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The progressive nature of Alzheimer's disease has been called “the long goodbye” for good reason: Many losses occur along the illness trajectory. Some of these losses, such as psychosocial death (i.e., the loss of interpersonal relationship with the affected person), may be even more difficult to manage for family caregivers than eventual bodily death. When someone is diagnosed with Alzheimer-type dementia, it is usually their spouse or adult child whose relationships with them are most affected. Currently, over 5 million people in the United States have Alzheimer's disease. Of those who have the disease, three fourths live out in the community, usually with family members. Equally impressive is the fact that 75 percent of the care given to people with Alzheimer's disease is provided by family members. This entry discusses the effects of Alzheimer's disease and the disease progression on family relationships. Before the impact of Alzheimer's on family relationships can be understood, it is critical to understand the disease itself.

Alzheimer's-Type Dementia

Dementia is a broad term that means a progressive decline in cognitive function. It can be caused by a number of conditions including Parkinson's disease, Alzheimer's disease, AIDS, vascular problems, stroke, malnutrition, severe alcoholism, and hypothyroidism. The American Psychiatric Association explains that this condition involves developing multiple cognitive impairments, including memory, and at least one of the following: aphasia (difficulty with language), apraxia (loss of fine motor skills), agnosia (loss of ability to recognize familiar people, places, and objects), or disturbance in executive function. In addition, the cognitive deficits experienced by the individual must be severe enough to cause impairment in daily functioning as well as represent a decline from a previously higher level of functioning. Although dementia can be caused by several different conditions, the most common cause of dementia is Alzheimer's disease.

Alzheimer's disease is a progressive brain disorder that usually causes the person to suffer from all of the cognitive impairments mentioned above. In addition, as the disease progresses, changes in behavior and personality often occur such as anxiety, suspiciousness, agitation, and delusions.

Some experts have described Alzheimer's as occurring in stages, with each stage ushering in new symptoms and additional cognitive decline. Arguments vary as to the number of stages involved in the progression of the illness, but generally, physicians and researchers will agree upon three broad periods of impairment known as mild, moderate, and severe dementia—each corresponding to increasing levels of impairment. As people with Alzheimer's progress through these various stages, their relationships with family and friends experience increasing strain.

It is important to explain the multifaceted nature of Alzheimer's disease because it is often misunderstood by the general population as simply a memory disease, and therefore, the true devastation on the person and his/her family is underestimated. The most intense impact is usually felt by the family member who serves as the primary caregiver for the person with dementia. This is usually the spouse or an adult child.

Alzheimer's Disease and Changes in Spousal Relationships

For those who are married to someone with Alzheimer's disease, it is evident that no family relationship bears the brunt of the disease as much as the marital relationship. Roles are likely to shift or reverse as the partner with dementia is no longer cognitively able to perform many daily tasks or share in important household decisions. It is common for the couple to experience a loss of intimacy; changes in the sexual relationship; and feelings of guilt, fear, frustration, and great isolation.

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