Analysis of the
|Situation Description||Major Stakeholders||Priority Needs||Capacities to Build Upon||Summary|
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;
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
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.
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.
How will the caregiver structure his/her reaction to patient behavioral disturbances?
Will the caregiver seek support from outside sources to help ease the burden of caregiving?
Where will the patient be cared for (i.e. continued home care, placement in an institutionalized setting, home care with supplemental help from adult day care or a professional in-home respite service) and how will costs affect this decision?
the patient be given psychotropic medications to modify behaviors or will
alternate, non-pharmacological means be used?
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.
Due to the cognitive deterioration associated with AD, patients eventually reach a point where they are no longer capable of making decisions. However, in the early stages, a patient is cognitively competent to make decisions regarding future care. It is at this point that experts recommend patients and caregivers be proactive in planning for the future, while the patient is still able to express his/her preferences for care.
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.
Family and Friend Systems Decisions
What role they wish to play in the care of the Alzheimer patient?
Will they validate primary caregiver’s perception of the situation and provide unconditional support, or will they choose to disagree with those perceptions and push for a different understanding of the situation?
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.
Disease Centers and Alzheimer's Association Decisions
Which research projects receive funding?
What direction will Alzheimer's disease caregiving improvement efforts take?
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.
and Financing Decisions
Will incentives be given for long-term care facilities to provide quality AD care?
Will Medicaid funding be more readily available for AD care within the home?
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.
Provide caregivers with alternative options for learning how to deal with problem behaviors – currently the options largely consist of books or printed materials and video or audio tapes.
Caregivers need a way to access knowledge easily and at their own pace.
Caregivers need to access knowledge and support at the time of need, whether that time is 2 a.m. or 3:30 in the afternoon. The time of greatest need may vary from person to person and day to day. It may not always fall into normal “working hours.”
Caregivers need a way to build skills for caregiving, rather than merely accumulating information from various sources.
Training for caregivers should result in increased competence and confidence for fulfilling the caregiving role.
Caregivers need to have opportunities for experiential learning without risk to themselves or those persons being cared for.
The knowledge possessed by experienced caregivers should not be lost – knowledge should be captured for the benefit of future caregivers.
Information and knowledge possessed by major authorities in Alzheimer’s disease, such as the Alzheimer’s Association and Alzheimer’s Disease Centers, should be stored in such a way as to facilitate sharing of the knowledge with caregivers and other relevant stakeholders.
The captured knowledge should be utilized to develop training programs that help caregivers learn and apply caregiving skills.
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.
Are assumed to have strong relationships with their care recipients, given that the majority of caregivers are either spouses or adult children (FCA, 2001).
Know very well the likes, dislikes, personality and behavioral traits of the patient.
Provide care that has great value: it has been estimated that if the services that home-based caregivers provide were to be replaced with formal, professional services, the cost would reach approximately $196 billion (FCA, 2001).
Report receiving intrinsic benefits from their caring role, thus acquiring a positive effect on well-being (Pearlin et al, 1990).
have the capacity to
change or modify their reaction to situational factors, unlike the patient (Shanks, 1999).
Are often aged, given that 62 percent are spouses of the patient; it has been reported that seniors are major consumers of computer technology - especially the internet (http://web.pdx.edu/~psu01435/tooold.html).
Persons with Alzheimer’s disease...
Demonstrate behaviors that are usually linked to the environmental interaction with the patient – and the environment is typically subject to change (Hamel et al, 1990).
Do indeed have the ability to respond to positive environmental changes, leading ultimately to fewer behavioral disturbances and better quality of life for patient and caregiver (Gruetzner, 2000).
Possess capacity related to their sheer numbers - with greater numbers of extended family and friends, there is potential for more hours of patient care to be distributed to help relieve the primary caregiver.
Alzheimer's Disease Centers (ADC's)...
Possess vast amounts of knowledge acquired through their research and networking.
Employ some of the most prominent researchers in the field of Alzheimer's disease (www.alzheimers.org/pubs/adcdir.html#about).
Has contact with thousands of people with AD and their caregivers nationally.
Has networking connections with professionals, caregivers and persons with AD from around the world.
Is the top private funder of research into the causes, treatments, prevention and cure of AD.
Is recognized as an authority in AD information, education and support.
Has major advocacy strength, as demonstrated by the $466 million for AD research Congress designated as a result of the Association's advocacy efforts (www.alz.org/aboutus/respite.htm).
Is open to technological advances, as demonstrated by its current work on a "personalized knowledge service" that will link callers to a 24-hour, toll free hotline providing care consultation and referrals to services in the caller's area.
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.