Alzheimer's Disease and Other Dementias
Abstract and Keywords
Dementia is not a disease, but a group of symptoms so severe that they inhibit normal functioning. Alzheimer's disease is the most common type of dementia in older persons impacting not only the person with the illness but the entire family. Obtaining an accurate diagnosis is essential in order to assure appropriate and timely care and to exclude reversible causes of dementia. Social workers can play key roles throughout the course of the illness as educators, therapists, supporter and advocates for improved policies and services.
Dementia is not a disease; it refers to a loss of mental functions in two or more areas (such as language, memory, visual and special abilities, and judgment) to the extent that the person's daily life is affected. Although some slowing in cognitive functions and memory loss often accompanies aging, such changes are usually very mild, and, in contrast to the changes associated with dementia, they do not interfere with daily functioning. Dementia is also associated with mood, behavior, and personality changes (Wicklund & Weintraub, 2005).
Dementia is not a necessary part of aging, but its prevalence increases with age. Alzheimer's disease, which affects more than 5.4 million persons in the United States, is the most common source of dementia (Alzheimer's Association, 2012). The risk of developing Alzheimer's disease doubles every 5 years after 65 years, affecting ∼2% of the population aged 65–74, 19% of those aged 75–84, and 46% of those aged 85 and older (Alzheimer's Association, 2012). Accordingly, nearly 13% of people older than 65 years have Alzheimer's disease. By the year 2050, between 11 and 16 million persons are expected to be diagnosed with the illness.
Causes and Types of Dementia
Many conditions—such as depression, delirium, alcohol or drug use, malnutrition, vitamin use, hormone imbalance, and infections, as well as medications—can cause dementia-like symptoms, or reversible dementia. In such cases, once the cause is discovered and treated, the symptoms may disappear. Other causes of reversible dementia include metabolic abnormalities that affect the thyroid, hypoglycemia, pernicious anemia, nutritional deficiencies (including dehydration), emotional problems, and infections such as meningitis and encephalitis.
Dementia is considered irreversible when there is no cure for the symptoms. Consequently, it is critical that any diagnosis of dementia exclude conditions that may be treatable or even cured. Alzheimer's disease is the leading cause of dementia among older persons but there are also non-Alzheimer's dementias caused by neurodegenerative diseases and vascular disease. These include Lewy Body disease, primary progressive aphasia, frontotemporal degeneration, Pick's disease, Parkinson's disease, Huntington's disease, AIDS, and vascular dementia (Mesulam, 2000).
The exact cause of Alzheimer’ disease (AD), the most common form of dementia in older persons, is still not known, although the greatest risk factors are increasing age and a family history of the illness. Other possible risk factors are high cholesterol, hypertension, diabetes, and low levels of the vitamin folate. Although there are no clear preventive measures against AD, research is on to examine the roles that mental, physical, and social activities may play as protectors (National Institute of Aging [NIA], 2006).
Memory loss is the most notable symptom, but AD also affects language, object recognition, and functioning. Common behavioral symptoms include psychosis, depression, agitation, and wandering. Unfortunately, early symptoms of the disease may be ignored by family members, who perceive them as a normal part of the aging process. Such delayed responses mean that interventions and medications, such as cholinesterase inhibitors, that prevent the breakdown of acetylcholine (a chemical in the brain that affects memory and can help to improve cognition), and Memantine, a drug that regulates glutamate (a brain chemical that affects learning and memory), are often not used. Delays in treatment also prevent the person with the illness from being actively involved in care planning (Kuhn, 2007).
Alzheimer's disease tends to progress through a series of stages, although there is also great heterogeneity among persons with the illness, meaning that the progression itself is not uniform (Cottrell, 2007). In the earliest stage people have difficulty remembering new information.
As the disease progresses, symptoms become so severe that they prohibit normal functioning, and at the late stage, the person is unable to recognize familiar people or places, forgets how to do simple tasks, and has difficulty speaking, reading, and writing. Often there are pronounced personality changes. Eventually, total care for the person is required.
Diagnosing the cause of dementia requires a comprehensive physical examination, including laboratory tests, an imaging test, and a thorough medical history. Such examinations can be carried out by an Alzheimer's Disease Center funded by the NIA. There are 31 of these centers in the United States and each specializes in clinical services for persons with dementia, including assessment, treatment, and research (U.S. National Institutes of Health, 2007). Physicians, particularly geriatricians, may also screen for dementia. A cognitive screening tool such as the Mini-Mental State Examination can help to determine the level of impairment, although more extensive testing is required for a more accurate diagnosis. Computerized tomography or a magnetic resonance imaging scan is often a part of an initial evaluation. The newest guidelines for diagnosing dementia due to Alzheimer's disease are available in the report of the National Institute on Aging and Alzheimer's Association workgroup (McKhann et al., 2011). The Diagnostic and Statistical Manual of Mental Disorders, 4th edition (American Psychiatric Association, 1994); the Presidential Task Force on the Assessment of Age-Consistent Memory Decline and Dementia (American Psychological Association, 1998) and The Quality Standards Subcommitee of the Academy of Neurology have also written on the best evidence for assessing and managing dementia (Doody et al., 2001).
Dementia and the Family
There is no greater impact of the illness than that on the informal caregiver, the family member who continues to provide the bulk of care throughout the course of the illness. These caregivers have been termed “The Hidden Victims” (Zarit, Orr, & Zarit, 1985). They spend more time per week providing care than do other professional caregivers, while also reporting greater strain and impacts on employment, mental and physical health, and leisure time (Alzheimer's Association and National Alliance for Caregiving, 2004).
The impact of caregiving can be particularly severe on those who combine it with employment and find that they must juggle work with caregiving responsibilities. Dementia can strain many family relationships, especially where there are insufficient familial and financial resources to assist with the care needed. The primary caregiver may feel overwhelmed and resentful toward siblings who may not be as involved in the caregiving process. Marital relationships can be stressed as caregivers become exhausted, young children may feel neglected, and caregivers may be increasingly guilty that they are not meeting other family needs. Moreover, families may disagree about the type of care required and may have differing attitudes toward services and institutionalization.
Culture and Dementia
Culture can be a major factor shaping persons’ responses to dementia and consequently the course of care. Ethnic beliefs and values can influence the way in which symptoms are perceived and thus acted upon. Whether memory loss and behavior change among older persons are considered as normal and expected, the result of evil spirits, or stress can strongly influence the willingness to seek treatment or services. Thus, families may perceive erratic behavior in an older person as a normal part of aging and be reluctant or even resistant to seek care. Caregiver roles may be strongly influenced by traditional norms and values that dictate their patterns of involvement and use of formal services. In fact, in some cultures the term “caregiver” does not exist, as providing assistance to older persons is simply a normative duty. However, much heterogeneity exists among groups, and consequently, individuals may vary significantly in their adherence to specific cultural values and expectation.
Roles of Social Workers
Social work interventions can play a major role at the micro and macro levels. They can assist both the individual with the illness and the family to adapt to the diagnosis and deal with reactions such as anger, loss, and grief. Throughout the course of the illness social workers can play important roles as educators, therapists, and brokers who assure that persons are linked with needed services. Social workers must be cognizant of the influence that culture may have on any individual while also guarding against assumptions and stereotypes that undermine the heterogeneity also existing among ethnic populations.
Social workers can help to ensure that individuals receive accurate diagnoses and that they have essential information and resources to support them throughout the course of the illness. They can act as brokers and links to services such as case management, respite care that temporarily relieves the caregiver, day care, and support groups. As therapists they can be critical in helping persons adjust to and deal with their many conflicting feelings and concerns, identify areas of stress, facilitate the expression of grief and expectations, and develop future plans. Within institutions, social workers can help to ensure that staff is educated about dementia and responsive to the special needs of this population (Johnson & Hartle, 2007).
As advocates and at the system, community and policy levels, social workers have major roles in translating cases into cause as they work toward the development of policies and programs that address the myriad needs of those with dementia and their families. This must include advocating for more funding for research and services that can assist in alleviating the burdens associated with the illness.
Alzheimer's disease and other dementias are major concerns and challenges for older persons and their families, and indeed, for all of us. Dementia has become a major public health problem as the numbers it affects continue to soar. Similar to other public health issues, it requires a plurality of interventions and professionals to provide care and assistance to the person with the illness and the family. Social workers, with their knowledge and skills and with their focus on the individual within the environment, can play key roles in providing this care. As educators, counselors, advocates, and researchers, they can help to assure that needs are met effectively and appropriately. At the same time, it is essential that they always recognize that the person is not the disease but is a person who has a specific illness. This recognition and understanding is critical as a foundation for empathic and sensitive care. Those confronting dementia and their families require knowledgeable and sensitive practitioners who will effectively guide them and assist them through its many phases. Consequently, dementia, as it places immense demands on individuals, families, and societies, may also be perceived as a major challenge for the caring profession of social work.
Alzheimer's Association. (2012). Alzheimer's Disease Facts and Figures. Chicago: Author.Find this resource:
Alzheimer's Association and National Alliance for Caregiving. (2004). Families care: Alzheimer's caregiving in the United States, Chicago: Alzheimer's Association.Find this resource:
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.Find this resource:
American Psychological Association, Presidential Task Force on the Assessment of Age-Consistent Memory Decline and Dementia. (1998). Guidelines for the evaluation of dementia and age-related cognitive decline. Washington, DC: American Psychological Association.Find this resource:
Cottrell, V. (2007). Assessment of individuals with dementia. In C. B. Cox (Ed.), Dementia and social work practice: Research and interventions (pp. 45–68). New York: Springer.Find this resource:
Doody, R., Stevens, J., Beck, C., Dubinsky, R., Kaye, J., Gwyther, L., et al. (2001). Practice parameter: Management of dementia (an evidence based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 56, 1154–1166.Find this resource:
Johnson, J., & Hartle, M. (2007). Social work and dementia care within adult day services. In C. B. Cox (Ed.), Dementia and social work practice: Research and interventions (pp. 305–320). New York: Springer.Find this resource:
Kuhn, D. (2007). Helping families face the early stages of dementia. In C. B. Cox (Ed.), Dementia and social work practice: Research and interventions (pp. 111–128). New York: Springer.Find this resource:
McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. (1984). Clinical diagnosis of Alzheimer's disease: Report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology, 34, 939–944.Find this resource:
McKhann, G., Knopman, d., Cherkow, H., Hyman, B., Jack, C., Kawas, C., Koroshetz, W., Manly, J., Mayeux, R., Mohs, R., Morris, J., Rossor, M., Scheltens, P., Carrillo, M.,Thies, B., Weintraub, S., & Phelps, C. (2011). The Diagnosis of dementia due to Alzheimer's disease: Recommendations from the National Institue on Aging-alzheimer's Association workgroups on diagnosic guidelines for Alzheimer's disease, Alzheimer's & Dementia. The Journal of the Alzheimer's Association, 7, 263-269.Find this resource:
Mesulam, M.-M. (2000). Aging, Alzheimer's disease, and dementia: Clinical and neurobiological perspectives. In M.-M. Mesulam (Ed.), Principles of cognitive and behavioral neurology (pp. 439–522). New York: Oxford University Press.Find this resource:
National Institute on Aging. (2006). Dramatic changes in U.S. aging highlighted in new census. NIH media report. Washington, DC: Author.Find this resource:
Wicklund, A. K., & Weintraub, S. (2005). Neuropsychological features of common dementia syndromes. Turkish Journal of Neurology, 11, 566–588.Find this resource:
Zarit, S., Orr, N., & Zarit, J. (1985). The hidden victims of Alzheimer's disease. New York: NYU Press.Find this resource:
Alzheimer's Disease Education and Referral (ADEAR) Center. http://www.alzheimers.org/adcdir.htm
Mather Lifeways – Powerful Tools for Caregivers. http://www.matherlifeways.com/re_powerfultools.asp
The caregiver guide. National Institute on Aging. http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm
Caregiver resources from the Alzheimer's Association. http://www.alz.org/care
Alzheimer's caregivers: How to cope? Mayo Clinic. http://www.mayoclinic.com/health/alzheimers-caregiver/AZ00038
Alzheimer's Caregiver Support Online. http://alzonline.net/
National Alzheimer's Association. http://www.alz.org