A difficult truth of Alzheimer’s and dementia is as the disease progresses living at home becomes nearly impossible. This could be because caregiving is overwhelming, because hiring care is prohibitively expensive or simply because it is not safe. Residential care may be the best option as it can combine housing, support and health care. Understanding the available residential care options for those with dementia, such as assisted living and memory care, is crucial to maximizing those twilight years.
Admissions – Residence tours have largely become virtual. In many cases, families are unable to assist with the move-in process. Instead, they must rely on staff to move their loved one in and to make them comfortable during the first few weeks following admission.
Staffing – Training on the using personal protective equipment (PPE), infection prevention and control (sanitizing, etc.). Staff are subject to frequent testing especially when an outbreak has occurred within the residence.
Residence – Changes to group dining and activities to allow distancing. Mask-wearing while encouraged, is difficult to enforce. Some residences have created COVID-wings, separating healthy residents from those testing positive. This means residents may be required to make rooms changes. Other residences attempt to isolate infected persons to their rooms with meal delivery.
Visiting – Many residences have temporarily halted visits or require a mask and allow outdoor visits only. This may change with the approach of winter. Exceptions to these rules may exist if someone is near the end of life.
Assisted living facilities provide sufficient care for individuals in the earlier stages of Alzheimer’s disease and dementia. Persons with dementia may not have many medical problems at this stage, but they do need more intensive support for Instrumental Activities of Daily Living (IADLs), including activities we perform from day to day that add to our quality of life without being as basic to self-care as Activities of Daily Living (ADLs). ADLs are normal activities we must perform daily. Individuals with dementia may also need help with these tasks.
In assisted living, individuals generally live in a private studio, private apartment, or a shared apartment, and have staff available to assist them 24-hours per day. This type of living arrangement is ideal for someone who can be mostly independent but needs assistance with ADLs. Transportation to and from doctor’s appointments and social activities are also offered at assisted living facilities. And assisted living facilities have dining halls where residents gather to eat meals.
Some assisted living residences also offer “special care units” or wings of the residences to which the individual can move when their needs become to severe for general assisted living.
What the Activities and Instrumental Activities of Daily Living? | |
Instrumental Activities of Daily Living (IADLs) | Activities of Daily Living (ADLs) |
-Managing money (i.e., writing checks, handling cash, keeping a budget) -Managing medications (i.e., taking the appropriate dose of medication at the right time) -Cooking (i.e., preparing meals or snacks, microwave/stove usage) -Housekeeping (i.e., performing light and heavy chores, such as dusting or mowing the lawn) -Using appliances (i.e., using the telephone, television, or vacuum appropriately) -Shopping (i.e., purchasing, discerning between items) -Extracurriculars (i.e., maintaining a hobby or some sort of leisure activities) |
-Bathing (i.e., able to bathe without assistance in cleaning or getting into tub or shower) -Toilet Use (i.e., able to use the toilet and clean oneself afterwards) -Control or continence of urine and bowels (i.e., able to wait for the right time and the right place) -Dressing and grooming (i.e., able to button a shirt, choosing appropriate clothing) -Moving about (i.e., able to move in and out of a chair or bed, walking) -Eating (i.e., able to eat without having to be fed by another) |
For individuals with dementia who require a higher level of skilled care and supervision then 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.
Another option is skilled nursing facilities, 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. In spite of your best efforts to support and care for a loved one, consider long-term care in a skilled nursing facility in the following circumstances:
Adult foster homes are typically family homes in which up to four residents are cared for by one or two caregivers. While they can be less expensive than memory care or assisted living, they are less popular for persons with Alzheimer’s or dementia due to logistical challenges. With fewer caregivers on staff at any point in time, it is more difficult to offer 24-hour supervision. Having said that, some persons with dementia excel in the home-like environment offered by adult foster homes. In rural areas it may be difficult to find adult foster care with specialized training and security for Alzheimer’s patients.
With the number of residents typically between 6 and 12, these homelike environments are better for some persons with dementia. Individuals who perhaps require a lot of attention but not necessarily a lot of activity may prefer the small care home to a larger memory care residence that can have upwards of 40 residents. Contrasting with larger homes, space, especially secure outdoor space, is limited at board and care homes. Assistance finding board and care homes is available here.
Progressive conditions such as dementia result in ever-increasing care needs. Increasing care needs often necessitate a change in living environments. In a fairly short period of time, a person with Alzheimer’s may move for their home to assisted living to memory care and finally to a nursing home. These moves are often marked by difficult transitions as the resident adapts to their new environment. This is where Continuing Care Retirement Communities (CCRC) come into play. Housed in a single location, a resident can receive whatever level of care their require. As the disease progresses, individuals are not required to move. For almost anyone with Alzheimer’s, this is preferred but the drawback is the expense of CCRCs. CCRCs often require a large upfront “move-in” fee and for many middle-class Americans, this is out of reach unless they sell their homes to offset the move-in cost.
For both assisted living and memory care, several variables affect cost. These include the geographic area where one lives, whether one has a private room or a shared living space, and the amount of care service required. However, due to the specialized dementia care that is offered at memory care units, costs are higher than assisted living. On average, one can expect to pay approximately $4,000 per month for assisted living and $5,200 per month to reside in a memory care unit.
Another crucial new consideration in paying for assisted living and memory care is the updates in 2019 and 2020 to Medicare laws. Medicare Advantage, a Medicare option that partners with private insurers to provide customized care, is expanding its definition of “supplemental benefits,” and will allow assisted living and memory care communities to be officially designated as a beneficiary’s “home.” While the program won’t cover the entire cost of living in these residences, it can potentially save a good deal of money by paying for various aspects of living in assisted living or memory care. About one-third of Medicare recipients are enrolled in Advantage, and that number is likely to rise. More on the new Medicare Advantage. More about paying for memory care.
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.
Since individuals with dementia may easily become stressed and confused, memory care units emphasize relaxation. They do this by creating an area where residents can gather, such as a television room; by painting the halls with bright, colorful paint; and by featuring a lot of natural light.
Because a common symptom of Alzheimer’s disease is lack of appetite, some facilities may have a fish tank displayed in the dining room; studies have found that something as simple as watching fish swim can stimulate one’s appetite.
How medications are managed within assisted living and memory care facilities varies from state to state. State regulations in (for example) California and Illinois allow assisted living residents to keep and self-administer their own medications, while other states (including Wisconsin and Arizona) require trained staff to administer all medications. This may be something to consider while researching assisted living options.
In memory care, residents of course require assistance with their medications. That assistance should be part of the services at any memory care community, but specifics will vary by state.
Increasingly popular for some forms of dementia, in particular dementia from Parkinson’s, is CBD (Cannabidiol). CBD is managed differently in assisted living, where some residents can control their own medications and in memory care, where residents do not. Due to the mixed legal status of CBD in different states, some memory care residents will be able to use CBD oil and others will not. See a chart of which states allow CBD in assisted living and memory care facilities.
In assisted living, staff is trained to assist patients with their activities of daily living, such as helping an individual to bathe and offering help with changing clothes. In memory care units, staff is also trained to assist with activities of daily living and handle the specific needs of those with Alzheimer’s and other dementias. This training includes understanding how the disease manifests, knowing why dementia patients may exhibit disruptive behavior, how to respond to it, and how to communicate with individuals with dementia.
For assisted living facilities, there currently is no nationally set guideline for an appropriate staff-to-patient ratio. Individual communities determine the “sufficient” ratio to best meet the needs of their program and residents. (This may be governed by state regulations). However, memory care units do require a higher staff-to-patient ratio in order to adequately care for persons with dementia. An ideal is one staff member to five residents, but again, the staff-to-patient ratio is not nationally governed, and one staff member to six residents is common. It is worth noting that even in well-run, properly staffed memory care units, the needs of an individual resident may exceed what staff can offer. In these situations, the family may be asked to pay for several hours of outside care assistance each day.
Assisted living communities vary in size. Small communities house four to six people, medium communities house 11 to 25 people, and large communities house 26 to 100 people. Some communities even house over 100 people. As with the size of assisted living communities, memory care units range from small to large. However, memory care with 100 residents is rare.
The number of residents has little impact on cost. Some persons with dementia are more comfortable with a greater number of fellow residents; others with fewer. Families should choose accordingly.
Generally, safety checks are more frequent in memory care units, and some residences utilize tracking bracelets that sound an alarm if a resident nears an exit. Memory care units also tend to follow a more rigid schedule, since those with dementia generally do better with routine.
It’s common for those with Alzheimer’s to lack appetite, so memory care units design meals to address this issue. They will create a contrast between the color of the food and the plate so residents easily see their food, or offer flexibility with dishes.
Extra safety measures are also taken on memory care units. Examples include locking up items that are poisonous, such as shampoo, laundry detergent, and mouthwash containing alcohol.
When searching for an assisted living facility or a memory care unit, it’s important that one thoroughly researches options. Since residences vary on services and care provided, number of occupants and staff, layout of the community, cost, and so forth, it’s vital to find a home that best meets your loved one’s needs. This process can be overwhelming especially when already spending so much time and effort caring for your loved one. Fortunately, free assistance is available to help families locate and evaluate assisted living, memory care residences and adult foster care homes. Get free assistance here.