NASW is pleased to announce the release of its new Standards for Social Work Practice with Family Caregivers of Older Adults. The NASW standards enhance social work practice with family caregivers and help the public understand how social workers support family caregivers.

The release of the standards coincides with National Family Caregivers Month and the launch of the U.S. Administration on Aging's Year of the Caregiver.

Social workers understand that family caregivers play an important role in supporting older adults. They also understand that family caregivers do not always get the recognition they deserve or the support they need.

Social workers meet and help family caregivers in many places:  

• Health care settings such as hospitals, clinics, and nursing homes
• Social service agencies for families and older adults
• Mental health settings
• Employee assistance and eldercare programs
• Agencies serving veterans and active military
• Housing programs and faith-based organizations  

Professional social workers have a bachelor's or master's degree in social work and complete many hours of supervised fieldwork as part of their education. Social workers follow a Code of Ethics and know how to work well with people of all cultures. Many social workers have years of experience working with family caregivers of older adults. Social workers provide many important services to family caregivers:  

• Educating caregivers about aging, health, and mental health
• Counseling to help families cope with the stresses of caregiving
• Coordinating care and services
• Linking caregivers with the resources they need
• Helping families plan for the future
• Leading support groups for family caregivers
• Working through conflicts and managing crises
• Advocating to help families reach their goals
• Communicating with other service providers and organizations
• Helping families find their way through transitions  

Social workers help family caregivers take care of themselves.    

• Click here to read the NASW Standards for Family Caregivers of Older Adults.
• Click here to find a social worker in your community with expertise in aging or other areas.
• Click here to learn more about caregiving and aging.
• Click here to find out how you can get involved in National Family Caregivers Month.
• Click here to learn about the Year of the Caregiver and the Administration on Aging.

Development of the NASW Standards for Social Work Practice with Family Caregivers of Older Adults is part of Professional Partners Supporting Family Caregivers, an initiative done in partnership with the AARP Foundation, the U.S. Administration on Aging, the Family Caregiver Alliance, and the National Association of Social Workers, and made possible by funding from the John A. Hartford Foundation

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Your heart, like all other muscles and tissues in your body,  has to be supplied with a continuous flow of blood, oxygen, and nutrients to stay alive. To accomplish this, your heart pumps blood to itself first—before sending it to any other part of your body—regardless of what's going on anywhere else. It nourishes itself through your coronary arteries, which branch off from your aorta immediately after it leaves your left ventricle. With every beat, your coronary arteries redirect blood back into your heart, wrapping themselves all around its surface like the branches of a tree and penetrating deep into your heart's muscle tissue to reach every cell.

By design, your heart is literally its own first priority. It has been since its very first beat and it will continue to be until its last. The paradox of caring for another is that you have to care for yourself first.

The Shadow Side  of Caring

The metaphor of the heart gets at the crux of the issues of caregiver burden and burnout. Depending on the extent to which you affirm and care for your own needs, caregiving can be a blessed experience or an ordeal. It can bring personal satisfaction and deepening intimacy, or depletion and erosion of intimacy.

Being the partner of someone with illness can bring challenges for which you might not be fully prepared—challenges to your knowledge about how to care, to your time and energy available for providing it, and to your emotional resiliency if your loved one's illness is long-term. Recent years have seen a great deal of attention paid to the health and adjustment of caregivers. The most extreme challenges are for people living with a partner with Alzheimer's disease, advanced cancers, or other conditions demanding intensive daily attention or vigilance over an extended time. But there are many more conditions that may appear  to be less obviously demanding, such as fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, multiple sclerosis, or others, which nevertheless can impact you in major ways.

Without adequate self-care, preparation, or support, the burden of adjustment for care partners can be considerable. One of the surprising findings of research is that their own distress may actually equal or even exceed that of the patient.   How can this be explained? Consider that one of the greatest sources of stress any person can experience is a lack of control—a sense of helplessness—in a difficult situation. Ironically, a seriously ill person may at least derive a sense of control from having concrete and practical steps to take, such as taking daily medication, having surgery, or other forms of medical intervention. All of this helps to channel one's efforts to get better and alleviate a sense of helplessness. The partner, on the other hand, may lack a comparable sense of concrete and practical steps into which to channel his or her energy. Partners who feel that they can only passively witness their loved one's suffering, and that there's nothing they can do to help reduce it or contribute to their loved one's healing, are at the greatest risk of emotional distress.

Studies have found that partner distress manifests as mood disturbance (depression, tension), poorer health, and even lower immune function. A particularly revealing recent study at the University of Florida looked at the long-term health of the partners of cancer survivors who had received stem-cell transplants. The procedure is quite traumatic for patients, and the recovery period is extended. Dr. Michelle Bishop and her team evaluated 177 couples an average of six and a half years after the procedure and compared them to 133 normal couples ("controls").

As you might expect, partners and survivors alike had more depressive symptoms, sleep problems, and sexual problems than the normal couples. Beyond that, however, the partners also had more fatigue and cognitive problems than the controls, and their odds of depression were nearly three and a half times higher Further, partners who were depressed were less likely than depressed survivors to receive mental health treatment, They also had less social support and lower ratings of marital satisfaction, less spiritual well-being, and more loneliness than either the survivors or the control couples. The researchers concluded that partners of stem-cell transplant patients experience similar emotional distress and greater long-term social costs than do the survivors themselves.

The point I want to emphasize here is to urge you to recognize the genuine vulnerabilities of being a caregiver and to honestly take stock of your true needs for support and self-care. As we will see below, attending to your own adjustment and well-being is a real and necessary contribution to the quality of your relationship as well as your loved one's healing.

How Your Well-Being Matters

What are the consequences of your own well-being for your partner? This is a very important question to consider, and the answer just might give you further incentive to seriously attend to your own needs.

Studies have demonstrated that there is a feedback loop between the two of you: caregiver distress can contribute to distress in the patient, which, in turn, may have adverse effects on the patient's well-being, adding further to the caregiver's stress. This has shown up in the work of Professor Laurel Northouse, PhD, RN, at the University of Michigan School of Nursing, She has found partners' emotional adjustment to be a significant predictor of how well women with breast disease adjust to their own condition.  In her research, women whose partners were coping better coped better themselves, while women whose partners were having a harder time showed signs of poorer adjustment to their disease. She also found that each person's level of distress seemed to predict the other's.

Aside from the partner's impact on the patient's psychological adjustment, another theme in the research is that in life-threatening illnesses, partner adjustment may influence the patient's actual survival. For example, when University of Arizona researchers looked at what impact the care partner's sense of confidence and self-efficacy might have on his or her spouse's surviving congestive heart failure, they found that it trumped that of the patient.  In other words, while confidence in both spouses contributed to survival, the partner's confidence actually had stronger impact. Patients lived longer if their partner had a stronger sense of self-efficacy.

How could partner self-efficacy translate into better survival for the patient? In their analysis of these findings, the researchers surmised that partner self-efficacy was a signal of  marital quality. In the introduction, I discussed the idea of intimate relationship in general having a "protective" effect that translates into better odds of patient survival. Indeed, such an effect is one of the great assets of a relationship, but now it appears to be modulated to some extent by the quality of the relationship. Since you and your partner are part of one system, if either of you runs into difficulties adjusting to the realities of the illness, those difficulties may affect the other as well as the overall quality of your relationship.

One of the ways that adjustment difficulties weaken marital quality is through conflict, and a large study has affirmed a connection between marital conflict and patient well-being. The Quebec Health Survey studied 7,547 couples living with one or more chronic health problems Patients who reported they had conflict with their partner had a more negative perception of their own mental health and reported higher psychological distress. This would seem to reinforce the idea of a loop between adjustment in either partner and patient distress, and as we know greater patient distress contributes to poorer medical outcomes.

Thus, beyond the general protective effects of being in a relationship, there is a continuum of relationship quality along which you as a couple can find yourselves, and where you are on this may even influence survival in life-threatening conditions. This principle was affirmed in a second study by the same team at the University of Arizona who conducted the earlier study on congestive heart failure. When they followed 189 couples for eight years, marital quality proved to be a significant predictor of patient mortality—to a larger extent than even individual patient factors such as psychological distress, hostility, neuroticism, self-efficacy,optimism, and emotional support.

My point in highlighting these studies is that as a care partner, your self-care clearly has consequences that extend beyond your own inner sense of well-being. Self-care is your path to resiliency, self-efficacy, and emotional well-being, all of which will affect your partner and the quality of the relationship between you.

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Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness

	The Changing Landscape of Cancer Treatment
	Treating Cancer With Pills
	What Is Adherence?
	Why Is Adherence to Cancer Medication So Important?
	The Challenge of Adherence
	Ways to Incorporate Medication-Taking Into a Busy Life
	Special Considerations for Older Adults With Cancer
	Ways to Improve Cancer Medication Adherence With Old Adults
	Resources

The Changing Landscape of Cancer Treatment

Most cancer treatment involves regular visits to an oncology office or hospital for intravenous, or IV, chemotherapy. But cancer treatment is changing and more and more, cancer treatment involves taking pills. Oral chemotherapy – taking pills to treat cancer – offers many benefits: fewer office visits; less time away from work and family and less interference with personal schedules. Patients welcome the absence of painful needle sticks that IV chemotherapy requires. But the advantages of oral chemotherapy are balanced – if not outweighed by – the responsibility for self-treatment of a serious disease.

Treating Cancer with Pills

When a person receives IV chemotherapy, the oncologist knows exactly how much medicine a person receives because the treatment is closely supervised by medical and nursing staff. But when treatment is done at home, the responsibility for adherence – ensuring that cancer medication is taken as prescribed – falls on individuals with cancer and their caregivers.

What Is Adherence?

Adherence means taking medications safely, timely, faithfully and accurately. It also means that:

• No doses are skipped
• No extra doses are taken
• No doses are taken in the wrong quantity, at the wrong time, or under the wrong conditions (e.g., with or without food)

Adherence is very important in cancer treatment. However, many adults have a poor track record with adherence. Recent research shows that more than 50 percent of Americans do not take prescription medicine as instructed. The numbers are even worse with cancer drugs – it's estimated that only 30 percent of people with cancer take their medication as prescribed. Non-adherence (not using medication as prescribed) is associated with more doctor visits, more hospital admissions, and longer hospital stays – all of which contribute to rising health care costs. The estimated cost to the U.S health care system of non-adherence to prescription medications is $100 billion – and rising.

Why Is Adherence to Cancer Medication So Important?

With any medication, non-adherence can have a serious impact on a person's health. But the stakes are often higher in cancer treatment. Not taking cancer medication as prescribed may mean that that drug won't work, since a certain amount of medication (referred to as a "therapeutic level") needs to be in the body in order for the drug to be effective. In many cases, cancer may return if a person takes the cancer medication occasionally, or stops taking it altogether. Non-adherence can also affect how the doctor views the patient's illness, and may result in unexpected changes to a patient's treatment.

The Challenge of Adherence

As simple as it sounds, adherence can be challenging. Many people have difficulty fitting medication-taking into a busy lifestyle, which may include work, family, and other obligations. Some people fear that cancer treatment will take away enjoyment and pleasure in life; others may feel burnout or "treatment fatigue" from long-term use of cancer medication.

Ways to Incorporate Medication-Taking Into a Busy Life

• Use weekly pill containers – These inexpensive tools allow you to organize your medications into daily doses, and are especially helpful if you are taking multiple medications or planning to travel.
• Explore electronic adherence tools – such as cell phone text reminders.
• Identify pill-taking cues – Consider taking your medication when you do other regular activities, such watching certain TV shows or brushing your teeth.
• Develop an action plan for unexpected and special events - such as weekends, vacations and celebrations.
• Ask your loved ones for help– Adherence is always easier when you have support from others.

• Understand how your cancer drug interacts with food and other medications you are taking – A pharmacist is an excellent resource if you have questions about food and medication interactions.
• Maintain regular phone or face-to-face contact with your health care provider. Cancer medication instructions are often complex. Talk to your health care provider if you have any questions about your treatment. And remember to report side effects, as these can also affect adherence to your medication.

Special Considerations for Older Adults with Cancer

Older adults face special challenges in maintaining good adherence. Having more than one illness at the same time (often referred to as "co-morbidity") is one such challenge. For older adults, having multiple conditions (such as cancer and heart disease or diabetes) increases the number of prescription medications, which makes adherence more difficult. Older adults are also at increased risk for dementia or other cognitive problems, and may forget to take their medications or become confused about medication instructions. They may also have arthritis or other functional difficulties, which may make it challenging to open pill bottles.

Ways to Improve Cancer Medication Adherence With Older Adults

Make sure to have clear instructions for all cancer drugs. A doctor or nurse should review the instructions in the office and also provide written instructions to take home. Be sure to ask questions if anything is unclear or confusing.

• Caregivers and loved ones should fully understand the medication instructions. Cancer medication instructions are often complicated, so it's helpful for caregivers and family members to understand the instructions as well, even if the person with cancer can take the medication without assistance.
• Have an updated, written list of medications in hand, when talking with health care professionals and caregivers.
• Ask the pharmacy to provide easy-to-open medication caps, pre-loaded medication dispensers and large print medication labels.
• Use a pharmacy that provides home delivery of medications, such as specialty pharmacies that ship overnight.

Resources

The National Transitions of Care Coalition (NTOCC) has some helpful tools to help you organize your medications. NTOCC has created My Medicine List for persons who take multiple medications or visit the doctor often, to help manage their medications and medical appointments. Visit www.ntocc.org/Portals/0/My_Medicine_List.pdf for more information.

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Bio:

Stacy Collins, MSW, is a Senior Practice Associate at NASW, specializing in adult and pediatric health care issues. Ms. Collins has over 20 years of experience in health care advocacy, education, and direct service with national and community-based organizations. As one of the NASW staff covering oncology, Ms. Collins developed a web education course for social workers on promoting adherence in oral chemotherapy, in conjunction with the National Coalition for Cancer Survivorship. Prior to joining the NASW staff, she was the project director for a federally –funded initiative to develop community engagement strategies for large-scale cancer clinical trials. Ms. Collins holds an MSW from the Catholic University of America and a BA from the University of Virginia.

Caregivers are often labeled as victims or sufferers when caring for a loved one. Caregiver are expected to always provide excellent care, to never ask for assistance, and to be a martyr regardless of emotions they are experiencing. High standards seem designed to create guilt, shame, and possibly a sense of failure if a caregiver does not appear to meet the expected criteria. Unfortunately, we often believe that caregivers should conform to a cookie cutter role. This one size fits all view of caregivers  ignores the individuality of caregivers, the individuality of those cared for, and how a caregiver's role changes as a loved ones' care needs change.

A caregiver's role can change in the moment or by day, as each day may be different. If, for example, the person being cared for suddenly needs community resources arises, then his caregiver’s role will change.  Generational differences may also contribute to the response of the caregiver during times of significant change.

It’is helpful to think of a caregiver’s role changes in the context of changing job titles. Roles can include, but are not limited to: 

• advocate
• banker/financial planner
• chef
• shopper 
• taxi

While this is not a comprehensive list, it helps to identify why job descriptions note "Other duties as assigned."

A caregiver adapts to role changes. For example, a gentleman caregiver who has never cooked, cleaned, or food shopped adapts to an unfamiliar role. Female caregivers may become financial managers when they may never have managed funds before. Role reversal is a common term used when a child becomes the parent. Reversals can be a challenge as the caregiver tries to meet their parents' needs and because the elderly parent may resent needing help.  A son may hire a home care aid to care for his mother and his mother may fire the aid or refuse to let the aid in her home. Or a loved one may independently make needed changes without being asked to do so.  An example of this is a person with dementia choosing to give up driving.

The most pressing concerns  for many of us who have a loved one who needs help are the "what if" questions. "What if mom falls in the middle of the night?" "What if dad needs more care then I can give him?" The "what ifs" begin as a loved one's physical or personal safety changes. During the "what ifs" stage services can include: 

• home delivered meals
• companion services
• home healthcare
• adult daycare
• senior apartments
• assisted living
• nursing home
• hospice

One or several in-home services can be used at the same time. Caregivers are not selfish when seeking services to meet the needs of their loved one and of themselves. Often caregivers neglect themselves while providing care. A caregiver can immediately say when their loved one last had medical care, but when asked the last time they had medical care, specialist care, or a dental appointment – often a long pause and a response of not remembering.

Professionals emphasize the need for self-care and mantras like "Before I can take care of others, I must take care of myself." Often a caregivers' worst fear is having something happen to him or herself so that they can’t care for their loved one. Taking care of oneself first assists with taking care of a loved one.

When considering the need of in-home care or services outside the home the emotional impact must be considered. It is difficult to ask for help. At some defining moment, in home assistance is needed. That moment differs for each of us. In cases of persons diagnosed with Alzheimer 's disease it may be when a loved one wanders or has behaviors. For a person with Multiple Sclerosis, physical changes in the body may require the need for homecare services such as bathing and dressing. A caregiver may develop his or her own health problem.

Caregivers have difficulty talking about assistance due to perceptions of being able to balance it all. Caregivers may experience a need to justify choices to family members, friends, and coworkers. The choices may bring forth feelings of denial, guilt, and even anger, in both the caregiver and those around them. Second guessing decisions are natural as there will be emotional ups and downs regarding if the right decision was made. Remember, caregivers are making decisions based on caring for themselves, the loved one, and what is best for both.

Grief or loss is often experienced as the need for assistance with care requires the need for in-home care. The loss of autonomy is experienced by both the caregiver and those cared for. Feelings of anger at self, the person needing care, and the illness/disease are part of the grief process. While the feelings are a normal reaction, caregivers may feel ashamed about negative thoughts or feelings towards the person in need of care.

A sense of violation to self, loved one, privacy and home is expected as services are provided in the home. These are emotions caregivers feel at some point during care. The frequency, intensity, duration, and type of emotion, although individualized, is not uncommon.

Services not mentioned previously can include in or out-of home respite. Respite can be used for caregivers to have time at home, recuperate from an illness, or attend special events. Costs vary by region and by payor source. Please contact local agencies to obtain respite information.

The services outlined in this article can vary in cost from private pay to Medicaid. Rates are based on the services needed. Private pay is straightforward as services are paid for out-of-pocket. Grants, although extremely rare, can be sought for a one-time service. Medicaid can also be used for services if eligibility requirements are met. Medicaid criteria vary by state, by type, and by for which community resources the coverage pays. Medicare covers hospital and short-term services such as short-term rehabilitation in a skilled nursing facility. Family and friends can be a source of emotional, physical and financial support.

Conclusion

This article discussed care giving through a variety of aspects including perception, role, levels of care, and financial resources. The role of a caregiver can be extremely rewarding to self and the person for whom care is being given. What is most important to remember is that caregivers recognize services available to them and the importance of self-care.

www.eldercare.gov – Department of Health and Human Services

• Search local service organizations 
• Search the Aging Network 
• Resources

Support Groups 

• Disease specific groups 
• Caregiver Groups 
• Local Area agencies can assist such as Offices for the Aging and Social Services 

• www.caregiver.com  - a source for caregivers including a magazine, newsletter, and resources 
• www.caregiver.org  - Family Caregiver Alliance: National Center on Caregiving 
• www.hhs.gov  - U.S. Department of Health and Human Services – choose a topic 
• www.aarp.org  - American Association of Retired Persons – can choose topics from legal, health, family etc.

	Introduction
	How Can Someone Help a Person Who May Be Struggling Aging?
	Questions to Ask When Hiring a Geriatric Care Manager

Introduction

Many times older relatives experience a slowing of some aspect of their lives – be it in the functional, or social, or mental realms. Perhaps they are having a hard time making it up the steps everyday, getting out of the house more than once a week, or being confused about the simple data facts of the day (such as date, day of the week).

Not knowing the resources for elderly persons can be worrisome. Development of a plan is not interfering, but rather proactive and necessary. Communicating concerns is vital to the health and welfare of elderly family members.

How Can Someone Help a Person Who May Be Struggling with Aging/?

A geriatric care manager  can be of great service. According to the National Institute on Aging, geriatric care managers are professionals who have multidisciplinary insight into key medical, functional and social issues important to the care of older individuals with complex medical and social problems. Just as one might go to a lawyer to draw up a will, or an accountant to prepare taxes, there are professionals who are skilled in the art of comprehensive assessment of seniors in their diversity of circumstances, have a broad knowledge of the range and variety of resources locally, are trained in counseling and crisis intervention skills, and are able to make all this information practical in action.

When seeking support from a geriatric care manager, find someone who belongs to the Association of Professional Geriatric Care Managers, as well as the National Association of Social Workers. Not all geriatric care managers are social workers, but as they are trained in support, resource development, advocacy and counseling, they are the ideal professionals to be providing geriatric care services. When looking for a geriatric care manager, find someone who knows the area in which the elderly person lives.

As the job of the geriatric care manager is not just to support the "senior", but to also give familial and friend support, meet with the care manager to discuss the next steps to take. A good geriatric care manager will make sure there is support, education, and advocacy. A good geriatric care manager will be available when needed, meaning they are schooled in crisis intervention. A good geriatric care manager will bring tools and strategies on how to deal with the situation. And a  good geriatric care manager is compassionate.

Be aware though that hiring a geriatric care manager can be expensive. Occasionally, a long term insurance plan may help pay for geriatric care services, but generally, payment will be out of pocket. Many times, however, only one or two sessions may be needed to resolve a situation.

Geriatric care managers can be especially helpful in situations where an aging loved one lives far away. They can be your eyes and ears, and most helpfully, they can be the planner when it comes time to either get help in the home, or when relocating a loved one to a facility where the he or she will receive more support.

The Association of Professional Geriatric Care Managers maintains a Web site where one can identify a geriatric care manager by zip code. Geriatric care managers are familiar with working with each other to accomplish tasks for their clients.

Questions to Ask When Hiring a Geriatric Care Manager

The Association of Professional Geriatric Care Managers recommends asking specific questions when hiring a geriatric care manager. 

1. What are your professional credentials? 
2. Are you licensed in your profession? 
3. Are you a member of the National Association of Professional Geriatric Care Managers? 
4. How long have you been providing care management services? 
5. Are you available for emergencies? 
6. Does your company also provide home care services? 
7. How do you communicate information to me? 
8. What are your fees? (These should be provided to the consumer/responsible party in writing prior to rendering services) 
9. Can you provide me with references?

Some geriatric care managers provide written information, make recommendations of books to read, or groups in which to get involved, and advise on agencies or companies that can give support. The key is the provision of comprehensive services. On all levels – physically, mentally, emotionally, and spiritually, utilizing a geriatric care manager can bring peace of mind to all parties concerned.

Sometimes, in order to have tranquility, attend to those practical matters in life. Allow a professional geriatric care manager to assist on that journey.

Related Articles:

• About Caregiving
• Caregiving Current Trends
• Caregiving: Your Options
• Caregiving: How Social Workers Help
• Caregiving Tip Sheets
• Resources on Caregiving
• Caregiving Real Life Stories

What Is a Case Manager? What Services Do Case Managers Provide?

Case managers help provide an array of services to help individuals and families cope with complicated situations in the most effective way possible, thereby achieving a better quality of life. They help people to identify their goals, needs, and resources. From that assessment, the case manager and the client—whether an individual or a family—together formulate a plan to meet those goals. The case manager helps clients to find resources and facilitates connection with services. Sometimes she or he advocates on behalf of a client to obtain needed services. The case manager also maintains communication with the client to evaluate whether the plan is effective in meeting the client's goals.

This sounds good, but I'm not sure about the term case manager. Do case managers really manage people? I don't want to lose control, and I'm not a case.

Excellent question. A good case manager will work with you to determine what is important to you and what you think would be the most effective way to reach those goals. Case managers don't manage people—they help people to manage complicated situations. Simply put, they help to keep you, or your loved ones, at the center of services being provided on your behalf.

Care management and care coordination are two other terms sometimes used to describe this work. Different organizations and individuals define these terms in different ways; for example, professionals providing services to older adults often call themselves geriatric care managers. (Click here to read an article about geriatric care managers.)  The terms case management and case manager are used in this article for the sake of simplicity, but the information also applies to care management and care coordination.

Where Do Case Managers Work?

Case managers work in a variety of specialties, including health care, mental health care, addictions, long-term care, aging, HIV/AIDS, disabilities, occupational services, child welfare, and immigrant/refugee services. They are employed in the public, nonprofit, and for-profit sectors.

What Kind of Training, Certification, or License Does a Case Manager Need?

Case managers come from a variety of professional backgrounds and disciplines—including social work, nursing, gerontology, to name a few. They need to understand how to both work with individuals and families and navigate complicated service systems. Social workers, who are trained to help people in the context of their unique social environments, are distinctly prepared to offer case management services. In fact, the social work profession grew out of early case management work in the early 20th century, and social workers have remained active in case management since that time.

Certification is available in case management and specialty areas of practice, such as gerontology. Knowing a case manager is certified can help you to feel confident that you are working with a skilled, well-trained professional. (Click here for information about NASW's certifications in case management and other specialties.) Some workplaces require certification, but others do not. Social work case managers should have either a bachelor's or a master's degree in social work. Depending on the state, they may also be required to have a social work license.

Who Should Consider Using Case Management Services?

People coping with complex situations—either their own or of someone close to them—such as physical illness, disabilities of any sort, the aging process, emotional or psychological challenges, family problems, addictive behavior, problems with school or work—may benefit from case management services. Seeking help is a sign of strength and may benefit both you and your loved ones.

Who Pays for Case Management Services?

It depends on your situation. Commercial health insurance, Medicare, Medicaid, or Tricare may pay for case management services delivered within some settings, such as hospitals, rehabilitation, or long-term care settings. In nonprofit or government agencies, case management services may be available on a sliding scale basis or even offered free of charge to eligible consumers. On the other hand, geriatric care management is generally not covered by public insurance or commercial health insurance. Some long-term care insurance policies may cover geriatric care management, and some nonprofits or public agencies may offer it on a sliding-scale basis; otherwise, it tends to be a private-pay service.

Again, this depends on your situation. If you are hospitalized or dealing with a system such as workers' compensation, you may be linked automatically with a case manager. Don't hesitate to ask if you are unsure. Otherwise, your health care provider, school, employee assistance program, or community service agency may be able to refer you. Local departments of aging and disabilities, health, and social services frequently offer case management services or may be able to refer you to case management agencies or professionals. You may also want to check with one of the professional organizations representing case managers. 

Licensed social workers who provide case management services are listed in the National Social Worker Finder. Search by specialty area, such as aging; then click on an individual provider from the listing and look for case management under theoretical approach.

Regardless of whether you personally select a case manager or are paired with one you did not choose, it is essential that you feel comfortable with her or his approach. Don't be afraid to assert your needs, perceptions, and goals. Case management should always involve, and directly benefit, you or your loved ones.

I’ve Been Hearing a Lot About Transitions of Care, But I’m Not Sure What That  Means—or Whether It Has Anything to Do with Case Management.

This is an important topic receiving increased attention in the media. A transition of care takes place when people move between care settings—such as when a person leaves the hospital and returns home or goes to a rehabilitation facility—or care providers (such as physicians and other members of the care team, or agencies involved with the same client or family). Care transitions also occur when a person's condition or situation changes. For example, a person with a serious physical or mental illness may have a relapse, or a child may leave a foster home and return to her or his family. Lack of coordination during care transitions is, unfortunately, quite frequent and can be disastrous for everyone involved. Failure to transfer important information and medication errors are two examples of common problems that occur during care transitions.

Case managers, and social workers in general, are integral to successful transitions of care. They help to facilitate communication among everyone involved, including you and your loved ones.

Recognizing the importance of care transitions, NASW has been actively involved in efforts to ensure better care transitions for people receiving health and behavioral health care. As a member of the National Transitions of Care Coalition (NTOCC), NASW is developing resources to educate other professionals, the public, and policymakers about this crucial issue. For more information, please visit www.ntocc.org

Related Articles:

• About Caregiving
• Caregiving Current Trends
• Caregiving: Your Options
• Caregiving: How Social Workers Help
• Caregiving Tip Sheets
• Resources on Caregiving
• Caregiving Real Life Stories

	What Is a Social Adult Day Program?
	How Does a Social Model Differ from a Medical Model?
	Factors to Consider and Questions to Ask
	Final Considerations

What Is a Social Adult Day Program?

A social adult day program provides structure, support and stimulation to older adults living in the community, as well as a break for their caregivers. Social adult day programs, when coordinated with additional supportive services, often enable older adults to remain in their homes for as long as possible.

How Does a Social Model Differ from a Medical Model?

In a social model, medical services are not provided, and there are no medical personnel on-site. In the event of an emergency, social programs call 911. Social programs cannot administer medication but can cue a client to take medication independently. Medical models are more appropriate for clients who require medical attention throughout the day, for example, a diabetic client who needs an insulin shot every few hours.

Factors to Consider and Questions to Ask when Selecting a Program:

• Population:  What is the composition of the group? Some programs are designed strictly for people who have been diagnosed with dementia; other programs serve people who are physically frail but cognitively intact, while others serve a mixture of the two. Even groups with the same client of people may serve participants in varying stages of a certain condition.

  Ask the program staff for population specifics prior to your first visit so you know what to expect. You may also be interested in the program’s clients by gender, ethnic and economic diversity, and languages spoken.

  You definitely want to know how many people the program accommodates per day. Programs vary in size. There are benefits to both smaller and larger groups, but ultimately it is a matter of personal preference. 

• Schedule:  What time does the program start and end? The length of a day program often replicates that of a typical work day, and for many participants, this schedule elicits familiar feelings of productivity. Ask if there are there a minimum number of hours a participant must stay or a minimum number of days a participant must commit to. Generally, programs are open during the week, but some programs may be open or may offer special trips on weekends. 
• Affiliation: Is the program affiliated with a larger organization?  For example, is it affiliated with a hospital, settlement house, or senior center? What additional services are provided by the overarching entity? Some organizations serve as "one-stop shopping centers," offering services such as case management, caregiver support, legal assistance, and/or home care. 
• Funding:  Who funds the program? A program that is publicly funded (even partially) must comply with standards set forth by the governing body (usually state or city) issuing the funds. Privately funded programs must comply with standards set forth by the funding foundation; however, these standards vary from foundation to foundation. 
• Environment:  Where is the program held? Factors that facilitate an optimal environment include ample natural light, a separate room specifically devoted to the program, sufficient space between participants, supportive chairs with arms, minimal audible distractions, and a home-like rather than institutional feel. Programs specifically designed for people with dementia should have a locked door to inhibit wandering.
• Programming:  Programming distinguishes the exceptional from the mediocre group. Get a copy of the schedule and ask questions about anything that may be unclear. The program's goal is to provide social stimulation and to reduce social isolation. You want to find out how this goal is actualized. Schedules range from highly structured to extremely flexible. You want a program that best suits a participant's needs and temperament. Ideally, each day should blend physical, cognitive and social activities.

  Additionally, you want the majority of activities to require active rather than passive participation. Active programming facilitates interaction between participants. Examples include low-impact exercise, expressive therapies (i.e. art, music, drama, or animal-assisted), and cognitive challenges. An example of a passive activity is watching a movie.

  Programming should focus on capabilities rather than deficits, and all activities should be failure-free. In a good program, participants will find new opportunities for creativity and will develop alternative standards of productivity. Perhaps most importantly, day programs can provide participants with a renewed sense of purpose and belonging during later life.

• Staff:  How many full-time, part-time, and per diem staff members are there? What educational and professional training does the staff have? What is the ratio of staff to clients? Does the program utilize volunteers or students, and if so, in what capacity? You should meet as many staff members as possible to ensure you are comfortable with the program's leadership.
• Personal Care:  What personal care needs does the program address? Personal care refers to assistance with one or more of the following: eating, toileting, transferring out of a wheelchair, and walking. If the prospective participant requires additional assistance, inform the staff and inquire if they are able to meet the specific need.
• Home Attendants:  Some programs welcome privately-employed home attendants to sit, and in some cases, participate in activities. Other programs do not allow home attendants to be present.
• Fees:  How much does the program cost per day and what is included in that cost (i.e.: meals, transportation, trips, etc.)? Are there subsidies available for clients demonstrating financial need? How and when will you be billed? Some private long-term care policies will reimburse you for the fees; find out if social adult day programs are covered under your policy.
• Transportation:  Is transportation offered to and from the program? Is the vehicle wheel-chair accessible? Does the driver have a Commercial Driver's License (CDL)? In addition to the driver, is there a bus monitor/escort to assist clients with boarding and disembarking the bus? When and where is the client picked up, and how long is the bus ride?

Final Considerations

Day programs provide critical assistance to both consumers and caregivers, but remember that not all programs are created equally. Visit several so you can compare and contrast, and make an educated decision. Don't hesitate to ask questions and to raise any concerns. Ask if a caregiver can accompany and remain with a participant if he or she appears extremely anxious in the beginning.

Keep in mind that the length of time needed to acclimate to the group setting varies from person to person. Some people may never have been comfortable in groups so this may be a completely unfamiliar experience. Others may have always been at ease in groups but may have become withdrawn due to current physical or cognitive difficulties.

You may need to visit a program a few times before you can determine if it is a good fit. If, after numerous attempts, a day model does not seem appropriate at this point, don't lose hope. Keep the program's contact information because you can always try again later.

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• About Caregiving
• Caregiving Current Trends
• Caregiving: Your Options
• Caregiving: How Social Workers Help
• Caregiving Tip Sheets
• Resources on Caregiving
• Caregiving Real Life Stories

Introduction

Who will care for us when we are elderly and frail? This is something most of us in the working world don't want to consider. We are currently busy doing our jobs, being involved in family activities, and possibly worrying about paying for college, retirement or both. But, what about our own long-term care needs?

Long Term Care (LTC) Insurance now exists privately and through many employers and can help pay all or part of our long-term care needs. Long-term care itself can be quite expensive. The cost depends on the amount and type of care you need and the location in which the care is provided. The average cost of nursing home care is now more than $60,000/year, and in-home care costs about $12 – $20/hour. Long Term Care Insurance is a program which can pay for many of the costs associated with assisted living, nursing home or in-home care once the physical or cognitive care needs exist. If we look at who currently pays for LTC, we see that Medicare and supplemental health insurance only pay for about 5% of care while private funds are used to pay for about 33% of the Long Term Care needs. The state Medicaid program pays about 50% of the costs for nursing home care statewide but is only available after all of an individual's private funds have been exhausted.

Who Needs Long Term Care Insurance?

You should NOT buy Long Term Care insurance if: 

• You can't afford the annual premiums 
• You can’t afford the annual premiums
• You have limited assets 
• Your only source of retirement income is through Social Security 
• You have trouble paying for food, utilities, medicine or other important needs

You should CONSIDER buying Long Term Care insurance if: 

• You have significant assets and income 
• You want to protect some of your assets and income 
• You want to pay for your own care 
• You want to stay independent of the support of others

What to Look For in a LTC Insurance Policy?

• The policy should offer you several Daily or Monthly Benefit Amounts from which to choose for Long Term Care – policies usually have you select the daily limit ranging from about $50 – $250/day. 
• It should include in-home care, other community based care and assisted living, not just nursing home care. 
• Evaluate the Benefit Triggers such as needing assistance with two out of six Activities of Daily Living (ADL) rather than needing assist in three or more Activitie of Daily Living.
• It should include care for cognitive impairment.
• Inflation protection, depending on the age at which you buy into the policy, can be important.
• Evaluate the length of the Elimination Period before benefits can start to see if it matches well enough with your supplemental health insurance and/or income/assets. Most policies offer 30, 60 or 90 day elimination periods during which you are responsible for the cost of your care.
• Is the parent company for the policy a solid, long standing and financially solvent insurance company?

When Should You Buy Into a Long Term Care Insurance Policy?

LTC insurance programs do screen for health concerns and individuals with significant pre-existing health issues may not be eligible for this insurance. It is wise to buy insurance while you are still healthy. The annual premiums are also lower when you are younger. Someone in their 40's should start considering the various polices as part of the financial planning process and most people should buy into a policy by age 55. The upper limit that the insurers will accept is usually around 75-80 years old.

How Do I Find Out More About LTC Insurance?

• The Virginia State Corporation Commission puts out a document called "Facts About LTC Insurance in Virginia" available through their office at (877) 310-6560 or on-line at www.vda.virginia.gov/ltcfacts.pdf
• Our local Jefferson Area Board on Aging has an insurance specialist on staff. Sally Mank with VICAP can be reached by calling at (434) 817-5222x 248. 
• www.aetna.com/group/commonwealthva/ provides information on the Aetna policy offered through UVA, or call 877-894-2470.

Always review policies carefully and compare several before deciding on one.

Introduction

According to the National Health Interview Survey (2000-2005), slightly over one-third of all adults in the United States have a condition that is "activity limiting". Between 2000 and 2050, the number of older people is projected to increase by 135 percent. Moreover, the population aged 85 and over, which is the group most likely to need health and long-term care services, is projected to increase by 350 percent. Of particular importance will be the shift from acute to chronic illnesses such as Alzheimer's Disease, heart disease, and osteoporosis, rather than acute illnesses.*

With chronic illness often comes disability, meaning that long-term care services, such and nursing homes, home health, personal care, adult day care, and congregate housing, will become much more important sources of care. As people age, it is highly likely that many, if not most, will be "disabled" in some way as their ability to engage in medical, physical, or mental activities diminishes.

"Disability" is defined in the federal Social Security Disability Act as the "inability to engage in substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or is expected to last for a continuous period of not less than 12 months.” It is likely, then, that caregivers and professionals providing care and services for an aging adult — whether a love one, client, patient, or consumer — will encounter someone who will be "differently-abled."

A turning point for older Americans and people with a disability happened in the 1960s. Before then, people with disabilities were not even considered by policy makers. With the social justice movements of the sixties, consumers, advocates, and service professionals began to focus on service delivery for people with disabilities.

Independent Living Centers

Against this backdrop, Independent Living Centers came into being. Independent living has to do with self-determination for people with disabilities with the right and opportunity to pursue a course of action with the freedom to fail and to have the opportunity to be as self-sufficient as possible.

Forty years after the first Centers opened, Independent Living Centers remain an overlooked source of information, referrals, independent living skills training, peer counseling, and advocacy for people with disabilities (and their families and caregivers).

Independent Living Centers are typically non-residential, private, non-profit, consumer-controlled, community-based organizations that serve and advocate for people with all types of disabilities. The goal is to assist individuals with disabilities to achieve their maximum potential within their families and communities.

In the United States, there are nearly 500 Independent Living Centers and there are others in Canada, Europe and Africa. In the United States many are state supported.

The Older Americans Act and the Americans With Disabilities Act

The passing of two laws has improved the situation for older Americans with disabilities. But, not enough. The 1965 Older Americans Act (OAA) coupled with the 1990 Americans with Disabilities Act (ADA) have improved circumstances for many seniors with disabilities, but the landscape — fourteen years after ADA and forty years after the Older Americans Act – is far from idyllic.

The framework for the ADA was based on several findings, among these, "Some 43,000,000 Americans have one or more physical or mental disabilities, and this number is increasing as the population as a whole is growing older."

Other findings contained in the ADA have striking and parallel relevance for older people: "People with disabilities, as a group, occupy an inferior status in our society as do older people." Also, cited: "People with disabilities are a discrete and insular community who have been faced with restrictions, limitations, and unequal treatment." Clearly any older adult with a disability faces at the very least, a double whammy.

Professional Geriatric Care Managers

As our population ages and falls prey to chronic diseases which cause disability and loss of daily function, there will be fewer family members (mostly children) to care for them. Families are now frequently spread out across the county, thus creating an issue when it comes to caring for an elderly parent. Often, the children work full time or have families of their own and are unable to commit to caring for an elderly, needy parent. In addition, family members may become overwhelmed with the responsibilities of caring for an elder or may not know what resources are available to assist the parent. Due to these issues, people are frequently turning to the "Professional Geriatric Care Manager" to oversee the care of the elderly person.

Professional Geriatric Care Managers (PGCMs) are health and human services specialists who help families care for older relatives, while encouraging as much independence as possible. The PGCM may be trained in any of a number of fields related to long-term care, including, but not limited to, nursing, gerontology, social work, or psychology, with a specialized focus on issues related to aging and elder care. The PGCM acts as a guide and advocate — identifying problems and offering solutions.

Dr. Jackson-Brown’s Story

From 1992 to 2003, I was the sole family caregiver for my father who had complex care needs as a result of prostate cancer. I was faced with a range of challenges in an unfriendly and largely unresponsive world. Professionals from traditional disciplines where ill-prepared to recommend other than conventional approaches to care which, for me, were unacceptable.

It was the early 90s when I learned about Geriatric Care Management from a local newspaper article. Fortunately, one of the first Geriatric Care Managers in the county practiced in my area. It was solely from her guidance, coaching, and support that gave me the foundation to successfully navigate the turbulent waters of his care.

My father was older than the parents of my peers as my parents had me late in life for that time. He lived throughout these years as a paraplegic as a result of the cancer. In the last five years of his life, he, at first, was an above-the-knee amputee and then later became a double above-the-knee amputee.

I was faced with a range of challenges in an unfriendly and largely unresponsive world. As a result, I borrowed resources and support from a variety of communities, including the spinal cord injury community. Also, helpful was the peer counseling and caregiver support that was available through the local Independent Living Center which gave both me and him the courage and support for him to live independently and to "age-in-place".

Mentioned earlier, with the support and guidance of a Geriatric Care Manager – which at that time was a little-known specialty – and my own capacity to problem-solve and leverage resources, my father and I modeled a living and care arrangement that was unusual and creative. However, the journey was circuitous and back-and-forth — from hospital to rehabilitation hospital to nursing home to my home to his home.

This cycle repeated itself many times, until finally, some stability was achieved and he lived in his own residence for the last six years of his life.

Tips for Success

Now, as a Geriatric Care Manager and Certified Senior Advisor, there are many lessons that I learned from caregiving and managing the care of an older adult with a disability. While the lessons (and my examples) correspond to a person with a physical disability, several are applicable for other disabilities as well:

1. Be a relentless advocate. The law is on your side. I recall having to obtain a special dispensation to have a Para transit bus extend its pick-up point by only 50 yards so that my father could board. After struggling for months, I prevailed after many letters and phone calls.

2. Get into a support group and link-up with a network. The spinal cord injury community introduced me to individuals with spinal cord injury who, in turn gave me detailed information – not generally available at that time – for managing bowel and urinary incontinence. Plus, they gave me "permission" to be angry with my father when he was irresponsible in managing his own care.

3. Seek out care from a rehabilitation hospital. Too often, people are discharged to a sub-acute facility for rehab when in fact they would be better served at a rehabilitation hospital. Be aware of the difference.

4. Insist that durable medical equipment – such as scooters, canes, walkers, wheelchairs, seats, beds, etc., assistive technology and devices be appropriate to the person's needs. Be sure that any "aid" is fitted to the individual's capability, height, weight, and use. Avoid using "one-size- fits-all equipment.

5. Insist on an assessment and guidance by a specialist. For example, for a person with low-vision challenges, a general eye exam will not suffice. Get an assessment from a low vision specialist, a licensed Doctor of Optometry or Ophthalmology, who is skilled in the examination, treatment and management of patients with low vision and other visual disabilitites. Mobility training for people with low vision can usually be obtained from a Center for Independent Living.

6. Avoid patronizing stores, offices, places of worship, and other entities that are not ADA compliant or have made no effort to "welcome" people with disabilitites or to make provisions for accessibility beyond "a ramp."

7. Familiarize yourself with the assistive technology that is available for a specific disability; for people with cross-disability, explore the resources and referrals for each disability.

8. Become knowledgeable about universal design and its principals to allow seniors with a
disability to age-in-place, safely.

9. Be sure to have all necessary estate documents in place, including a release that allows a caregiver to obtain and be given personal information.

10. Identify a reliable source for securing paid caregivers, companions, or personal care assistants. Know the difference between an agency and a registry and whether companion care, personal care assistance, or nursing care is needed. Many Independent Living Centers maintain a registry of "personal care assistants" with payment arrangements determined privately.

And most importantly, expect opposition and discrimination. In Westchester County, New York in 1992 as I was searching for housing for my father, a new residence for seniors opened. While he "appeared" to need lots of care and assistance, he, in fact, through training – for both of us – he was very independent, needed minimum assistance and was "enabled" at every turn.

However, because he was in a wheelchair, the new senior residence refused to lease to him. I took the matter to the Housing Authority; an investigation ensued and the residence was cited for discrimination.

Conclusion

Programs and services for seniors with disabilities and their caregivers are growing in an attempt to become ADA compliant and responsive to older adults. I have witnessed and experienced new technology and even new attitudes even in the three years since my father's passing in 2003. In the 1990s, for example, there were few sources of adaptive clothing for people with physical limitations and even fewer choices for incontinence products and methods for managing incontinence. Now, traveling with a person in a wheelchair, isn't the gargantuan task that it once was only five years ago.

However, I look forward to delivering service to older adults and seniors with a disability without having to "put up my dukes" to make a difference in their lives.

__________________

*Pawlson, G. Chronic Illness: Implications of a new paradigm for health care.  Journal of Quality Improvement, 194; 20:33-39.

Related Articles:

• About Caregiving
• Caregiving Current Trends
• Caregiving: Your Options
• Caregiving: How Social Workers Help
• Caregiving Tip Sheets
• Resources on Caregiving
• Caregiving Real Life Stories