In my practice, I see families who are caring for loved ones who have dementia. This column will explore the basic phases of dementia, the stresses that caregivers go through and how to lower these stresses.
First, here are some basic facts:
- People over the age of 65 are the fastest growing segment of our population (the baby boomers).
- More than 65 million people provided care to a chronically ill, disabled or aged daily member or friend in the last years.
- More than 5 million people in the United States are currently diagnosed with Alzheimer’s disease or a related disorder.
- The average course of the disease is eight years, but it can range from four to 20 years.
Dementia has three stages: early, middle and end.
In the early stage, the patient will experience forgetfulness, become socially awkward and can become lost in familiar settings. During this stage, the family can usually make up for these deficiencies.
In the middle stage, the patient will experience confusion and disorientation, could have speech problems and will most likely need assistance with their activities of daily living.
In the end stage, the patient becomes completely dependent on others. In most cases, patients live at home and their family members care for them. Usually, there is only one caregiver involved. Many times, the caregiver is a spouse or a child. In addition, most caregivers are over the age of 50.
Being a caregiver is extremely stressful. It is so stressful, in fact, that the healthy spouse dies before the spouse with dementia more than half the time. The caregiver frequently experiences depression, anxiety, anger and poor health (from stress and neglect).
There are also severe financial effects on the caregiver. Many become concerned with having enough funds to pay for their own age-related needs and use substantial resources to provide care.
According to the long-term care insurance industry, policy holders with dementia average 18-24 months of care at home before they enter a nursing home. Caregivers miss an average of 17 workdays per year because of caregiving duties. About one-third of caregivers reduce their work hours or report being less effective at work.
A good part of the stress that caregiving creates include lack of control and predictability of the person who needs the care, a loss of outlets for frustration or sources of support, a perception that things are getting worse and having feelings of not having what is necessary to meet the next obstacle.
Currently, there is no cure for dementia-related illnesses. There is no way to completely remove the stress that a caregiver experiences. However, there are ways to lessen it. Here are a few tips:
- Educate the caregiver about the causes symptoms and treatment of memory problems and dementia.
- Create a support system for the caregiver that gives lots of praise and reinforcement.
- Include in this support system a way for caregivers to have an outlet for their frustrations.
- Encourage the caregiver to use outside support systems (geriatric care manager, social workers, private duty association and others) so that the caregiver can have a break and, if the caregiver wants, make a transition from caregiving to care advocacy.
The last point is that the caregiver must have the tools to implement these strategies.
Some of the greatest stresses in dementia care results from the caregiver being unable to have access to the sick person’s resources to pay for care and the ability to direct health care workers to provide additional care the caregiver knows the sick person would have wanted. The way to do this is to insure all your loved ones have adequate advanced directives and a power of attorney in place.