Chapter Ten

Nursing Homes:

Information & Resources

When Is It Time?

If you have not had this conversation with your loved one far in advance of needing to make this decision then deciding to place a loved one in a nursing home can be a traumatic and agonizing event. The answer to the question, “Is it time?” depends on many factors that vary enormously. Issues to consider include:

• The availability and affordability of in-home care and community services.

• The availability of alternative living/care arrangements.

• The physical and emotional condition of the caregiver and his or her capacity to continue providing care/supervision.

If at all possible, involve your loved one in the conversations about placement and the decision. Participation in the process can help give him or her a greater sense of control and reduce the trauma of the move.

If your loved one is able to make decisions, he or she has the right to decide about nursing home placement, even if you believe it is the wrong decision. These situations can be very difficult. Sometimes it may take an event such as a fall and a broken hip before your loved one decides nursing home placement is the right option. However, if you believe that your loved one is placing himself or herself in serious danger, consider consulting an elder law attorney for advice or talking with Adult Protective Services.

The answer to the “Is it time?” question will be different for everyone. As a family caregiver, you do the best you can and make the best decisions you can given the situation and the information you have.

The article, "Making Placement Decisions" from the Family Caregiver Alliance provides additional guidance on this subject.

The Pre-Admission Screening (PAS)

Indiana requires all persons that want to be admitted to a nursing facility to go through the pre-admission screening process. This screening can be performed in the home, hospital, or, in emergency situations, after arriving at the nursing facility. The Indiana Area Agencies on Aging case managers may administer this screen. Follow this link to an explanation of the entire process: Pre-admission screening process. (You should contact your local Area Agency on Aging if you do not live in central Indina - the CICOA Aging & In-Home Solutions (Area 8 AAA) service area.)

Click here to see a copy of the pre-admission screening form.

Smoothing the Transition to Nursing Home Care

Here are some suggestions for making the move into a nursing home go more smoothly:

• Talk with your loved one about the move.

• Take your loved one to the nursing home and, if possible, view the room where he or she will be living prior to the move. Try to do this several times if you can.

• Ask your loved one which items he or she would like to have in the room, such as family photos, a particular blanket or quilt, or other possessions that are beloved, comforting and familiar. Set up the room in advance so your loved one feels welcome.

• Do everything you can the day of the move to be there during the transition. Make an effort to be present at different times so that the nurses and nursing assistants get to know you and learn that you are an involved caregiver.

• Reassure your loved one that he or she is still loved and is not being abandoned.

Overview

Nursing homes provide medical care; nursing services, including 24-hour nursing care and supervision; medication administration; personal care (help with activities of daily living such as bathing, dressing, walking, going to the bathroom, etc.); social services; activities; three meals a day and a bedtime snack; laundry; housekeeping; and maintenance. In addition, they must also provide or arrange for therapies such as physical therapy, occupational therapy or speech therapy; mental health services; pharmacy services; dental services; and laboratory services. All nursing homes must provide these services.

In many nursing homes, a higher level of care—called “skilled care”—is also available. Skilled care is health care given when a person needs the involvement of skilled nursing staff (a licensed practical nurse or a registered nurse) or skilled rehabilitative staff (usually physical therapists, occupational therapists, or speech-language pathologists) to evaluate, observe, treat, and manage a condition. Skilled care is most often provided for a short period of time after a hospital stay for an illness or injury, and its intent is to “rehab” or rehabilitate the individual so he or she can return home or to a setting where less care is needed. Skilled care can be delivered in a separate part of a hospital, frequently referred to as a “transitional care unit” or “extended care unit," or in a nursing home.

In addition, some facilities offer an “Alzheimer’s unit” or “dementia care unit” (sometimes called “memory care”). The stated purpose of such units is to provide specialized care, usually in a locked, segregated environment, that is geared to the particular and unique needs of individuals with Alzheimer’s Disease or other types of dementia. (For information about these special units, contact the Greater Indiana Chapter of the Alzheimer’s Association at: 317-575-9620 or 1-800-272-3900, www.alz.org/indiana/.) Each facility that has such a unit must complete an Alzheimer's/Dementia Special Care Unit Disclosure form. If you are considering such a unit, ask the nursing home for a copy.

Hospice services (care for those who are terminally ill) also can be provided through an outside agency if the nursing home has a contract with one or more hospice providers.

Differences Between Assisted Living Residences & Nursing Homes

Regulation

Indiana nursing homes must meet a number of regulations covering all aspects of nursing home life—activities, food service, nursing, housekeeping, infection control, medication administration, and more.

To operate a nursing home in Indiana, a facility must follow state nursing home regulations and receive a license issued by the Indiana State Department of Health. To read the state regulations, click here.

In addition to being licensed, facilities can choose to receive funding from the federal government through Medicaid and/or Medicare. These homes are generally referred to as “certified.” To be certified, a nursing home must meet federal nursing home regulations. Each federal regulation (or “F-tag”) is accompanied by “interpretive guidelines.” These guidelines are designed to help surveyors (inspectors) better understand what they should be looking for in determining whether a nursing home is meeting a particular requirement. The guidelines can also educate you about what the facility should be doing and the type of questions you might ask regarding your loved one’s care. You can access the federal regulations with the interpretive guidelines here.

A Special Note about Staffing

Neither federal nor Indiana state regulations currently require minimum nurse/certified nursing assistant staffing in nursing homes. Instead, the regulations call for "sufficient staffing" to meet residents’ needs. However, there are standards that experts recommend which are supported by a major federal study.*

Staffing standards are for direct care nursing staff only and do not include nurses who are involved in administrative duties. Standards are referred to in terms of the average amount of nurse staffing time given to a resident per day—Hours Per Resident Day (HPRD), or as a ratio of staff to residents. The recommended standards are presented below in both formats.

It is critical to note that these standards are minimums only and must be adjusted upward for residents with higher nursing care needs.

*Source: The expert panel was convened at the John A. Hartford Institute for Gerontological Nursing in 1998. The study is titled, Appropriateness of Minimum Staffing Ratios in Nursing Homes:  Phase II Final Report, Centers for Medicare & Medicaid Services, December 2001.

Residents’ Rights

Indiana nursing home residents have a wide range of rights. These rights are given to residents under both state and federal regulations.

The rights of nursing home residents can be broken down into the following categories:

• Right to information.

• Right to privacy and confidentiality.

• Right to dignity.

• Right to participate in developing the care plan and making decisions about health care and treatment.

• Right to choices in daily life.

• Right to protection of funds and property.

• Right to voice grievances.

• Rights regarding transfers/discharges.

You can review a summary of residents’ rights on the Indiana State Department of Health website at: www.in.gov/isdh/21582.htm/.

Listing of Nursing Homes

Call CICOA’s Aging & Disability Resource Center at 317-254-3660 to request a copy of a Health Care Facilities in Central Indiana booklet. This booklet lists all nursing home and facilities in Marion and the seven surrounding counties.

You can access a listing of all Indiana nursing homes and assisted living centers and assisted living centers on the Indiana State Department of Health website at: http://www.in.gov/isdh/reports/QAMIS/ltcdir/wdirltc.htm.

Checklists and Guides for Choosing a Nursing Home

The National Consumer Voice for Quality Long Term Care publishes

A Consumer Guide to Choosing a Nursing Home

Medicare's Guide to Choosing a Nursing Home

Medicare's Nursing Home Checklist

Making the Nursing Home Choice

How to Select a Nursing Care Facility

Comparing Nursing Homes

There are several websites that you can use to compare nursing homes in Indiana.

Federal government websites

Nursing Home Compare

www.medicare.gov/NHCompare

The federal Centers for Medicare and Medicaid Services ( CMS ) offers a “Five-Star Rating System” for nursing homes. The purpose of the system is to help consumers compare and choose nursing homes by giving them a “snap shot” of the care each individual nursing home gives. Under the system, every nursing home that receives funding from Medicare and/or Medicaid is assigned a rating between one and five stars. Nursing homes with five stars are considered to be “much above average,” while one-star facilities are deemed “much below average.”

Each nursing home receives an overall star rating that is based on star ratings in three separate categories. These categories are:

1) Health Inspections. Nursing homes are surveyed (inspected) every 9 to 15 months and investigated when a complaint is filed. When the Department of Health determines that a home is out of compliance with federal regulations, a "deficiency" is cited. The results of surveys and investigations for the past three years are used to determine a facility’s health inspection rating.

 

2) Staffing Information. This rating includes information about the average number of hours of care given by nursing staff (registered nurses, licensed nurses and certified nursing assistants) to each resident each day. This rating considers differences in the level of care residents in different nursing homes need. The staffing data are submitted by the nursing home and are not verified in any way.

 

3) Quality Measures. This rating is based on ten different physical and clinical measures for nursing home residents, such as the percentage of residents with pressure ulcers, the percentage of residents with physical restraints, or the percentage of residents who have changes in their ability to move about. This information gives an indication of how well nursing homes care for their residents. This information is also submitted by the nursing home and not verified.

When calculating a nursing home’s overall rating, extra weight is given to the rating for staffing. To receive a 5-star rating, a nursing home must provide at least 4.08 hours of combined nurse and nursing assistant (including directors of nursing and other nurse supervisors) care per resident per day. This benchmark is based on a 2001 government study that identified 4.08 hours as the minimum staffing level required to avoid pressure ulcers, severe weight loss, infections, and other preventable harm to residents.

In addition to ratings, Nursing Home Compare provides data about the health inspections, staffing and quality measures. You can obtain:

• The general results of surveys for the past three years, as well as information about fire safety inspections.

• The nursing home’s quality measures in 19 areas and how the measures compare to state and national percentages (all information is reported by the nursing home).

• The number of hours of licensed nurse time and nursing assistant time per resident per day in the nursing home, and how the hours compare statewide and nationally (all information is reported by the nursing home).

General Caution: The data on this federal website can give you a very general feel for a nursing home and can help you rule out the “bottom tier” facilities. However, as indicated, it is important to note that much of the data are self-reported and not verified for accuracy. The data may also be very old. You should NOT select a facility based solely on this information. However, the data can give you a place to start and help you figure out some of the questions to ask a nursing home you are considering.

Special Focus Facilities

www.cms.hhs.gov/certificationandcomplianc/12_nhs.asp

Under "Downloads," click on "Special Focus Facility Background Info and List."

The federal Centers for Medicare and Medicaid Services maintains a list of poor-performing facilities that have a history of failing to meet federal care standards and that have not improved significantly even after being given a chance to do so. These nursing homes are called “Special Focus Facilities” because they are inspected by the Indiana Department of Health twice a year instead of only once, and the penalties against them are increased until they either improve or are terminated from Medicare and/or Medicaid.

The Indiana Department of Health chooses which nursing homes are designated as Special Focus Facilities from a list of the poorest performers in the state. You can learn which Indiana nursing homes are designated as Special Focus Facilities by going to the website listed above. The list is updated quarterly.

Note: This list is very short and includes only 3-4 nursing homes. You should not conclude that these homes are the only facilities with serious quality problems. Do your own research of a facility’s track record to determine its inspection results.

State government websites

Facility Profile Report

http://www.in.gov/isdh/reports/QAMIS/index.htm

The profile provides you with data that, for the most part, cannot be obtained on Nursing Home Compare. This website is updated monthly and contains information such as:

• the name and address of the owning corporation and the names of officers in the owning corporation

• how long the current administrator has been with the nursing home

• number and type of beds (for example, Medicaid beds, Medicare beds)

• enforcement actions against the nursing home

Nursing Home Report Card
http://www.in.gov/isdh/reports/QAMIS/rptcrd/rptcrd1.htm

The Indiana State Department of Health has created this “report card” to provide consumers with “scores” for each nursing home in Indiana that receives Medicaid and/or Medicare funding. Scores reflect the facility’s performance relative to a certain number of federal requirements that have been determined by ISDH to be indicative of quality care.

Individual scores for each of the last three years are shown, as well as an overall three-year score. Lower scores are better (but be cautious in comparing a score to the “statewide average” since those scores are inflated by high scores from particularly poor homes). Scores are based primarily on the facility’s annual surveys. It is important to note that the results of complaint investigations are not factored in except when they are particularly egregious. This also skews the score. Nevertheless, consumers can use these reports to compare a nursing home’s performance to itself over the previous three annual health surveys or to the performances of other nursing homes. Scores are recalculated on a monthly basis.

Other websites

In addition to the sites listed above, there are a number of organizations that provide data about nursing homes. The information on these sites, like that on the state and federal websites, is based on surveys and information reported by the facility itself. Examples of two websites are:

Member of the Family

memberofthefamily.net

Member of the Family’s website offers: a “National Watch List” of facilities recently cited for violations causing harm to residents or putting them at risk, an “Honor Roll” of nursing homes with no violations, overall results of quality measurements and staffing reports (note: the quality measure information may be quite dated) and a general summary of survey results for the past three years.

U.S. News & World Report
www.usnews.com/directories/nursing-homes/index_html//overallstars+5/state+IN/sort+overall/detail+more/page_number+1/page

U.S. News has built a database that takes the information from the federal government’s five-star rating system and allows you to identify all the five-star homes in Indiana (and other states), all the four star homes, all the three-star homes, etc. The information is updated quarterly. 

Costs and Payment

To get the latest general information on nursing home costs and who pays for care go to Chapter 5: The Costs of Long Term Care & Paying for Care. For specific information you should talk to the individual nursing facilities that interest you.

It is important for you to know that Medicare pays for very little nursing home or other long term care. Medicare will pay for nursing home care only under certain limited conditions. Go to Medicare.gov for a discussion on how to pay for nursing home care. You can find helpful contacts in Indiana click here. Contacting the SHIP program in Indiana will allow you to talk to someone locally: 1-800-452-4800 or click here to be directed to their website.

Getting Good Care For a Loved One

Go to Chapter 6: Getting Good Care for tips of how to get good care in any long term care setting. The tips are repeated here because they are crucial to getting good nursing facility care.

Share information about your loved one with staff.

The assessment is the process in which information is collected about the resident. Nursing home staff will obtain medical information about your loved one from the doctor and possibly the hospital, but the only source of personal information about your loved one is your loved one or you.

 

Encourage your loved one, if possible, to tell staff what choices he or she would prefer. For instance, if he or she needs help getting out of bed and dressing in the morning, what time should that help be provided? Ask staff what information they need to assist them in creating a good experience for your loved one.

 

You can use the worksheet, Getting To Know You, to present information to staff.

 

Participate in the development/revision of the care plan.

The care plan outlines the care, treatment and services that need to be given to each resident so that the resident can attain his or her highest level of well-being. Care plan conferences are generally held quarterly, but they can also be held upon request. Resident and family participation in care plan conferences is extremely important because it allows both you and your loved one to be directly involved in shaping and deciding about the resident’s care and treatment.

 

Visit

• As often as possible!

• Vary times, day of the week.

• Include evenings, weekends and meal times.

Visiting is extremely important because it:

• Helps to ensure better care for your loved one.

• Lets staff know that your loved one's care is being monitored.

• Brightens up your loved one’s day.

• Helps your loved one to continue to feel loved and connected to family and the community.

• Provides you with the opportunity to see for yourself how your loved one is doing.

Monitor the care.

• Observe your loved one.

• Talk with your loved one about the care.

• Ask how things are going.

  
  

  • Find out if your loved one feels that staff are treating him or her kindly and if your loved one is getting the care he or she needs.

  • Explore what improvements your loved one might like.

    
    

• Ask your loved one’s roommate and/or the roommate’s family for their observations if your loved one is not able to provide you with feedback.

• Talk with staff about how your loved one is doing.

• Share with staff any changes that you notice in your loved one’s behavior or any negative side effects from medications you observe.

• Review your loved one’s nursing home records (you must have the legal authority or the resident’s permission). Look for:

  
  

  • Information about your loved one's condition, progress, status.

  • Any problems you are not aware of and what is being done about the problems.

  • Whether your loved one is getting the care he or she is supposed to receive. (For instance, is the care plan being followed? Are doctor’s orders being followed?)

  • Whether you are being properly notified of changes and contacted when there is any significant decline in your loved one’s condition or a need to start/stop any treatment.

Develop a positive working relationship with staff.

• Learn staff names and get to know them.

• Treat staff with respect.

• Show appreciation for good work. Saying "thank you" means a lot!

Communicate effectively!!

• Find out who is in charge of what and the best way to contact administration/staff if you have questions or concerns.

• Ask questions when something is unclear.

• State what you mean clearly, politely, respectfully and in language that is free of blame and judgment. Speak up nicely, if something isn’t done, or if it isn’t done the right way. How you communicate is just as important as what you communicate.

• Reinforce positives. Thank staff when a problem has been addressed or when good care has been provided.

Keep a journal.

Make notes about:

• Your loved one’s condition and appearance.

• Any change in your loved one’s condition.

• Any incidents (e.g. falls) that are reported to you by staff.

• Any problems. Write down when the problem occurred, who was involved, what happened, where it happened, and what the staff said they would do about the problem (include staff names if you know them).

Join a family council.

A family council is a group of family members who work to improve the quality of care and quality of life at the nursing home. Families have the right to form and participate in a family council in nursing homes. Councils provide strength and safety in numbers. If there is no council at your loved one’s nursing home, start one! For information about family councils, go to The Family Council Center of National Consumer Voice website .

Take action when there is a problem!

The sooner you address a concern, the better—problems that go unaddressed can build up over time and can become more difficult to resolve. Don’t be afraid to ask questions or voice concerns if you feel your loved one’s needs are not being met.

Addressing Problems

Also see Chapter 12: Addressing Problems.

Listed below are some approaches that you or your loved one can take to address a nursing home problem (these steps do not have to be followed in this order).

If possible, check with your loved one to make sure he or she wants action to be taken. In addition, try to involve your loved one as much as possible in problem resolution.

Problem Solving Within the Nursing Home

Speak with nursing home staff.

Start by discussing the problem with the staff that are most directly involved to see if the problem can be corrected. If that is not successful, speak with a supervisor or the department head. If your concern has still not been addressed, request a special meeting with the nursing home administrator.

Document your conversations.

Go up the ladder.

You can obtain information about the owners and their addresses through the “Facility Profile” for the nursing facility on the Indiana State Department of Health website.

Raise the concern at the family council or to the president of the family council.

A family council is a group of family members who work to improve the quality of care and quality of life at the nursing home. To find out if your nursing home has a family council, ask the social worker.

 

If you are worried about retaliation, working with the family council is a particularly good approach to addressing a problem because it can provide “safety in numbers.” The problem can be raised without facility staff knowing who has voiced the concern.

Seeking Help Outside the Nursing Home

If one or a combination of the approaches listed above does not resolve the problem, there are organizations, agencies and programs you can turn to for help outside the nursing home (not listed in any particular order).

1. Contact the Indiana Long Term Care Ombudsman Program.

Long term care ombudsmen serve as advocates for nursing home residents. Ombudsmen work to ensure the health, safety, welfare and rights of residents by:

• Investigating/working to resolve complaints, concerns or problems voiced by residents, their representatives, or others.

• Providing information about residents’ rights and facility responsibilities.

• Working for improvements in the long term care system.

Ombudsman services are free and confidential. Each facility is covered by a long term care ombudsman. If you don’t know who your local ombudsman is or how to reach your local ombudsman, you can contact the state office.

Indiana Long Term Care Ombudsman Program

Division of Aging

402 West Washington Street

P.O. Box 7083 MS 21

Indianapolis, IN 46207-7083

317 232-7134 or 800-622-4484

www.in.gov/fssa/da/3474.htm

2. Consult a private geriatric care manager.

Care managers can help resolve problems. A private geriatric care manager is usually either a nurse or a social worker and brings knowledge and expertise to the problem. Geriatric care managers charge a fee for their services and most will also bill for out-of-pocket expenses (mileage, long-distance calls, etc.). To learn more about private geriatric care managers and get a list of geriatric care managers in Indiana, go to: National Association of Professional Geriatric Care Managers website.

3. File a complaint with the Indiana State Department of Health (ISDH).

The Indiana State Department of Health investigates complaints about care, treatment, rights, staffing, food and other conditions and services for which the nursing home is responsible. However, the Department of Health only investigates problems that relate to the state and federal regulations governing nursing homes. Their website is: www.in.gov/isdh/23260.htm/.

You can work for resolution of your problem throuth the ISDH in the following ways:

a. You can file a complaint directly with ISDH by:

• Phoning: 800-246-8909. You should follow up the call with a written letter that includes as much detail about the problem as you can provide.

• Emailing: complaints@isdh.in.gov

• Writing:

  Indiana State Department of Health
  Division of Long Term Care
  2 North Meridian Street, 4B
  Indianapolis, IN 46204

The Department of Health does not reveal the identity of the person filing the complaint. However, sometimes the nature of the problem is so specific that the nursing home may figure out who made the complaint. You can choose to file a complaint anonymously, but you obviously will not be notified of the results of the complaint investigation.

b. You can talk to the Indiana State Department of Health surveyors (inspectors).

The ISDH inspects nursing homes on a regular basis. It is part of their duty to listen to residents and their families about concerns. You will know they are in the building because signs will be posted. You can ask to speak to the surveyors in private and tell them about your concerns. Providing this information to the surveyors may result in a violation being cited that leads to the correction of the problem.

4. File a complaint with Health Care Excel.

Health Care Excel is the Medicare Quality Improvement Organization for Indiana. It works to improve the quality of health care in Indiana. As part of this job, Health Care Excel is required to review care if a complaint is filed by a Medicare beneficiary regarding a Medicare-certified nursing home. Health Care Excel will review your medical records to determine if your care met professional standards.

Since Health Care Excel contacts the nursing home to ask for your record, it is not possible to remain anonymous during this process.

Health Care Excel, Incorporated
2901 Ohio Boulevard, Suite 112
Terre Haute, IN 47803
800-288-1499

Resources For Complaint Resolution

Adult Protective Services (APS)

Adult Protective Services investigators investigate reports of abuse, neglect or exploitation of endangered adults 18 years or older. If you do not know the address of your local APS investigator, you can contact the state office.

Adult Protective Services

Division of Aging

402 West Washington Street

P.O. Box 7083 MS 21

Indianapolis, IN 46207-7083

317-232-0135 or 800-992-6978

www.in.gov/fssa/da/3479.htm

Medicaid Fraud Control Unit

The duties of the Medicaid Fraud Control Unit include investigation of abuse and neglect of residents of nursing homes and theft of residents’ personal funds.

Medicaid Fraud Control Unit

8005 Castleway Drive

Indianapolis, IN 46250

317-232-6520 or 800-382-1039
http://www.in.gov/attorneygeneral/2453.htm

Law Enforcement Agencies

Local law enforcement agencies are responsible for investigating crimes wherever they occur. Should you believe that your loved one has been the victim of a crime in the nursing home, contact a local law enforcement agency immediately.

Protection and Advocacy Services

The Protection and Advocacy Services agency works to address concerns about care, treatment and rights of residents who are developmentally disabled and/or mentally ill.

Protection and Advocacy Services

4701 N. Keystone Avenue

Suite 222

Indianapolis, IN 46205

317-722-5555 or 800-622-4845
www.in.gov/ipas

Licensing Boards

There are a variety of boards that license health professionals such as nursing home administrators, doctors, and nurses. These boards also investigate complaints filed against these health care professionals. To file a complaint you must submit a complaint form. To get a complaint form, call the number listed below, or go online: http://www.in.gov/attorneygeneral/2402.htm.

Submit a completed form to:

Consumer Protection Division

Office of the Indiana Attorney General

302 W. Washington St., 5th Floor

Indianapolis, IN 46204
317-232-6330 or 800-382-5516
http://www.in.gov/attorneygeneral/2336.htm

Legal Assistance

Elder Law Firms

Private attorneys often can help get a problem resolved or can assist you in seeking compensation and justice when your loved one has been harmed or neglected in a nursing home. It is important to get help from an attorney who is knowledgeable about nursing home laws and regulations and who is familiar with issues involving nursing home care. “Elder law” attorneys may be most helpful in this regard as they focus their practice on issues frequently confronted by the elderly and their families.

In Indiana, certain attorneys have been certified as specialists in Elder Law. To locate an elder law attorney in your area, go to The National Council of Elder Law Attorneys, Inc. by clicking here.

Indiana Legal Services, Inc.

Indiana Legal Services provides free assistance to those who meet certain financial criteria. For more information and to locate an office, go to: www.indianajustice.org/Home/PublicWeb/LegalSvcs/.

Additional Resources

Organizations

The National Consumer Voice for Quality Long-Term Care

http://www.theconsumervoice.org/

The National Consumer Voice for Quality Long Term Care website provides a wide range of resources for consumers, including fact sheets on assessment and care planning, the basics of individualized care, family involvement, and other topics related to nursing home care.   

United Senior Action Family Education & Empowerment Program, 317-634-0872
www.usaindiana.org

The Family Education and Empowerment Program provides family caregivers with information about options for care at home, in assisted living or in a nursing home; helps prepare families to deal with placement outside the home should the need arise; and equips families with the knowledge and tools they need to get quality care.

Agency for Health Care Research and Quality (AHRQ) Early Alzheimer's Disease Patient and Family Guide; Clinical Practice Guideline, Number 19, Consumer Version.