# Presentation: 724920

## Who are the Family Caregivers?

- Spouses
- Daughters
- Daughters-in-law
- Sons
- Siblings
- Grandchildren

**Notes:**
Slide 1 - Who are the Family Caregivers?
—Spouses - Many primary caregivers of persons with AD are their spouses, who naturally tend to be older persons. They may have their own health problems.
—Daughters - Perhaps the largest group of caregivers are adult daughters, mostly middle-aged women who are employed and married in addition to having caregiving responsibilities. Many of these women are involved in raising children too. Juggling these competing interests puts a great deal of stress on these women of the so-called “sandwich generation,” responsible for the care of the young and old alike.
—Daughters-in-law - Since women are traditionally responsible for caregiving in oursociety, many daughters-in-law get drawn into caring for their husband’s parent with AD.
—Sons - Sons may assume the role of primary caregiving but ordinarily get involved in carrying out gender specific responsibilities such as handling finances and other household tasks, while women tend to assume personal care tasks. Of course, these are stereotypes and there are many exceptions.
—Siblings - Siblings tend to be older people too, who often have their own set of frailties.  However, if they live in close proximity to the person with AD and are in good health, they may assume primary responsibility for caregiving.
—Grandchildren - Older children may assume primary responsibility or get involved as  “secondary” caregivers. Grandchildren who are adolescents or younger may suffer the effects of caregiving if their parents’ attention is diverted away from them, particularly if the person with AD lives in the extended family’s home.

## Major Stressors for Family Caregivers

- Ever increasing commitment of time
- Psychological losses
- Physical effort
- Financial cost of care
- Role changes & role strains; competing demands

**Notes:**
Slide 2 - Major Stressors of Family Caregivers
The following list of stressors reads like a job description of a primary caregiver. As AD symptoms worsen over time, the role of the caregiver must increase in a corresponding fashion. As a result, priorities must be rearranged to suit the growing needs of the person with the disease. Others involved in the lives of caregivers are invariably affected by these changes too.
—Time commitment - The Alzheimer’s Association conducted a survey that revealed that the average caregiver who lives with a relative with AD spends about 100 hours weekly providing care. Among family caregivers employed outside the home, an average of 40 hours weekly is spent providing care. Not surprisingly, half of caregivers reported not having enough time for themselves.
—Psychological losses - Among spouses whose loved one has the disease, there is the loss of the relationship as the couple once knew it. The profound changes in an intimate partner and companion Nancy Reagan referred to as a process of coming to terms with “the long goodbye.” Plans for the future are radically altered in light of the decline in the person with AD.
—Physical effort - Early in the disease there may be simply a need for reminders but hands-on care is usually needed as the disease worsens and the person with AD needs help with bathing, dressing and other personal care tasks.
 —Financial cost of care - The costs associated with caring for someone with AD vary, but this tends to be a very expensive disease. Home care costs include the costs of both paid and unpaid services on behalf of the person with AD. Nursing home costs average around $50,000 annually. In the Alzheimer’s Association survey, 50% of caregivers reported contributing their income or savings to pay for the care of their relative with AD.
—Role changes and role strains - Spouses must gradually accept the responsibilities formerly carried out by or shared with an impaired spouse. For adult children, one’s other priorities in life such as career and other relationships must be rearranged to take into account the growing needs of a parent with AD. There may be a host of competing demands on the caregiver’s time and energy.

## Negative Outcomes Associated with Caregiving

- Emotional distress (depression & anxiety)
- Fatigue and poor physical health
- Social isolation
- Family conflict

**Notes:**
Slide 3 - Negative Outcomes Associated with Caregiving
Numerous research studies have demonstrated that caregivers are at great risk of many ill effects. The lives of the caregiver and care-receiver are intertwined. When the quality of life for the caregiver is diminished, the person with AD is negatively affected. Conversely, if the caregiver’s quality of life is good, then the person with AD benefits. However, caregivers are known to suffer from many adverse effects such as: 
—Emotional distress - Depression and anxiety are well documented problems associated with caring for a relative with AD.
—Fatigue and poor physical health - Many physical health problems are also associated with caring for a relative with AD. According to the Alzheimer’s Association’s survey, 45% of caregivers reported not getting enough sleep. 
—Social isolation - Reports of relatives and friends who stop calling or visiting are common among caregivers. The risk of being cut off from others is real.
—Family conflict - Given the typical disparity in the division of labor with respect to caregiving, it is not surprising that conflict among members of one’s family is common. 

## Positive Outcomes Associated with Caregiving

- Sense of purpose or meaning
- Personal fulfillment
- Renewal of religious faith
-  Closer personal ties

**Notes:**
Slide 4 - Positive Outcomes Associated with Caregiving
Social research also demonstrates that caregivers are heterogeneous in that everyone responds in uniquely different ways to the stressors at hand. For some caregivers, there are positive effects of caregiving that include:
—Sense of purpose and meaning - a sense of mission or feeling called; transcendence
—Fulfillment of commitment - for example, loyalty in relation to one’s spouse or parent
—Renewal of religious faith
—Closer personal ties - existing and new relationships may be strengthened

## Mediators of Stress

- Appraisal of the situation
- Coping style
- Social support
- Financial and environmental resources

**Notes:**
Slide 5 - Mediators of Stress
How an individual caregiver deals with the stressors makes all the difference in the outcome. A number of variables appear to determine or influence how the stressors are handled. These include:
—Appraisal of the situation - personal meaning associated with this experience
—Coping style - active and passive strategies
—Social support - relatives, friends, co-workers, etc.
—Financial and environmental resources - money, time and space

## Key Challenges for Caregivers

- Recognizing that there is a medical problem
- Getting a diagnosis
- Enlisting help from others for the sake of respite
- Dealing with behavioral disturbances
- Considering nursing home placement or some other residential care option

**Notes:**
Slide 6 - Key Challenges for Caregivers
In the long course of the disease, caregivers face many decisions affecting the well-being of the person with AD. In light of the many challenges of caregiving, it is no wonder that family members often deny the presence or severity of AD symptoms. If they fail to recognize the seriousness of the situation, a crisis may occur before they initiate any action. Certain milestones are likely to evoke great upset in the life of a caregiver. Professionals can advise and assist family caregivers in the midst of these rather predictable crisis points. These include:
—Recognizing that there is a medical problem - attributing the troubling symptoms to a possible medical problem.
—Getting a diagnosis - having a physician rule out reversible causes of dementia and settling into the reality that this is a long-term and progressive disease.
—Enlisting help from others for the sake of respite - both informal and formal sources of help to supplement the primary caregiver’s efforts.
—Dealing with behavioral disturbances - as the disease advances there is an increasing risk of problems such as delusions, hallucinations and aggression; both pharmacologic and psychosocial approaches must be employed to deal successfully with these problems.
—Considering nursing home placement or some other residential care option - if care can no longer be rendered safely at home, then relocation to a residential care facility may be the only realistic option, but this is usually seen as a last resort by caregivers.

## Community Resources

- Support groups run by the Alzheimer’s Association: _[www.alz.org](http://www.alz.org/)_  (312) 335-8700 or 1-800-272-3900
- Alzheimer’s Disease Education and Referral (ADEAR) Center: 1-800-438-4380    www.alzheimers.org
- Eldercare Locator : 1-800-677-1116
- Religious & community organizations
- Home care agencies
- Adult day care centers
- Medicaid waiver programs for home-based care
- U.S. Dept. of Veterans Affairs

**Notes:**
Slide 7 - Community Resources
—Support groups and the Alzheimer’s AssociationThe Association is comprised of over 100 chapters throughout the United States with national headquarters in Chicago. The Association sponsors a vast network of support groups for family caregivers and also provides information, referral and other educational services. Some chapters also offer respite services. The Association promotes advocacy and research into the causes, treatment, and prevention of AD. To find out the location of your 1ocal chapter, call 1-800-272-3900 or check out the Association’s Web site at www.alz.org.
—Alzheimer’s Disease Education and Referral (ADEAR) CenterThis Center is a service of the National Institute on Aging and serves as a clearinghouse of information and publications about AD and related dementias. To obtain information about a wide variety of topics including diagnostic centers and clinical trials of new drugs, call 1-800-438-4380 or check out ADEAR’s Web site at www.alzheimers.org.
—Religious and community organizations A growing number of nonprofit organizations offer a range of services to family caregivers on a voluntary basis. Check out the churches and synagogues in your community or contact your local area agency on aging. 
—Eldercare LocatorThis centralized registry lists a variety of community-based services throughout the U.S. Call    1-800-677-1116 or visit the Web site at www.eldercare.gov.
—Home care agenciesMost home health agencies are licensed to provide skilled services that are reimbursed under Medicare. Many of these same agencies offer services that are paid for privately that otherwise are not reimbursed by Medicare. In addition, some agencies cater exclusively to fee-for-service clients. Ask the local area agency on aging or a local hospital’s discharge planning or social service department for further information about agencies in your area.
—Adult day servicesAdult day services refers to a community-based program that offers therapeutic activities and individualized services in a group setting for older adults with a variety of disabilities. Those attending adult day centers can enjoy a structured recreation program with activities designed to provide some meaning and purpose to each day under the direction of a professional staff. The full schedule of activities throughout the day includes nutritious meals and snacks. Some centers also provide transportation, medication management and assistance with personal care needs such as bathing. Persons with AD typically enjoy the opportunity to be with other people in a place where their needs and abilities are understood by trained staff. Adult day services also enable caregivers to receive some much needed respite. Information about local centers can be obtained from the Eldercare Locator or the state Department on Aging.
—Medicaid waiver programs The cost of services through a home care agency ranges from $10-20 per hour and adult day services cost $45-60 per day. Medicare does not cover these costs so most people have to pay out of their own pockets. Financial assistance for community-based services may be available for those with low incomes and assets through public sources such as the state Department on Aging.
—U.S. Department of Veterans AffairsMilitary veterans who meet certain financial eligibility criteria may also be entitled to certain home-based services. Contact your federal or state Department of Veterans Affairs for details.

## Abuse and Neglect Program

- States vary on voluntary/mandatory reporting
- Allegations of physical, sexual & emotional abuse, confinement, neglect, willful deprivation, financial exploitation
- “Self neglect” not included in some states
- Investigation time varies based on severity of allegation
- Interventions vary depending upon need

**Notes:**
Slide 8 - Abuse and Neglect Program
Persons with AD are sometimes at risk for abuse and neglect by their caregivers although the incidence of these problems is difficult to gauge. Victims often do not come to the attention of authorities. Moreover, perpetrators are usually family members on whom the older person is dependent for care. Most states in the U.S. have now established special agencies that aim to protect frail, vulnerable elderly persons from abuse and neglect in ways similar to child protective agencies. Each state devises its own system for reporting, investigating, and responding to allegations.
—States vary on voluntary/mandatory reporting In some states, reporting allegations of abuse and neglect of older persons is considered voluntary, and in others, certain professionals are mandated by law to report suspected abuse and neglect to designated authorities. In order to protect the reporting parties, confidentiality is supposed to be maintained.
—Allegations of physical, sexual and emotional abuse, confinement, neglect, willful deprivation, financial exploitationEach state defines abuse and neglect in specific terms. The above categories, for example, cover the range of allegations that are worthy of investigation in Illinois. The most common allegation reported is financial exploitation.
—“Self neglect” not included in some statesThe issue of “self neglect” is controversial due to its subjective nature. As a result, some states have elected not to address this problem in laws governing abuse and neglect. Mental health laws, however, may be invoked in instances when a person poses an imminent risk of danger to him/herself. Unfortunately, some persons with AD unwittingly neglect their basic needs to the point of presenting such a danger.
—Investigation time varies based on severity of allegationState agencies either investigate allegations on their own or contract with private social service agencies to handle investigations. Allegations of physical and sexual abuse receive priority status.
—InterventionsInterventions vary on a case-by-case basis. In some case, abuse may stem from caregivers feeling overwhelmed, and respite services may bring about a peaceful solution. In other cases, the older person may need guardianship and removal from a home shared with an abusive person.  Interventions are typically based on least restrictive alternatives so that community-based services are preferred over nursing home placement and the family unit is supported whenever possible. Other possible interventions include revocation of existing Powers of Attorney, Orders of Protection, referrals to mental health and law enforcement agencies, civil suits and emergency services such as housing and food. Seldom is criminal action taken against someone who has been abusive.

## Involuntary Mental Health Commitment

- If person is in imminent danger to self or others
- Psychiatric hospitalization deemed necessary by a qualified examiner
- Hearing scheduled within 3 working days
- Hearing with a mental health judge held at a state hospital

**Notes:**
Slide 9 - Involuntary Mental Health Commitment
Every state has laws designed to protect mentally ill persons from themselves or to protect others from the dangerous actions of mentally ill persons. There is usually a well prescribed legal process for forcing someone into a psychiatric hospital against their will for the purposes of examination and treatment. Certain medical and legal authorities are usually designated by law to take this drastic action. In essence, one’s civil rights are temporarily suspended until a formal hearing can be held within a specific time period to determine an appropriate disposition. Such laws may be useful in those rare occasions involving a person with AD who poses an imminent danger to him/herself or others. Hospitalization for a short time at least allows others to devise a plan of action aimed at reducing the risk of personal danger. 
—If person is an imminent danger to self or others - can be involuntarily placed in a psychiatric hospital, usually with the aid of local law enforcement.
—Psychiatric hospitalization deemed necessary by a qualified examiner - physician or other designated health care professionals.
—Hearing scheduled within 3 working days 
—Hearing with a mental health judge held at a state hospital - in order to determine further involuntary stay or release. 

## Guardianship/Conservatorship

- A prescribed legal process
- Appointment by court of someone or an agency to act in behalf of a disabled person
- Responsibility for the “Person” and/or “Estate”
- County or state guardianship as a last resort
- Alternatives should be established in advance

**Notes:**
Slide 10 - Guardianship
Guardianship or conservatorship involves the appointment by a court of a legally responsible individual or agency on behalf of a person who is not able to independently manage his or her affairs due to a disability (e.g., Alzheimer’s disease, Down Syndrome). Anyone attaining the age of 18 is considered an adult and is presumed to be handling the normal rights and responsibilities associated with adult status. Guardianship is a radical measure that essentially takes away a disabled person’s civil rights and places responsibility for the person’s welfare with an interested party. 
—Prescribed legal process
Guardianship involves a series of legal steps designed to ensure the rights of all parties. Each state has different laws governing this process but steps are usually similar to these followed in Illinois:
1. An interested party must file a petition in the probate court of the county in which the person resides.
2. A physician’s report must be prepared by a physician who is familiar with the person’s diagnosis and it must be based on an examination within 90 days of the date the petition is filed.
3. The petition is filed in the court, a hearing date is assigned, and a hearing must be held within 30 days.
4. During the 30 day period, a summons is served to the person informing of court action and legal rights.
5. A notice of motion is delivered or mailed to the immediate family members or next of kin informing them of the pending court action.
6. A guardian ad litem is also assigned by the court in most cases during the 30 day period to visit the person and report back to the court an independent opinion as to the need for guardianship.
7. A court hearing is held and a judge determines whether the person is indeed disabled; if deemed disabled, the judge appoints guardian(s) of the Estate, Person, or both.
8. The guardian(s) receive letters of office which can be used to let others know of the guardian’s authority to act in behalf of the disabled person.
—Appointment by court of someone or an agency to act in behalf of a disabled personA judge can appoint an interested party or a non-profit social agency (in some states) as the disabled person’s guardian. 
—Responsibility for the “Person” and/or “Estate”A guardian is designated to be responsible for one or both related aspects of the disabled person’s well-being. Guardianship of the Person involves responsibility for the day-to-day living situation and any health care decisions. Guardianship of the Estate pertains to all financial affairs. A judge may appoint the same person to carry out both functions but may divide these functions between two persons. In some cases, a judge may appoint a trust department of a bank to assume the latter role.  
—County or state guardianship as a last resortIf a disabled person has no relatives or friends willing or able to assume guardianship, each state has provisions for a state agency or a county agency to assume this role under certain conditions.
—Alternatives should be established in advance Quite clearly, guardianship is a cumbersome process. It is relatively simple to avoid the need for guardianship by completing Powers of Attorney in advance of disability. These include Power of Attorney for Health and Power of Attorney for Property. If these steps are not taken prior to the point of disability, then there may be no choice but to consider guardianship.

## The Basics of Medicare Part A

- Hospital coverage with deductible
- Skilled nursing facility for up to 120 days after hospitalization if skilled need exists
- Home health coverage if skilled need exists
- Hospice coverage if terminally ill

**Notes:**
Slide 11 - The Basics of Medicare Part A
A discussion of Medicare is necessary in order to highlight its very limited role in covering services to persons with AD. Some older persons and their families have mistaken notions about Medicare benefits in relation to chronic health problems like AD. Medicare is intended to mainly serve the acute health care needs of persons age 65 and older and disabled persons under age 65.
Custodial or unskilled services are not covered by Medicare.  For example, adult day services, homemaker services, and extended stays in nursing homes are not paid for by Medicare. Thus, individuals and families must bear the cost of these services. Medicare Part A mainly covers the following services:
—Hospital coverage with deductible
—Skilled nursing facility for up to 120 days after hospitalization if skilled need exists
—Home health coverage if skilled need exists (AD alone is not sufficient to services)
—Hospice coverage if terminally ill (applies to home care and nursing home care)

## The Basics of Medicare Part B

- 80% of customary costs for doctors’ fees, diagnostic tests, durable medical equipment and other outpatient services
- Annual deductible
- Monthly premiums
- Medicare+Choice (HMOs, PSOs & PPOs)

**Notes:**
Slide 12 - The Basics of Medicare Part B
Medicare Part B is partially paid by beneficiaries in the form of monthly premiums, usually deducted from Social Security checks. The main services under this part include:
—80% of customary costs - for doctors’ fees, diagnostic tests, durable medical equipment and other outpatient services.
—Annual deductible - The annual deductible for Part B has been $100 for many years but expected changes in Medicare are likely to result in markedly increased deductibles and monthly premiums unless beneficiaries choose less expensive options than the traditional fee-for-service option.
—Monthly premiums - Premiums are automatically deducted from monthly Social Security checks. The cost is likely to increase in coming years.
—Medicare+Choice - The U.S. Department of Health and Human Services administers an alternative program called “Medicare+Choice.” This program offers beneficiaries many options in addition to the traditional fee-for-service option or “original” Medicare. Health Maintenance Organizations (HMOs), Provider Service Organizations (PSOs), and Preferred Provider Organizations (PPOs) compete for the care of Medicare beneficiaries. Although Medicare+Choice was intended to slow the growth of Medicare expenditures, this program has not yet lived up to expectations due to lack of interest shown by beneficiaries and health care providers. 

## The Basics of Medicaid

- Healthcare coverage for the poor including medications & nursing home costs
- Qualified Medicare Beneficiary (QMB) program
- Spousal protections: primary home plus limited levels of liquid assets & monthly income
- Look back period of 36 months for transfer of assets

**Notes:**
Slide 13 - The Basics of Medicaid
—Healthcare coverage for the poor including medications and nursing home costsMedicaid is a joint federal and state program that assists in providing care to persons with low incomes and virtually no assets. When someone with private funds spends down their income and assets to very low amounts, Medicaid will pay for care in nursing homes that contract with each state’s designated Medicaid agency. Each state defines its own eligibility standards within rather broad parameters set by the federal government. Coverage includes the cost of nursing home care, medications and many other health care needs not ordinarily covered by Medicare. Medicaid pays for the majority of nursing home costs in the U.S. today.
—Qualified Medicare Beneficiary (QMB) programThis federal program administered by the states helps pay for all or some of the following for those persons who may not be poor enough to qualify for Medicaid: monthly premiums for Medicare Part B, Medicare deductibles, and other expenses that must be paid after Medicare pays its share of costs.  
—Spousal protections: home, assets, and income limits The federal government has standards that offer financial protection to the community-dwelling spouses of nursing home residents who must apply for Medicaid. Each state sets its own allowable level of income and asset protections within certain limits set by the federal government. In this way, a married person who has a spouse with AD in a nursing home cannot become impoverished by the cost of a spouse’s nursing home care. In Illinois, for example, where the maximum allowable protections are in place, a spouse can keep about $85,000 in liquid assets and a monthly income of about $2,000. In addition, the married couple’s primary residence and household furnishing are considered exempt assets. 
—Look back of 36 months for transfer of assetsIn establishing eligibility for Medicaid, most assets transferred 36 months prior to application are exempt. If assets are transferred within the 36 month “window,” then they are considered part of one’s assets and may negate eligibility since the allowable level of liquid assets is around $2,000.

## Types of Residential Care

- Foster care, board & care, group homes
- Retirement communities
- Assisted living facilities (ALFs)

**Notes:**
Slide 14 - Types of Residential Care
As our population ages, the number of housing options for older persons is growing.  Until recently, the only alternative for those who could no longer stay in their own home was to move in with a family member or to a nursing home. Originally designed like hospitals to care for the physically ill, traditional nursing homes have an institutional atmosphere. Such an atmosphere is often unappealing to residents and their families, and may be inappropriate for residents with dementia who benefit from a home-like environment.
The increased demand for something other than the traditional nursing home has given rise to some creative alternatives. Today, there are several types of group living options, each with unique features to meet the various needs of a growing population of older Americans.
—Foster care, board and care, group homes - In many states, these home-like options exist under varying levels of licensure and regulation. In most cases, there is no public reimbursement for care provided in such facilities, nor is medical care usually available on site.
—Retirement communities - These communities were built for healthy, independent older individuals. They usually offer studio, one or two bedroom apartments. Housekeeping and transportation services are often available. Most retirement communities have a common dining area and meal plan so those who want to can eat with others living in the complex. Leisure time activities are also organized for the residents. Fees are paid on a monthly basis and there are no entry fees.
Traditional retirement communities are free-standing entities with no additional levels of care. However, in recent years there has been a gradual shift toward accommodating residents of retirement communities who have mild disabilities. Although many retirement communities have added a nursing home wing or a separate health care facility, there are many that remain free- standing retirement communities without additional levels of care. 
Most retirement communities have adapted to the changing population by forming relationships with outside agencies that provide additional services such as personal care on a fee-for-service basis. Such agencies offer a range of services from a bath once a week to medication monitoring on a daily basis. These services are typically not included in the monthly fee and must be paid for privately. In other retirement communities, assisted living programs have also sprouted up that allow for certain services to be provided on site at a fixed monthly fee. 
—Assisted Living Facilities (ALFs) - Like retirement communities, Assisted Living Facilities (ALFs) offer private rooms or apartments and communal dining. In addition, they provide some personal assistance and 24-hour supervision. By establishing relationships with private agencies, ALFs provide additional services such as personal care to their residents. These services may include such things as medication monitoring or bathing assistance. 
Most states have not yet adopted regulations governing ALFs, but legislation is under consideration in many states. As a result, the definition of “assisted living” often differs from state to state, even facility to facility. For example, most retirement communities today indicate that assisted living “services” are available through payment of an extra fee to a home care agency on the premises. On the other hand, some retirement communities have opted to create sections within their facilities or on their campus that cater exclusively to persons needing assistance with medications and personal care tasks. Other facilities cater exclusively to persons in need of assisted living. The different meanings associated with the term “assisted living” have created confusion among consumers. Therefore, it is wise to “shop around” to ensure that appropriate services are available to match one’s particular needs.   
Persons in the early to middle stages of AD or a related dementia may benefit from living in ALFs. They are not designed to care for persons with advanced dementia, so transfer to a nursing home may be needed in the future. Both present and future care needs should be considered in making decisions about the best living arrangement. 
The care offered in ALFs is sometimes just as costly as nursing home care, but most aim to operate at a lower cost. Payment of assisted living is strictly on a private, out-of-pocket basis. At this time, states vary on using public funds to pay the costs of assisted living facilities.

## Types of Residential Care continued 

- Continuing care retirement communities(CCRC)
- Nursing homes
- Dementia Special Care Units (SCUs)

**Notes:**
Slide 14 - Types of Residential Care (continued)
—Continuing Care Retirement Communities (CCRCs) - Like assisted living facilities,  CCRCs offer more care than traditional retirement communities. They were established to provide care when needed, leaving the healthy residents to live as independently as possible while simultaneously providing nursing care to residents who require it. The level of care ranges from minimal to a skilled nursing facility and is provided on the same campus, allowing residents to remain a part of the community. The basic premise of Continuing Care is that older people in reasonably good health may first enjoy independent living in the retirement section while having the security of nursing care, if necessary, in an adjacent section of the same facility.
The retirement home section of a CCRC may be appropriate for persons in the early stage of dementia, while those requiring more assistance may need services available in other levels of care. Married couples in which one spouse has dementia may be well served in the retirement section for a long time into the disease as long as the well spouse can manage day-to-day needs of care. Although the retirement home section offers minimal services, additional services such as personal care can typically be purchased on a fee-for-service basis with an outside agency.  Some facilities require that all residents be relatively independent at the time of admission while others may accept those with different levels of need.
Most CCRCs require an entrance fee plus a set monthly fee with the guarantee that care will be provided indefinitely.  Such an arrangement offers lifetime security for a fixed cost. Other facilities base their fees on the level of care a resident requires; in other words, residents who need more health care will have a higher fee than those who require less care. Some facilities accept Medicaid when residents deplete their assets, while others accept private payment only.
—Nursing homes - There are about 1.8 million residents in over 18,000 nursing homes in the United States today. Also known as skilled nursing facilities or intermediate care facilities, nursing homes are government-licensed facilities that offer 24-hour care and supervision by registered nurses and certified nursing assistants. Although nursing homes offer rehabilitation services such as physical, occupational and speech therapy, most services are custodial in nature for the sake of most residents who have chronic conditions, notably dementia. The majority of nursing home residents are eligible for Medicaid to pay the cost of their care since they have already depleted their personal assets. Some nursing homes accept residents on a private payment basis only and do not accept Medicaid reimbursement.
—Dementia Special Care Units (SCUs) - Many nursing homes have designated areas or units exclusively for people with Alzheimer’s disease or related dementias. Special Care Units (SCUs) have become commonplace based on the idea that those residents with dementia require specialized care that has not been routinely available in nursing homes. Furthermore, those residents who are cognitively intact may not want to mix with those with dementia. On the other hand, it is estimated that 65% of nursing home residents have some form of dementia. Thus, a debate has grown over the effectiveness of this type of segregated care versus the traditional type of integrated care. There are no definitive studies which prove that either way of providing care to residents with dementia is superior. Nevertheless, the number of SCUs has grown significantly in the past decade.
The rationale for these SCUs has been to provide an environment which enhances individualized care and effective approaches to difficult behaviors often associated with dementia. Characteristics of SCUs may include specially selected, trained and supervised staff, specifically designed activities, family involvement, and a physical design that promotes mobility and enjoyment. SCUs are diverse in nature and there are no state regulations governing what constitutes an SCU.  There have been accusations that some SCUs are specialized in name only with little attempt to provide appropriate staff and services.
Although there are no regulatory policies covering SCUs in states except Texas and Iowa, concerns about quality led the Joint Commission on Accreditation of Healthcare Organizations to develop and implement a set of standards for SCUs. The Joint Commission is a private, not-for-profit organization dedicated to improving quality of care in a variety of healthcare settings. Since 1994, nursing homes have been able to voluntarily submit to a survey process for SCUs using specific standards in hopes of getting accredited by the Joint Commission. A small percentage of nursing homes have thus far sought accreditation.

## Easing the Transition from Home

- Gather facts: What to look for?
- Weigh the pros & cons with other people
- Visit places & compare
- Communicate with staff

**Notes:**
Slide 15 - Easing the Transition from Home
—Gather facts - what to look for - If someone with AD still appears to be a danger to self or neighbors after in-home services are in place, then relocation options must be considered. In order to accomplish this goal, it is important to document the incidents which have led you to this conclusion. Your subjective impressions are worth less than objective facts that cannot be disputed. You will probably need to involve relatives or friends of the person with AD who may not be aware of the seriousness of the situation. 
Your written observations chronicling the events leading to the decision to move the resident to a safer setting will bolster your case with others who may not have a grasp of the complete facts. Moving a relative with AD to a nursing home, for example, is a highly emotional decision. Relatives and friends often need time to work through an array of thoughts and feelings before they accept the need for this type of care. It is best to prepare them as soon as possible that such a change is likely based on a series of events that you have documented. Incidents worth recording include:
—Wandering outside and getting lost,
—Getting lost inside the building,
—Burning food on the stove resulting in excessive smoke or a fire,
—Paranoid delusions involving threats or violence against other residents,
—Mismanagement of funds,
—Self-neglect of nutritional, medical, and personal care needs.
—Weigh the pros and cons with others - Alternatives to the least restrictive setting should always be considered. The social supports and financial means of the person with AD and his or her family must be considered too. If relatives cannot offer a private home, then facilities should be suggested. Again, due to the emotional complexity of this decision, relatives and friends may need a great deal of time before acting on your recommendation. Sometimes family members will go to great lengths and risk the welfare of the person with AD in order to avoid making the difficult decision to place a loved one in a facility. If possible, involving the resident’s physician in the decision may be useful in moving the process forward. As a last resort, you may be able to employ legal means to force a decision. Terms of the housing contract typically allow for a unilateral decision by management to evict a resident under certain conditions that may apply here.
—Visit places and compare - Although the person with AD may see the benefits of relocation, it is more likely that relatives will take the lead in carrying out this decision. They may need direction about what to look for in an appropriate facility. Two Alzheimer’s Association’s publications may be helpful in this regard: Family Guide for Alzheimer Care in Residential Settings and Residential Care: A Guide for Choosing a Nursing Home. The Alzheimer’s Disease Education and Referral (ADEAR) Center also has some useful information on this topic; call 1-800-438-4380. 
—Communicate with staff - Relatives and friends often have difficulty adjusting to nursing home placement for a variety of reasons. Nursing home staff should help with the transition period. The importance of maintaining good communication with staff at all levels on all shifts cannot be emphasized enough. 

## A FRAMEWORK FOR ACTION 

- Description of the behavior
- Is there a problem? What is it?
- For whom?

**Notes:**
Slide 16 - A Framework for Action
The Framework for Action is a problem-solving model (see page 90). It is a means for assessing and understanding aspects of any problem due to AD. The challenge is to sort out the competing needs, issues, risks and benefits for the affected person and others who are involved either directly or indirectly. The fact that a person with AD becomes increasingly disabled over time necessitates continuous assessment and planning for the future. Major changes in living arrangements or social patterns do not necessarily have to be changed in the near term.
The Framework for Action starts with a broad description of the behavior. Then the questions “Is there a problem?” and “What is it?” are posed. If there is a problem, it is important to ascertain for whom is it a problem?  Is the behavior a problem for the individual with dementia, for the family, other residents living in the setting, or the management of the building? The different parties may have different and competing interests that are affected by problem. Once the issues and problems of the interested parties are sorted out, the next steps include: determining what action or plan need to be developed and who will implemented the action. Finally, attention must be given to monitoring the effectiveness of the plan and ongoing evaluation. 

## A FRAMEWORK FOR ACTIONcontinued 

- Action
- Organization/Facility             	  Staff,Family,Person with AD		  Other Residents
- Evaluation and monitor

- A FRAMEWORK FOR ACTION*continued *

**Notes:**
For instance, Mrs. Peterson has AD and is becoming less capable of preparing her meals. However, she lives in a retirement community where most meals are provided to residents. As a result, Mrs. Peterson may not have a problem related to nutrition. However, if she forgets to come to meals in the dining room, she definitely has a problem. On the other hand, if there is someone available to remind her about meals or if the community has a system in place that checks the attendance of residents at meals, then Mrs. Peterson may not really have a problem after all.
Mrs. Peterson may still enjoy preparing coffee and tea, but is occasionally leaving the stove on, resulting in pots boiling over. There have been several close calls with smoke in her apartment. On one occasion, Mrs. Peterson picked up a pot which was burning and sustained second degree burns on her hand. The questions here are: Is there a problem? and Whose problem is it? Mrs. Peterson clearly has a problem related to kitchen safety and now her neighbors in the building have a threat to their safety. Building management has a liability problem too. The Framework For Action may lead to a plan including turning off the stove in her apartment, assessing whether Mrs. Peterson can use a microwave for heating water, or encouraging her to come to the dining area for a cup of coffee or tea. After one or more steps are put in place, the final step will be an evaluation of the plan’s effectiveness.