Alzheimer's disease and caregiving

The responsibility of caring for a loved one who has Alzheimer's disease can be daunting. Understanding the condition and the specific issues affecting caregivers can help you learn to cope successfully.


Understanding Alzheimer's disease
Generally, dementia is an impairment in mental functioning caused by the death, destruction or deterioration of brain cells. Alzheimer's disease is a type of dementia characterized by the formation of amyloid plaques and neurofibrillary tangles on and inside the brain cells. In fact, Alzheimer's disease is the most common cause of dementia among people age 65 and older. In some cases, conditions such as infarcts or "mini-strokes" (also known as vascular dementia), Parkinson's disease, Lewy body disease and Huntington's disease can also cause dementia.
Alzheimer's disease generally begins slowly and subtly. Sadly, however, the condition is progressive and irreversible. The cognitive decline associated with Alzheimer's disease often continues until the person is confined to bed, incontinent and unable to care for himself or herself.

People who have Alzheimer's disease and other types of dementia often experience sundowner's syndrome, which is characterized by increased agitation and confusion during the late afternoon and early evening hours. The person may become increasingly agitated at this time of day, often due to a sense that he or she is in an unfamiliar place and wants to go home -- even though he or she may already be at home. Wandering is most common at this time of day, as well as belligerence and possibly violence. Generally, people who have Alzheimer's disease require a higher level of care and supervision at this time of day.


Stages of Alzheimer's disease
Alzheimer's disease has four stages.
Early stage
In the early stage, neurons are destroyed in the parts of the brain that control memory. During this stage:

Recent memory loss may begin. The person may develop strategies to disguise memory loss, such as calling people by generic names.

The person may become absentminded or lose things.

He or she may have difficulty retaining new information.

He or she may have slight trouble finding the right word when speaking.

The tendency is to seek the familiar and avoid the unfamiliar.

The person may have trouble writing and using simple objects.

He or she may also become apathetic or depressed and experience moods swings and personality changes.

Reminders about routine daily activities may be needed.
Middle stage
The middle or intermediate stage of Alzheimer's disease affects the cerebral cortex -- particularly the areas responsible for language and reasoning. During this stage:

Alzheimer's disease affects the person's language skills and his or her ability to make judgments.

Personality changes are more common. Mood and behavioral disturbances are possible.

Memory of remote events is affected, but not lost.

It becomes more difficult to find the right word when speaking.

The person may engage in repetitive actions and have difficulty performing purposeful movements.

The person may get lost at times, even inside his or her own home.

The person may not acknowledge familiar surroundings or recognize distant relatives.

The person will need help with most routine daily activities, such as bathing, dressing and eating.
Late stage
In the late or severe stage of Alzheimer's disease, placement in a long-term care facility may be needed. During this stage:

Recent and remote memory is completely lost.

The person mixes up the past and present and fails to recognize familiar people and places.

Mood and behavioral disturbances become increasingly common.

The person may be unable to speak or interpret what's being said.

The person may be unable to walk or perform routine daily activities -- including swallowing or eating.
End stage
In the terminal or end stage of Alzheimer's disease, other areas of the brain begin to atrophy, or shrink. Total care is needed. During this stage:

The person becomes confined to bed, incontinent and unresponsive to the outside world.

The person loses any apparent link to the past or present and becomes oblivious to his or her surroundings.

The person may be silent or speak only a few incoherent words.

There's little spontaneous movement. Some people experience seizures.

Caregiver issues
As a caregiver, you may feel "sandwiched" between the competing demands of caring for your loved one and caring for the rest of the family. If you're employed, you may also feel pressure from the demands of your job -- particularly if your employer doesn't offer time-off policies or benefits that address the needs of caregivers.

Managing behavior changes
Behavioral disturbances such as agitation and delusional thinking increase the burden on the caregiver -- as well as the risk for depression and physical illness. For your sake and your loved one's, a strong support system is essential.

Out-of-home placement
Most people caring for loved ones who have Alzheimer's disease do so in their own homes. As the disease progresses, however, full-time nursing home care may be needed. This can be emotionally difficult and cause strong feelings of guilt. It can also present a financial challenge.

Making decisions
As your loved one's cognitive abilities decline, you may need to make important decisions regarding medical care, nursing home placement and related issues. This can be a struggle if your loved one realizes that his or her autonomy is being compromised and resists your efforts to make decisions. However, it's important to make legal designations now -- ideally while your loved one is competent. It may be difficult to establish surrogate decision-making power after your loved one has lost the ability to make competent decisions.
Contact an attorney or financial consultant to help decide which surrogate decision-making option is best, such as power of attorney, durable power of attorney or legal guardianship.

This may also be a good time to review your own legal status. You may want to write or update your will or establish a living will or power of attorney for yourself.


Symptoms
Caring for someone who has Alzheimer's disease may lead to fatigue or exhaustion. You may also experience gastrointestinal problems or sleep disturbances.
You may become angry, resentful or guilty. You may have regrets or fear an inability to handle future events.

Some caregivers feel pushed into the role by default or by less responsible relatives. Many feel trapped, irritable or impatient. Unresolved conflicts with your loved one or other family members may surface.

You may blame yourself if your loved one is unyielding, uncooperative or seemingly lazy. You may worry that you're neglecting your loved one or wish he or she would die. You may also wonder if you've done enough.

Some caregivers lose focus on themselves and their own lives. You may find that your caregiving role interferes with your roles at work, home or in the community.

Sometimes caring for a person who has Alzheimer's disease can be more than you're able to handle. Symptoms such as sleep disturbances, decreased energy, changes in appetite, anxiety, depression, inability to concentrate and hopelessness may warrant further evaluation by a health care professional.

As with all physical symptoms, consult your doctor to rule out a medical condition. If these or any other symptoms cause you distress that doesn't seem to improve, seek additional help from a mental health professional.


Coping
Learn as much as you can about Alzheimer's disease. Knowing what to expect can help you handle situations as they arise.

Take care of yourself. Be aware of your physical and emotional limitations. Establish a support system. Ask others to provide respite care when you need a break.

Be flexible at work. If the demands of caregiving cause you to struggle at work, discuss the options with your employer. Perhaps you can work fewer hours or follow a more flexible schedule. You may also consider a leave of absence. The Family Medical Leave Act (FMLA) allows public sector employees and employees of private companies with 50 employees or more to take up to 12 weeks of unpaid leave from work per year to care for a family member.

Consider other caregiving options. Adult day care or placement in an assisted living facility may be appropriate. If you're considering nursing home placement, look for a facility that offers a special unit for people who have dementia.