Caregiving For Alzheimer’s Patients: Is There A Problem? By Paul Susic Ph.D. Licensed Psychologist

As found in the April, 2005 Senior Circuit

caregiving for alzheimer’s patientStress in various forms may be found among the caregivers of individuals with dementia. Many caregivers attempt to keep their loved ones at home for a significant period of time prior to placement in a long-term care facility. While this is admirable, it frequently also takes a toll on the person with the primary caregiving responsibility. Some studies have found that as many as 50% of caregivers of individuals with dementia may be clinically depressed and in need of treatment. High rates of caregiver burden (which is another term for the stress which is unique to the caregiving situation) are very common, with most caregivers being distressed by the disruptive memory and behavior problems that are typical to dementia patients (e.g. repetitive questioning, incontinence, night-time wandering) and frequently report needing help to cope with these daily challenges. Researchers have found that the combination of the physical demands of caregiving, plus the psychological distress involved, put caregivers at risk for developing their own significant health problems. For example, it is a well-known fact that caregivers are less likely to engage in preventative health behaviors (e.g. regular checkups), and some evidence an increased dysregulation of stress hormones (such as cortisol) and/or compromised immune system functioning, with either potentially leading to serious health problems over time. One major study found that stressed spousal caregivers were far more likely to die within a four year period of time when compared to non-stressed spousal caregivers or to those of non-caregivers, versus those of a similar age and socioeconomic level.

The most typical caregiver of a relative with Alzheimer’s disease or other forms of dementia (e.g. stroke related, or due to late-stage Parkinson’s disease) is a middle-aged woman caring for one or both of her parents (or in-laws). She is usually married, with teenage children and employed outside of the home. The next largest group of caregivers is the wives of the demented individuals, who are usually over 70 themselves.

How can I relieve the stress of this burden?

The first thing that you can do is to realize that you do not have to do it alone. You should first seek the help of family members, church members or other supportive individuals to help or to least to allow you to take a break on occasion. Also, pay particular attention to self-care including eating right, taking time for exercise, sleeping as well as possible and getting regular physical checkups. It is important to understand that the physical status of the long-term caregiver may need to be assessed periodically, since the combination of long-term stress and limited self-care usually takes its toll on the physical health of the individual involved.

As with most circumstances in life, education is always important. Education related to specific disorders can usually be found by searching your local library, in the Yellow Pages or on the Internet. Organizations such as the Alzheimer’s Association provide opportunities for education as well as support groups for individuals sharing these same experiences.

Traditionally, caregivers have been referred to support groups for treatment in spite of their high-level of distress, due to the fact that they do not generally see themselves as ”patients” or “clients” needing help; rather they focus their attention on obtaining help for their spouse or loved one. The Alzheimer’s Association provides the largest number self-help groups for demented caregivers, with chapters all over the United States. They frequently have psychoeducational components along with support groups. There are no fees involved and you usually do not have to sign up for a specific number of sessions. However, a recent study compared support groups with a more structured skill building psychoeducational program and found the latter to be significantly better for improving mood, enhancing coping strategies and developing an improved ability to obtain additional help with the caregiving responsibility. Other studies comparing structured programming with support groups found similar results in teaching caregivers a variety of skills to better handle their negative emotions, the disruptive behaviors of their loved ones and becoming more empowered to cope effectively with this chronic stressful situation.

At the very least, take care of yourself, learn as much as you can about the related disorder, get some help and respite whenever necessary, get proper medical and mental-health assistance, and finally, ultimately recognize your limitations when you can no longer handle your loved one at home.