Dementia
Impact Of Dementia
Dementia poses considerable medical, social, and economic concerns as it impacts individuals, families, and health-care systems throughout the world (National Institute on Aging and National Institutes of Health 1999; O'Shea and O'Reilly 2000). Not surprisingly, increasing attention and resources have been directed toward the medical aspects of dementia—with the goal of better understanding the various causes, treatments, and possible cures for the diseases that produce dementia's debilitating symptoms.
Greater attention is being directed as well toward the concerns of families of persons with dementia. Previously known as the "hidden victims," family caregivers gained considerable attention throughout the 1980s and 1990s. With the majority of persons with dementia being cared for in the community, it has been suggested that the coping mechanisms and resources of families may be severely tested (Dunkin and Anderson-Hanley 1998; O'Shea and O'Reilly 2000). During the prolonged care period characteristic of Alzheimer's disease and other demential conditions, caregivers face the potential for social isolation; financial drain; and physical duress (Clyburn et al. 2000). Women are particularly vulnerable, as they make up the majority of care providers (Gwyther 2000).
With the development and expansion of programs including support groups, respite care, adult day care, and a growing number of specialized care facilities, assistance for families is increasingly available. Use of such assistance, however, varies widely depending upon availability, cost, quality, and simply knowing that these resources exist. Family expectations and guilt can also play a role in their use, as do cultural attitudes about both dementia and caregiving obligations (Ikels 1998; Yamamoto-Mitani et al. 2000). Additionally, the use of such services does not necessarily alleviate the strains of caregiving. The decision to use outside services can pose its own challenges, and, especially in the case of moving a person with dementia into a care facility, the decision-making process is often a stressful and contentious one. Even after institutionalization, much of the family's experience of caregiving burden may remain (Levesque, Ducharme, and LaChance 2000).
In addition to the medical and caregiving aspects of dementia, new interest is being directed toward the social needs of persons with dementia. Some advancements have focused on developing supportive environments for persons with dementia (Day, Carreon, and Stump 2000). Others have focused on behavior management (Kaplan and Hoffman 1998) and modes of effective communication and interpersonal interaction (Feil 1993; Zgola 1999). Very little attention, however, has focused on understanding the personal and emotional experiences of having dementia. One exception is Diana Friel McGowin's (1993) account of her experiences with Alzheimer's disease. Another is the call to mental health professionals for person-centered therapies for persons with dementia (Cheston and Bender 1999).
As the population of older adults—and thus the number of persons affected by dementia— increases, it is expected that the subjective experiences of persons with dementia will garner even greater interest. Overall, our knowledge and understanding of the diseases that produce dementia is expanding at a rapid rate. To those affected by dementia, however, these advances can not come soon enough.
See also: ACQUIRED IMMUNODEFICIENCY SYNDROME (AIDS); ALZHEIMER'S DISEASE; CAREGIVING: FORMAL; CAREGIVING: INFORMAL; CHRONIC ILLNESS; DISABILITIES; ELDER ABUSE; ELDERS; HEALTH AND FAMILIES; HOSPICE; RESPITE CARE: ADULT
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RONA J. KARASIK
Additional topics
Marriage and Family EncyclopediaFamily Health IssuesDementia - Signs And Symptoms, Types And Causes Of Dementia, Diagnosing Dementia, Impact Of Dementia