on one care is not an option.  I feel one of the most important things these facilities provide is socialization with other residents.  Many seniors suffer from loneliness due to the loss of a spouse and family members who may be busy with their own families and unable to visit as often as they want.  These communities often provide dining rooms and other general areas where the residents can visit and socialize. 

For individuals with dementia who require a higher level of skilled care and supervision that is provided in assisted living, memory care units are an ideal option. Also referred to as Special Care Units [SCUs] or Alzheimer’s Care Units, these units offer both private and shared living spaces. Sometimes they exist as a wing within an assisted living facility or nursing home, or they operate as stand-alone residences. Supervision is provided 24 hours per day by staff trained to care for specific needs and demands of dementia patients. Memory care units offer the same services as assisted living facilities with increased supervision, plus activities intended to stimulate memory, and possibly slow the disease’s progression. Activities may involve music, arts and crafts, games, etc.

Staff, in most states, are required to undergo special dementia training and staff-to-patient ratios are typically lower.

Memory care units are architecturally designed for the specific needs of persons with dementia. An example is designing the residence in a circular layout because those with moderate dementia often feel increased stress when approaching a barrier like a hallway that comes to an end. This also allows residents to safely wander. And unlike some assisted living communities, memory care units do not have individual kitchens. This helps keep the stress of those with dementia at a minimum.

While some assisted living residences do have secure areas to accommodate those with mild dementia, memory care units put extra emphasis on security to prevent patients from wandering, a common habit for those with more advanced dementia. Many locations offer a secure outside area where patients can enjoy the outdoors but cannot leave the property.

In 2019, the projected, average monthly cost of assisted living nationwide is $4,000. Alzheimer’s and dementia care in assisted living costs, on average, an additional $800 – 1,200 per month, for a monthly total of $4,800 – $5,200. I personally know of facilities that exceed $10,000 a month for care with amenities and locations like a fine resort. 

Payment for assisted living and personal care homes is similar to in home care in that it is either covered by the individual, Medicaid, long term care insurance or the Aide and Attendance benefit through the Veterans Association. 

One of the final options is a skilled nursing facility commonly called a nursing home, which provide more extensive medical care. Nursing homes are better for individuals with Alzheimer’s or dementia who are in the end stages of the disease and have serious problems with their health or daily living. Despite your best efforts to support and care for a loved one, consider long-term care in a skilled nursing facility in the following circumstances:

  • Your loved one needs more constant supervision than you can provide, whether for wandering other behaviors.
  • Your loved one poses a danger to himself/herself or others.
  • Your loved one is becoming more difficult to keep adequately nourished, hydrated, and/or healthy.
  • Your loved one can no longer carry out activities of daily living, such as bathing, dressing, personal hygiene, and mobility.

Nursing homes provide 24/7 medical and personal care to individuals who have chronic medical conditions that do not require hospitalization but do require constant, supervised care.

In 2019, the national, daily average cost for nursing home care for a shared room is $245. The benefits that Medicare, also known as Original Medicare, offers toward the cost of nursing home care are limited. Medicare is not intended to provide a long-term care solution. Rather, it is designed for those who need skilled nursing care for a limited time. Some people refer to short-term nursing home care as convalescent care. Medicare will pay for twenty days of care at 100% of the cost. For the eighty days following, Medicare requires care recipients to pay a portion of the daily cost. As of this year, the daily co-payment was $176. 

Medicaid, through its state affiliates, is the largest single payer for nursing home care. While estimates vary, it is safe to say that Medicaid pays between 45% and 65% of the total nursing home costs in the United States. While on the surface, this may sound encouraging for families whose loved ones require nursing home care, it is important to be aware that Medicaid is a means-tested program, meaning that the applicant’s income and financial assets are closely analyzed prior to acceptance into the program. Persons must meet strict financial guidelines in order to qualify. However, should an individual qualify, Medicaid will pay for 100% of their nursing home costs at a Medicaid approved skilled nursing facility. As with most facilities, the range of how nice the facilities are varies widely. 

Like the other options, private pay and the Aide and Attendance benefit are also payment options for nursing home care. 

Finally, there are other options out there such as group homes, people who will “adopt” a veteran and provide a place for them to live, continuing care communities, co-op housing, respite care for short term care, adult foster care and other options. 

There are people that will talk to you and help you make the right choice for yourself or your loved one and then make recommendations on facilities that best match your needs.  You are not alone in this journey so reach out and ask for help.