As the older population explodes, Alzheimer’s disease and other forms of dementia are also on the rise. The Alzheimer’s Association reports that in 2019 more than 5.8 million people in the US were living with Alzheimer’s — and this number could more than triple by 2040. Someone in the United States develops the disease every 66 seconds. One in ten people suffers from the disease, which is the sixth leading cause of death in the U.S. overall, killing more people than breast cancer and prostate cancer combined.
Dementia is a multifaceted disease with no real cause, and unfortunately, in most cases, no cure, either. The burden of caring for a loved one with dementia often falls on the shoulders of an unpaid, untrained caregiver who is trying their best. More than 16.3 million Americans currently provide unpaid dementia care. In 2019, these caregivers provided an estimated 18.5 billion hours of care, valued at over $234 billion. By 2050, these costs could rise as high as $1.1 trillion.
Is it Dementia?
Forgetfulness can be a normal part of aging. Misplacing reading glasses, struggling to recall names, or having other “senior moments” is little more than an annoyance for many older adults. However, if your loved one’s forgetfulness is compounded by complications completing mundane tasks, problem-solving, understanding spatial relationships, or changes in mood and behavior, it may be a more serious form of memory impairment. If you suspect someone you love is experiencing dementia, contact your primary care physician for a screening. Medication is available to help ease symptoms and may slow the progression of the disease.
Now that dementia is becoming more prevalent, due to the rapid rise in longevity, many senior living communities are dedicating resources to caring for individuals with decreased cognition. From assisted living facilities to adult day programs, there are several options to provide safe, secure and nurturing environments for adults with memory impairment.
Choosing a long-term care setting for a loved one may be one of the most difficult decisions you will ever have to make. This guide will help you find the best possible care for someone with memory deficits, so you can make an informed choice.
When Is It Time for Long-Term Care?
Although many families are able to care for someone with Alzheimer’s or other forms of dementia at home, as the disease progresses it may reach a point that makes home care unmanageable, even with trained caregivers. When caring for someone with dementia becomes a health and even a safety issue, placement in a residential care facility may be the best option.
Here are 9 vital questions to consider when deciding whether long-term placement is right for your loved one:
- Have any accidents occurred recently with appliances in the home, such as forgetting to turn off the stove?
- In the event of a fire, do you feel your loved one is capable of following appropriate emergency measures, including calling 911 and leaving the premises?
- Has your loved one become progressively more dependent with their Activities of Daily Living (eating, dressing, bathing)?
- Has he or she or become easily threatened or suspicious of others, fearful of taking medications, or of eating certain foods?
- Is your loved one taking medications on schedule, following correct dosages, and willing to use an organizer/reminder device if necessary?
- Has your loved one gotten lost while on a walk, or running errands? Is he or she unable to remember personal information such as address, phone number, contacts, that enable them to return home?
- As the caregiver, is your own health at risk? Are you missing a lot of work, or unable to manage your other responsibilities?
- Do you have additional support to care for your loved one?
- Is the amount of home care assistance needed likely to become so great that it is not an affordable option for your family?
Memory Care Settings
Independent Living Communities
For seniors that want to retire in a nice neighborhood with like-minded retirees, there are independent living communities available that provide access to medical services if needed, as well as memory care. These apartments are commonly furnished, and the facilities provide meals as well as housekeeping in addition to access to a wide range of fun activities and social events designed to improve cognition, or at least slow the onset of dementia symptoms.
This type of facility is not covered under any medical insurance program, because it is not technically assisted living, though any needed services provided by medical staff in these homes may be covered under insurance. The typical cost of monthly rent in places like these vary across the states, ranging from $2,000 to $3,000 depending on the area. These communities typically come with a community fee of $1,000 to $3,000, and sometimes a buy-in is required to enter the community of up to $500,000, as a guarantee of lifetime community access, and this money goes towards your monthly bill.
The main benefit of this type of senior care is the guarantee of having a place to be comfortable in the event that your health worsens, and you need memory care or hospice. Memory care in many areas has long waiting lists, but gives priority access to high-quality memory care apartments in secured units for those that are already residents of their communities.
Assisted Living Facilities
As the name implies, assisted living facilities (ALFs) are designed to assist individuals who may need help with their day-to-day tasks but do not need the extensive nursing care provided by skilled nursing facilities or nursing homes. Most ALFs are set up as efficiency apartments, and are staffed with nursing assistants and health aides who are able to help with bathing, dressing and grooming. In some states, ALF staff can also administer medication. Most facilities offer dining programs and structured socialization opportunities. Assisted living may also be a good choice for couples who want to remain together but cannot care for each other due to health limitations.
For those with mild to moderate memory impairment, assisted living facilities can be a good choice because they allow the senior to retain a degree of independence. When choosing an assisted living facility for someone with dementia, be sure to verify these important factors, and ask if they come at an additional charge:
Secure Areas: Some assisted living facilities are designed with the mild dementia patient in mind. Entire wings or even buildings may be designated for individuals with memory impairment; these are often referred to as “Memory Care” units. They generally provide greater supervision and security than the rest of the facility. Memory Care facilities are staffed with caregivers accustomed to the impulsivity and reduced safety awareness that people with dementia may exhibit. The staff is trained to respectfully and humanely redirect the resident to the appropriate activity or location.
Medication Assistance: Most assisted living facilities can help administer medication. This may be essential for a resident with memory impairment. Knowing when to take which pill can be difficult enough for those elders without cognitive decline; it might be impossible for those who are impaired to manage correctly. Licensed nurses are qualified to distribute doctor-prescribed medications and can ensure compliance. This is also helpful when communicating with primary care physicians, since staff can alert physicians to an increase in unusual behaviors or decrease in functional abilities that is not a result of missed medications.
Rehabilitation Programs: Many Memory Care centers will also offer programs designed to slow the progression of this degenerative disease, or alleviate symptoms associated with dementia, such as agitation and aggression. Sensory stimulation, cognitive therapies, physical and occupational therapies are all included in these types of programs. There has been much positive research regarding alternative therapies such as music and art therapy, which help reduce agitation, although no long-term benefits have been identified. Most therapies and programs are performed in group settings, which allows for greater supervision as well as necessary socialization.
For example, a typical day at a memory care assisted living facility may look something like this:
|7:00-9:00am||Morning routines (dressing, housekeeping, etc.), breakfast. As residents enjoy breakfast, soft music plays in the background.|
|9am-11am||Group ActivitiesWalking ClubDiscussion groupArt and Music|
|11am-1pm||Lunch (again with soft music playing)|
|1pm-4pm||Group ActivitiesGardening, woodcrafts, pet careMusicCooking/Poetry/CraftsMental stimulation gamesAfternoon Social|
|6pm-8pm||Evening ActivitiesCard games, drawing, writingMeditationWarm hand massage|
|8pm-9pm||Personal time, preparation for bed|
Cost: Most assisted living facilities are paid for with private funds. The average cost of assisted living varies from state to state and depends upon the service selected by the resident. Medicare does not cover the cost of assisted living facilities, and Medicaid coverage is limited. There may be some state programs or even federal programs, such as the Veteran’s Aid and Attendance benefits that can help cover the cost.
Pros and Cons of Assisted Living Facilities
|Assistance with basic health care needs and medication administration||May not have licensed nurses available 24/7|
|Greater sense of independence and privacy than nursing facilities||May be a long waiting list for a room or apartment|
|Assistance with activities of daily living (ADL)||Cost: Most ALs require private funds to pay for room and board.|
Skilled Nursing Facilities
Skilled Nursing Facilities, also known as nursing homes, are often the option of last resort. Usually, if a person needs permanent placement in a nursing home, the supervisory care required exceeds that which can be provided at home or in an assisted living facility. Many of these patients are exit-seeking, or more difficult to redirect. Some people with dementia may also develop aggressive behaviors that can pose a threat to themselves or those around them. Others simply are no longer able to perform most or all of their activities of daily living, and need a higher level of care.
If you are considering placing a loved one with dementia into a skilled nursing facility, there are several factors to consider, including:
Secured Unit: With exit-seeking behaviors one of the biggest threats to a patient with dementia, many facilities offer secure units that are kept locked 24/7. These units are generally smaller in nature and can only be accessed by staff, and visitors with authorization. They should be inclusive, with living areas, activities, and dining all within the secure location. Some facilities also offer secure courtyards or outside areas in order to give residents the opportunity to spend time in the fresh air, while maintaining their safety. Many facilities utilize exit-disguising strategies, such as painting murals that are reminiscent of their neighborhoods, or local attractions, or simply furniture like fireplaces and bookcases. This way, confused elders don’t see the door and try to leave, but rather ignore the exit altogether.
Security Systems: For dementia residents residing on the secure unit, and for those on the mainstream floors, additional security measures may be needed to ensure the residents’ safety. There are several types of security devices that may be used, including:
- Personal Security Alarms: These are devices often placed on wheelchairs and beds of patients whose cognition no longer allows them to understand their safety deficits. For example, if a patient is a fall risk because of poor balance, a seat alarm may be placed on their wheelchair to help deter the patient from standing. The sounding alarm will hopefully redirect the patient back into their seat, while alerting staff for assistance. These types of alarms are also vital for patients who are sundowning (becoming increasingly confused and restless late in the day, as the sun sets). The bed alarms alert staff to an out-of-bed patient so they can provide assistance and maintain safety.
- Door/Elevator Alarms: For patients whose needs do not warrant a secure unit, alternate security measures may be needed. Some facilities are equipped with systems designed to alert staff members if a dementia patient is close to an exit or elevator. Patients are often outfitted with a bracelet or anklet that is used as a sensor for such alarms. Some facilities will place the bracelet on the patient’s wheelchair so it remains hidden from the residents, to prevent tampering. This is less restrictive than the secured unit but provides the necessary security.
Day Programing: Many skilled nursing facilities will provide patients with dementia programming throughout the day, designed to help keep their minds active, lessen symptoms of sundowning, and hopefully slow the progression of the disease. If you are considering placement in a skilled nursing facility, be sure to ask whether they have structured daily activities for their patients with dementia.
Psychiatry/Psychology Services: Many facilities will have visiting specialists who are trained in caring for the psychological needs of those with dementia. Because dementia is such an individualized disease, it may take several attempts to establish the right medication regimen. Specialized caregivers trained in working with those who have Alzheimer’s and other forms of dementia are key in helping to develop and maintain such programs.
Pros and Cons of Skilled Nursing Facilities
|24/7 supervision by licensed nurses and clinical staff||Cost: The most expensive of the senior housing communities; however has the most options for subsidized funding|
|Intensive medical services available if needed||Perceived Loss of independence|
|Most regulated of the senior living settings, which creates a more consistent level of care||Stigma associated with nursing homes is still alive and well|
|Certified and trained clinical staff||Bed availability in secure units may be hard to find|
Is It Time to Move Into Memory Care?
The question now becomes, does my loved one require skilled nursing care in a memory care unit, or will assisted living suffice? There is sometimes a fine line separating an appropriate assisted living resident from one who would be better served by a skilled nursing facility.
Here are some questions to consider when deciding what level of care your loved one needs:
- Is full-time supervision necessary? Since nursing homes offer 24/7 nursing staff, a resident who requires more supervision may fare better in a nursing home than an assisted living. Remember that residents in assisted living usually live in private rooms or apartments where it is more difficult to provide 24-hour supervision.
- Is the senior easily redirected? If your loved one can be redirected to an appropriate behavior with minimal effort, an assisted living facility may be a good choice.
- Is the resident able to perform most or all of his/her activities of daily living? If yes, assisted living may be an ideal setting for someone with mild memory impairment — but bear in mind that most dementias tend to worsen over time.
- Is the resident able to communicate his/her wants and needs? If the answer is no, a skilled nursing facility may be the best option. The inability to communicate can threaten the safety of someone living in a private apartment or suite.
Will Medicare Pay for Memory Care?
Skilled nursing care is expensive. Most residents with dementia do not qualify for Medicare or insurance benefits (long-term care insurance will pay for residential care, but must be purchased well in advance of need). Some veterans may qualify under the Community Residential Care program.
Medicare guidelines require a 3-night minimum hospital stay in order for a benefit period to begin, after which patients must meet certain criteria, such as a need for intensive nursing care or rehabilitation, in order for Medicare coverage to continue. Some dementia patients may qualify upon admission, but quickly fall into the “custodial care” category, which means long-term, non-medical care. If a resident in a skilled nursing facility needs custodial care, private funds will most likely be required to pay for outstanding balances. However, there are some exceptions. (See Adult Day Programs, below.)
Average Length of Stay in Memory Care
Because dementia is a progressive illness, once someone enters a memory care facility, they are highly unlikely to leave it for a less restricted setting. The larger question is, given the high cost, how long will your relative live — and will their funds last as long as they do?
While life expectancy overall is on the rise, and increases the longer someone remains healthy, physical trauma or a disorder such as dementia sharply reduces this upward trajectory by as much as 50-75 percent. This “life expectancy compression” means that of the approximately two million people currently residing in 60,000 assisted living and skilled nursing facilities nationwide, those receiving Alzheimer’s care lived on average just 17 months in a Memory Care residence. According to the National Center for Assisted Living, the mortality rate for an individual moving into an Alzheimer’s care unit exceeds 50 percent within the first year.
Alternative Care Options for People with Dementia
While residential care may be needed for those with advanced symptoms of dementia, many times elders are able to age in the comfort of their own homes for quite a while, especially those in the early stages of the disease. For those with mild to moderate dementia symptoms, in-home care and adult day care programs may be a better fit than moving into memory care.
In-home care can be easily found through a home care agency, independent providers, or you can use a family caregiver to help out as needed. Respite services are available for those that only need occasional help and are often offered by home health agencies, as well as out of the home in adult day care centers in the community. There are also more specialized nurses available if your loved one is in need of advanced medical care.
In-home care is perfect for those who wish to age in place. According to Genworth’s 2018 Cost of Care study, in-home health aides cost an average of $22 an hour, and there may be agency fees on top of the caregiver’s salary. These professionals often hold many certifications in various aging fields, as well as degrees in nursing, and are able to transfer immobile clients as well as manage medications.
When you aren’t in need of medical assistance but do want some supervision and companionship to help a senior at risk for isolation, you might want to consider a homemaker. This type of aging assistant costs an average of $21 an hour, according to Genworth, and is responsible for maintaining the comfort of their clients in physical as well as social wellness, taking care of household chores, and spending time with their client. Studies show that social isolation increases dementia risk by 40%, as well as makes vulnerable elders decline faster, so it is very important to ensure that your aging loved ones have a strong social network.
Adult Day Care
As more Americans choose to age in place, adult day programs are increasing in popularity. These programs provide day-care like settings for adults with various conditions, including Alzheimer’s disease and other forms of dementia. Adult day care programs are geared to participants who need supervision or socialization while their primary caregiver works, runs errands or just takes a break from their duties. An adult day care program may be a useful step in enabling your loved one to remain at home awhile longer by keeping caregiver stress low as well as providing a valuable social atmosphere to aging adults.
Adult day care programs come in a variety of settings, each with their own strengths and weaknesses. For more dedicated cognitive-enrichment programming, you might want to start with a nursing home that employs trained professionals in the field of dementia care. If you simply need a break from your caregiving duties, perhaps a community-based adult day program would be a better option for your family.
Community settings include senior centers, nursing facilities, places of faith, hospitals, or schools. These programs are often sponsored by the local government and non-profit agencies dedicated to improving the quality of life for local seniors and their families. As a result, these programs are often offered for a slightly lower cost than programs offered in residential care facilities like nursing homes, and sometimes are offered on a sliding-fee scale, or with scholarships for those in need. This type of financial assistance is often dependant on grants and donations, so access is limited in many areas. These programs will often have a dedicated activity director as well as a social worker, who will work with families dealing with dementia and try to help them solve barriers they are facing regarding aging in place, as well as work with the participants to determine the best ways they can utilize their day program to help improve their lives.
Many independent living, assisted living, and some skilled nursing facilities offer dementia programs as well as day program opportunities. Usually, the program is held within the dedicated dementia unit and participants interact with the facility’s permanent residents, as well as dine in the facility dining area. These programs are often offered at a higher cost, due to the overhead costs of their gorgeous facilities, and the higher-skilled care providers.
While Medicare does not pay for non-medical custodial care, Medicare partners with Medicaid to sponsor the Program of All-Inclusive Care for the Elderly (PACE), which provides comprehensive home and community care, including adult day care. Primarily for low-income seniors who would otherwise need nursing home care, PACE is only available in certain states, with eligibility restrictions.
Traumatic Brain Injury Programs
Traumatic Brain Injury centers specialize in the care of patients who have memory deficits as a result of a traumatic brain injury (TBI) or stroke. Most of the patients are younger, and the onset of injury is sudden. Such facilities are few in number compared with skilled nursing facilities or assisted living, and a potential patient must meet stringent admission criteria.
Most of the patients involved in TBI programs are in need of increased safety awareness and help with short-term memory loss. Some of their symptoms, such as poor memory, poor decision-making, impulsivity, and disorientation, mimic those of dementia. The hope is to regain full cognition, but outcomes are individualized, and full or even partial recovery may not be possible. The main benefit of adult day programs for this type of memory care is to provide in-home caregivers with much-needed respite from the stress of caring for someone with a TBI.
For all of the memory care options described above, entering the setting equipped with as much information as possible is the best first step. This is a challenging decision to make concerning a loved one, and touring the facilities will help you make a more informed choice.
The Decision-Making Process
When touring any facility or program, be sure to ask:
- What security measures are in place to ensure safety?
- What happens if my loved one’s health declines, either physically or cognitively?
- What happens when his or her private funds are depleted? Are there alternative programs to help pay for room and board?
- What types of activities will my loved one be able to participate in?
- What rehabilitation program(s) are available to help with the decline in activities of daily living?
- What are the visiting hours?
During your tour of the Memory Care facility, take note of key factors that will help the residence feel like home:
- Do other patients have personal belongings in their room?
- Is the residence clean, and free of odors?
- Is the staff respectful to residents?
- Do residents appear neatly dressed?
- Does it appear as if the residents are happy there?
The transition from home to either an assisted living facility or a skilled nursing facility is difficult. Don’t be surprised if your loved one is agitated, confused and persistent about wanting to return home. This is common, and will most likely subside as they become acclimated to their new surroundings. Speak with the nurse or administrator about visitation guidelines or suggestions during the first few days. You may find that some facilities will ask that you not visit until the resident has had the opportunity to adjust to his/her new surroundings.
Most memory care centers will focus not only on the well-being of the resident, but also that of the family. Be sure to ask if there is a support group hosted at the facility, or an outside group to which they can refer you. Such groups can help ease the emotional charge that may accompany this transition. If you have questions about the resources available in your area, contact the Alzheimer’s Association.