Alzheimer's Caregivers: The Hidden Patient

When any chronic illness takes root in a family, everyone gets sick. But the one whose suffering is often equal to the patient's, and is often ignored, is that of the caregiver. Dementia caregivers in particular, often the partner, suffer physical exhaustion, emotional depletion, and chronic depression.


from Johns Hopkins Health Alerts:

Caregivers -- The Hidden Patients

Approximately 80% of dementia patients are cared for by family members. That's millions of family members who provide care for a parent or relative, many of whom must balance these duties with the demands of their full-time jobs and other family members. If you are caring for a family member or friend with Alzheimer's disease, this Special Report from a recent Johns Hopkins Memory Bulletin offers practical support and advice.

With our population aging and the number of Alzheimer's disease patients in this country predicted to steadily increase over the next two decades from 5.5 million today, the number of caregivers will have to increase as well. If you are not a caregiver already, the chances are high that you will become one at some point.

Studies that measure depression or distress in caregivers report that rates of these symptoms are two to three times higher in dementia caregivers than in the general population. Other studies reveal that social isolation and family disagreements are more prevalent in Alzheimer's caregiver families than in similar families who are not caring for someone with dementia. What kinds of emotional problems do caregivers of Alzheimer's patients have? Many experience a mixture of feelings, including frustration, sadness, anger, irritability, helplessness, guilt, and depression.

Being a caregiver for a family member or friend with Alzheimer's disease can be so stressful that doctors often think of caregivers as "hidden patients." Because caregivers are often faced with overwhelming day-to-day responsibilities, many stop going in for medical checkups, self-medicate their anxieties with alcohol, don't exercise, and eat poorly.

Not surprisingly, Alzheimer's disease caregiver stress takes a heavy toll. Caregiver stress and burnout symptoms are very similar to those of depression. They include:

• Denial . . . about Alzheimer's disease and its effect on the person affected. "I know Mom will get better. They must have made a mistake."
• Anger . . . at the person with Alzheimer's disease and others. "If he asks me that question once more, I will scream!"
• Withdrawing socially . . . you no longer want to stay in touch with friends or participate in activities you once enjoyed. "I don't care about getting together with the neighbors anymore."
• Anxiety . . . about facing another day with the Alzheimer's patient and what the future holds. "I'm worried about what will happen when I can no longer provide care."
• Despair . . . you feel sad and hopeless much of the time. "I don't care anymore."
• Exhaustion . . . you barely have the energy to complete your daily tasks. "I don't have the energy to do anything anymore."
• Sleeplessness . . . you wake up in the middle of the night or have nightmares and stressful dreams. "I rarely sleep through the night, listening to hear if Dad is out of bed."
• Emotional reactions . . . you cry at minor upsets; you are often irritable. "I cried when the grocery store was out of my favorite cereal. Then I yelled at the clerk."
• Lack of concentration . . . you have trouble focusing, and you find it difficult to complete complex tasks. "I used to do the daily crossword. Now I am lucky if I can concentrate enough to solve one quarter of it."
• Health problems . . . you may lose or gain weight, get sick more often (colds, flu), you may develop chronic health problems (backaches, headaches, high blood pressure). "Since the spring, I have had either a cold or the flu. I just can't seem to shake it."

If you're experiencing any of these symptoms, consider contacting an Alzheimer's disease support group, talking with your religious or spiritual leader, consulting with your primary care physician, or making an appointment with a counselor. Here are some good resources to consider:

• The Alzheimer's Association (225 N. Michigan Ave., Fl. 17, Chicago, IL 60601- 7633; (800) 272-3900). This fantastic group has been at the forefront of helping caregivers and supporting research for more than 25 years.

• Local medical centers. Some medical centers offer caregiver courses that teach practical techniques for managing the anxiety, agitation, aggression, and other upsetting behaviors that people with Alzheimer's disease may exhibit.

• Alzheimer's support groups. Alzheimer's support groups are great sources of helpful information, solace, and compassion. The other people in these groups will understand the complex and sometimes conflicting mix of emotions that Alzheimer's disease caregiving engenders, such as grief, anger, resentment, helplessness, embarrassment, guilt, despair, and even suicidal thoughts.

Living With A Partner Reduces Risk of Alzheimer's

(The following is the press release describing research from the Karolinska Institute -- one of Europe's largest medical universities, located in Sweden)

Living with a spouse or a partner decreases the risk of developing Alzheimer's and other dementia diseases. This according to a study by Krister Håkansson, researcher in psychology at Växjö University and Karolinska Institutet, Sweden. The results were presented for the first time yesterday at the world's largest dementia conference.

"This is, for me, an overwhelming start," says Mr Håkansson. "It's the first study I've done in this field, and the results are astounding. They indicate a very strong correlation between this type of social factor and the risk of developing dementia."

The new findings are based on data from a Finnish study, which was unique in that 2,000 people were examined at the age of around 50 and again twenty-one years later. Normally, dementia researchers only study late-life individuals. Previous research has shown that an active lifestyle, both intellectually and socially, can decrease the risk of developing dementia; since a shared life often entails considerable social and intellectual stimulation, the point of inquiry of this present study was whether living with a spouse or a partner can help to ward off dementia.

The results show that people living with a spouse or a partner in midlife ran a 50 per cent lower risk of developing dementia than people living alone, even when controlled for other risk factors, such as age.

How long a person had been single and for what reasons also affected the chances of developing dementia. Those who had lived alone their entire adult life ran twice the risk, while those who were divorced in midlife and remained subsequently single ran three times the risk.

Widows and widowers ran the greatest risk Those at greatest risk of developing dementia diseases were people who had lost their partner before middle age and then continued to live as a widow or widower. The study showed that the chances of developing Alzheimer's for these individuals were six times greater than for married couples.

"This suggests two influencing factors: social and intellectual stimulation and trauma," says Mr Håkansson. "In practice, it shows how important it is to put resources into helping people who have undergone a crisis. If our interpretation will hold, such an intervention strategy could also be profitable for society considering the costs for dementia care."

Love and Alzheimer's: How Do Couples Adapt?

An article in today's New York Times describes what could be either a tragic or a blessed aspect of the ravages of Alzheimer's. As the disease erases memory, patients who have been with their partner for years often stop recognizing him/her. For the well partner, this is perhaps the most traumatic aspect of Alzheimer's. Your partner is your mirror, reflecting back to you the shared memories of childbirths, of Hawaiian sunsets, of narrow escapes, of terrible disappointments, and of the thousands of spots of intimacy that dotted your lives together. When your partner forgets you, this mirror shatters, and you have to grow a new sense of self.

The article goes on to say that sometimes the well partner must watch the partner with Alzheimer's fall in love with someone entirely new -- someone who plays a role more associated with his/her current existence. The husband (who suffers from Alzheimer's) of retired Supreme Court Justice Sandra Day O’Connor found companionship with a woman in the nursing home in which he lives. For the patient, this new relationship, often with someone with similar cognitive impairment, is a blessing. This new person fits entirely in the patient's present -- no straining to remember what has been erased; no trying to please someone who is now a stranger. The patient can find a reflection of his/her current identity in the eyes of the new companion -- a reflection that asks no hard questions and accepts what is -- a hand to hold, a smile, a body to lean against.

For the well partner, Alzheimer's paves a path of chronic grief, spread out over years. Yes, along the way, there can be appreciation, love, even new forms of innocence and sweetness. I think it must be both a blow and a relief to see the beloved who has forgotten you finding comfort with someone new.

What do you think?

A Story about Alzheimers: Paul and Mary

The names and identifiers have been changed to protect confidentiality. The facts of the story are true.

Paul and Mary were soul mates. They were best friends, lovers, and enjoyed each other’s company above all else. Even after fifty years of marriage, Paul always greeted his wife with a kiss when he returned home from the office. These days, however, his eyes watered a bit as they lingered on her mismatched outfit and the cracker crumbs clinging to her shirtfront. He watched her float from room to room in the house now vacated by their grown children as if seeking sanctuary from the enemies that were slowly stealing her memory.

Over the next seven years she declined rapidly. She kept lists of the years of her life and the key events that occurred. She kept lists of the names of her grandchildren and children. Eventually she could not remember where she had placed her lists. She railed that no one listened to her or understood the word salad she spoke. She sat for hours in an arm chair, eyes unfocused, her nails scratching the fabric as if trying to claw her way out of a locked room.

As time went on, the daily care tasks became more difficult. Paul helped her bathe, get dressed, eat, and even use the toilet. As she started to wander the streets in her bathrobe, he began to bring her with him to his office. She sat in a chair, sedately watching him with empty eyes while he worked. His children were worried about the strain on his health.

One evening, Paul did not answer the phone when his daughter called. Alarmed, she went to the house and found both of her parents on the floor outside the upstairs bathroom lying with their heads touching. His face was contorted into a grimace, and his skin was pale and cold. Paul had died of a sudden heart attack. The daughter noticed a ring of white capsules surrounding his torso. She understood that Mary had poured a bottle of pills over Paul and then curled herself around his body, protecting him as best as she could. She was still alive.

Was Paul wise, or blinded by love and tradition? Was he noble or naive? We are tempted to impose our values onto this situation. Some of us may think Paul was heroic and hope that's how we would behave. Others may think Paul was foolish to take on such a high degree of caretaking responsibility - at the expense of his own health, thereby leaving Mary alone.

What do you think?

Here are a couple of good Alzheimer's sites for resources, medical updates, support for patient and caregiver:

http://www.healthcentral.com/alzheimers

http://www.alz.org