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    Dementia Symptoms & Caregiver Strategies: Getting Help in the Home

    Physical and emotional demands, other family responsibilities, jobs, and more, eventually take a toll on even the strongest, most devoted caregivers. Don't wait until stress becomes extreme. Consider getting in-home support which provides a wide range of services in the home and can be of great assistance to caregivers. Rarely will someone provide the kind of care that the primary family caregiver can give a loved one, but many people can do some of the chores. To clarify the roles, think of yourself as the carer, the one who emotionally cares for the person who needs you, and the primary caregiver. Others who are hired can be considered helpers, filling assigned tasks.

    Deciding what help you need

    Before you look for an aide, know exactly what you need the person to do. Make a list of tasks and write a job description. Take a few days to jot down any chores that you could use help with as you go through your routine. Are you primarily interested in physical care, companionship, housekeeping or a combination of all three?

    In the job description, include rules such as no smoking, no cooking, no loud music, etc. Do you need the person to have a car to do errands, or can they use yours? Do you need someone to be on call or to work set hours?

    Review these guidelines with the person you care for. Is a male or female assistant preferred? What other preferences does the person have? Your loved one may be resistant to having "strangers" come in, but go ahead and look for helpers anyway. It may take some time to convince the person to allow others to provide personal care, but at a certain point the primary caregiver knows best what's needed in the home.

    Hiring caregivers

    Hiring aides directly

    Some families prefer to bypass agencies and hire a person on their own to assist with caregiving. Someone with little or no medical training can be hired for a lower rate, and can be trained in basic caregiving tasks such as lifting, bathing, maintaining equipment — essentially everything the primary caregiver has been doing.

    This type of aide can be a live-in assistant or someone who comes in a couple of afternoons a week to relieve the primary caregiver. California allows hiring and paying a family member as a caregiver.

    Pros and cons of hiring directly:

    • Pro: Caregivers can pay a lower rate to someone who doesn't come through an agency, especially a part-time high school or college student.
    • Pro: There's no need to deal with agency guidelines, regulations and applications.
    • Con: The person won't have been evaluated by an agency, making the primary caregiver responsible for checking out applicants' backgrounds and ensuring the person is honest and qualified.
    • Con: Some recordkeeping is involved, primarily hours and payment history. You also may be responsible for paying federal and state employment taxes if payment to the aide is over a certain dollar threshold.
    • Con: Health insurance may not cover the cost of an independently hired aide (although it may not cover agency help either).
    • Con: If there's only one helper, there's no agency to send a backup person when the helper is unavailable.
    • Con: If the helper is a family member or friend, there can be awkward consequences if things don't work out or problems arise.
    Finding an aide

    There are many ways to find potential assistants. Word-of-mouth is the best resource; ask your support group, church or synagogue, friends and neighbors.

    Other ways to locate applicants are:
    • Check with senior centers or independent living centers.
    • Place classified ads in local or college newspapers or their online equivalent. College students, high schoolers or Scouts may be able to fill a community service requirement by caregiving.
    • Put announcements on bulletin boards or newsletters at hospitals or social service organizations.
    • Ask at community college or university career centers or departments of nursing, physical therapy or social work. Students may be looking for part-time jobs or unpaid internships that offer experience.
    • Ask a social worker or other health care professionals for other resources in your area.
    • Call a community volunteer center.
    • Ask at privately owned drugstores and medical clinics.

    Agency help

    Home health care agencies provide trained people to assist with daily care in the home. The number of hours these aides work depends on the family's budget, insurance coverage and preferences — it can range from around-the-clock shifts to a few hours a week.

    Home health agencies usually are Medicare-certified, meaning they meet federal minimum requirements for patient care and management and therefore can provide Medicare- and Medicaid-covered home health services. These agencies provide skilled services (such as nursing care) and closely control what their employees may and may not do.

    Homemaker and home care aide agencies offer less skilled care, such as meal preparation, bathing, dressing and housekeeping. Personnel are assigned according to the needs and wishes of each client. Some states require these agencies to be licensed and meet minimum standards established by the state.

    Home care providers are listed in the Yellow Pages under "home care." AnArea Agency on Agingor United Way chapter also may have a list.

    Insurance policies and state Medicaid programs vary in the type of care they'll cover, so be sure to understand the policy's provisions. Some in-home assistance for low-income people over age 60 with disabilities may be covered under the Older Americans Act, with funds administered by the state.

    Pros and cons of agency help

    Home care aides are trained and experienced in the various chores required to care for a person who's seriously ill. The agency handles all hiring, firing, supervising, payment, taxes and paperwork, and is responsible for finding a person the family likes.

    But in-home care is expensive. Users pay a fee that covers the employee's wages plus agency expenses and profit. At the national average of $18 an hour (and higher in California), this can add up to $144 for an eight-hour day, or nearly $13,000 a month for round-the-clock care. The degree of insurance coverage may be a deciding factor in whether to use agency help and for how many hours.

    A hired caregiver should behave as if he or she is working for the family, not the agency — willing to learn about the family's preferences, and respectful of physical and emotional boundaries. The aide should be businesslike and competent but compassionate, willing to communicate with the person with cognitive impairment no matter how difficult, and aware of family members' personal space and emotions. If the aide is at all uncomfortable with performing any of the duties required, especially duties related to the personal care of the individual, don't be afraid to request another aide. Your responsibility is to make sure the aide's behavior gives your loved one a sense that his or her needs will be taken care of competently. This helps reduce the stress of having an outside caregiver in the home.

    Clarify all of these issues with the agency, and with the individual employee, at the beginning of the working relationship. Look at the first few weeks as a trial period; if someone doesn't show up on time, isn't a good fit or behaves offensively, call the agency and ask for another aide. A professional agency will comply without objection.

    Tips for using agency help

    • Be completely honest about needs. Agencies are familiar with almost every type of assistance required; embarrassment or concern that you're asking too much shouldn't interfere.
    • State preferences from the start. Be specific about hours, daily routines, and household rules such as "no smoking" and off-limits areas of the home. Don't assume the agency will know your exact wishes.
    • Make it clear who in the family is the authority or decision maker— the person with cognitive difficulties or the primary caregiver or both. If everyone in the family gives orders to the employee, the result can be confusion and failure to give proper care. Discuss disagreements among family members outside the employee's presence.
    • Give feedback to the employee or agency on a timely basis. If there's a problem, no matter how small, address it immediately to be sure the employee is clear on your wishes. If that doesn't work, call the agency — it's responsible for supervision.
    Bay Area In-home Care Agencies

    Here are a few in-home care agencies that you can choose from who service the Bay Area:
    You can also find great caregivers through sites such as As mentioned above, ask about prices and whether they charge for Case Management services, as those can add up fast. All of them will do a free initial needs assessment.

    Cognitive Impairment can have many causes. The patient’s doctor should be consulted to determine a specific diagnosis and treatment options. But whatever the cause, the symptoms are often alike, and the Caregiver Strategies are often similar.

    The information in the resources listed above was compiled by the Ray Dolby Brain Health Center through clinical experience and commonly available published materials. For information on additional Caregiver Strategies, go to: