In my practice, I see families who are caring for a loved one who has dementia. This column will explore the basic phases of dementia, the stresses that caregivers go through and how to lower those stresses.
First, here are some facts.
People over the age of 85 are the fastest growing segment of our population. More than 65 million people provided care to a chronically ill, disabled or aged family member or friend in the last year.
In the United States, 6.5 million people are currently diagnosed with Alzheimer’s disease or a relative disorder. The average course of disease is eight years but can range from three to 20 years.
Dementia has three stages: early, middle and late.
In the early stages, 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 stages, however, the patient experiences confusion and disorientation, could have speech problems and will most likely need assistance with their activities of daily living.
In the end stages, 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 of the time. The caregiver frequently experiences depression, anxiety, anger and poor health (from stress and self-neglect).
There are 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 to 24 months of care at home before they enter a nursing home. Caregivers miss an average of 17 workdays per year because of caregiver duties. About a third of caregivers reduce their work hours or report being less effective at work.
A good part of the stress that caregiving creates includes the lack of control and predictability of the person who needs 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 illness. 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 the support system a way for caregivers to have an outlet for their frustrations.
- Encourage the caregiver to use outside support systems (geriatric care managers, 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 advocacy.
- Give the caregiver 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 healthcare workers to provide the 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 directives and powers of attorney in place.