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Who Is Worse Off: People with Alzheimer’s or Their Caregivers?

Though they look through the prism of the future from different angles, people with Alzheimer's disease and their loved ones will likely find their lives dramatically altered after the onset and diagnosis of AD.

Certainly, the person who develops the disease is facing a life-altering and ultimately terminal disease. However, because of the intensive care needed by people with advanced Alzheimer's, and the pain involved in watching a loved one gradually lose their cognitive abilities, some people wonder if the caregivers endure more than the person with the disease.

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Every case of Alzheimer's disease is as unique as the individual with the disease, and every caregiver brings unique traits to their caregiving journey. Each configuration, also, has different resources, different support systems and different coping skills. Thus, there is no one answer, and if there were the answer would likely change, depending on the challenges of any particular day.

A quick look at the Alzheimer's journey from inside

At this time, Alzheimer's disease is considered incurable. People who develop AD tend to die from seven to 10 years after diagnosis, though some can live as long as 20 years. Still, upon diagnosis, the person diagnosed knows instantly that his or her life is going to change dramatically.

  • Though testimonies from people with AD illustrate that many people with dementia continue to enjoy life for a number of years, there is no denying that their life will change dramatically, over time.
  • The person with AD must come to terms with the fact that as time moves forward, he or she is likely to lose the ability to live independently. Worse for many people, is the realization that one's memories and ability to reason will likely be stripped away. Their feeling of dignity as a human being is subject to being altered, as well.
  • Most people like feeling as though they have some control over their lives. The person with Alzheimer's lives in a world that is increasingly confusing, and often frightening, as the stages of the disease move forward. Making sense of one's surroundings becomes nearly impossible.
  • Paranoia is an understandable development in many people with Alzheimer's. When the brain tells a person one thing and everyone around this person is saying the opposite, it would be natural to wonder if people are playing tricks on them, lying to them or even stealing from them. Paranoid behavior in AD is quite common and causes great pain to both the person with the disease and the caregiver.
  • People with the disease generally become completely dependent on others, which is hard enough for most people. However, with AD, the person will likely lose the ability to remember who their caregivers are from moment to moment. Spouse, child, grandchild? Eventually, only the feeling of being dependent on a complete stranger may remain.

The caregiver's journey

Caring for a person with Alzheimer's is intensive and stressful, and it can be all-encompassing. After a loved one is diagnosed with Alzheimer's disease people generally suffer through an agonizing period of grief. It seems impossible to accept the fact that their spouse or parent has a disease that will rob him or her of personality, memories and the ability for self care. Yet, there is no alternative but to accept the diagnosis and move forward.

  • One of the first things most people do after the diagnosis is to plan for the inevitable changes Alzheimer's brings. However, with Alzheimer's there are many variables. Some people do quite well for months or even years. Others will decline quickly. Yet, the family must try to look ahead at the changes that will most likely occur, and plan with their loved one how best to manage the disease and future care.
  • With AD, people can change moods in an instant. The caregiver may be constantly on edge, worrying about mood swings, incontinence issues or the person wandering away and getting lost. Some people with AD have significant personality changes, which is distressing to loved ones.
  • Watching the slow process of Alzheimer's rob a loved one of memories and abilities can be excruciating. People who love and care for someone with Alzheimer's disease face the daily task of accepting the losses their spouse or parent must endure, all the while knowing that at the end of this journey they will suffer the second loss of their loved one through death.
  • The paranoia that often accompanies Alzheimer's can turn the diagnosed person against his or her caregiver, leaving the caregiver feeling helpless and ineffective.
  • Alzheimer's disease is progressive and there is a downward spiral through recognized stages, however that doesn't mean the disease leads down a straight path. This uncertainty can contribute to the caregiver feeling uniquely alone and isolated, even when support services are offered.

Considering the challenges that people with Alzheimer's disease and their caregivers face, is there any joy at all in the journey? For many, yes. Caregivers can and do find joy in caring for someone they love, even if exhaustion and occasional impatience can make them wonder how long they can continue this intensive care. Most people eventually need to include paid outside help.

As for the person with Alzheimer's, many find a new determination after the diagnosis to live each day as fully as possible. They are aware of the changes that loom in their future, which makes the present more precious.

Who has a more difficult time? I believe that question is like most other quality of life questions. The attitude of the people involved, as well as their resilience, their flexibility and ability to accept what life hands them, will make the answer to this question unique for every Alzheimer's family.

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.
 






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