Alzheimer’s Disease:
And It’s Impact On The Family

Martin D. “Butch” Walker, Jr.
Baldwin-Wallace College

The 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 professionals. 

This 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. 

ALZHEIMER'S DISEASE

The Signet/Mosby Medical Encyclopedia has the following description of Alzheimer’s:

A 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:

Finally, 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.  1981).  Since 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)

Carlson, Butcher and Coleman (1988) state the following:

At 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 normally 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)

Alzheimer’s 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. 

Katzman (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 cerebral hemispheres. 

Alzheimer’s 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 immaterial. 

IMPACT ON THE FAMILY

Alzheimer’s 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. 

It 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. 

While 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. 

Alzheimer’s 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 caregiver. 

Bathrooms 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. 

The 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: 

  1. Caregiver pain and anxiety were greater in the early stages reducing as time passed. 
  2. Wives tended to explain husband’s behavior in terms of impact on their relationship, comparing it to taking care of a child.  Husbands on the other hand attributed behavior to disease rather than relationship issues, and assumed the role of teacher.
  3. Wives had trouble adjusting to becoming the authority figure, and felt a loss of control over their home.  Husbands seemed to have less trouble in adjusting to their new responsibilities such as cooking or cleaning. 
  4. Wives showed a tendency to plan from day to day while husbands planned a week at a time.
  5. Adult children provided emotional support but little real help.  Both groups were upset by friends lack of attention to the impaired spouse.
  6. Women tried to find activities they and their impaired spouses could do together, while the men found activities they could do by themselves.

SUPPORT, THERAPY AND ASSISTANCE

Williams (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 of transportation. 

A 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. 

Glosser 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. 

There were 104 caregivers that started in the sessions, 84 completed all eight sessions in their group, and 54 filled out surveys at the end.  The following items were designated as the most helpful:
  1. Finding out how others are dealing with their problems.
  2. Getting a chance to meet people with similar problems.
  3. Sharing feelings with other group members.
  4. Information about medical aspects of dementia.
  5. Getting support form other group members.  In general they expressed that the support group helped them to understand the behavior of Alzheimer’s patients was not unique but the result of progressive neuronal degeneration.  They participants seemed to accept and implement suggestions by the other participants over those offered by the professionals.  Finally, most wanted the sessions to continue beyond the eight weeks.  In fact some started their own self-help group which has continued to grow.

Kahan et al.  (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 Alzheimer’s patients.  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 time period. 

Ninety 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:

  1. Even though some members continued to attend the mixed groups, they felt the all male group was more beneficial.

  2. The men stated they felt a greater freedom to discuss caregiver issues with other men, especially in the areas of physical care. They felt that women caregivers had practice in those areas as mothers, while as fathers they had no experience.

  3. The men seemed more interested in information on Alzheimer’s disease and day to day problem management than emotional issues such as institutional placement or caregiver stress.

  4. The men showed little indication of non-family friendships. They tended to have withdrawn from social relationships, so the group became an important vehicle for expanding social support systems.

Finally in the area of activities, Mobily et al. (1985) suggest that they should be viewed as four quadrants or separate types.  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 physically separated. 

SUMMARY

Alzheimer’s disease causes a gradual, progressive deterioration of mental and physical skills.  As the disease progresses the strain on the caregiver increases.  Support groups have shown to help relieve a great deal of the caregiver strain. 

Many 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 (1985).  He goes on to report that regardless of gender of the caregiver backup relief is extremely important in lowering strain. 

As our population continues to age, Alzheimer’s and other dementias will become more prevalent and impact a greater number of caregivers and families.  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. 

The 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. 

REFERENCES

Carlson, R. C., Butcher, J. N., Coleman, J. C.  (1988) Abnormal Psychology and Modern Life Glenview, IL: Scott, Foresman and Company

Carroll, D. L. (1989) When Your Loved One Has Alzheimer’s New York, NY: Harper & Row

Cohen, D., Eisdoefer, C.  (1987) The Loss of Self New York, NY: Plume Books C.

V. Mosby Company. (1985) Signet/Mosby Medical Encyclopedia New York, NY:

Davies, H., Priddy, J. M., Tinklenberg, J.  R.  (1986) Support Groups for Male Caregivers of Alzheimer’s Patients.  Clinical Gerontologist,  5(3/4), 385-395

Gardner,  H.  (1976) The Shattered  Mind.  New  York,  NY:  Random House,  Inc.  (Vintage Books Div.)

Glosser, G., Wexler, D. (1985) Participants’ Evaluation of Educational Support Groups  for  Families  of  Patients  with  Alzheimer’s  Disease  and other Dementias.  Gerontologist, 25(3), 232-236

Kahan, J., Kemp, B., Staples, F.  R., Brummel-Smith, K.  (1985) Decreasing the Burden  in  Families  Caring  for  a  Releative  With a Dementing Illness. 

Journal of the American Geriatrics Society, 33(10), 664-670 Katzman, R.  (1986) Alzheimer’s disease.  Trends In Neurosciences, 9(10), 522-525

Mace,  N.  L., Rabins, P.  V.  (1981) The 36-Hour Day Baltimore, MD:  The Johns Hopkins University Press

Miller,  B.  (1987) Gender  and  Control  Among  Spouses  of  the  Cognitively Impaired: a Research Note.  Gerontologist,27(9), 447-453

McNew, J.  A. (1987) Alzheimer’s Disease: Conceptualizing Caregiver Competence and Practical Implications.  The  Journal  of  Applied  Social  Sciences, 11(2), 167-190

The  MIT Press.  (1986) The Dictionary of Physiological & Clinical Psychology.  Cambridge, MA:

Mobily, K. E., Hoeft, T. M.  (1985) The Family’s Dilemma: Alzheimer’s Disease.  Activities, Adaptation & Aging, 6(4), 63-71

Morycz,  R.  K.  (1985)  Caregiving  Strain and the Desire to Institutionalize Family Members with Alzheimer’s Disease.  Research On Aging,  7(3),  329-361

Williams,  M.  L.  (1984)  Meeting  the  Needs  of  the Alzheimer’s Caregiver.  Physical & Occupational Therapy in Geriatrics, 3(4), 33-38