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Caregiving Through Alzheimer's Disease
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Resource Description: 
Thirty one percent of the adult population age 20 to 75 provide informal care to a family member or friend who is ill or disabled.
Caregiving issues surrounding a person with a cognitive disease are unique, and planning for decline in health is critical for the caregiver.
The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.
Episode number: 
1508

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Caring for a family member with Alzheimer’s is a cause for stress, exhaustion, depression, caregiver burnout, and other health problems for the caregiver.

A diagnosis of Alzheimer's Disease can be devastating for a person and their loved ones.  Caregiving issues surrounding a person with a cognitive disease are unique, and planning for decline in health is critical for the caregiver.

What is Alzheimer's Disease?

Alzheimer's disease is the result of the destruction of nerve cells (neurons) in the brain.  We don't know what causes it to happen, how to prevent it or how to cure it.  It's progressive, meaning that symptoms worsen over time, and irreversible.  Alzheimer's affects everything – cognitive ability, spatial ability, reasoning ability, decision-making ability, vision, balance, and even the immune system.

Who gets Alzheimer's Disease?

Today, over 5 million Americans live with some form of Alzheimer's disease and another 500,000 new cases are diagnosed each year.  And, since it's a disease that increases with age, the numbers will soar as our average life expectancy increases and baby boomers grow old.  The number of people in the United States with Alzheimer's is expected to more than triple by the middle of this century.

Risk Factors

We know that advancing age is the number one risk factor for developing Alzheimer's disease and heredity plays an important but smaller role.  There are also several lifestyle factors that may be implicated, including high cholesterol, high blood pressure, being overweight, getting little exercise and eating an unhealthy diet.  Other probable risk factors are head injuries, brain inflammation and exposure to toxins.    

Diagnosing Alzheimer's Disease

Diagnosing Alzheimer's can be challenging, especially in early stages.  Quite often, both patients and their families will try to cover up problems.  In the past, a definitive diagnosis could only be made through an autopsy.  Today, a PET scan coupled with neuro-psychology testing can give doctors a fairly complete picture.     

Alzheimer's goes through three general stages called early, mid and late stage, or mild, moderate and severe.  In early-stage Alzheimer's, mood swings and the weakening of mental abilities begin to be noticeable.  People may begin to have trouble with driving, paying bills, and other tasks of daily life. As the disease progresses, people have difficulty with simpler tasks, such as using appliances, using the telephone, and dressing. By the mid-stage, major changes in behavior develop, and people may begin to forget where they are. In the late-stage, physical problems dominate; people have trouble walking, talking, swallowing, and controlling their bowels and other body functions. Eventually, the disease is fatal. 

The disease follows a unique course for each patient. We don't know how long it will take an individual to go through each stage and wide variations are possible. Survival could be as few as a couple of years in more aggressive forms of the disease, but some people may live for 15 to 20 years.  

The Role of the Caregiver

If you're a daughter or son, sibling, parent, or spouse, or even a friend, some day you may find yourself in the role of "family caregiver". More than 52 million Americans are already there.1They wear many hats –that of companion, personal shopper, financial manager, chauffeur, housekeeper, cook, personal care assistant, advocate, counselor, nurse, emotional support provider and more.  They are a lifeline for the people they support and our long term care system.  A study by AARP reveals that at 350 billion dollars, the economic value of non-compensated caregiving exceeds 2006 Exxon Mobile profits.

While the caregiving role can be enormously rewarding, it also means a lot of sacrifice.  It may start with just a few hours a week.  Usually the need expands and with each increase, caregivers forfeit more of their personal lives.  The average family caregiver provides nearly 18 to 20 hours of care a week in addition to holding down a job and managing a family.2  It is not unusual for caregivers to be forced to leave the workforce as needs escalate.  Caregiving can last from less than a year to several decades. 

Caregiving comes with a whole host of conflicting emotions.  Self doubt might be at the top of the list.  Are you making the right decisions?  Are you following the doctor's instructions correctly?  When you cannot fix the unfixable you may become frustrated.  You grieve as you bear witness to a loved one's decline.  You grieve for the life you are no longer living.  Guilt follows hard on the heels of anger and resentment. 

Just as overwhelming is the never-ending "To Do" list.  Most caregivers face a landscape of too little support at too high a cost.  While improvements are slowly being made, our healthcare system just isn't set up to deal with those who require long term home care.          

What is caregiver burnout?

Care giver burnout happens when caregivers try to do more than they are able to do.  It's physical, emotional and mental exhaustion and leaves the caregiver vulnerable to illness.  The chronic stresses of being a caregiver can lead to cardiovascular disease, hypertension, stroke, and a compromised immune system.  

Caregivers are often so preoccupied with the needs of their loved ones that they fail to recognize their own warning signals.  Caregiver burnout symptoms are similar to those for anxiety and depression and include:

  • Sleep disturbances and fatigue
  • Lost interest in once-pleasurable things
  • Changes in appetite, weight, or both
  • Getting sick more often
  • Withdrawal from social contacts
  • Persistent feelings of worry, hopelessness and sadness
  • Irritability
  • Low self-esteem
  • Overreacting to minor issues
  • Decreased productivity
  • Alcohol or drug abuse

To evaluate your level of caregiving stress take a simple test from the PBS Caregiver's Handbook(part of the web site for our 90-minute program Caring for Your Parents).  Go to Caregiver Self-Assessment Questionnaire (PDF)

If you find you have a number of symptoms associated with high levels of physical and emotional stress, contact your primary care doctor for an appointment, take the questionnaire with you, and discuss how you can get the medical, physical and emotional support you need. 

1 U.S. Department of Health & Human Services, Informal Caregiving, Compassion in Action 
2 American Society on Aging, A Profile of Informal and Family Caregivers 

 

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