Caring for an individual with dementia can be a rewarding yet extremely challenging experience. Many believe that the caregiving process is one that must be undertaken alone, without support or assistance. This is not true. There are many options to assist with the care and housing needs of individuals with dementia.
This article will:
- Define the three levels of care that may be required
- Provide a brief overview of available care options
- Discuss how to pay for the type of care that is required
- Discuss how to determine the most appropriate care options for you as a care provider and the individual that you are assisting.
Levels of Care - In general, there are three levels of care that an individual may need — custodial, intermediate and skilled. These terms refer to the type and intensity of care that an individual requires.
Custodial care - Custodial care is often referred to as basic or personal care. It assists a person with activities of daily living (i.e. assistance with bathing, eating, dressing and other routine activities). It is less intensive or complicated than intermediate or skilled care. Custodial care can be provided in many settings, including home, assisted living and nursing facilities. By definition, custodial care does not need to be provided by a skilled professional. Skilled professionals are defined as Registered Nurses, Physical Therapists, Speech Pathologists and Occupational Therapists. Although many health aides do have certification, they are not considered "skilled" professionals as defined by Medicare. Dementia care is often time considered custodial or basic care.
Intermediate care - Intermediate care is designed for people who require assistance with activities of daily living, some health services, and nursing supervision. However, intermediate care does not include constant nursing care. This level of care may include assistance with personal care, periodic health monitoring (i.e. monitoring of blood pressure or blood sugar levels) and medication reminders.
Skilled care - Skilled care is for individuals who need 24-hour medical supervision, skilled nursing care, or rehabilitation, but do not need to be hospitalized. A physician's order is required for skilled care provided at home and in a nursing facility.
Care Options -
In-Home Care -
- Home care consists of a wide range of services that are provided in an individual's home. These services include custodial, intermediate and skilled care such as assistance with activities of daily living (bathing, toileting, dressing, etc.), medical care, long-term care planning, assistance with decision making, counseling, housekeeping and laundry services and companionship or supervision. Services may be provided by nurses, rehabilitation therapists, social workers, home health aides, homemakers, and/or volunteers.
- Respite services provide a temporary relief from daily caregiving tasks. It is a vital component in the caregiving process since it allows the caregiver to have some time away to do things that he/she is interested in or will enjoy. Any activity that will allow caregivers to concentrate on their needs is imperative to their physical and emotional well-being. Respite services can be scheduled on a daily, weekly, or monthly basis or as often as the caregiver is able to arrange.
Adult Day Programs -
- Adult day programs are community-based programs designed to provide an alternative to in-home and residential care. These programs allow individuals to remain at home but provide supervision and activities during the day while a caregiver is working, running errands or taking a needed break. Adult day programs provide services to the elderly and the disabled, including individuals with dementia. Specifically, they may provide assistance with activities of daily living (including incontinence care), meals, medical services, transportation, and activities. Many programs have structured activities and services designed to meet the needs of individuals with dementia. Some programs also have extended hours of operation, which may accommodate a caregiver's work schedule. Licensure and certification of adult day programs varies by state.
Residential Care -
- Continuing Care Retirement Centers (CCRC's), often called multi-level care facilities or Life Care, offer lifetime housing that includes independent living, personal care, nursing services and dementia care. The availability of multiple levels of support can be particularly beneficial to couples since it enables both to stay in the same community even when one partner requires additional care or services. Another advantage is that a person's support system can remain uninterrupted as needs change.
CCRC's usually offer a variety of services at varying costs. Because of the many services and activities available, living in a Continuing Care Retirement Community can be costly. There is usually a substantial entrance fee plus monthly charges. These fees and eligibility criteria vary for each community. When considering a CCRC, having a clear understanding of one's long-term financial status and possible future care needs is imperative.
- Assisted Living Facilities offer care to those who need additional support with daily activities. They are not nursing homes. Instead, they are for those individuals who are no longer able to live independently but do not need the high level of medical care provided by a nursing home. Unlike the medical focus of a nursing home, assisted living facilities have a residential feel and provide individual apartments (some with small kitchens), private baths, phones and mailboxes. Assistance with personal care, meals, medication reminders and administration, housekeeping, activities and transportation may be available.
In addition, many assisted living facilities have specialized secured units for individuals with dementia. These units provide increased supervision and individualized care including assistance with personal care and toileting. The staff ratio to residents is usually higher than in an unsecured unit. There are usually special alarms on the doors, which will sound if the doors are opened without a code number. This is an added protection for those individuals who wander and are at risk for becoming lost. Activities are geared towards individuals with dementia. Staff in these secured units should have specialized training in order to provide safe and appropriate care to individuals with dementia. Licensure and certification of assisted living facilities varies by state.
- Adult Family Homes are private residential homes licensed to provide 24-hour care to people who are unable to live independently. These homes can also be referred to as board and care homes. Adult family homes focus on the care needs of adults with disabilities and the elderly who require daily assistance and supervision but do not require skilled nursing care. With adult family homes, there is usually a high staff to resident ratio. Adult family homes may not have wander guard systems or alarmed doors. Therefore, if an individual wanders or is at risk for wandering outside and getting lost, an adult family home without alarmed doors may not be the best option.
Adult family homes are licensed and inspected by the state. Licensing requirements vary from state to state. However, prior to receiving a license, an adult family home must meet certain safety regulations and the homeowner or resident manager must meet certain criteria regarding education and caregiving experience. To find out more information about a particular adult family home, contact your state's Licensing Division for adult family homes.
- Nursing Facilities, often referred to as nursing homes or long-term care facilities, usually provide all three levels of care. When entering a nursing facility, a thorough evaluation of an individual's physical, medical and emotional needs is completed. The level of care required is based upon the results of this evaluation.
Some nursing facilities also provide secured dementia units, much like the ones in assisted living facilities. These units should have alarmed doors, increased supervision and assistance and specialized activities geared towards individuals with dementia. Nursing facilities are regulated by the State and national standards of care.
Payment Options — Knowing that there are specialized care options for individuals with dementia is helpful. Since custodial care, by definition, does not need to be provided by a skilled professional, most insurance, including Medicare, will not pay for such care. This becomes quite a quandary for many individuals. For those with financial resources, they can pay privately for the type of care that is necessary. But what happens when the financial resources have been exhausted? How do those individuals without financial means obtain the necessary care? There are some options.
One option is long-term care insurance. Long-term care insurance policies are not standardized like Medicare supplement insurance. These policies can cover a wide continuum of care and must be purchased prior to the onset of a chronic illness.
There are a large variety of companies selling policies with multiple combinations of benefits and coverage. Therefore, when shopping for long-term care insurance policies, it is imperative that:
- You have thoroughly thought about the type of care that you may desire in the future
- It is fully understood what is being purchased and what the policy will and will not cover. For example, some policies will only cover nursing home care while others will cover home health care and assisted living care as well. In addition, some policies may often cover care for a specified amount of time (such as 3-5 years) and then the policy will expire.
Another option is seeking assistance from state insurance programs such as Medicaid. Many state insurance programs will cover custodial care in nursing facilities as well as some care in the home and adult family homes. Eligibility for these programs and what types of care they will cover varies between states. To determine eligibility guidelines and the type of care that is covered, contact your local social services office, Area Agency on Aging.
It is wise to speak with an elder law attorney or a financial planner to plan for the future and to determine which options are the most feasible. It is important to know and understand the financial situation so that resources can be managed and budgeted over an extended period of time.
How to Determine the Most Appropriate Care Options - The decision-making processes are often times left to the caregiver. The chosen options must meet the care needs of your loved one, but they must meet your needs as well. Although you want the individual that you are caring for to be as independent as possible, they must be safe and secure. You may want to ask yourself the following questions when faced with a decision:
- What type of services and assistance do you, the caregiver, need? What types of services will provide you with the most efficient, affordable and necessary assistance?
- What types of assistance and care does the individual you are caring for need? Some areas in which an individual may need assistance with are:
- assistance with financial management and banking needs
- health maintenance such as taking medications as prescribed
- meal preparation
- Do you have a clear understanding about the individual's physical, emotional and cognitive strengths and limitations?
- Do you understand the individual's preferences regarding the type of care they would like to receive?
- Are you able to respect their preferences even if they are in conflict with yours as long as the individual will remain safe and have their needs met?
- Do you have a good understanding of the individual's financial situation and the type of care and services they can reasonable afford?
- Is the individual involved as much as possible with the decision making process? Are all individuals that may be impacted by the decision involved in the process?
Conclusion - There are options to assist caregivers — you do not need to be overwhelmed, stressed and burnt out. It is imperative that you take notice of your needs. As a care provider, you have people that depend on you; if you become ill or unable to provide the necessary care, the individual you are caring for will be left in a tenuous position. Caregiving should be a rewarding experience comprised of cherished memories. It is often a final gift that you are offering to an individual in need, and should be provided with patience and kindness. When you are stressed, this is not possible. Seek assistance and investigate your options — there is help.