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Caregiver Resources


FAQs about Alzheimer’s Disease

1. How are Dementia and Alzheimer’s disease alike or different?
Dementia is not a disease, but rather a group of symptoms characterized by a decline in intellectual functioning severe enough to interfere with a person’s normal daily activities and social relationships. Alzheimer’s disease is but one of the many types of dementia, but is the most common cause of dementia in older persons. It is marked by progressive and, at present, irreversible declines in certain cognitive functions. These impairments may include declines in memory, time and space orientation, abstract thinking, the ability to learn and carry out mathematical calculations, language and communication skills, personality changes, impairment of judgment, and the performance of routine tasks. There are many other forms of dementia but the second most common form is vascular dementia which is caused by destruction of neurons and their connections in the brain, due to impaired blood supply or stroke. Other forms of dementia include Lewy Body dementia, fronto-temporal dementia – formerly known as Pick’s disease- and Creutzfeldt-Jakob disease. Dementia can also develop from other diseases affecting the nervous system, including Parkinson’s disease and AIDS.

2. How many people suffer from Alzheimer’s disease?
It is estimated that up to 4.5 million people currently suffer from Alzheimer’s disease in the United States, but this number may miss the large number of people with mild symptoms or those who have not been properly diagnosed. The proportion of people with the disease doubles every 5 years beyond the age of 65 with a peak prevalence of approximately 45% for persons over 85 years of age. A federal government publication estimated that in the year 2000 there were approximately 35 million Americans ages 65 or older with some form of dementia. These numbers demonstrate that Alzheimer’s disease and other forms of dementia are a public health concern.

3. What are the stages in the development of Alzheimer’s disease?
Alzheimer’s is a progressive disease; the symptoms grow worse over time. Yet, it is also a variable disease. Symptoms progress at different rates and in different patterns. The appearance and progression of symptoms will vary from one person to the next. The most common classification of stages is early, middle, late and end stage, although there are other systems of staging that have seven or twelve sub-stages. Some of the common symptoms for each stage include:

Early Stage:

  •  difficulty recognizing family and friends
  •  getting lost in familiar surroundings
  •  losing valuable items
  •  possible depression due to stress, frustration, or fatigue

Middle Stage:

  •  problems with routine tasks
  •  difficult managing money, driving, or legal affairs
  •  changes in personality and judgment
  •  difficulties with home maintenance, housekeeping, and cooking

Late Stage:

  •  anxiety, paranoia, suspiciousness, agitation
  •  confusion and memory loss
  •  difficulty with activities of daily living, such as feeding and bathing
  • disorientation
  •  hallucinations and delusions
  •  sleep disturbances
  •  wandering or pacing.

End Stage:

  • loss of appetite and weight loss
  •  loss of bladder and bowel control
  •  loss of speech
  •  total dependence on caregiver
  •  hospice care becomes desirable

4. Are memory problems the only symptom of Alzheimer’s disease (AD)?
Mild forgetfulness and memory delays often occur as part of the normal aging process. With normal aging of the brain, older individuals simply need more time to learn a new fact or to remember an old one. Persons afflicted with Alzheimer’s disease (AD) will, however, find these symptoms progressing in frequency and severity. Everyone, from time to time, will forget where they placed their car keys; an individual with AD, however, may not remember what the keys are for. In general, if memory loss increases in frequency or severity, begins to worry (makes an impression on) friends and family, or begins to interfere with daily activities (employment tasks, social interactions, and family chores, for example), it is advisable to seek out qualified professional advice. A geriatric specialist or neurologist may help in this diagnosis. It is advisable to fine practitioners with extensive knowledge, experience, and interest in dementia and memory problems.

There are many other behaviors associated with varying stages of Alzheimer’s disease. In most cases, the disease tends to be progressive. It can cause unusual and unpredictable behaviors that can be challenging to caregivers. As the illness progresses, commonly encountered symptoms and problems include:

· Inability to carry out usual tasks
· Poor judgment
· Changes in sleep patterns
· Personality changes
· Aggression, agitation, and combativeness
· Hallucinations
· Incontinence
· Wandering or pacing
· Poor eating habits
· Sexually inappropriate behavior
· Communication disturbances or loss

5. Do we know what causes Alzheimer’s disease (AD)?
Scientists do not yet fully understand what causes Alzheimer’s disease, but it is clear that Alzheimer’s disease develops as a result of a complex series of changes inside the brain that take place over time. Age is the most important known risk factor for Alzheimer’s disease. There are recent studies that also suggest the risk factors for stroke, vascular dementia, and Alzheimer’s disease overlap a great deal. For example, stroke risk factors such as high cholesterol levels, high blood pressure, and diabetes are also risk factors for AD. As with many disease processes, certain lifestyle risk factors also contribute to the possibility of Alzheimer’s disease. They can include smoking, diets low in antioxidants, fruits, and vegetables, obesity, and even long-term stress. Scientists continue to research genetic factors, biochemical disturbances, inflammation processes, and immune processes to find the cause.

6. How long do people with Alzheimer’s disease live after developing the disease?
Persons with Alzheimer’s disease often live for years with the disease, eventually dying from pneumonia or other diseases. The duration of Alzheimer’s disease from time of diagnosis can be 20 years or more. The average length of time from onset of symptoms is thought to be in the range of 4 to 8 years. People are best treated for the disease when there is good communication, coordination and cooperation among the people who provide care. The primary caregiver, the extended family, the physician, and the rest of the healthcare team all play important roles in providing care. A comprehensive assessment should be performed when any significant change occurs in the patient’s physical or cognitive state.

7. What are the best tips for providing care for a person with Alzheimer’s disease?

  • Plan for daily care by having routines and schedules for sleeping, eating and daily activities.
  • Allow plenty of time for daily tasks to avoid frustration for you and the person with AD.
  • Help the person with AD to use the toilet regularly.
  • Anticipate needs such as being hungry, thirsty or tired.
  • Adapt daily tasks, modify previous hobbies, and provide mentally stimulating activities that both you and a person with AD can enjoy together.
  • Create a calm environment by limiting distractions, reducing loud noises, music or talking, keeping items used regularly in familiar places, clearing counters, hallways, and bathrooms from clutter.
  • Be flexible and remember that a person with Alzheimer’s disease may have varying levels of ability from day to day or even from hour to hour. Adjusting your expectations to match their abilities will make caregiving easier for both of you.
  • Take time for yourself as a caregiver. Connect with friends and family, take breaks from caregiving, and have outlets to express your feelings. This will reduce your daily stress and make you a better caregiver for the days to come.
  • Learn as much as you can about the disease.