After Decades of Study, We Still Can't Figure Out Alzheimer's

He's studied the disease for more than 35 years, but Peter Rabins is still taken aback by caregiver resilience and lack of general knowledge.

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As a psychiatrist who has cared for people with Alzheimer's disease and studied caregiving and the illness for 35 years, it is perhaps surprising that I am still taken aback by several aspects of the journey:

THE RESILIENCE OF MANY CAREGIVERS in spite of the ravages of the disease in the people they care for, the disruption the illness causes in their lives, and the demands that result from their needing to take on multiple new roles. This is true in many situations of imposed illness and loss; but we hear so much about the adverse effects of caregiving that it is important to note that adaptation and growth are the norm -- not the exception.

THE DEMONSTRATION THAT MANY PEOPLE with Alzheimer's disease experience a positive quality of life in spite of the illness. The devastation caused by Alzheimer's can be profound, and, not surprisingly, it is demoralizing to many of those who have the disease. Nonetheless, just as is true in many other difficult disease states, including late-stage cancer, spinal cord injury, and stroke, many people find ways to continue to enjoy interacting with others and being as active as possible.

Most individuals who live into the advanced stage of any dementia require 24-hour care and have needs that cannot be met by even the most caring and diligent loved ones.

I have been particularly surprised by the many people who throughout their lives relied on their intellect for work and pleasure but who, upon developing the illness, find that being a loving grandparent, experiencing the outdoors, or engaging in conversation can and does give them a great deal of pleasure. I do not want to be unrealistic; no one would want to develop dementia, and the losses experienced by people with the illness are great. But for many, severe illness leads to an enjoyment of living in the moment that they did not have before becoming ill.

THE LOSS OF FRIENDSHIPS and long-term relationships that come about when one member of a couple develops Alzheimer's. Perhaps it should not be surprising that couples who are used to relating to other couples would find it hard to relate to a single member of a couple. But just as the adjustment friends make for those who are widowed, the small effort it takes to maintain contact with the healthy spouse is meaningfully rewarded for everyone concerned in many instances.

THE LACK OF KNOWLEDGE about Alzheimer's and dementia among health practitioners at all levels. Many diseases of the brain and nervous system seem more mysterious and difficult to understand than is necessary or appropriate. The principles of care rely a great deal on common sense, the offering of emotional support to patients and family members in difficult circumstances, and steering people to the available resources and social service agencies. Most caregivers do better over time in spite of the ravages of the disease; professionals can aid in this process by listening, offering support, correcting misconceptions, and suggesting that people use the community resources that are available.

MOST OF THE DISEASES THAT CAUSE DEMENTIA are gradually and relentlessly progressive. Eventually they devastate not only the cognitive capacity of the person but also their ability to care for themselves and to control the basic functions of life: walking, speaking, swallowing, controlling bladder and bowel function. As a result, most individuals who live into the advanced stage of any dementia, including Alzheimer's, require 24-hour care and have needs that cannot be met by even the most caring and diligent loved ones. As a result, I believe that long-term support is a necessary part of a dementia care system. Understanding this should lead us to ensure that the care provided in these settings meets quality standards, but should also help us understand that placing a loved one in long-term care is not a failure of love, spirit, or commitment but an almost inevitable consequence of a devastating illness. This would require a change at the level of society that will be hard to bring about, just as it has been hard to de-stigmatize those with chronic mental illness. The more this issue is discussed openly, the more people will recognize that good long-term care is a necessary and important part of a comprehensive health care system.

Image: Ivelin Radkov/Shutterstock.

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Peter V. Rabins has been on the faculty of the Johns Hopkins School of Medicine since 1978 and is now professor for Alzheimer's and related disease and co-director of the division of geriatric psychiatry and neuropsychiatry.

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