This section will discuss the impact of Alzheimer's disease on racial, cultural, and gender variables, with the focus being on the various approaches to care of the disease. Developmental stages and tasks will be discussed for both the client and the caregiver.
Gender and Culture
Alzheimer's disease and related dementias affect all races, ethnicities and cultures equally. (Anonymous, 1998) Of people over 65 an estimated 6-10% will be affected by some form of dementia. (Hendrie, 1998) It is only in gender where we see slightly more women than men who are affected by this destructive illness. (Lautenschlager et al
., 1996) The only controllable risk factor that is known at this point is cigarette smoking
. In a large study in Germany smoking cigarettes
doubled the risk of dementia in the older population. (Ott et al., 1998)
Alzheimer's disease patients can survive for 3-20 or more years. It is not the AD that kills the patient, rather it is diseases of aging and/or inactivity, with pneumonia being the leading cause at 70%. This is followed by heart disease, stroke, and cancer. (Thomas, Starr, & Whalley, 1997)
Race, culture, religion and ethnicity all play a part in how we care for our elderly. Each family makes decisions based on background, experience, expectations, knowledge base, and economics. Most people would like to be able to care for their aging parent or spouse with as little disruption to lifestyle as possible. Alzheimer's Disease, however, is a full time commitment, not just eight hours a day, but "24/7", as the current idiom implies, the patient needs continuous care. Sleep habits are disturbed, wandering is common, medications must be carefully controlled, safety is always important. Home care soon becomes frustrating and exhausting if left to one or two caregivers. When the primary caregiver has his/her own medical needs to see to, is also aged, or is the parent of young children as well, the burden can become overwhelming. In-home care is a possibility as is placement in a live-in facility, but both are expensive alternatives.
In California ethnic minorities make up a large part of our population. In the book Culture and Nursing Care: A Pocket Guide, there are characteristics of these groups and generalizations are made about how they care for their elderly. (Lipson, 1996) The following table highlights some of these groups that are represented in the Bay Area.
American Indian Status of "elder" begins in middle age. Great respect and veneration of elders.
Extended family cares for elders.
Prefer home care. (Only 10 SNFs on all US reservations.)
African American Prefer to keep at home. May want patient to die in hospital since death in a home brings bad luck to the home.
Arab Extended family cares for patient. Will seek hospitalization to prevent death.
Cambodian Extended family performs home care. May attribute memory loss and depression to Khmer Rouge War atrocities.
Central Americans Prefer home care by extended family. Reluctant to place in SNF. May attribute dementia to supernatural or significant life event e.g. death of child or spouse.
Chinese Expect home care by extended family.
Filipino Expect home care by extended family. Religion a large part of daily life.
Hmong Home care by female family members expected. Evil spirits can cause harm, so illness is not spoken of.
Japanese Home care expected by family. Shame associated with mental deterioration.
Mexican Home care by extended family. Mental deterioration a sign of weakness.
Southeast Asian Home care preferred. Want to die at home with family attending.
Russian Prefer home care, but SNF OK if near home and family participates in care.
The task of the older adult according to Erikson is "ego integrity versus despair".(Boyd, 1998) At this stage the older individual values independence and self-care, keeping up their own household and maintaining friendships and family ties. Despair comes from losing that independence to illness or economics, and losing friends to infirmity and death.
With dementia, independence is lost. The unreliability of short-term memory and confusion makes it difficult to be around the person. and leads to more isolation from friends. Support and comfort come from praising the tasks that can be accomplished and offering frequent reminders of place and time.
The primary caregiver for the Alzheimer patient is often the spouse or the adult offspring. The spouse who is also facing developmental tasks of ego integrity versus despair, can easily become depressed and disheartened by the loss of an intact partner. The spouse may also have to cope with his/her own medical needs and feel caught up in a never-ending spiral to the grave. Support groups such as the Alzheimer's Association focus a great deal of attention on the caregiver for just these reasons. Talking about one's circumstances and meeting others with similar concerns is very helpful in maintaining a positive perspective.
When the adult offspring of the patient becomes the primary caregiver, that person's developmental tasks may also be impaired. The tasks of middle adulthood according to Erikson are " generativity versus self-absorption and stagnation." (Boyd, 1998) This can be a time of new learning, travel, and involvement in the larger community. Care and loss of elderly parents is expected, but a 3-20 plus year outlook for treatment and care of an Alzheimer's patient is daunting. Again, support groups and respite care are essential to maintaining a healthy outlook.
Alzheimer's Disease and related dementias create a stressful situation for both patient and caregivers. Knowing how a race or culture may respond to the challenge can be most helpful to the health care provider. Taking developmental tasks into account can make it easier for caregivers to get the support they need whether they choose home care or facility placement.
Anonymous. (1998). About Alzheimer's, [Internet]. Alzheimer's Association of Greater San Francisco Bay Area [1999, February 7].
Boyd, M. (1998). Health Teaching in Nursing Practice. (3rd ed.). Stamford, Conn.: Appleton & Lange.
Hendrie, H. C. (1998). Epidemiology of dementia and Alzheimer's disease. American Journal of Geriatric Psychiatry, 6(2 Suppl 1), S3-18.
Lautenschlager, N. T., Cupples, L. A., Rao, V. S., Auerbach, S. A., Becker, R., Burke, J., Chui, H., Duara, R., Foley, E. J., Glatt, S. L., Green, R. C., Jones, R., Karlinsky, H., Kukull, W. A., Kurz, A., Larson, E. B., Martelli, K., Sadovnick, A. D., Volicer, L., Waring, S. C., Growdon, J. H., & Farrer, L. A. (1996). Risk of dementia among relatives of Alzheimer's disease patients in the MIRAGE study: What is in store for the oldest old? Neurology, 46(3), 641-650.
Lipson, J., Dibble, S., Minarik, P. (Ed.). (1996). Culture and Nursing Care: A Pocket Guide (3rd ed.). San Francisco: UCSF Nursing Press.
Ott, A., Slooter, A. J., Hofman, A., van Harskamp, F., Witteman, J. C., Van Broeckhoven, C., van Duijn, C. M., & Breteler, M. M. (1998). Smoking and risk of dementia and Alzheimer's disease in a population-based cohort study: the Rotterdam Study. Lancet, 351(9119), 1840-1843.
Thomas, B. M., Starr, J. M., & Whalley, L. J. (1997). Death certification in treated cases of presenile Alzheimer's disease and vascular dementia in Scotland. Age & Ageing, 26(5), 401-406.