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The Coming Epidemic: Early Intervention with Alzheimer’s Disease by Lyn Griffin Cherry, Cherry, LCS LCSW W, MSW  Statistics from the American Association for Geriatric Psychiatry (aagpgpa.org) are alarming: an estimated four million Americans currently suffer from Alzheimer’s Disease (AD) or a related form of dementia. Nearly 10% of all people over the age of 65 and perhaps up to 50% of those over age 85 are thought to suffer from these diseases. The average person lives about 20 years from the onset of first AD symptoms. Once diagnosed with AD, a person lives an average of eight years. In just the next decade, the number of people living with AD may swell to almost 8 million.  A family’ family’s ability ability and willi willingnes ngnesss to prov provide ide care care for an AD patien patientt may  vary significantly during the course of the disease. Available community  resources, an AD patient’s ethnic background, regional factors and even differences between urban and rural locale can play a role in a family’s decision making. The cultural competency of a case manager will be tested and can be invaluable to a patient and family on the long road from diagnosis to the patient’s final days. Managing the patient with AD or suspected dementia requires unique expertise in addition to cultural competency. As the numbers above foretell, the need for proactive case management will grow dramatically as AD and dementia patients flood the healthcare system with symptoms of these

recognizing early symptoms and facilitating a diagnosis? It is in the early stages of AD and dementias that there is opportunity for case managers to intervene and help set the family on a course of  appropriate care throughout the disease’s progression. Early intervention can help patients live independently for as long as possible. Education of the patient and family about the importance of medication compliance, socialization and adaptive skills will make a dramatic and positive difference in a patient’s sense of well-being and control over their daily living.  Another  Anot her impor important tant adva advantag ntagee of early early diagn diagnosis osis is that that itit will will still still be be possible to learn a patient’s wishes for end-of-life care with confidence. And the patient will be able to participate in setting aside or developing the

diseases and unrelated medical problems.

emotional, physical and financialofresources a family will need power to respect those wishes. The development a living will and healthcare of  attorney are particularly critical, so that decisions consistent with the patient’s wishes can be made after he or she is no longer able to express a preference. Patients and families must understand the progression of AD and related dementias – including the end-stage conditions and the expected medical complications that will be treated in the traditional medical model of  care, absent any contrary instructions. The medical model of care that serves so well for non-dementia related problems could create a cycle of prolonged suffering and exacerbated psychiatric symptoms in an end-stage dementia patient who has lost the capacity to understand his or her surroundings and condition. A study  reported in the Journal of the American Medical Association [JAMA 2000;284: 47-52] found that physicians often fail to acknowledge the final stages of AD as a terminal illness. As a result, they subject patients with diagnoses such as pneumonia or hip fractures to unnecessary invasive procedures when providing palliative care might be more appropriate. The study goes on to

IDENTIFYING THE PROBLEM

Because AD is progressive and chronic, it is often a comorbidity to another diagnosis in the acute care setting, if it is diagnosed at all. Rather than being brushed off as annoying complications or placed as additional burdens on the family at discharge, all indications of possible dementia should be evaluated promptly. There are a number of medical causes of reversible dementia, non-progressing dementia or hospital psychosis that should be ruled out first. Dementia symptoms are not just “normal aging,” an assessment sometimes made by family members and even by some physicians. Case managers can be a catalyst for further diagnostic work by  educating patients and family and by recognizing and documenting symptoms. As they work with AD and dementia patients, case managers will also find opportunities for further education of unit staff and physicians. Case managers should be alert to certain indicators in their elderly  patients who are in an acute care setting, for any reason: • A patient is readmitted readmitted for for apparent medicatio medication n or treatment treatment noncompliance. This can be an indicator of a decrease in memory or judgment. • A patient cannot accurately accurately identify identify why they are in the hospital. hospital. Comments such as: “They tell me I fell, but I don’t remember.” Or, “I’m not sure why I’m here, I have been constipated – could that be it?” are indicators of a possible AD or dementia problem. • A family report report of one or more of the following: following: a change in sleep pattern, pattern, behavior changes usually occurring in the afternoon or evening, increased agitation or frustration, getting lost, short-term memory  problems or withdrawal.  A case manager manager with with appropriate appropriate traini training ng (often (often a social worker), worker), can can do a Mini Mental Status Exam (MMSE) as a preliminary screening. It is useful to do a Geriatric Depression Scale (GDS) at the same time to rule out pseudo dementia caused by depression. Depression in the elderly, masquerading as dementia, can be brought on by recent life changes such as the death of a spouse, sibling or child; a major move such as selling the home and going to a retirement center or a decline in health that has decreased the person’s independence. THE CRITICAL ROLE OF THE CASE MANAGER

 Alzheime  Alzh eimer’ r’s Disease Disease and progre progressi ssive ve dement dementias ias are are termi terminal nal illnes illnesses ses with no known cure. Early symptoms are often frustrating or annoying but are not life-threatening. So, why is it so critical for case managers to play a role in

report that although patients with severe dementia were at least four times more likely to die within six months, they received the same amount of  invasive treatment as patients without a dementia diagnosis. This suggests that the best treatment for end-stage dementia patients may be to focus on minimizing discomfort rather than relying on the traditional medical model. In another example, most patients in the end-stage of AD will eventually  lose the ability to eat. The “medical model” solution is to place a PEG or NG tube for feeding. This will, of course, extend the patient’s life but may be contrary to the patient’s pre-AD views about quality of life and appropriateness of invasive or “heroic” measures. It may also extend the physical, emotional and financial toll on family caregivers — not only through prolonged deterioration of the patient but also through the continuation of related medical complications demanding treatment decisions as each problem arises. Living wills and health care powers of attorney will provide for a patient’s  wishes  wis hes after after they lose the cogni cognitive tive abil ability ity to to assert assert those those wis wishes hes.. With With those those  wishes  wis hes in in mind, mind, hospic hospicee care care should should also also be disc discusse ussed d early early with with patien patients ts and families as an option for support and care in late stages of the disease.  A surpris surprising ing number number of people people are unfam unfamilia iliarr with with service servicess that that hospic hospicee programs offer. Many laypersons associate hospice only with cancer care or  with  wit h “givi “giving ng up.” up.” In In fact, fact, hospic hospicee service servicess such such as educ educatio ation n about about the the dying dying process, clinical support and grief counseling are resources that no family  should have to face a terminal illness without. (continued on page 5)

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Patient Benefits – The case managers spend much more time evaluating and analyzing data and problem-solving, making better use of their unique training and experience and improving care processes house-wide. For example, they have implemented procedures with the Physical Therapy  department to eliminate avoidable days caused by wait time for PT evaluations. The scope of this problem across units was not understood when individual case managers encountered the periodic problem but never had the time or responsibility to collect data and analyze the bigger picture. Once frequency was tracked, affected patient populations identified and avoidable days quantified, solving the problem became a priority for all involved. The case management teams now also prepare for and participate in a  weekly  wee kly care care conf confere erence nce kno known wn as as “Fin “Financi ancial al Roun Rounds. ds.” In this this mee meetin ting, g, the the Physician Advisor to the Case Management Department leads a review of high cost or long stay patients. Representatives from Trauma and the Business Office attend these rounds, as well as case managers and social workers. Patients are selected for discussion if they have an unexpected stay over five days or accumulated charges over $30,000. Prior to the redesigned case

3.82 in 2001 to 3.9 in 2002 (5 being the highest on a 5 point scale). Cape Canaveral Hospital’s department score rose from 4.26 in 2001 to 4.42 in 2002.  Wee are plea  W pleased sed that that despi despite te the the somewh somewhat at dramat dramatic ic restr restructu ucturing ring of jobs, jobs, our our satisfaction scores did not decline.

management function, these were not readily Now,topatients and families benefit from the cases focused energies of allidentified. the caregivers speed progress and recovery. Prior to redesign, case managers were processing reviews and immediate discharge needs by rote. Now, the CMAs provide the leverage of time and productivity needed to provide this additional service.

that career ladder, along with additional skills and expertise that CMAs can develop to contribute to the overall team performance and efficiency.

Employee Satisfaction – Health First conducts an annual employee satisfaction assessment, administered by the Gallup corporation. In 2002 the survey was conducted just three months after our redesign was completed.  At Holme Holmess Region Regional al Medic Medical al Center Center and Palm Palm Bay Bay Commu Community nity Hos Hospita pitall the overall satisfaction score for the case management department went from

LOOKING FORWARD

Case management at Health First will undoubtedly continue to evolve. The first step in that evolution – adding CMAs to the team — has proven positive for patients and employees. In view of our initial long-term objective to improve our pipeline of case managers, it is still too early to conclude that  we have have suc succee ceeded ded.. Howev However er,, there there are indi indicat cators ors that that we are are movi moving ng tow toward ardss success: case manager satisfaction is improving, case managers are challenged to use the breadth of their professional expertise and the case management department is recognized as a valuable contributor to quality of  care at the health system, which provides professional stature and satisfaction.  A career career ladde ladderr program program for CMAs CMAs will will be be develop developed ed in the near futu future. re. This is a step consistent with the health system’s commitment to employee growth and development. The CPUR certification will no doubt play a role in

Bonnie Rudolph is the VP of Corporate Case Management at Health First. In addition to responsibility for the operations of the Medical Management  Department of Health First HMO, she is responsible for the Case Management   functions  func tions at Holmes Holmes Region Regional al Medical Medical Center in Melbourn Melbourne, e, Cape Canav Canaveral  eral  Hospital in Cocoa Beach and Palm Bay Community Hospital in Palm Bay, all on the eastern coast of Florida. Bonnie can be contacted at  [email protected].

The Coming Epidemic: Early Intervention with Alzheimer’s Disease (continued from page 3) Just as other patients with a terminal illness, end-stage dementia patients qualify for hospice care when they reach the point at which a physician believes that their life expectancy is six months or less. A change last year in

breadth of information they need to make informed judgments for the loved one in their care. Case managers should have a collection of resource referrals to provide to

Medicare policy makes hospice even more accessible to AD patients than before. In April 2002, Medicare began to authorize coverage for mental health services, home health and hospice, previously unavailable for patients with an Alzheimer’s diagnosis.

patients and family in a proactive manner. Local support groups, Alzheimer’s  Association  Associat ion chapt chapters, ers, res respite pite care care,, adult adult day care care and and hospice hospice prog program ramss are examples of community resources that not only provide critical support to caregivers and patients at different stages of the disease but also play a key  educational role. A list of some national resources and a reading list are included here as a starting point.

CAREGIVERS AS CASE MANAGERS

 As this this debili debilitati tating ng disease disease prog progres resses ses and patien patients ts pres present ent for for acute acute care care for other medical reasons or complications from AD, case managers will best serve their patients and families by paying ongoing attention to the disease stage. It is important to recognize that as the decision-making capability of  the patient declines, the caregiver is thrust into the role of guardian and, effectively, “personal case manager.” It is this informal case manager who is  with  wit h the pati patient ent in in all setti settings ngs and and becomes becomes the advoca advocate te for for the appr appropri opriate ate level of care – appropriate for both the patient and the caregiver. Case management professionals play a critical role in the “training” “training” of these de-facto case managers who rarely have the training, background or knowledge to perform this job that has fallen to them. The pace of change diagnostic capabilities, pharmacological interventions andis physicalinand occupational therapies for treatment of AD symptoms continuous. Caregivers Caregivers will need education that is provided at the right time and in the right r ight setting, so they can absorb the knowledge they need. This may mean repetition as well as prompting the appropriate questions they should ask of physicians, nurses and other providers to elicit the full

Administrationn on  Administratio

Aging www.aoa.dhhs.gov

National Institute of Aging

Agency

for Health Care Research & Quality www.ahcpr.gov/clinic/alzcons.htm

Alzheimer’s Association

www.alz.org

How

to Care for an Aging Parent, Virginia Morris ISBN 1-56305-435-3

Show

National Alliance for Care Giving

www.caregiving.org National Family Caregiver’s

Alzheimer’s Disease Education & Referral Center www.alzheimers.org

Me The Way To Go Home, Larry Rose ISBN 0-943873-08-8

Living in the

Association

Labyrinth, Diana Friel McGowin ISBN 0-385-31186-9

www.nfcacares.org

Lyn Griffin Cherry is a social work case manager at Hot Spring County   Medical Center in  Medical in Malvern, Malvern, AR and has over ten ten years of of experience experience in  geriatrics,  geriatr ics,psychi psychiatric atric evaluatio evaluations ns and hospice hospice care.She received received a Master Master of  Social Work Work degree from the University of Arkansas at Little Rock. Lyn can be  contacted at [email protected].