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Analysis of the

 Situation

Situation Description Major Stakeholders Priority Needs Capacities to Build Upon Summary

Situation Description    

    Alzheimer’s disease (AD) is the most frequent cause of irreversible dementia (Mace & Rabins, 1991).  Dementia is defined as the loss or impairment of cognitive/mental functioning.  Symptoms of dementia, and thus Alzheimer’s disease, include memory loss, loss of reasoning capacity, disorientation, and intellectual impairment.  In addition to cognitive symptoms, the structural and chemical changes that take place in the Alzheimer patient’s brain may also result in emotional and behavioral disturbances.  These disturbances often prove to be the most significant challenge to the coping skills of caregivers, and may impact whether a patient is cared for at home or is ultimately institutionalized (Mace & Rabins, 1991; Scott et al, 1997; & others).

      Studies report as many as 70 to 80 percent of Alzheimer’s patients experience behavioral disturbances during the course of the disease (Lyketsos, 1999; Kunik et al, 1999).  Behavioral disturbances may be aggressive or non-aggressive in nature.  Examples of non-aggressive behavioral changes an AD patient may experience include incontinence, impaired communication skills or repetitive actions.  Aggressive behaviors may be categorized as verbal, physical or sexual.  According to a study by Hamel et al (1990), hostile and accusatory language, threatening gestures, and overly persistent hugging and kissing were the most frequently cited aggressive behaviors.

      While many of the behavioral disturbances demonstrated by AD patients may be in large part due to the physiological changes caused by the disease, often there is a component of the disturbance that is dependent on the interaction between patient and environment.  For instance, it is commonly implied that incontinence is an inevitable result of the “normal” progression of Alzheimer’s disease (Mace & Rabins, 1991; Alzheimer’s Association NCT, 2002; and others).  However, caregiver and author Lola Shanks (1999) refused to accept this inevitability when caring for her husband, Hughes.  Instead, she applied the following insight to the resolution of this behavioral difficulty: it is the caregiver who must adjust and compensate for the patient’s changing cognitive status, because the patient cannot change.    Mrs. Shanks managed her husband’s incontinence by implementing a strict schedule of toileting Hughes, even if he showed no signs of needing to relieve himself.  This structure allowed Mr. Shanks to maintain bowel and bladder control long into the disease process.  Similarly, adaptations in caregiver reaction and/or environmental changes may help modify the aggressive behavioral disturbances AD patients often experience. 

      An alternate view of aggressive behavior causation is that depression in Alzheimer patients plays a key role.  Lyketsos et al (1999), Kunik et al (1999), and Pearson et al (1989) associated depression with disturbances in behavior.  This finding is of great importance, given that nearly 50 percent of AD patients suffer from symptoms of depression (Lyketsos et al, 1999).  Teri and Wagner (1992) conducted a review of the empirical research available on coexisting Alzheimer’s disease and depression.  These authors found that persons with this dual diagnoses experience more problems with restlessness, agitation, suspiciousness, hallucinations and incontinence than do patients with a singular diagnosis of Alzheimer’s disease.  Researchers label this phenomenon “excess disability” (Kahn, 1975 as cited in Teri & Wagner, 1992).  Unfortunately, while the identification and treatment of coexisting major depression in AD patients might serve to ensure greater patient and caregiver well-being, the assessment of depression is difficult in persons with Alzheimer’s (Teri & Wagner, 1992).  Self-report measures are often ineffective due to the respondent’s inability to recall events within a designated time period.  Another potential barrier to depression assessment in AD patients stems from the fact that the symptoms typically included in depression inventories are often those characteristic of both AD and depression alike.  Finally, since the caregiver is often relied upon for reports of patient depression, the information source may be of concern for screening accuracy.

      Whatever the cause of behavioral disturbance in AD patients, the results are often the same: an overall decrease in caregiver well-being and increased risk of institutionalization for the patient.  Caregiver well-being, in many circumstances, is affected by the behavioral disturbances of patients.  Studies have shown that caregiver stress levels may be profoundly affected by the task of caregiving for an Alzheimer patient.  Studies have also linked increased feelings of caregiver burden with the level of disruptive behaviors displayed by a patient.  In some populations, this increase in caregiver strain actually contributes to the desire to institutionalize their loved one (Morycz, 1985; Scott et al, 1997; Cohen et al, 1993).  Moreover, the level of troublesome behaviors and decline in the ability to perform activities of daily living (ADLs) such as toileting, often lead caregivers to feel overwhelmed and incompetent to continue taking responsibility for the care of the Alzheimer patient (Scott et al, 1997).

Major Stakeholders & Their Decisions

     Stakeholders of primary importance in this situation include the caregivers and the individuals who are diagnosed with Alzheimer’s disease.  Further stakeholders include the extended family and friend systems associated with caregiver and/or patient, the general public, non-profit agencies serving the dementia population, and the traditional healthcare/long-term care system.  Each of these stakeholders plays a role in the care and maintenance of Alzheimer patients within the community.  Various stakeholders may benefit or be disadvantaged by circumstances in which a patient continues to be cared for at home, or if they become a ward in an institutionalized setting.  Following is a description of the major stakeholders.  A review of the decision-making role each plays in the given situation, as well as an analysis of the stakeholders’ strengths and limitations with regard to the decisions, will be addressed in the final section.  

Primary Stakeholders

 Caregivers

      As has been stated in practically every piece of literature related to Alzheimer care, the caregiver is intimately affected by the situation.  According to the Family Caregiver Alliance (FCA), there are five million caregivers in the U.S. providing care for someone with dementia in a home setting (FCA, 2001).  Approximately three-fourths of all caregivers are female.  Using a national sample, the Family Caregiver Alliance (2001) found that in situations where the care recipient resides in the same household as the care provider (as would be the case with most Alzheimer patients), 62 percent of the caregivers are spouses, while 26 percent are adult children.  On average, caregivers provide 4.5 years of care to the patient. 

    Limitations also exist for caregivers within the realm of dementia care.  Caregiving can take its toll on the health of the provider; 31 percent of individuals caring for a person 65 or older describe their own health as “fair to poor” (FCA, 2001).  Additionally, the rate of clinical depression among caregivers has been estimated as 46 to 59 percent (FCA, 2001).  Although home-based caregiving possesses immense value, it does come at a cost to those providing the care.  Lost productivity and benefits are significant.  Nearly $660,000 in Social Security benefits, pension benefits and wage wealth will be lost over the course of a lifetime by the caregiver (www.americangeriatrics.org, n.d.).  Given the costs and benefits of caregiving, the decisions faced by these individuals have no “easy” answers.  

Caregiver Decisions

 

Patient with Dementia

    In Texas alone, there are an estimated 280,000 individuals with Alzheimer’s disease (Alzheimer’s Association NCT , 2002).  The majority of Alzheimer patients are over 65 years of age; in fact, one in ten persons over the age of sixty-five has a diagnosis of AD.  Once an individual reaches the age of 85, there is a 50 percent chance that they will be diagnosed with the disease (Alz Assoc NCT, 2002).  A small percentage of individuals (approximately 10 percent of the total Alzheimer’s population) are diagnosed in their 30’s, 40’s and 50’s.

      Persons with Alzheimer’s disease are subject to deterioration of the brain tissue, consequently leading to severe memory loss, confused thinking and personality changes (Gruetzner, 2000).  Alzheimer’s disease is a slow, progressive disease and it can be expected that at some point in the process, the patient experiences symptoms of loss while he/she is still intellectually aware of what is happening.  This awareness may contribute in part to the prevalence of depression in AD patients (Cotrell & Lein, 1993).  Alzheimer’s disease affects persons from all socioeconomic levels, ethnic backgrounds and genders.

Patient Decisions

 

Secondary Stakeholders

Extended Family and Friend Systems

      Family members and friends are key players, especially with respect to the development of a support network for patient and caregiver.  These individuals can be infinitely valuable to the caregiver, by providing not only emotional support, but also by making themselves available to provide periods of respite to the primary caregiver (Shanks, 1999). 

      Unfortunately, those family members and friends who are not directly involved in the day-to-day care of the Alzheimer patient may also serve as negative forces.  Often, “outsiders” do not see the complete picture.  Alzheimer patients are often able to “put on a good front” in social situations (Mace & Rabins, 1991).  Thus, the full-time caregiver may become isolated from potential support because of the conflict in perception of the situation.  Outside family and friends may feel the caregiver is unduly feeling burdened – they cannot see what the “big deal” is.  In this case, rather than being an asset to the situation, family and friends may become a limiting factor.

Extended Family and Friend Systems Decisions

Alzheimer's Disease Centers & the Alzheimer's Association

      The National Institute on Aging funds over two dozen Alzheimer's Disease Centers (ADC's) nationally.  These ADC's are located within major medical/university settings and have the common goal of enhancing Alzheimer's disease research by providing a network within which to share ideas and results.  The ADC's offer to persons with AD and their families diagnosis and medical management; information about Alzheimer's disease, services and resources; and opportunities for volunteer patients to participate in clinical drug trials, support groups, and research projects.

    Another key stakeholder, the Alzheimer's Disease and Related Disorders Association, Inc. (known widely as the Alzheimer's Association) is the "largest national voluntary health organization committed to finding a cure for Alzheimer's disease and helping those affected by the disease" (www.alz.org/aboutus/respite.htm).  The national organization is composed of a network of chapters throughout the United States, which serve to disperse information and services to persons affected by AD on a local level.

Alzheimer's Disease Centers and Alzheimer's Association Decisions

 

Healthcare and Financing System

    Medicaid and Medicare are primary sources of health care financing for the elderly.  As it is currently structured, Medicare is not equipped to function as a system for chronic health care needs.  Conversely, Medicaid is a primary source of healthcare coverage in long-term care situations.  A serious problem with Medicaid funding, with regard to Alzheimer’s care, is the low rate of reimbursement in nursing home and community-based settings.  Within Texas nursing facilities, Texas Index for Level of Effort (TILE) rates are determined in large part based upon the medical/clinical complexity of the patient’s condition (Texas Dept of Health, 2002).  These TILE’s indicate how much monetary reimbursement a facility will receive from the government for the care of a patient with a specific condition.  Alzheimer’s disease patients are not viewed as medically complex (DHHS panel on AD, 1996).  Typically, AD patients are quite medically healthy, despite their cognitive deterioration.  Unfortunately, TILE’s currently overlook the intensive staff training and hands-on care required to appropriately maintain an AD patient’s functioning.

      In Texas, long-term care facilities may become specifically state-certified for providing dementia care.  In Tarrant County, there are only four such facilities, with a combined total of 322 beds available.  It is worth noting that none of these Alzheimer’s beds are Medicaid certified.  The cost of placing a patient in one of these Alzheimer’s-specific facilities ranges from $95 - $120 per day for a semi-private room.  Due to the low rate of Medicaid reimbursement for Alzheimer’s patients, few facilities find it cost effective to pursue Medicaid licensure for beds in their dementia units.

      Despite low reimbursement in long-term care facilities, the situation is far worse for adult daycare and assisted living facilities.  It is an unfortunate reality that often, individuals who would otherwise be able to stay in the community are forced into admission in long-term care facilities because of financial hardship.  These individuals and their families may not be able to pay privately for the respite or home health they need to remain in their own homes, so they go where Medicaid will foot the bill: a nursing home.  However, as mentioned before, most of the available Medicaid beds are not located in AD-specific nursing facilities or dementia units.  Thus, the facility staff may not be adequately trained or experienced in Alzheimer’s care.  This may significantly impact the patient’s quality of life.   

Healthcare and Financing Decisions

Priority Needs 

    Based upon the findings of the preceding analysis, modification of behavioral disturbances in Alzheimer's patients appears to be an essential focus for the primary stakeholders and secondary stakeholders.  Intervention at this level would affect the quality of life experienced by both caregivers and care recipients.  Additionally, concentration on the issue of behavioral disturbances may also have spillover affects on, or be intricately linked to, the secondary stakeholders. 

    Taking into consideration the needs and decisions of all major stakeholders addressed in the previous analysis, the following needs were identified.  These needs were selected based upon their scope, signficant impact, ability to be altered by potential solution interventions, and ability to contribute to overall improvements in stakeholder's wellbeing.

Capacities to Build Upon

    Each stakeholder in this analysis possesses key strengths and capacities upon which the foundations for change may be built.  Following is a summary of the capacities of the major stakeholders identified in this analysis.

Caregivers...

Persons with Alzheimer’s disease...

Extended family...

Alzheimer's Disease Centers (ADC's)...

Alzheimer's Association...

Summary

    Throughout the literature, caregivers and patients with dementia are cited as the major stakeholders in this situation.  Though other stakeholders are indeed involved, again and again the caregivers and patients face numerous challenges and decisions that will significantly impact both the situation and the other stakeholders.  For instance, given the strong link between caregiver burden or feelings of inadequacy and the decision to place the patient in long-term care, whether a caregiver seeks resources that will lower their sensation of burden will impact several stakeholders.  The patient will be affected in that their care environment may impact their quality of life.  Taxpayers will be affected if the patient must go on Medicaid in order to afford the care – the costs of nursing facility care are far greater (monetarily) than that of home care.  Studies have shown that placement of the patient in a nursing facility does not eliminate the burden experienced by caregivers; rather, the stress is modified and experienced in a different way.  Often, caregivers feel guilty and their feelings of inadequacy are increased when they place their loved one in a nursing facility (Shanks, 1999).  Given that caregivers are already prone to experiencing depression and self-perceived poorer health, the decision to institutionalize the patient may indeed make the situation worse for several stakeholders.

    The Alzheimer's Disease Centers (ADC's) and the Alzheimer's Association should also be seriously considered as major stakeholders, given their extensive involvement in caregiving and patient issues.  The ADC's and Alzheimer's Association possess the strength and power to enact some of the potential solutions that will be addressed next in this proposal.  Currently, interventions for addressing behavioral disturbances in AD patients primarily involve providing the caregivers with written or visual media to “train” them how to care for the patient.  Despite the many excellent books and videos available, often this type of training does not easily translate into changed behaviors and improvement in caregiver outcomes.  An intervention that involves several forms of media – video, interactive computer games, written and verbal instruction – might better serve the caregivers and patients.  These possibilities will be further examined.