D. “Butch” Walker, Jr.
intent of this paper is to explore Alzheimer’s disease; it’s impact
on the patient and more importantly it’s impact on the family or
primary caregiver. A great
deal of research has been done on Alzheimer’s and a large amount of
literature is available. Research
on the affect of Alzheimer’s on the patient’s family members or
primary caregiver is relatively new, and available literature is sparse.
The information presented here is the result of reading the
limited amount of literature available, and discussions with interested
paper will first explore what is currently known about Alzheimer’s and
other dementias, and the physical and psychological symptoms that
present in the affected patient. We
will then examine the impact on the family, current approaches in
reducing the impact, and in summary discuss possible enhancements in
care and needed changes in attitudes, available sources of care, and
society in general.
Signet/Mosby Medical Encyclopedia has the following description of
form of brain disease. It
can lead to confusion, memory loss, restlessness, problems with
perception, speech trouble, trouble moving, and fearing things that are
not there. The patient may
become too excited, refuse food, and lose bowel or bladder control.
The disease often starts in late middle life with slight deficits
in memory and behavior. Alzheimer’s
disease occurs as often in men as it does in women.
The exact cause is not known, but breakdown of the cells of the
brain occurs. There is no
treatment, but good nutrition may slow the progress of the disease,
which lasts about 7 years in most people who have it. (p. 21)
The Dictionary of Physiological and Clinical Psychology has this to add:
at least one form of senile dementia (Alzheimer’s disease) is marked
by the degeneration of some of the neurons which produce acetylcholine
and communicate with the neocortex (Whitehouse et al.
blockage of acetylcholine interferes with memory formation in normal
people, it is possible that the loss of acetylcholine-containing neurons
underlies the memory deficit in Alzheimer’s disease. (p. 193)
Butcher and Coleman (1988) state the following:
whatever age it strikes, Alzheimer’s disease is associated with
degenerative changes in neurons, consisting chiefly of the appearance of
senile plaques (dark areas of cellular “garbage”) and
neurofibrillary tangles (derangement of the
regular pattern of fibrous tissue) within the nerve cells (Kolata,
1981a). These changes, in
turn, are accompanied by a gross loss of neurons (more than 75 percent)
in the basal forebrain. (p. 464)
presents in two basic varieties, simple deterioration and paranoid
tendencies according to Carson et al. (1988) Simple deterioration
involves the gradual loss of various mental capacities; loss of memory
for recent events, progressing to disorientation, poor judgement,
neglect of personal hygiene and loss of contact with reality.
Paranoid tendencies on the other hand involves marked suspicion,
often convinced others are engaged in various injurious plots.
(1986) reports that Alzheimer’s disease is just one of more than 60
disorders that may produce dementia.
Katzman also reports that positron emission tomography (PET) has
made it possible to measure and image oxygen and glucose metabolism
within the brain of the Alzheimer’s patient.
Changes first occur in the parietal lobe (which is responsible
for sensory discrimination and body image).
Later in the temporal lobe (hearing, olfaction, sensory speech
and short term memory) and the frontal lobe (abstract thought, mature
judgement, social inhibition, intellectual function, and storage of
sensory information). In
advance cases there may be a generalized decrease in metabolism in all
contrasts with multi-infarct dementia (caused by arterial blockage, or
cerebral vascular accident(CVA)) in several ways.
Alzheimer’s is a gradual, progressive onset and lasts on the
average of seven years. Multi-infarct
dementia (M.I.D.) has an
irregular onset and a brief course, very often resulting in death.
Alzheimer’s patients also have a more pronounced cognitive
impairment and paranoid patterns are more common.
M.I.D. patients also
exhibit symptoms generally related to CVA such as; headaches, dizziness
and seizures. As either
cause of dementia becomes more advanced the differences begin to blur. For the primary caregiver, any difference between the two is
IMPACT ON THE FAMILY
disease is becoming a major social problem.
Mobily and Hoeft (1985) report that 1 - 1.5 million people
currently suffer from dementia and that 50% or more of those cases are
thought to be caused by Alzheimer’s.
According to Blumenthal (1981) and Rathbone-McCuan & Hashimi
(1982) the current population at risk can be defined as those having the
disease, an estimated 330,000 families extensively involved, and an
additional two million individuals impacted in various ways; as reported
by McNew (1987). Williams
(1984) predicts that by the year 2050 more than 3 million patients will
be diagnosed as having Alzheimer’s.
is generally viewed that home care is the most humane and beneficial for
the patient. Mortality and morbidity rates have been reported to be better
in patients cared for at home versus those that are institutionalized.
Kahan, Kemp, Staples, and Brummel-Smith (1985) report that the
majority of families prefer to care for their demented relative at home.
They also report that surveys have found that the difference
between those patients in the community versus those in institutions was
not the severity of the dementia, but rather the availability of a
spouse or relative to provide care.
the patient finds home care beneficial, the impact of that care on the
family and the primary caregiver can be overwhelming.
McNew (1987) reports that several authors feel that three sets of
independent variables (characteristics of the patient, caregiver and
environment) interact to produce caregiver strain.
All authors seem to agree that caregivers suffer to some degree
from the following: tension, anger, frustration, sadness, embarrassment,
emotional and physical fatigue, isolation, reduction in social and
recreational activities, and financial problems.
presents a wide array of problems for the caregiver.
It disrupts their lives in many areas.
The patient and caregiver may be forced to move from their home
of many years if for example they live in a multi-story home and the
Alzheimer’s patient can no longer negotiate stairs.
The move forces the patient into a unfamiliar environment, and
cuts social ties that the caregiver may have had with neighbors, church
or social groups. If a move
is not required, their home may have to be modified to widen doors,
remove loose carpet or throw rugs, furniture may have to be re-arranged,
breakable objects may have to be removed.
This presents a change in comfort and lifestyle for the
may need to be modified to add grab bars, tub enclosures removed, safety
locks added to cabinets and drawers; stoves, ovens and appliances
modified to prevent accidental use; all causing a new level of
inconvenience and frustration for the caregiver.
The possible move or modifications may also increase financial
burden causing additional worry and frustration.
patient’s pre-morbid flaws in character or personality will in many
cases be amplified causing strain in the relationship.
As strain increases, the caregivers level of guilt feelings
increase as well. The caregiver suffers from embarrassment when the patient
exhibits loss of social inhibitions, memory loss, or deterioration in
motor skills. The
embarrassment combined with friends reducing their visits, and reduction
in social and recreational activities produces a state of isolation.
The caregiver suffers from a sense of loss since the patient is
no longer the spouse or relative that they “knew”. All of the stressors lead to physical and emotional fatigue
and the caregiver starts to feel overwhelmed.
Miller (1987) conducted a study involving 15 caregivers (6 husbands, 9 wives), 13 of whom had been aware of their spouses impairment for over three years. Among the findings of the study were the following:
SUPPORT, THERAPY AND ASSISTANCE
(1984) groups caregiver needs into five areas; educational, physical,
emotional, social and professional services.
Most authors agree that the caregiver tends to let their physical
needs go unattended. They
tend to stop activities such as golf or taking walks, they alter their
eating and cooking patterns to suit the patient even if they make sure
to provide adequate nutrition for their spouse.
They put off health care for themselves either for financial
reasons or the inability to find temporary care for their spouse or lack
few studies have taken place assessing the value of support groups for
caregivers. The support
groups in the studies were professionally led, structured, usually met
either weekly or bi-weekly for a period of six to eight weeks, and
combined education with group exchange of information and problems.
and Wexler (1985) started and studied a support group that met two hours
per week for eight weeks. Three
different groups were formed over a year.
The sessions were led by a Neuropsychologist and a geriatric
social worker. Sessions covered both medical and behavioral topics, skills
for managing behavior, legal and financial needs, social and
interpersonal problems, and allowed the participants to share and
receive validation and support.
(1985) conducted a study involving a support group versus a
control group not involved in a support group.
The members of both groups were primary caregivers of
Over the period of the study they found that the support group
showed a decrease in perceived family burden while the control group
showed an increase.
The support group showed a decrease in depression versus an
increase for the control group.
The support group also had a marked increase in knowledge of
dementia while the control group showed no change in knowledge over the
percent of the participants in the support group stated they believed
the program was extremely helpful.
They stated that they were more capable in meeting their other
responsibilities, less embarrassed as their understanding increased, and
felt increased control over their lives.
The study also found that the greater the number of family
members participating in the group, the better the results in lowering
of stress and increasing family harmony.
At the urging of the males members of mixed sex support groups, Davies, Priddy and Tinklenberg (1986), formed an all male caregiver support group. They report the following findings:
in the area of activities, Mobily et al. (1985) suggest that they should be viewed as four quadrants or
They divide those into activities the patient and care giver can
do together (watching TV, gardening, visiting family or friends),
separate activities while physically together (one gardens while the
other reads for example), individual activities (spouse goes golfing
while patient is cared for by another person), and separate activities
disease causes a gradual, progressive deterioration of mental and
As the disease progresses the strain on the caregiver increases.
Support groups have shown to help relieve a great deal of the
studies have reported differences in perception of problems and needs
based on sex of the caregiver.
Morycz (1985) also supports this in a study of strain and the
desire to institutionalize.
He reports that men tended to utilize available support while
females would not, becoming more homebound with the patient, more
confined, and more exhausted.
He also reports that Zarit, Gatz, and Zarit found wives to be
more burdened and likely to institutionalize than caregiving husbands.
Gilhooly (1984) found that male supporters caring for females had
better morale than females caring for males, as reported by Morycz
He goes on to report that regardless of gender of the caregiver
backup relief is extremely important in lowering strain.
our population continues to age, Alzheimer’s and other dementias will
become more prevalent and impact a greater number of caregivers and
Already there is a shortage of support groups, day health
centers, day care centers, and respite programs to help reduce the
strain on caregivers.
The need for those programs continues to grow and funding needs
to be sought to provide for this needed support.
different needs of caregivers based on gender has to be taken into
account in developing programs.
Recognition of the value of home care has to be taken into
account on the part of government and insurers, making funds available
through health care programs to provide for respite care.
Certainly medical research will continue to determine the cause of Alzheimer’s, as well as possible treatments to reduce symptoms and degradation of mental and physical abilities. Research must also continue on programs and methods to reduce the strain on the caregiver providing models for international use.
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