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.
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