Memory Care

Recent estimates suggest that half of all adults over the age of 85 years likely have some form of dementia, though it's common for the disease to go undiagnosed. Despite a high incidence in aging adults, dementia is not a normal part of aging and eventually requires memory care. Here, we will delve into the difference between choosing an assisted living facility or nursing home for memory care.

While the need for memory care is common in Alzheimer’s disease and other dementias, it is only one of many possible signs of these diseases. The National Institute on Aging (NIH) states that in order for an individual to be diagnosed with dementia, an individual must have loss of brain function to the extent that it prevents one from performing normal, daily activities and impairment of two or more core mental functions such as:

  • Memory impairment
  • Language skills
  • Visual perception
  • Ability to pay attention and focus
  • Ability to problem solve
  • Ability to reason

In addition to these impairments, individuals with dementia may also have difficulty controlling their emotions. Some individuals experience delusions and hallucinations as well that can lead to disruptive behaviors.

Memory care and dementia

The most common diseases requiring memory care include Alzheimer’s disease and other forms of dementia such as vascular dementia, Lewy body dementia, and frontotemporal dementia. While these diseases have some predictable characteristics and stages of progression, they can also result in very different behavior depending on the individual and how their brain is affected by the disease. While one individual with Alzheimer's disease and dementia may be pleasantly confused but easily distracted when they become upset, another individual with the same disease at the same stage may become combative and difficult to redirect.

The stages of Alzheimer’s disease

Although Alzheimer’s disease symptoms can vary for each person, understanding the general cognitive, physical, and behavioral changes that occur at each stage of the disease will help family members know whether an assisted living community or a nursing home would best meet a loved one’s needs. Other forms of dementia follow these stages very closely as well.

Seven stages of Alzheimer’s disease have been identified as follows:

Stage 1: No memory impairment

Stage 2: Very mild decline

Stage 3: Mild decline

Stage 4: Moderate decline

Stage 5: Moderately severe decline

Stage 6: Severe decline

Stage 7: Very severe decline

In stage 4, an individual usually forgets recent events, has difficulty paying bills, and becomes more withdrawn and moody. These changes lead to stage 5 where the individual becomes confused about where they are, what day it is, and what their address is. They also have difficulty dressing appropriately for the weather and season. Individuals in stages 4 and 5 may benefit from Alzheimer's care in an assisted living facility if home health care and other personal care supports are not available.

When the disease progresses to stages 6 and 7 (see below), care in a nursing home or dedicated memory care facility is usually needed due to the complex skilled nursing care required and the various cognitive, physical, behavioral, and emotional problems that occur. Stages 6 and 7 are marked by the following changes:

Stage 6 - Severe cognitive decline (moderately severe or mid-stage Alzheimer's disease)

Memory continues to worsen, personality changes may take place and individuals need extensive help with activities of daily living (ADLs). In this stage, individuals may:

  • Distinguish faces but have trouble remembering the name of their spouse/caregiver
  • Need help dressing properly; might make mistakes such as putting underclothes over daytime clothes or shoes on the wrong feet (when not supervised)
  • Experience significant changes in sleep patterns
  • Need help with all aspects of toileting (e.g. wiping, flushing toilet, etc.)
  • Have increased problems with bladder and bowel control
  • Display major personality and behavioral changes
  • Tend to wander or become lost

Stage 7 - Very severe cognitive decline (severe or late-stage Alzheimer's disease)

In this last stage, individuals become unable to respond to their environment or have a conversation. Eventually, they lose control of movement. As a result, individuals in this final stage need help with most ADLs including eating and toileting. They may be become unable to sit without support. In addition, reflexes become more abnormal, muscles become more rigid, and swallowing becomes impaired.

Other problems that can occur in stages 6 and 7 that require nursing home Alzheimer's care include:

  • Resisting or refusing long-term care facilities
  • Rummaging in others’ belongings
  • Taking others’ belongings
  • Excessive pacing or walking aimlessly
  • Inappropriate sexual or social behavior
  • Aggressive or combative behavior
  • Inability to control or manage one’s own bladder and bowel function
  • Forgetting to eat/drink or not wanting to eat/drink
  • Inability to perform self-care
  • Wanting to “go home”
  • Fixating on thoughts or something from the past
  • Becoming upset easily and crying or becoming angry
  • “Sundowning”

Although both nursing homes and some assisted living facilities provide care to individuals with memory loss, there are significant differences regarding the stage of the disease that an individual is at and the physical and cognitive effects that each stage of the disease will have on one’s daily life. If a loved one has other health conditions as well, this will also be an important factor in determining whether their care needs would best be met in an assisted living facility or a nursing home.

Memory care in assisted living facilities

Assisted living facilities vary widely in the types of services they provide and the complexity and level of skilled care they offer. As a result, some memory care communities are able to provide care for individuals in the early to middle stages of Alzheimer’s and dementia while others do not have this capacity.

In general, assisted living facilities are best suited to individuals who are still able to live quite independently and do not require 24-hour care. This would include individuals who have mild cognitive impairment and memory loss who need assistance with ADLs such as bathing, dressing, and meal preparation. Individuals usually live in private or shared apartments. Meals are usually provided in a central family-style dining room and medication administration is also more commonly offered now in these communities.

Some assisted living facilities also contain memory care units or special care units that are designed for individuals with more advanced memory loss and cognitive impairment. These units may incorporate specific architectural features such as plenty of natural light, bright and contrasting colors, and these units may be set up in a circular pattern so residents can walk and not become frustrated with hallways that end abruptly.

These specialized units are also usually staffed with skilled nursing personnel who are trained to work with people who have Alzheimer’s disease and dementia. This specialized training includes education about stages of the disease as well as ways to manage various behaviors and challenges that can occur.

Other considerations when choosing care

Other health problems

When considering whether a loved one requires long-term care in an assisted living facility or a nursing home, another important factor to consider is other health problems and medical care the individual may require. While some assisted-living facilities provide some nursing care such as medication administration, other assisted-living facilities do not provide any nursing care. Other medical care that may be required includes dressing changes and wound care, frequent blood glucose monitoring, pain or nausea management, seizure management, and tube feeds as well as rehabilitation after an injury (e.g hip fracture) or stroke requiring physical therapy, occupational therapy, and/or speech therapy.

Falls

When deciding whether an assisted living facility or a nursing home would be most appropriate for a loved one, another important factor to consider is whether or not a loved one is falling. Falls are more common in people with dementia. In fact, individuals with dementia are 4 to 5 times more likely to fall than older adults who do not have dementia. In addition, individuals with dementia who do fall have three times higher risk of a fracture than individuals without cognitive impairment who fall.

For these reasons, it is important to evaluate whether a loved one has been falling and if the frequency and severity of their falls have been getting worse. If so, a nursing home may be the best option for your loved one. Nursing homes typically have higher staff-to-resident ratios due to the higher level of care that is required. Most nursing home staff are trained in falls prevention strategies and use of devices such as bed and chair alarms notify staff immediately if an individual is getting out of their bed or chair so specially trained staff can respond quickly to help prevent a fall.

Staff training and skill level

Another important factor to inquire about is the skill level and training of care home staff and how it may vary between assisted living facilities and nursing homes. Staff in an assisted living facility are often knowledgeable about providing assistance with ADLs such as eating, bathing, dressing, toileting, and mobility. However, specially trained staff in an assisted living facility may not have any specialized training to work with residents who are cognitively impaired. As a result, staff in assisted living facilities may not be well equipped to deal with some of the disruptive behaviors that individuals with Alzheimer’s disease or dementia frequently display. However, care home staff in a nursing home include licensed practical nurses and/or registered nurses who do have some training in caring for residents with Alzheimer’s disease and dementia including training in how to manage disruptive behaviors.

Cost of care

When considering whether a loved one’s needs could best be met in an assisted living facility or nursing home, the cost is another key factor to consider. The difference in the monthly cost of an assisted living facility as opposed to a nursing home is quite significant. In 2017, Genworth Financial found that the median monthly cost of care in an assisted living facility was $3750 whereas the median monthly cost of care in a nursing home was $7148 - $8121 (semi-private rooms vs. private rooms). Hence, nursing home care costs about twice as much as assisted living care.

If it is determined that a loved one’s needs can be met in an assisted living facility, this may be the best option to start with based on the large cost of care difference per month between the two types of facilities. However, it is important to keep in mind that Alzheimer’s disease and other dementias are chronic, progressive diseases that get worse over time resulting in the need for skilled nursing care eventually although this progression may occur over a few months or a number of years.

If a loved one requires skilled medical care that is not available in an assisted living facility (e.g. blood glucose monitoring, dressing changes, etc.), it may be cheaper to pay for some home health care to come into the facility as needed to provide this care. This would ensure that your loved one’s needs are met while still keeping the cost below that of a nursing home.

Finally, it is also worth noting that some facilities are “dual-care” facilities and include both assisted living and nursing home beds which makes for an easier transition for an individual with dementia and their families when the time comes that the individual needs nursing home care. Be sure to inquire if any “dual-care” facilities exist in your area, their associated costs, and if these facilities are covered by Medicare and/or Medicaid.

Choosing a memory care provider

To assist in selecting an appropriate care provider for a loved one with Alzheimer’s disease or dementia, the Alzheimer’s Association provides the following suggestions:

  • Begin by assessing the individual’s care needs and involve the person with dementia in decisions about specialized care when possible.

The amount of assistance an individual needs will depend on several factors including how independently they can eat, walk, bathe, and use the bathroom. During earlier stages of the disease, an individual may still be able to live more independently but in the middle to later stages, 24-hour to more intensive care will be required. The following questions need to be addressed:

  • Safety - Is the individual safe? What type of supervision do they require? Is this a secure environment?
  • Health and Well-Being - Does the health of the individual require specialized care? Do they need help with medications?
  • Care - Does the individual need more care than they are receiving? Does the individual need help toileting, bathing, dressing or grooming? Is it becoming difficult for the current caregiver to care for the individual? Can the caregivers physically provide the specialized care needed?
  • Social engagement - Is the individual engaged in meaningful daily activities? Would spending time with other people with dementia be beneficial?

When touring and researching various assisted living facilities and nursing homes, it is suggested that you write down the following questions, make multiple copies of this list, then take a copy with you to each facility that you visit. In addition to the questions below, be sure to see this detailed checklist for Alzheimer's care facilities provided by the Alzheimer’s Association as well.

  1. Are you able to provide care for people with (memory loss, behaviors they demonstrate, and their other medical conditions)?
  2. Do you have staff who are specially trained in providing memory care to individuals with memory loss?
  3. What is your staff to resident ratio?
  4. What services does the care home provide? Are the services included in the monthly fee? If not, what is the cost of the services? Is it possible to have someone else come in to provide the services that my loved one requires?
  5. What is the monthly fee?
  6. Is there a nurse on staff who is able to assess residents in the event that they become sick or injured for example due to a fall? When is there a nurse on duty?
  7. Is there a secured outside space that my loved one can enjoy without wandering away?
  8. How are falls handled in the care home? Does the care home have any preventative measures to keep falls from occurring?
  9. Is there any regular or special programming on a daily or weekly basis to keep residents occupied and engaged?
  10. Is transportation available for residents? If so, is there an additional cost for this and how is transportation arranged? Is someone available to accompany my loved one to medical appointments etc.? If so, what is the cost of the service?

For more detailed information about the differences between Alzheimer's care facilities that provide care for individuals with memory loss and dementia and what questions to ask when researching various memory care facilities, please see the information provided here. Also, be sure to use this Community Resource Finder to locate housing options and other valuable resources for a loved one with memory loss.

If you are not sure what care needs and possible behavioral or cognitive challenges that a loved one currently has, it is important to have them assessed by a healthcare professional so you know what their specific needs are prior to looking for a long-term care facility that will meet these needs.

Working with memory care staff

Once it has been determined what type of care facility would best meet the needs of a loved one with memory care needs, the next important step for families is to work with care home staff in transitioning their loved one into the care home of their choice. Care home staff prepare detailed plans of care that are individualized to the unique needs of each resident. Because of this, the input of family members and the individual is vitally important to ensure all care needs are met and personal care preferences are accounted for.

When care home staff are preparing or reviewing a care plan for an individual, the Alzheimer’s Association states that family members have a right to be included in care plan conferences and should try to be present as much as possible for these meetings even through teleconferencing or Skype if necessary. They recommend family members prepare for care conferences about a loved one by doing the following:

Before the meeting:

  • Ask that the meeting is held when you can attend.
  • Request a copy of the current care plan so you can review it before the meeting.
  • List the questions, changes, concerns or goals you would like to discuss.

At the meeting:

  • Involve the resident as much as possible.
  • Ask questions to make sure you understand everything.
  • Take notes.
  • Be sure you agree with the care plan.
  • Ask for a copy of the care plan.

Follow up:

  • Stay involved in care. As the disease progresses, the person’s needs will change.
  • Log any reactions to the care plan, medication or treatment.
  • Communicate regularly with the doctor or staff about the care plan.
  • If the plan is not working, ask for another care conference.

Medicare and Medicaid

When trying to decide between an assisted living facility and a nursing home, it is also important to look at what Medicare and Medicaid will cover for individuals with Alzheimer’s or dementia.

First of all, Medicare will not pay for care in an assisted living facility or continuing care retirement community (CCRC). With nursing home care, Medicare will pay for up to 100 days of care in a nursing home only after an individual has spent 3 days in a hospital and only if an individual requires skilled nursing care as determined by certain healthcare providers. If an individual also qualifies for Medicaid, care in a nursing home or skilled nursing facility may pay be paid for by Medicaid after the 100-day period of coverage by Medicare depending on the state an individual lives in.

If an individual is eligible, Medicare will pay for some but not all care related to Alzheimer’s disease or other dementias, however, an individual will usually have to pay the monthly costs for assisted living and nursing home care through private pay, long-term care insurance, veterans benefits, or other private long-term care insurance.

Medicare also has Special Needs Programs (SNPs) that are available to assist beneficiaries with care needs related to dementia including Alzheimer’s disease. These plans are also known as Medicare Advantage Plans. To learn more about Medicare SNPs, please see the information provided here. To find Medicare SNPs in your area, use this Medicare Plan Finder.

In addition to Medicare SNPs for individuals with dementia, there are other programs that assist with the payment of Medicare premiums and deductibles for individuals with modest incomes. For more detailed information about programs that can assist with Medicare premiums and deductibles, please see the information provided here.

Medicaid waivers are also available in some states to help pay for an assisted living community and home care for low-income individuals who qualify, however, these waivers are limited in number and often have long waiting lists as well. For more details about Medicaid waivers and eligibility in your state, please see the information provided here.

Care planning

Care planning is one of the important services for individuals with memory loss and cognitive impairment that Medicare began covering as of January 1, 2017, under the G0505 code. Care planning ensures that individuals who are diagnosed with cognitive impairment are made aware of treatment options and clinical trials and have access to appropriate supports and resources. Research has shown that proper dementia care planning for individuals with cognitive impairment results in fewer emergency room visits and hospitalizations and better medication management as well as a higher quality of life.

Care planning with a healthcare professional recognized by Medicare will address the following areas with a loved one who has memory loss and their family:

  • Evaluation of cognition and function.
  • Assessment of symptoms.
  • Review and reconciliation of medication.
  • Evaluation of safety (including driving ability).
  • Identification of caregivers and their needs.
  • Identification and assessment of dementia care directives (e.g., living will, medical power of attorney, healthcare proxy, etc.)
  • Identification and planning for palliative care needs.
  • Referrals to memory care community services for both the affected individual and their caregiver.

By identifying the current and anticipated future needs of a loved one requiring memory care as well as the costs of various care options, individuals with memory loss and their families will be in a better position to find a care solution that best meets their overall needs.

Memory care FAQs

1. My father has quite advanced Alzheimer’s and he also has arthritis that causes him a lot of pain. How will the care home staff know that my father is having pain and be able to give him something for it when he can’t talk anymore?

There are a number of ways that the care home staff will know that your dad is having pain when he can no longer communicate verbally. Some signs that an individual is having pain that the care home staff will watch for include moaning or other nonverbal vocalizations, increased pulse and/or breathing rate, and restless or agitated behavior. When an individual receives adequate pain control these signs usually subside quite quickly.

2. My mom fell and broke her hip two years ago. We’re moving her into a nursing home soon because of her advanced dementia and I don’t want her falling again. The care home staff said that they don’t use physical restraints so how will they keep her from falling again when she keeps trying to get out of bed at night?

A common device used in care homes is a bed alarm. The device immediately sets off a loud alarm to notify care staff who can immediately respond when an individual is trying to get out of bed. Care home staff will also want to evaluate why your mom is getting out of bed at night and address why this may be happening. Some reasons that your mom may be trying to get up at night include pain, thirst, the need to go to the bathroom, etc. If care home staff can determine why your mom is trying to get out of bed, they may be able to help reduce or stop this behavior.

3. My dad has become a totally different person since his memory loss has gotten worse. He gets upset so easily now although he used to be such a gentle, loving person who never seemed to get angry. Is this a normal part of his memory loss or is something else may be wrong?

Yes, unfortunately, it is common for individuals to have difficulty controlling their emotions, particularly as the disease progresses. It is not uncommon for individuals to experience personality changes as well due to changes in the brain that occur with progression of the disease.

4. Why won’t my mom eat now that she’s in a nursing home? She’s always had a really good appetite but when her Alzheimer’s got so bad, we had to find a nursing home for her a couple months ago and she’s lost a lot of weight since then. The staff says she doesn’t eat much. Is there something that can be done so she doesn’t keep losing weight?

A lack of appetite is not uncommon for individuals with Alzheimer’s disease and other forms of dementia. Often these individuals do not sit down long enough to eat and/or they are easily distracted when eating. Because of this, it is important for the care home staff to frequently offer highly nutritious, high-calorie snacks to your mom ideally in the form of “finger foods” or foods that can be held in her hand if she is mobile such as sandwiches, bananas, nutrition bars, etc. If she has difficulty swallowing, puréed food or soft foods such as porridge, yogurt, ice cream, puddings, etc. would be best.