Welcome to the educational program Continuum of Care: Adult Daycare and Residential Care. This program will discuss the care options often needed in the late and end stages of Alzheimer’s disease, when caregiving responsibilities and demands are greater both physically and emotionally. During these stages, caregivers usually require assistance with caregiving. We will discuss the issues caregivers should take into consideration when considering alternative care options and provide information about adult daycare and residential care.
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This is Lesson 32 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section. We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.
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Stages of Alzheimer’s Diseases
Alzheimer’s disease typically progresses over a long period of time, ranging from 7 to 20 years. It is important to remember that every individual is different, and each person can manifest the illness differently at different paces.
Because the illness has a prolonged course, it helps to think of it in terms of stages. The stage classification system provides a guideline for understanding the changes that occur in those with dementia and to better plan for care. A common classification of stages uses the terms: early, middle, late and end stage.
In the early stage of dementia, affected individuals begin to forget appointments, names, and places. They may lose valuable items and may get lost in less familiar places. They often lose social graces and may become obsessed with certain people or things. They may become restless, depressed or apathetic. Sleep disturbances can begin in the early stages and worsen as the disease progresses. Initially, these problems are often attributed to stress, illness or fatigue. After the diagnosis has been made, people often realize that the symptoms of dementia started many months or years before the diagnosis. This early stage of Alzheimer’s typically lasts 2 to 3 yrs.
In the middle stages, individuals will have difficulty with managing money, legal affairs, workplace affairs, and driving. Home maintenance, housekeeping and cooking will become more challenging and perhaps dangerous. They will have difficulty functioning in new environments and can get lost even in familiar places. At this stage, personality changes are obvious, such as hostility, paranoia, swearing, and inappropriate sexual behavior. Difficult behaviors such as wandering and sleep disturbances occur more frequently. Though they may neglect their personal hygiene, when reminded, they are able to manage most of their own bathing, dressing, grooming, and self feeding. This stage typically lasts 3 to 4 years.
In the late stages, individuals will have increasing difficulty with their activities of daily living, including bathing, grooming, and toileting. Mobility will be decline significantly. They will have difficulty understanding their environment, understanding directions and in making themselves understood. Communication difficulties and loss of abilities can lead to frustration, anger, and wandering. Sleep will become more affected by nighttime awakenings, wandering, hallucinations and daytime napping. At this stage of the illness, individuals cannot be left alone and need 24 hour care. Depending on the age and health of the individual, this stage can last anywhere from 4 to 7 years.
The terminal or end stage of Alzheimer’s is the stage when individuals are not be expected to live much longer. No longer ambulatory, they may need complete bed care. They will become incontinent, lose weight and have difficulty chewing and swallowing food. They will not recognize people or objects, though they may have moments of lucidity. Because it is so debilitating, it is rare for this stage to last more than a year. Death may come about from heart failure, pneumonia or other infection, or complete brain shut down of vital functions.
Continuum of Care
The principle of a continuum of care involves planning care for individuals with a range of programs and services to meet their needs as their illness evolves. For example, a person who has had a heart attack will need close medical and nursing care for a period of time, including hospitalization. As treatment is provided and the condition improves, less intense care is needed, so that the person can continue care at home or a rehabilitation care facility.
On the other hand, some conditions and diseases have progressive courses, such as Alzheimer’s disease. So the care needs continue to increase rather than decrease.
The key to an optimal care program is the timing in which planning and decisions are made.
Planning for care should begin soon after diagnosis of the disease, well before placement in a residential care facility is needed.
The goal while advancing the level of care is to transition the person with dementia and the family from lesser to more intense levels of care over the course of the illness. An example of a continuum of care might being in the early stages with visits from a senior companion in the home, followed by a transition to adult day care once a week for a few hours, with a gradual increase in the time spent at adult day care as the person adapts. Placement in a long-term care facility will be a much smoother transition if family members are prepared, and the person is acclimated to settings other than a familiar home.
Considering Care Options
When considering care alternatives, remember to plan well in advance of any immediate needs. Caregivers should try to involve other family members in researching various care options and in making important decisions. Additionally, caregivers should use a transitional approach to increasing the care for their family member, because the longer a person with dementia lives at home, the smoother the transition and adaptation will be to adult day care. And the longer the person stays in adult day care, the smoother the transition and adaptation will be to residential care. If the person with dementia is capable, involving her or him in the decision-making can facilitate the transitions and give a sense of control to the person.
In beginning a search for alternative care, caregivers should make a list of their needs and the needs of their loved one. They should list their concerns about their own physical and mental health, and list their weekly schedule and the time’s that they will need help. In addition, caregivers must consider the needs of the person with dementia. Do they wander out of the house? Are they capable of performing daily activities such as personal care? Caregivers should also make a list of all of their resources, including financial resources, friends and family members, and any needs that they may have.
Evaluating Individual Circumstances
There are many individual factors that come into play when considering how to manage the ongoing care needs of a person with Alzheimer’s disease.
The primary caregiver’s health, job, and income needs should be considered. Availability of services and facilities, the family’s finances, safety issues, and behavior problems at home all affect decisions to investigate alternative care.
Foremost among these factors is the mental and physical health of the primary caregiver. If the only person available to provide the home care has serious health problems, the stresses of caregiving could exacerbate these problems, rendering them unable to continue the care.
Adult children who act as caregivers while still working full or part time will most likely need to keep their jobs in order to provide income to care for their own families as well as their aging parents.
It is possible that some decisions to place a person in a long term care facility are based on lack of information and social support. Families may not understand the nature of the disease and the ways to provide a good quality of life for their loved one. They may not be aware of resources that can make the work of caregiving less burdensome. They also may not have a social network that can lend a hand or to provide emotional support.
Evaluating Individual Circumstances (Continued)
One of the essential components of a care plan for someone with dementia is the provision of a safe environment. Though it is understood that a familiar environment is needed for the person, if the home environment is an unsafe one, such as being close to a busy freeway or in an industrial area, home care may not be the best choice, particularly if the person is prone to wandering away from home.
In some remote areas, care facilities are not available and in order to place a loved on in a long term care setting, some families may need to travel hundreds of miles to access them. This would mean that family members could not participate in planning and caring for their loved one on a regular basis. On the other hand, many small towns and cities may have better resources for alternative care and so regular family participation and close observation may not be necessary. Many cities have lots of services that support caregivers and people with dementia, whereas smaller towns may not. This can affect the caregiver’s ability to care for their loved own at home.
Another factor that affects the decision to place someone in a long term care facility is the ability of the family to pay for the care. Residential care facilities can be very expensive, and many families are unable to pay for it. Some families may be eligible for Medicaid supported long-term care, but there are many expenses that are not covered. Private residential care facilities vary widely in cost, but can cost upwards of $8000 per month.
Above all, it is a good idea to plan ahead. Having a plan for all levels of care well in advance of their need will make the decisions easier when the time comes and will provide peace of mind for the family, especially the primary caregiver.
Case Study 1
Let’s look at a situation between Mary, who cares for her husband Robert, and Sally, their in-home caregiver.
What should Mary do to begin putting her new plans in place?
- A. Identify and evaluate everyone’s needs and resources.
- B. Research caregiver organizations and support groups.
- C. Visit adult day care facilities.
- D. Research residential care facilities in the area.
- E. All of the above.
Case Study 1 Answers:
Choice C: “Visit adult day care facilities” is another way to begin making plans.
At some point in the illness, individuals with Alzheimer’s will no longer be safe staying home alone even with frequent visits from others. One way to help in this situation is by introducing adult day care as a supplement to home care, and, if appropriate, to aid in the transition to residential care in the future. Keep in mind that any abrupt transition into new environments may cause confusion and a decline in abilities in the person with dementia.One approach that can help this is to start taking the person to adult day care once or twice a week for a few hours to a full day, and then to gradually increase the time at day care.
When considering adult day-care for a family member, it is important to investigate different programs to see what would best fit your and your loved one’s needs. Visit the facility and arrange for a trial day or two to evaluate it for yourself.
Another option may be to transition the person into the home of another family member or a friend for a couple of days a week.
Choice D: “Research residential care facilities in the area” is another possibility.
Some good options in residential care for people with Alzheimer’s disease include Assisted Living, Alzheimer’s care facilities, and Alzheimer’s Special Care Units in nursing homes or hospitals.
Before your family member needs to be enrolled in a residential care facility, it is important to evaluate the programs that are available in your area. One thing to look for in residential care programs is a full-time activities therapist, who assesses and plans activities on an individual basis. Activities should ideally include exercise, some type of hand or kitchen craft, pet therapy, dancing, and outings, some of which should include family members when possible. All staff members, whether caregivers, custodial, or food service, should participate in activities in a family atmosphere.
Choice E: Because all of these choices are good ways to begin planning, the best answer is choice E, “all of the above.”
Adult Day Care
Adult day care is one form of respite care, which is the provision of short-term relief to those who are caring for family members. Adult day care provides the caregiver a short break from caregiving while the person is cared for at a center. No matter how careful and loving the care provided by families, caregivers can become fatigued or depressed, or lack the energy to be cheerful and engaging all the time with their loved one. Enrolling the person in an adult day care program can be an important compliment to family care. It provides the primary caregiver with much needed rest and the opportunity to take care of errands, personal issues, and maintain ties with friends.
Another benefit of adult day care is that it delays placement in long term, residential care by lessening the burden on the primary caregiver and promoting the care recipient’s functioning and overall health.
Adult day care programs vary widely, but often provide social activities, therapeutic services, physical exercise, mental stimulation, and nutritious meals for people with dementia, chronic illness, or disabilities. Some programs will offer an array of health services, which may include nurses, physical therapists, dietitians and an on-site physician or nurse practitioner 2 to 3 days per week. The average age of participants is 72 yrs, and 2/3 of these are women.
Generally, the programs are available several hours a day to a full day, five days a week. Most programs do not offer weekend services, although some may offer half-day services on Saturdays or overnight weekend services. Most programs will provide transportation to and from the center.
There are three types of adult day care:
- Alzheimer’s specific adult day care, which provides social and health services only to those with Alzheimer’s or a related dementia.
- Adult day social care, which provides social activities, meals, recreation, and some health-related services.
- And adult day health care, which offers more intensive health, therapeutic, and social services for individuals with severe medical problems.
Adult Day Care (Continued)
So, what typically happens at adult day care in the course of a day? Usually the caregiver brings the person to the care site or arranges for shuttle service to the site. Keep in mind that using a shuttle service can sometimes lead to spending more time in transit, as the shuttle may have to pick up several other people. At the care site, people are greeted by the staff and are often offered a drink and snack while they wait for others to arrive. Program members are normally assigned to a group based on their function, cognitive level and sociability.
The day often includes a current events group with a staff member reading the newspaper and encouraging discussion. An exercise class may consist of chair exercises or a walk around the grounds for those who are able. People are encouraged to interact through social activities and projects.
How appropriate is adult day care for someone with Alzheimer’s disease? This depends on finding a match between the day care program and the individual’s needs and stage of illness. Some day care programs are developed specifically for individuals in middle and even early late stage Alzheimer’s. Caregivers should find out if a particular program is designed to manage issues such as incontinence, wandering, agitation and aggression.
The cost for adult day care can vary from $40 to $150 per day, depending on the program and the geographic location of the program. Medicare, Medicaid and private insurance may cover some of the cost.
Finding a Day Care Facility
There are over 4,000 adult day care centers nationwide. To find an Adult Day Center in your area, you can contact your local Area Agencies on Aging. Click here to find a list of Area Agencies on Aging near you.
The National Adult Day Services Association, or NADSA, provides help on their web site in finding local care centers. It also offers a set of guidelines for adult day service programs.
ARCH National Respite Network provides a free search service to help caregivers find respite care in their local community.
The National Aging Information Center offers the Eldercare Locator, which helps to find community assistance for seniors.
The Alzheimer’s Association provides a list of issues to consider when choosing an adult day care program. A link is provided to that list. Your local chapter of the Alzheimer’s Association may also have a list of programs near you.
The Better Business Bureau may have information on for-profit adult day care centers. Another place to begin searching for a program is in a phone directory, which will list options under “Day Care-Adult.”
There number of adult day care centers continues to grow due to the increasing demand for home and community-based services that meet the needs of a rapidly growing senior population.
Assisted Living Residential Care
Assisted living is a rapidly growing alternative to traditional nursing home care. Sometimes free standing but more often a component of a retirement community, assisted living supports independent living in a secure environment with some supervision and monitoring of activities and health. The appeal of assisted living programs is the ease of transition to a higher level of care within the same organization, with the same administration, policies, and staff. Individuals can move from independent house or apartment living, to assisted living, and finally to nursing home care.
Assisted living facilities offer a variety of services customized to individual needs. These may include laundry services, housekeeping, transportation, exercise and wellness programs, social and recreational activities, responsive staff, and congregate or delivered meals.
Security is provided through secured entrances and exits, 24 hour security crew, and emergency call systems.
Other support services include access to health and medical services on site or transportation to appointments, medication management, and 24 hour response to emergencies.
Personal assistance is available in many assisted living facilities for an additional fee. Assistance with personal care such as bathing, dressing and grooming are considered more intense levels of care, and the cost usually increases according to the level of care.
The Assisted Living Federation of America (or ALFA) reports that there are approximately 36,000 assisted living communities nationwide serving 650,000 seniors. These facilities are regulated by state and federal agencies and must comply with federal statutes such as the Americans with Disabilities Act.
Assisted living facilities can range in cost from $800 to $5,000 a month or more, depending on the location and level of care. Prior to moving in, some organizations may require an initial buy-in, entry, community, endowment or admitting fee. Most Assisted Living Facilities have an additional fee schedule for various levels of care and customized services.
Alzheimer Care Facilities and Special Care Units
Facilities that specialize in Alzheimer’s care can be free standing or associated with Assisted Living or other long-term care facilities, such as the Veterans Administration. Alzheimer’s Care Facilities are created with core principles of design and care based on what science has revealed about the disease. These principles include safety, security, comfort, love, respect, and independence or autonomy.
Alzheimer Special Care Units (SCUs) are specialized facilities within an existing nursing home or hospital that have been designed to provide residential care to Alzheimer’s clients.
Many modifications are necessary to meet the special care needs of those with dementia. In choosing a residential care facility, caregivers should look to see how well the core principles are upheld in the design of the facilities and their programs. The four main areas necessary to ensure a quality residential care facility for people with dementia include the physical layout and design, the selection and training of staff, the program of activities, and the management and administration of the facility.
The physical design recognizes that people with dementia can become confused by complex routes, designs, and intense colors. The living spaces should be organized and uncluttered. The layout should be simple with clear, well-marked paths with labels directing the way from the bedroom to the toilet and the dining areas. There should be short distances with easy visual access to toilets and common areas. Important doors should have signs or pictures on them. Safety and comfort should be maximized in the design plan and décor. Indirect lighting without glare, hand rails, non-skid floors, clear demarcations, and secured doors should be in place. Furniture and facilities should support independence. Another important consideration is whether the building or unit is secure so that residents cannot wander away or enter areas that are off-limits. The facilities should have locks on windows and alarms at exits as needed.
Residential facilities should employ staff carefully selected to emphasize compassion, patience, and person-centered, rather than task-centered, care. All staff should have received specialized training in the specific challenges of Alzheimer’s disease care. Training should include information about the disease and dementia-related behaviors, and provide techniques on promoting the core principles of dementia care. All staff should be trained in how to reduce fear and confusion in the residents and to manage difficult behaviors, including agitation and aggression.
Quality Residential Care Facilities
All residential facilities should offer a program of activities for residents that includes pleasant activities, exercise, socialization, and opportunities to pursue spiritual needs. The facility should encourage families to be involved from the beginning in designing a personalized program of activities. All residential facilities should have a full time activities therapist who assesses and plans activities on an individual basis that promotes the use of remaining abilities. Activities should ideally include physical exercise, some type of hand craft, pet therapy, and outings, some of which should include family members when possible.
The management and administration of staff involves meeting government regulations and ensuring safe, quality care. Any organization set up to provide human services will require authorization by state regulatory agencies. Most states have minimum standards for licensure or certification as well as recommended program components. Care facilities must also comply with federal regulations that include the Americans with Disability Act, Civil Rights legislation, Fair Labor Standards, and Occupational Safety and Health Act. Most state offices require professionally licensed supervisory staff depending upon the level of care offered and acceptance of Medicaid clientele. Nurse’s aids and nursing assistants are required to have a minimum number of hours of initial and ongoing training, and be licensed or certified to be employed in a human service organization.
The important point here is that families should make inquiries to verify that the facility meets the necessary standards. The link to the Assisted Living Federation of America will provide contact information for the state regulatory agency for each state.
In evaluating a facility, caregivers should ask very specific questions about facility design and staff training. Some places may take people with Alzheimer’s disease but may hire minimally trained staff or may not have specialized programs. Caregivers can also contact the local Alzheimer’s Association for a checklist of what to look for in residential facilities and a list of local facilities at which they may have provided staff training.
In summary, a person with Alzheimer’s disease will require increasing levels of care as the disease progresses. The longer individuals can be cared for in their own home and by loved family members, the longer they will be able to maintain their functional abilities. When beginning a search for care alternatives, caregivers should make a list of the needs of all involved family members.
Adult day care programs should provide social activities, therapeutic services, physical exercise, mental stimulation, and nutritious meals. It is important to find the proper match between the various types of adult care programs available and the needs of the person with dementia as well as the caregiver.
Assisted living facilities support independent living in a secure environment with some assistance and monitoring. They allow an easy transition to higher levels of care within the same organization.
Alzheimer’s care facilities and Special Care Units are specifically designed to accommodate residents with Alzheimer’s disease. They should take into consideration the special needs of those with dementia in the physical layout and design, the selection and training of staff, the program of activities and care, and the management and administration of the facility. All programs should promote the core principles of dementia care. In selecting a facility, caregivers should verify that it meets the necessary state and federal regulations.
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Written by: Catherine M. Harris, PhD, RNCS (University of New Mexico College of Nursing)
Edited by: Mindy J. Kim-Miller, MD, PhD (University of Chicago School of Medicine)
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