Care Giver Burden - An Overview

In their paper, (Associations Between Dysfunctional Behaviours, Gender, and Burden in Spousal Caregivers of Cognitively Impaired Older Adults), Dr. Pedlar and his colleagues looked at the burden on spousal caregivers in more than 100 dementia patient/caregiver situations. The overall physical, emotional and financial costs of caregiving are collectively referred to as 'caregiver burden'. "We know that caring for a loved one with some form of dementia is a very stressful and difficult thing for family members and that stress and isolation can significantly affect the primary caregiver," says Dr. Pedlar. "This study was undertaken to examine caregiver burden and to identify what can be done to prevent or reduce this burden."

Their study focused on a population of spouses caring for a loved one with dementia. The group found that increases in dysfunctional or problem behaviours, common in illnesses such as Alzheimer's Disease, was the most important factor in explaining increases in caregiver burden over a seven-month interval. In a commentary, the IPA awards committee stated, "Their results have enormous significance for the three million informal caregivers in Canada and some 15 million caregivers worldwide."

This study helped identify problem behaviours as a key factor in explaining why dementia caregiving is so difficult for family members. Problem behaviours are such things as aggressiveness, forgetfulness, repetitive behaviours, embarrassing behaviours, fears or paranoia, wandering, nighttime waking and sleep cycle disturbances. "The good news in all this," states Dr. Pedlar, "is that in many cases, problem behaviours can be managed."

Interestingly, the group noticed that change in burden was not related to the continuing cognitive and functional decline that they observed in their patients. This means that other factors such as a patient's increasing memory loss, increasing level of disability and changes in mood did not play a role in explaining changes to caregiver burden.

The study also looked at gender issues and found that men appeared to be more amenable to using outside services and to seeking outside help than did women. Dr. Pedlar thinks that attitude plays a big role in the area of service use and gender. In fact, he notes service providers, themselves, may fall into the trap of assuming that men need more outside help and interventions than do women, subconsciously seeing the role of caregiver as a natural extension of being a woman.